A Mad Pride Perspective on Borderline Personality Disorder

Emily Cutler
286
7008

I have spent a lot of time trying to convince myself and others that I do not have Borderline Personality Disorder.

It’s true that my fear of abandonment has been a driving force throughout my life. During high school, when I stayed up until the wee hours of the night studying, striving to earn straight A’s, everyone around me was shocked when they found out my end goal was not to get accepted into an Ivy League college. I stayed up late studying because I was terrified that my grades were the only good thing about me, and if I scored anything less than straight A’s, I would no longer be valued or liked by those around me.

You see, I’ve always been the weird, awkward girl. Growing up, I was that socially awkward kid with glasses, braces, and bushy curly hair who would not stop talking about Grey’s Anatomy or the original stories I was writing. I didn’t have many friends and was even sometimes bullied. My parents, who were well-meaning and wanted me to be happy, tried to help me fit in. They urged me to wear make-up and contacts and to style my hair. They implored me to talk about subjects that other kids my age were interested in. I tried. Contacts and make-up were horribly uncomfortable; I never really succeeded in figuring out how to stick to “normal” topics of conversation.

But I was successful in one area. I was a hard worker, I received straight A’s, and for that my parents were proud of me. For that I received praise from my family, my teachers, and even my classmates. So high school became a nonstop tightrope walk during which I was constantly living on the edge of my seat, terrified of scoring anything less than 100 percent, of not participating in enough extracurricular activities, and of not being the perfect student.

Sometimes, my own perfectionism, lack of sleep, and terror of not being good enough got the best of me. There were times when I became so overwhelmed that I would have meltdowns, crying hysterically and even screaming and scratching myself in public. Of course, this embarrassed my parents and those around me. I was sent to therapist after therapist and even put on medication to try to get my emotions under control. Nothing ever really worked.

So, on top of being weird and awkward, I was also emotionally unstable and a walking embarrassment to my family. I became so incredibly ashamed of who I was.

When I started dating my first serious boyfriend in college, that shame and embarrassment surged. I was absolutely convinced that I did not deserve him. How could someone like him — handsome, funny, well-liked — love someone like me — awkward, weird, unattractive, emotional?

Although things had gotten better for me in college — I had finally found a group of friends who accepted me for who I was, and I started putting less pressure on myself academically— when I started dating my first boyfriend, the feeling of walking on a tightrope returned. I became convinced that if I did not keep up my good grades, maintain a certain weight, keep my room clean enough, put on make-up every day, and maintain a calm, level-headed disposition the vast majority of the time, free from meltdowns or intense emotions, then he would leave. Because it felt impossible for me to maintain all of that, I began to hate myself. I felt like a failure. I started to have more meltdowns than ever and experience intense periods of suicidality.

I was eventually diagnosed with Borderline Personality Disorder, a condition usually considered to stem from a pathological fear of abandonment. The diagnostic criteria for Borderline Personality Disorder are five or more of the following symptoms:

  • Frantic efforts to avoid real or imagined abandonment
  • A pattern of unstable and intense interpersonal relationships
  • An unstable self-image or sense of self
  • Impulsivity in at least two areas that are potentially self-damaging (e.g. spending, sex, substance abuse, reckless driving, binge eating)
  • Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior
  • Affective instability due to a marked reactivity of mood
  • Chronic feelings of emptiness
  • Inappropriate, intense anger or difficulty controlling anger
  • Transient, stress-related paranoid ideation or severe dissociative symptoms

I was told that I exhibited frantic efforts to avoid abandonment, an unstable self-image, recurrent suicidality and self-harm, emotional instability, and inappropriate anger (this last “symptom” was in part due to my anger toward the mental health system).

The idea that not only was I weird, awkward, unattractive, and overly emotional, but also had a disordered personality, only exacerbated my fear of not being good enough for those around me. Who could ever love a girl with a disordered personality?

I spent a long time trying to deny that I fit the criteria of Borderline Personality Disorder. Wasn’t my fear of abandonment, to some extent, universal? After all, who can’t relate to the Cool Girl monologue in Gone Girl? Who can’t relate to the experience of wanting so desperately to be loved by another person, and being willing to do almost anything to receive that love, to feel deserving of that love? The line between our universal fear of abandonment and a “pathological” fear of abandonment — Borderline Personality Disorder— felt all too subjective to me.

When that first serious boyfriend left me, in part due his embarrassment of my meltdowns, I felt such intense self-hatred that I sliced my arm up and down with a razor. Again came the pathologization of my reaction, the diagnosing of Borderline Personality Disorder. But wasn’t my self-harm a natural reaction to that situation? I wondered. I thought back to my first hospitalization, where my roommate had been locked up due to saying she wanted to drive off a cliff after walking in on her husband kissing the babysitter. Don’t most people at least wish to do something drastic after being betrayed or abandoned by a loved one?

To me, those questions are important and valid. The work of scholars, researchers, and survivors who ask these and other questions to challenge the validity of “personality disorders” in general no doubt serves an essential purpose in the field of critical psychiatry. But I’ve also begun to think: even if Borderline Personality Disorder were a valid construct, does meeting the criteria for the diagnosis necessarily mean something is wrong with me? Does that necessarily mean my personality is disordered and I need to learn coping skills to recover? Could it possibly say more about society than it says about me?

Implicit in the diagnosis of Borderline Personality Disorder is the assumption that healthy people do not need the love, acceptance, or approval of other people — or at least not to the extreme that “borderlines” do. In response to my self-harm incident after my first break-up, a therapist said to me, “If you were healthier, you wouldn’t have reacted so destructively to being left. Most people in that situation know that they will be just fine on their own.”

We are constantly told that we need to love ourselves first and foremost, before anyone else can. We need to feel comfortable and even thrive being alone; we need to love being single.

In our society, we are becoming more and more accepting of the aromantic community — people who do not experience romantic attraction. And that is absolutely wonderful to see. What if, similarly, there are some people who just prefer being in a romantic relationship? Who are not so comfortable or able to thrive on their own? What if there are people who do crave the acceptance, approval, and love of another to feel truly fulfilled? Who gets to decide whether that’s pathological?

Wouldn’t it make sense for those people to feel the pain of abandonment more strongly, and to fear that abandonment more deeply?

Maybe it is true that during a break-up, most people know that they will be just fine on their own, and therefore do not experience self-harm or suicidal thoughts as a reaction. But, as I have learned from the neurodiversity and Mad Pride paradigm, the fact that a trait is shared by the majority of people does not make it a healthier trait than one that is shared by a minority of people. White people are not healthier than people of color; straight people are not healthier than gay people; people who speak English as their native language are not healthier than those that speak French or Italian.

One therapist said something else of interest to me: “If you were healthier, you would have the confidence to know that you will easily find someone else.”

I began to wonder what that statement would mean for someone in a marginalized or oppressed group of people. There are so many traits and characteristics we are taught to fear and look down upon in others. There are so many people who cannot just “find someone else” easily. For some people, finding a friend who accepts them for who they are is difficult enough; to find someone who accepts them for who they are and shares a romantic connection may well seem next to impossible.

I thought about my friends in the Autistic community, who share many of my experiences being seen as weird, awkward, and overly emotional. Most Autistic people spend their whole lives being told they need to act more normal and try to fit in. They are looked down upon, condescended to, and even punished for their way of processing and responding to the world. Most of us have been teased and ridiculed throughout our whole lives and struggle to find people who aren’t prejudiced — who don’t see us as weird (or who like and respect our weirdness). To say that we should “have the confidence to know that we will easily find someone else” is, frankly, to say we should be delusional.

In fact, people with a variety of disabilities are often pitied and seen as inferior. Partners of disabled people are sometimes asked if they are “settling.” “You know you can be with someone normal if you want to, right?” they might hear. Or, “Is it hard to take care of someone like that? I’m sure that must be a big burden on you. Are you sure you want to deal with that long term?” In this way, so many nondisabled and neurotypical people are conditioned to see disabled and neurodivergent people as burdens; neurodivergent and disabled people are conditioned to see themselves as inferior and not deserving of love.

I wondered if mental health professionals would make that same statement to a person of size. People labeled “overweight” and “obese” are taught to hate their bodies and view themselves with disgust; they are subjected to relentless and pervasive fatphobia and sizeism. I can count the number of people I know on my hand who are even open to the principles of the fat acceptance movement. How would it possibly be fair to tell a person of size that if they were mentally healthy, they would have the “confidence to know” how easily they will find someone who not only accepts them for who they are without fat-shaming them or encouraging them to lose weight, but who also shares a romantic connection with them?

For most of my life, I have been seen as weird, awkward, emotionally unstable, and unattractive. My parents felt embarrassed of me; my classmates made fun of me. When I started dating my first boyfriend, it was my first real experience of not being seen that way by someone so close to me. It is only natural that I would react so strongly, with such an intense degree of pain, to his departure. And it is only natural to continue being afraid that this type of abandonment will occur again.

I accept that I may fit the DSM’s criteria for Borderline Personality Disorder. I am not trying to say that this does not come with challenges and obstacles. I acknowledge that I have things to work on. While I may not feel completely comfortable or fulfilled while I am single, there are times when I may need to accept being single temporarily. While I may feel intense amounts of pain after a break-up, I will need to learn how to deal with that pain in a way that does not make romantic partners feel pressured to stay with me in order to prevent my self-harm.

But I also believe it is important to acknowledge society’s role in the creation and construction of Borderline Personality Disorder. As I described society’s treatment toward people in marginalized groups to one of my best friends, “First, they tell us we’re weird, disgusting, a burden, and undeserving of love. Then, when we’re scared that it’s true — that no one will love us — we’re told that we’re crazy, and if we were sane, we’d be 100 percent confident that we won’t end up alone, or, alternatively, that we wouldn’t think of ending up alone as a bad thing. Finally, because we’re truly crazy, we’re further marginalized, and told that we’re even more weird, disgusting, burdensome, and unlovable. And the cycle continues.”

I would be lying if I said I was proud of myself for possibly meeting the criteria for Borderline Personality Disorder — on the inside, I still feel far too much shame and fear over not being what mental health professionals consider normal or healthy. But I am also working toward a place of accepting myself and rejecting the message that anything is wrong with me (well, that something is more wrong with me than the average person!).

One thing is for certain. Ten or twenty years from now, if I do find myself in a stable, loving, committed relationship with someone who accepts me for who I am — and I know that’s a big “if” — I will not take it for granted. And I would not trade that for anything. I would not trade that to feel less pain after a break-up or less desire to be in a relationship. I would not trade that to be the cool, unattached, self-sufficient, composed, levelheaded woman idealized by Marsha Linehan, DBT, our society, and the DSM. That would mean trading in my own personality for someone else’s. For better or for worse, I plan to remain myself.

Previous articlePsychology’s Power Tools
Next articleReading ‘Girl, Interrupted’ in the Psych Ward
Emily Cutler
Emily Sheera Cutler is assistant editor and community moderator at Mad in America. Ever since her involuntary hospitalization at age 20, she has been passionate about fighting for the civil rights of people labeled mentally ill. Emily received her BA from the University of Pennsylvania, where she wrote an Honors Thesis on weight bias in the education system. She currently resides in Los Angeles, California.

Support MIA

MIA relies on the support of its readers to exist. Please consider a donation to help us provide news, essays, podcasts and continuing education courses that explore alternatives to the current paradigm of psychiatric care. Your tax-deductible donation will help build a community devoted to creating such change.

$
Select Payment Method
Personal Info

Credit Card Info
This is a secure SSL encrypted payment.

Billing Details

Donation Total: $20

286 COMMENTS

  1. I don’t care how you behaved or thought. Personality Disorders are the most egregious and defamatory labels that exist in psychiatry.

    It doesn’t matter even if someone is a serial killer. There are ordinary everyday words for such a person. “Criminal, “serial killer” etc.

    People should be encouraged to stand up and take some form of action collectively against psychiatry and more importantly the labelling psychiatrists, if they have been labelled with that junk.

    However, if someone is using such labels against you, you’d be doing a good job using it back against them.

    P.S. What the hell is ” ‘Mad’ Pride”. Why even call yourself “mad”?

    • Emily,

      Wow, just wow. What an amazing piece. As I claw my way through one of my worst waves of benzodiazepine withdrawal syndrome, which has changed my physiological personality entirely (I think the real me is still in here somewhere)– I have continued to reflect on my authentic personality which has been labeled with BPD. I know now looking back that I did live with the symptoms of BPD and I’ve tried to examine those symptoms even from this extremely compromised state. I would say I am almost forced to pick them apart in this benzo injured state as one of the the symptoms of benzo injury is obsessive self reflection.

      The conclusion that I’ve come to is that these symptoms do make me different. But that doesn’t mean I am wrong or fucked up. I was reading over your article saying “yes, yes, YES!” Society is painful man. People in groups can be cruel (It’s even supposed to be “funny” in a show like Parks and Rec). The standards for partnership and friendship can be really grueling and painful. I’ve almost never liked groups of 3’s. I always feel like the person cast out.

      I suffer/ed more from the mind reading stuff, and the punishing instinct. Which I have never been more self-aware of and on top of in my life. I do think this is me though– I’m not sure what that means, but I’ve always felt this way. That groups are lonely and that people will leave you. And that certain mistakes shouldn’t happen. But now I know that I am this way, and I take responsibility for it, and can make strong ethical choices to be healthy with people. A lot of it has to do with coming to the awareness of possibly being wrong about an argument. If only there was a magic bullet to get you there as fast as possible.

      Thank you for writing this. Wish we could connect on Instagram or something. I’m @ScoutSeas

      • *I forgot to mention the main part of my experience is that normal interactions, rejection, even being made fun of for me sometimes feel like I’m dying. I would prefer to think of myself as suffering from trauma then disordered. I’m disordered because I feel pain so acutely? Who is to say we feel pain incorrectly? You’re right– it’s totally subjective.

        • Ally that sounds like something people go through in life that’s very temporary UNLESS they fall into the BPD trap. The diagnosis seals these behaviors and emotions, crystallizes them as permanent, like putting them on display in a museum forever and ever. So now speculators ooh and ahh at what they see before them. But it isn’t you. It’s a fake. It doesn’t move, it doesn’t change nor budge on its pedestal. It’s their fictional account of you, an impression, a caricature.

          • I totally hear what you’re saying–but please understand me when i tell you I have been this way since I was a child and it has only intensified. I hadn’t heard the expression BPD until I was 22. I have been lead down the path you are talking about with other diagnosis– but the (symptoms) of bpd are as intrinsic to me as my eye color. I am so easily hurt by life that it’s sometimes hard to function. And now that I’m drug injured I hardly function at all.

            I think it’s okay to own the symptoms of BPD as your bag of rocks and ask yourself, okay knowing this, how will I become
            as self aware as possible of my pain so that I’m not a reactionary person. It’s okay to have extreme pain–it’s not okay to take that pain out on others. Denying I have these symptoms would hinder my ability to form a more nurturing relationship with them so that i can be a better friend and partner.

        • Hi Ally-
          I am dealing with the realities of being someone whose pain tolerance differs markedly from most others’. I have a very high tolerance to physical pain. Sensations that would register as quite painful for most people don’t hit me as “pain” until the problem is severe. For instance, I’d been having headaches that I thought were migraines, very light-sensitive and would go away after lying down a couple of hours. I avoid docs whenever possible, but had to go in when I started to notice a change in vision. My eye pressure was over 400% above normal that day and was only beginning to feel “pain” so I run the risk of missing pain cues that would alert your average person that something is terribly wrong. (Consequently, I am now blind in one eye.)
          My sensitivity to existential pain, though, is on the other extreme. It makes me different; it does not make me disordered. It does, however, make it difficult to feel at all understood by those who seem to experience pain “normally.”

  2. Psychiatry’s diagnostic criteria is the same as religions diagnostic criteria, where religion has vices and virtues defined. Psychiatry sells drugs for its judgements of disease, in religion the sinner/patient might give money to the church to try to find forgiveness/atonement.
    Psychiatry writes your sins down on paper never to be forgotten, while in religion it is up to the individual to remember or not remember their failings . Patients have to make a request for their psychiatry files, not given information, they have to figure out what is “wrong” on their own while the “doctor” watches and laughs.

    That 70’s Show – Eric and Donna’s Revenge
    https://www.youtube.com/watch?v=udlCddXffeo
    Transcript.

    Eric and Donna are still in the basement

    KELSO (coming down the stairs): Okay, you guys. That was a wicked burn. It had all the elements: You didn’t see it coming, parts of it really hurt…

    ERIC: Well, Kelso, I’m glad you enjoyed it.

    KELSO: Oh, I did (2:34 EATS ANOTHER DRUGGED BROWNIE) I got my eye on you two. You’re not gonna burn me like that again.

    DONNA: I love our friends.

    ERIC: Me too.

    The character Kelso at the end of this is the average patient on psychiatric drugs. The doctor keeps prescribing the drugs and laughing.

      • Very nice article, Emily. And thanks for sharing. To add a complementary perspective on the issue, Borderline Personality Disorder is a diagnosis overwhelmingly given to women. And why? Because women generally are more emotional (read more in touch with their emotions) than men, and it is men with power (e.g., psychiatrists) who name what is and what is not “normal”. And who else gets this diagnosis? Men who are similarly more emotional (read: like the disparaged gender). In other words, we are also looking at sexism here.
        Of course, you should remain yourself, Emily. Besides that you are terrific, who else but you could you be authentically?

  3. The label is a money making exercise and no ‘professional’ you will see gives a damn about your circumstance, only people who truly care about you, do. Therapist, doctors – what ever – so long as you give them money.. they are about getting you back to them for more money to them or some slimy creepo trying to his leg over. It’s fraud, like all effective fraud, it uses authority and hierarchy to implement – the victim looks up to the perpetrator and gets fucked over. So fuck the DSM.

    Years ago I had a IV of magnesium to sort out my terrible migraines, some where in North Carolina US during a visit to a relative. Not only did it sort out the migraine, it calmed me down a whole heap. The cost was a crazy ripoff – made me value the NHS – but totally worth it. So I studied the role of magnesium in the brain, it is quite profound.

    • It wouldn’t have been Fred Klenner by any chance, who died around 40 years ago? He was a GP in a small NC town many years ago, who was into that kind of stuff and was a big apostle of megascorbic acid treatments for virus diseases and snakebites.

      • Oh they made sure I saw a very attractive young woman, who, whilst bending towards me to put the IV in, made sure there was ample bosom going into my eyes. It was about 10 years ago, the good thing about it was that worked very quickly – the IV you understand – and hence, made me research why. The rip off is that you do not need an $2000 mag IV. Just take magnesium citrate 100mg orally, very little migraine, face neuralgia and anxiety under control.

  4. Thanks wo much Emily for sharing your story. It has never made sense to me as to who gets to label who, or who decides what personality traits are normal. I am so glad you have decided to believe in yourself and your own deep emotions.

  5. Emily, I love you for who you are, the stand that you take, and how you express it. Your article is so deep on many levels. Thanks.

    In this insane world, crazy is the new normal. You can quote me on this one.

    Just look at some of the quotes by MLK, Jr. to see the role that “deviants” have in changing society for the better.

  6. Emily,
    sometimes I wish this website could see the black and white fallacy to which it’s falling victim. When I read your very moving story, I don’t see a young woman with whom something is ‘wrong’ per se. I don’t even see it with my wife/my girls who have d.i.d. But that doesn’t mean I have to take the opposite view and say NOTHING is wrong.

    So many of the things I read in your story and my wife’s life and others that I read are simply attachment needs that aren’t being met and so they express themselves in all these diverse ways. I do believe our culture is the main problem with its neurotic need for independence complicated by its hedonism and narcissism. Everyone one wants to point to Trump, but I just read another article that boo hoo-ed about us spouses who are willing to stick it out in marriages that are less than satisfying as if something is wrong with us for not being as hedonistic/narcissistic as they are.

    It IS hard, Emily, living with someone who has extreme attachment issues. But that doesn’t mean I have to tell my wife, constantly, about it. I’ve learned to voice the pain that her issues cause me without trying to make myself look like a martyr OR without trying to make her feel badly for it. It’s just ‘what it is’. She didn’t ask for this, and I have chosen to remain with her because I love her and want to see a win/win solution, and so that means I choose the pain that her d.i.d. does cause me each and every day. It’s the d.i.d., not her something that she chooses, and so that’s how I keep from venting on her what she can’t control and didn’t want or choose.

    Anyway, it’s complicated. It’s NOT black and white. There’s nothing wrong with you for needing a ‘safe haven’ or ‘primary attachment figure’ or the affect regulation one can provide. The various things you experienced was just your mind screaming to be securely attached to someone safe, loving and protective when you were experiencing the anxiety, panic and fears. We ALL need it, but in this toxic culture where independence is valued over interdependence, I do understand how hard it is to find that even when you have loving family members because they have been filled with the same toxic message and so they don’t realize how much we each must unlearn what was pounded into us from birth.

    I wish you well.
    Sam

  7. I hate the term Borderline Personality Disorder. A young woman can drive her boyfriend away by being clingy, then make a suicidal gesture and get branded for life! How the H___ is that supposed to help you or others like you, Emily? You CAN change and learn new ways of thinking.

    You can wear a t-shirt that says “Borderline Personality Disorder” in public if you like, but I doubt it will reduce “stigma” or sanist discrimination. People will just treat you badly.

    If I trip and stub my toe, do I have Clumsy Toe-Stubber Disorder? Should I self-identify as a Clumsy Toe-Stubber?

    Sticks and Stones may break my bones,
    But names can crush the spirit!

    I used to “have” BPD and cured myself, despite psychiatry. They will no more pronounce us cured however than Jalvert would ever acknowledge Jean Valjean to be anything but a thief in Les Miserables.

    I’m not into revenge anymore, but I don’t hang around Dr. Jalvert and let him tell everyone, “Once a bipolar BPD, always a bipolar BPD.” Nor do I point at myself and self-defame in pubic.

  8. Borderline personality disorder is not a real disease, it’s a defamatory DSM label, primarily used to label child abuse victims. Today “the prevalence of childhood trauma exposure within borderline personality disorder patients has been evidenced to be as high as 92% (Yen et al., 2002).”

    I hope, and have confidence, that as you mature you will learn to accept yourself, and reject the message that anything is wrong with you. You are right, everyone has insecurities of some sort or another. And I hope it won’t take long for you to realize you’ve already matured into a very pretty young lady, judging from your photo. Best wishes.

  9. Many thoughts on your article, Emily. First off, thanks for putting yourself out there. That’s very brave, especially in light of how your young life has handed you experience after experience that naturally produces a greater sensitivity to abandonment, and greater pain than everyone else seems to feel within that universal experience of existential loneliness. Life dealt me that kind of hand too, so I get it.
    “Abnormal” is such a powerful toxin, and anybody trying to sell anything (a product, an ideology, a lifestyle) uses it as a tool of control. Get people to feel that they are lacking, and you create a need. Narrow the definition of “normal,” and you create that need in more of the population. Did you know that before psychologists got involved, advertising was basically just product info? Psychologists introduced the idea of creating an emotional need for the product by making people feel inferior without it.
    The only way to take the teeth out of “abnormal” is to not assign the power to define what your normal is, but keep a firm hold on that power for yourself, the power to self-define. I read the other day that the official definition of high blood pressure is tightening. 120/80, once the definition of normal, is now on the border. Same thing with the blood glucose number a few years ago, when overnight 140 became borderline. You must ask yourself: who gets to define your borders? Who has the authority to decide whether you are “normal” or not, and in what respects? Will you give that power to a doctor? a professor? a researcher? an ad firm? I choose not to.
    One more thank you, and that’s for referencing “people of size.” I learned long ago that language matters, words matter. I watched the gay community reclaim words of hate, thereby depleting their power to inflict harm. My body has a substantial layer of fat. Yup. And most people are put off by that, romantically. But I do not have to agree with them that I am unattractive. Whatever put-downs were leveled at me in my formative years did enough damage at the time. I do not need to continue the abuse by agreeing with those destructive messages. Neither do you. Even if nobody else in the world (including myself 30 years ago) appreciates the ample flesh on my upper arm that sways when I wave at someone, I do. Is it the defined bicep I find so sexy on women like Michelle Obama? Hell no. But it is always a pillow if I need to nap on a long drive, for instance. It is a part of me that I can love for what it is, rather than be ashamed of for what it’s not. I invite you to try on those lenses in your own life. Flip the script and be the author.

  10. No there is no such thing as BPD, or any other mental illness.

    Having to attend muggle schools is in itself a form of abuse.

    When someone’s social and civil standing has long been denigrated, they will have trouble in lots of other areas. The worst are always intimate relationship, career building, and to some extent post secondary education. The reason for this is that these pertain to finding one’s place in the world. Also, people do discriminate on personal bases in employment, and all the more so in intimate relationships.

    Ones social and civil standing begin to be restored when someone starts to fight back against these sorts of marginalizations.

    But so long as one is dealing in Therapy, Recovery, or Motivationalim, one is still swimming in that realm of secondary abusers, using the idea that you have some sort of disorder or defect.

    The alternative is political consciousness raising and political activism.

    Start putting some therapists out of business.

    Get our government out of the Recovery Movement ( prisons, courts, public health dept’s. )

    Find ways to hold the original abusers responsible.

    Change the ways our schools operate.

  11. I have spent a lot of time trying to convince myself and others that I do not have Borderline Personality Disorder

    Why would you waste so much time and energy trying to disprove something that’s non-existent to begin with? Or to put it otherwise, why would you even give the time of day to anyone who would be so contemptuous as to dismiss your most intimate feelings and perceptions as “symptoms”? Terms such as “BPD” are nothing more than slurs, and to try to argue that you “don’t have it” reinforces the notion that “it” exists. Plus it’s the equivalent of arguing “no, I’m not a n***** ” I think in light of what happened with Matt that it is vital for us to understand the importance of purging this poisonous “disease and disorder” nonsense from our psyche, not just on an intellectual level.

    Your feelings, perceptions and suffering are “normal” in a toxic culture. I think that’s the best framework from which to start dealing with it all. Do we want to torture ourselves trying to “adjust” or should we be searching for a system that fits OUR needs?

  12. MAD UK GENERAL MEDICAL COUNCIL ALLOWS “MH” DIAGNOSIS FIDDLING

    On November 5 2012 Dr Simons of Newton Medical Central London gave me in writing the Removal of Diagnosis of “Schizophrenia” when I demonstrated to him the Suppression of Suicidal Reaction to Modecate Depot in Ireland ; and my Longterm Recovery as a Result of coming off this drug.

    On December 13 2012 I discovered that Reference to “Schizophrenia” Diagnosis had NOT been removed from my Records; and I complained to Newton Medical.

    In Response I received a letter from Dr Simons dated January 14 2013 stating that it was not a GPs job to Remove “Schizophrenia” Diagnosis.

    I complained to the UK General Medical Council in writing on April 2 2013 about this, and I provided the necessary documentary evidence to back up my case.

    On May 17 2013 the UK General Medical Council, stated in a letter to me, that they were NOT going to investigate my Complaint because they didn’t think the issues, raised concerns about Dr Simons “Fitness to Practice”.

    (I have documentary evidence, to back up what I’ve said here).

    • Rodger that on the GMC. I had evidence of outright lying by a consultant psychiatrist on the trusts own letter headed paper. The truth of the matter is that if you have a MH label especially one of Schizophrenia or BPD, pretty much no one, especially a doctor believes you. In fact they will use what you have done to validate their diagnosis/opinion of you. MH label = abuse of human rights. I like the fact that you have taken to naming people and the medical centre. I stopped my complaint to the PHSO, the procedures are more like a placebo. The best I could do was put my experience on the NHS Choices website. We are nothing in their eyes. What is required is wholesale paradyme shift with money taken out of the health care situation. That people help other people by sharing their knowledge and experience without financially corrupting incentives. What we are up against is neoliberal globalism and the likes of the ‘charity’ Common Purpose… used to quietly implement it, at least in the UK.

    • MAD UK GENERAL MEDICAL COUNCIL contd.

      My GMC Complaint Ref No.
      was NW/1-AX34X6

      The GMC Decision Letter Ref No.
      was NS/1-AX34X6

      Ms Samantha Mills signed off the GMC Decision.

  13. “wasn’t my self-harm a natural reaction to that situation?”

    no. your emotions were the natural reaction. the self-harm was the failure to allow the pain.

    and I don’t mean to play down the intensity of the pain.

    thanks for writing this. that you are reconfiguring your experiences and giving them a social context is great to witness. truly. my hunch is you are going to do well. youre going to be okay.

  14. Emily:

    I agree that it is generally only in society’s interest, rather than the individual’s, that its members are socially conformist. And if being socially conformist now means being insensitive, emotionally detached and inexpressive, and only superficially connected and dependent on other people, then our society has become itself ‘sick’, and it is in our as well as our society’s best interest that we don’t conform, and encourage others to also resist. It seems to me that despite your struggles (which have clearly made you insightful, caring, resourceful, and capable), your family must have raised you well for you to turn out the way you did. I hope they are proud of what you are doing to help reverse the bad direction our society is heading, and I hope you continue to provide such touching, meaningful, intelligent contributions.

    Lawrence

  15. I’m going to disagree with you.

    Please be aware that my mom also fit the criteria for ‘borderline personality disorder’ and I think of my mom as a major traumatiser.

    Now, first I need to point out that ‘BPD-Lifestyle’ is extremely toxic and dangerous for the kids if you have any, however even typical neurotypical parenting is extremely toxic and dangerous and the best thing that you can count to be a Winnicott’s ‘good enough parent’ the kind of parent who wouldn’t create serious mental illness or serious drug addiction or a serial killer.

    Second – I don’t by the idea that all neurotypicals are ok with breakups, etc. Most of the neurotypicals are actually pretty codependent.

    Third – abandonment issues, manipulation and search for drama (‘fear of mundane’) – are all different kinds of childhood trauma. Of course we should accept the person. But I myself for example was a pretty paranoid person. And it’s absolutely ok to be a paranoid if you are in prison or in a concentration camp. My childhood was a concentration camp – constant tension, constant stress, constant drama.

    But when you grow up being paranoid most of the time is absolutely inappropriate since your model of world is not in accordance with real world. The same with abandonment issues – like you mention your boyfriend, well, does abandonment from this particular person was so awful and devastating experience? Probably not. The fear was much stronger.

    So the borderline personality disorder from my perspective should be regarded as some chronic disease like having heart issues – it’s your heart, nobody forces you to take any drug, but you kind of have a problem and you’d better do anything about it.

    • If you read Emilys replys, some how, I don’t think she would be an abusive nightmare to be around.

      My father is a very challenging person to be around, no doubt he would have a significant MH label, but I would never agree to him being drugged off his feet and shut-up out of his mind. One form of abuse doesn’t justify another, and far greater, by the state. We have worked out how to manage him, without label, patronising or belittling.

      • Of course he shouldn’t be drugged off. Nobody ever should.

        What my point is – you probably should receive good quality long-term psychotherapy but you can’t do it by force.

        I’d say I have some kind of split in relationships towards BPD diagnosis – I’m full of empathy, some of the people I’ve known with that diagnosis are extremely great.

        But my whole attitude changes (probably because I’ve been studying childhood trauma too much) when you have kids – your job is not to affect your kids with any kind of your own stuff ever. Either fix yourself or don’t have kids. You just not allowed to.

        • Well, I’d have to disagree. Crap happens to us all. When we insist on this ‘sanitized’ and romanticized view of childhood, we create a lot of the hedonism and narcissism that I see so prevalent in the western cultures and why we have so few, mature adults.

          I’m glad I involved our son in my wife/his mother’s healing. I never made him do more than he was willing, but I set the tone in the family to treat her with respect and dignity even as her symptoms plunged all 3 of us into all the variety of symptoms and situations that come with dissociative identity disorder (multiple personality disorder). I reject the notion that children should be protected from their parents’ issues. That just fuels this culture of abandonment where if someone has ‘issues’ leave them rather than stick it out and help them.

          I’m sorry for your very painful experience, but it doesn’t have to be that way, and I’m glad I chose to make my wife’s healing a family experience rather than just something she did on her own or even something that we did as a couple.
          Sam

        • I see this eugenic–no kids–solution as extreme, to say the least. People should not take it so to heart when they’ve been insulted by psychiatry, and they definitely shouldn’t let it ruin any family life they might have.

          I am concerned about this, more or less, identifying with “BPD”. If “BPD” “symptomatically” is a checklist of items, 5 out of 9, unchecking items on the list lessens the degree of concern. A first requirement for ‘acting’–assuming other identities–is not taking oneself so seriously. In this sense, the “BPD” dramatic persona has a lot to be desired, and you might consider other roles.

          Ten or twenty years down the line is entangled in this affair with a projected ‘significant other’. One could indeed call it a ‘significant other project’. This is certainly not a matter of living in the here and now. I question, in this matter, 1. your sense of self-importance, it seems inflated, and 2. this destiny one might call tied to the “approval of others”. One could say, in line with the “BPD” insult, that you have “attachment issues”, but the problem is not simply that you’re too ‘attached’, the problem is that you’re not ‘detached’, that is, aloof enough. The world in this revised scenario need not end when your relationship is over. You can shrug, and go on.

          • In no way I’m pro-eugenics. But given how many things can go wrong, you should be confident in your mental state and your judgement. I wouldn’t allow even healthiest people to have kids without intensive psychotherapy.

            I do think that raising a healthy kids is extremely difficult job which you can compare to successfully running a big enterprise.

            From the diagnostic standpoint I’d say that if you match 5 out of 9 criterias you are not ‘BPD’ but you are probably have 5 problems (maybe different, maybe interrelated) and that you are probably should take care of them.

            It shouldn’t stop somebody from having kids but you shouldn’t then lie to yourself that you’re not responsible.

          • “Ten or twenty years from now” is way too long to contemplate. You will have plenty of time to “sell out” in if that’s your aim, but if not, not. Otherwise, you could come to a mangled conclusion in a car crash tomorrow, and there goes “ten or twenty years from now” anyway.

            People have lost jobs, housing, and anything you might call everything, at this very moment in time. People hit the skids, no doubt about it. Thing is, if you were to hit the skids, to come back. Dumpster diving is not for everyone.

            I’m just saying a bit of perspective helps, even at a low point. I didn’t eulogize Matt Stevenson that much. I was shocked when he killed himself. Same label, same problem. I’m not a person to say don’t get “triggered” because that’s not my language. We are a speck of dust on a speck of dust in the context of everything else. There are billions and billions of stars out there, each with a potential for harboring life, that’s perspective. It’s not like the universe revolves around me or you in particular. It doesn’t. If anybody experienced disappointment in love, believe me, they aren’t the first, nor are they going to be the last. In other words, “Yea, though I walk through the valley of the shadow of death”, etc., tomorrow is another day, and there will be light.

          • “We are a speck of dust…” I’m stunned to find this on MIA. I was also stunned to hear that Matt Stevenson is gone. I knew him only via email as a very caring, empathetic person. If we really were just specks of dust, then who cares if we take drugs or not? If we live or die? That’s your belief – it sure isn’t mine. Maybe this is the dichotomy between East and West. East is all about trying to disappear into the nothingness; West is all about the value of the individual. That’s a crude simplification, I know, but there is truth in it. When psychiatrists and anyone else want to reduce us to specks of dust, then why bother with MIA? Why try to figure out this riddle of life? Why worry if you’re drugged and can’t feel emotions – after all, the Eastern ideal is something like being “above” all that “petty mundane” stuff, isn’t it?
            Yes, Emily is taking herself very seriously. She should! I’m sorry – you can’t just ridicule someone’s entire outlook on life and condemn them for thinking that there is something inherently valuable about being here and thinking that it’s significant enough to try to get it right.

          • The old dis-proven view was that the earth was the center of the universe, and that the sun and the other planets revolved around it. Only in the 20th century did we get around to figuring out that we are on a planet circling a star in a galaxy among millions of galaxies containing countless other stars. That’s perspective. When people focus their attention on things beyond the end of their noses, they learn things. That’s perspective, too. You may not live a full and complete life, in your opinion, but one thing is certain, you’re going to die. It’s written into the program from day one. That’s perspective. No need to hurry things along.

            Seriousness can be problem, especially when you are said to have a “serious mental illness”. I would suggest that the problem need not be so “serious” as all that. Gravity, after all, when there is this notion of suicidal ideation and perhaps an anchor attached, can get you drowned where a little levity might help you float.

            I’m only sure that everybody in actuality is somebody else. For instance, I’m the king of clowns, but not even clowns take me seriously. *sigh* If only I were somebody else…

          • I’m all thumbs up when it comes to fighting for your rights, actually our rights. I see personal and career plans among them.

            I’m not so hip to the “recovery model” though for a number of reasons…one it presumes “illness”, two recovery from what. illness, that presumption again, or its treatment. I’m just not so fond of “treatment”, especially when that “treatment” involves one kind of torture, and often damaging torture, or another, and I would prefer to be left to my own devices, thank you, however foolish…

            Agreed about the balance though, everybody is different.

            Yours is a very interesting post though, and I applaud the effort. It’s good to see people who have been through the system be given some kind forum, and a place to give voice to their experience, and their take on it.

          • I have re-embraced the value of self-reliance, a value I held dearly in my youth since reading Emerson and Thoreau (I come from New England). I am aware that self-reliance is not a universal value but I feel that we, as patients or formerly patients were robbed of our autonomy and ability to do things for ourselves. Women are especially coerced into this dependent role. Therefore, our assertion of self-reliance is work done in exact direction against our roles we were forced to cling to as patients. Everything we do ourselves today is a move against that old diagnosis. Self-reliance will strip ourselves of that mental patient identity.

          • I would by no means consider Judi a “recovery model” proponent and doubt that she would have referred to herself that way. While she couched much of her speaking and writing in mainstream terms, she was very politically-minded and an early advocate of AP consciousness-raising. She was uncompromising in her defense of the principle of survivor-controlled “alternatives to the mental health system” — which included developing a social/political understanding of what psychiatry had done to us, and why (though the term “survivor” emerged much later).

            Much of Judi’s later work was very practically minded, and a few of her later activities might be interpreted as “reformist” in that they were aimed at helping people in immediate crisis through appealing to “mental health” workers, rather than attacking psychiatry at an analytical, systemic level. But at heart she was anti-psychiatry. She was also an organizer and unifier. If there’s any writing where she self-defines as a “recovery model” adherent I’d like to see it; I suspect this might be a matter of interpretation or semantics.

          • “We are a speck of dust…” I’m stunned to find this on MIA.

            Well…he also said There are billions and billions of stars out there, each with a potential for harboring life, which I wouldn’t consider a cynical statement.

            Maybe it’s just a matter of finding the most appropriate metaphor — for example, “we are all cells in a multidimensional organism” doesn’t sound as dry and lifeless as dust, but isn’t it saying the same thing?

          • I agree, Emily, but I also see using help from others as a form of self-reliance. For instance, I can become very dependent due to a broken furnace. Or, I can hire a professional to fix my furnace. I am not competent to fix furnaces and in fact, in some regions it isn’t even legal for an unlicensed person to fiddle with furnaces (this varies by region I believe). Another example is the paratransit, which allows people who use certain types of mobility devices to get around. Some types of devices can’t be used on the public bus system. So while the paratransit might to me, if I were to use it, be totally illogical, and like dependency, since for me, it would be overkill, but for others, it allows for self-reliance.

            This type of overkill is rampant in the mental system. There’s no reason for someone to come and do the laundry for us when we can do it ourselves. Why do they drive patients to appointments in mental health vans or take them to parks or to movies supervised by “staff” when patients can get around themselves? This actually creates fears such as agoraphobia that wasn’t there to begin with. Why repeatedly tell patients that they’ll fall apart on the weekend because the staff won’t be around? Why repeatedly tell patients to arm themselves with “weekend coping skills” like the weekend without staff will be their biggest enemy?

            Back in 1981 when I first heard these scare tactics on a Friday afternoon I was so shocked. I thought, “Gee, I thought weekends meant I had more hours to practice and more hours to get all my assignments done. What on earth are they talking about?” Sadly, it didn’t take long for me to fall right into the trap.

          • God this thread is long. I can’t say for sure where Judi was at politically towards the end of her life, though I suspect frustrated would be one guess. She had her fingers in a lot of pies apparently; I had very infrequent contact with her following the demise/cooptation of the mental patients’ liberation movement in the mid-80’s. Have you seen this article from 1990 posted at NEP she wrote on the history of the movement? http://www.power2u.org/articles/history-project/ex-patients.html

        • If someone abuses their children that makes them an Abuser. No phony diagnosis needed. Sorry your mom was abusive. You could easily wind up with a nice stigmatizing label yourself. Watch out. You’re forewarned now.

          • Yes, but.

            There is a specific kind of psychological abuse which is created by people with so-called Cluster B personality disorders.

            My mom is BPD, my first girlfriend was someone high both in narcissistic traits and BPD, my second girlfriend was more like pure narcissist.

            I probably would wind up with some kind of stigmatizing label, in best case I’d get away with some kind of anxiety and depression or PTSD but I know mental health system too well.

            But if you fit the criteria for BPD and you DON’T abuse other people – that’s ok for me.

          • @Igor:

            What if someone has no psychiatric labels and STILL abuses you?

            See how crazy psychiatry and neurononsense has made you?

            “Cluster B personality”, “neurotypical”, “X and Y traits”…..urgh.

            You had a shitty mother and 2 shitty GFs. And that’s it.

            All the intellectualising and playing around with psychiatric jargon and labelling criteria is not going to change that simple truth of life.

            It won’t bring you back your childhood, nor will it make anyone else’s better.

          • @registeredforthisside.

            Well, first thing is that most of the people are not so much into abusing. And the abuse is already an indicator. And chronic emotional abuse of crazy kind – is the feature from Cluster B.

            Unfortunately, people who pass the diagnostic criteria simultaneously have caused enormous amount of suffering in other people. That’s just the reality.

            I don’t equate BPD label with abuse, however the chances are pretty high.

            THere are many types of shitty mothers, my particular mother was extremely psychologically abusive due to her borderline traits.

            It won’t bring me my childhood but understanding particular type of abusers I can work on my traumas and heal them.

          • I have a sickeningly abusive father too. He has been lying about me (which are either complete lies, or bits of truth with lies added to them [which makes them more convincing]), gaslighting me and using psychiatry, psychiatric labels and arguments of being “genetically defective” against me since I was a kid. There’s some stuff here that goes back to before I was born.

            The fact that he is also a surgeon, and has a whole family of 7 siblings, with 19 children between them and a whole host of other supporters who love and support him due to self-preservation, his surgical skills and wealth and due to the fact that accepting or admitting that the man is abusive might make them accomplices (by support) in his abuse and ruin the reputation of their families, adds to his ability to be abusive.

            So many times, and so often, I have lived (and continue to) in utter terror, and a feeling of total helplessness (and even feeling crazy and acting odd due to the gaslighting) from the abuse, and about not being able to do anything regarding it because I am the one who is labelled and the man has completely escaped psychiatry and can actually use it against me.

            I also have a mother, who despite his abuse continued to live with my father. While generally being loving in terms of maternal instincts, she would use me as a scapegoat in her arguments with her husband, practically begging him to love me, and using his maltreatment towards me as an excuse to make him see, what a shitty husband he is. All it would do is make him even more abusive. She also could not understand what she was doing. I have grown just as angry with her as with him. The fact that she plays victim without understanding that she turned me into a victim just like her is even more rage-inducing.

            My whole childhood (and youth), my house was a war-zone with the worst expletives and abuses flying around every 5 seconds, and my father’s loud, guttural village voice booming through the halls. I get very anxious just listening to it or even the sight of him (like Pavlov’s dog, a conditioned response).

            Add to this that when I was at home, my mental state got so bad that when I was not thinking about my father, I had all these weird obsessional thoughts associated with the fear of losing control of something valuable. For example, if my mother bought me a second hand textbook, I had this completely irrational obsession (which I fully recognised as being irrational) that somehow any success in understanding the text would be credited to the original owner. It would make it really hard to study. The underlying fear here was losing the ability to study and not being independently successful. I had many more quirky obsessions of this nature associated with, as I said, losing the ability to do something of value to me. Perhaps there is a disposition to this (?), but nothing a few simple interventions (which exclude mental health workers of all kinds) cannot fix. But problems in living, and abusive psychopaths, are not solved by modifying brain chemistry with drugs, nor by incessant “therapy” (aka listening and talking). All that stuff does is make one even more miserable and is even dangerous.

            It took me 10 years to understand that the obsessional thoughts I had were all things related to the fear of losing control, because all psychiatrists did was stamp me with a tautological labels, which I thought of as explanatory, instead of descriptive, and viewed my whole life through the prism of those labels. Between around the age of 18-23, I would incessantly read about psychiatry, watch medical lectures on YouTube (on neuroscience, psychiatry, genetics etc.) and I pathologised my own life, disease mongered (apart from psychiatrists doing this), in an attempt to understand myself, and my father. I had this whole phase where like a lot of teenagers I read Richard Dawkins (The God Delusion, The Greatest Show On Earth: The Evidence For Evolution etc. ), was influenced by the atheist and skeptic movements (and even mocked antipsychiatry people), watched rubbish like the “Charlie Rose Brain(less) Series” etc.

            I feel so SO stupid when I look back at my stupidity in the past.

            I left home when I was 16, unable to bear that man.

            I was prescribed SSRIs for my mental state, due to which I experienced multiple episodes of antidepressant induced mania which, when they happened, made me, on one instance (on Sertaline) relatively mildly manic [probably due to the dosage and duration of use] (surprisingly to me, my fear of my father was replaced with confidence, the obsessional thoughts disappeared and I felt good) and on another occasion (on fluvoxamine) totally manic and psychotic (again due to the dosage and duration of use), and which resulted in a bipolar diagnosis (due to the effects of the antidepressants, not because I am bipolar in anyway). Some of the things I did during this time, are being held against me, even to this day.

            Add to that fact, that my father is a “pathological” liar, a master manipulator and gaslighter, and he gaslights me to the point that I act and behave oddly, which he again uses as proof of insanity, doubly makes me act odd and look anxious and tensed. He has also started sleeping with 2 of the maids in his house. We have collected as much evidence regarding him as possible and are in legal proceedings, which as usual, are full of complete and utter bullshit and lies (either totally or partly, or very much manipulated and distorted) written by him. The guy is a total whackjob but has escaped psychiatry due to him being high functioning, being a part of the medical profession himself, his wealth , his social status and his contacts.

            Let me give you a few examples of his gaslighting:
            As examples:

            1.)Telling everyone and telling me that I have social phobia due to “mental illness” because according to him “I don’t mix with people”. It’s not that I don’t mix with people. I avoid him and his family to avoid a direct or indirect relationship with a man who is horribly abusive to me.

            To some people, in order to escape any responsibility, he goes and tells that I have social phobia. If those same people have interacted with me, and find out that I’m not socially phobic at all, he goes and changes the story to how my mother had poisoned my brain against him, or how she does not allow him to meet my friends and also how, supposedly, she does not allow me to meet his people. All lies of course. My mom never does any of that, nor do I have social phobia.

            2.) On one occassion as I was passing by the TV that he was watching, he used to watch programs on mental illness in front of me with psychiatrists saying “Oh, these days there is no need to stigmatise these people….” etc. trying to manipulate me into believing I’m insane.

            3.) When I look at him, due to his harassment, gaslighting and abusive nature, I become completely depressed, anxious and agitated, which he again gaslights me by telling people that I’m a disturbed individual

            4.) There was a lot of gaslighting and harassment associated with my education due to which I am still suffering due to, to this day.

            5.) He keeps telling me that I’m genetically defective. I once, in text messaging (of which I have a record), gave him the example of how even physical pain is also a partly genetic process and that people who have CIPA do not experience physical pain even if they are stabbed, slapped etc. because they have different alleles of the genes that code for pain. And I proceeded to ask him, “If someone beats you and tells you that the pain your are feeling is because you have “bad genes”, would that make sense?”

            His response was “Your language sounds utterly pre-schizophrenic and it’s frustrating behaviour being an absolute zero in life”, implying that I was using sophisticated language to sound smart.

            6.) He keeps using DSM label after DSM label, to refer to me, without even knowing what they mean. Because he’s a surgeon, he thinks he knows what he’s talking about, but he understands none of it.

            These are very few examples. I could write like 30 more, but that would be a waste of time.

            There is a greater history to this than just what I’m writing here, but that’s for another time.

            What do I do? My father is a rustic, rural man, albeit with native intelligence. He is incorrigible and can never be changed. He is incapable of understanding even basic things.

            When he is totally cornered, he actually even admits and says “I can go to any extent to protect my interests” (again, recorded on text message), which includes lying about me and my mother in the worst of ways.

            The misery I have been through in the last 10 years (and everyday, even now), and the way I’m dragging on, with wasted days turning into months and into years is apalling to me.

            I once lived with the dignity of a surgeon’s son. I’d grown up around surgeons my whole life, used to force my male sperm donor to take me to surgeries, saw dozens of procedures like appendectomies, TURPs (transutheral resection of the prostate), bladder stone removal, kidney stone removal, hernia etc. (I still remember the man’s Karl Storz (a company) endoscopes). I was (and still am) the nerd that had my own compound microscope at home. I would watch all kinds of slides (meiosis, tape worm eggs etc.) under it. I knew things before most of my classmates and was always in the pursuit of knowledge and had a thirst to learn. I still like crunching numbers, doing mathematics (which I’m hardly able to concentrate on, and in which I’m seriously lagging behind and probably always might, even though I don’t wish that), learning stuff etc.

            Note: As a surgeon’s son, having grown up amongst surgeons, having attended dozens of surgical consults and having watched dozens of surgeries, living with a 24-hour on call surgeon, watching my father and his friends ask (and get people tested) for X-rays, CT- scans, MRIs, taking blood test reports, biopsies etc., I can tell you that psychiatry is NOTHING like ordinary medicine. Once upon a time, going to hospitals and seeing people’s internal organs and procedures done on them was an absolute joy. These days I am afraid of hospitals and afraid of doctors, lest they end up knowing my “history”.

            After my youth, turning into a failure later in life, being mocked for my incompetence and my inability to keep up with my peers, have certainly hurt my ego hard. I would keep searching for the answer of “Why? What’s everyone else got that I don’t?”, and then ending up in psychiatry, labelled, defamed and treated like some problem child, while the people who created a lot of this shit have escaped infuriates me.

            Knowing my potential (I’m no Einstein, but I’m not performing anywhere near what I’m capable of, even as a grounded estimate, not based on desire, fantasy and an over-estimation of myself), infuriates me.

            If someone has HIV, or tuberculosis or hell even something like Irritable Bowel Syndrome, you can atleast explain it to people, and people can understand. You can’t explain any of this psychiatry junk, or even what it feels like to become manic due to psychiatric drugs to people. It’s like explaining colour to a congenitally blind person and they’d only want to avoid you. I noticed that the more I told my friends about my pain, the more they avoided me, till I learnt that it’s better to not do that than to do so. The whole thing makes you even more trapped.

            Anyway, that’s a lot of text. My point is, knowing all this psychiatry junk, these personality types, clusters of this and that, has not, and will not ever teach me anything about my parents, nor about me.

            They are who they are and I am who I am, and there is, as individuals, a past, present and future to that. And the truth is always descriptive. Cause and effect. Not a bunch of DSM labels.

            So, I disagree with you on some counts, though, I respect that you are trying to seek understanding and closure in your own way.

          • Just because there are a lot of planets doesn’t mean that mankind is insignificant. There are probably a lot more ants than people, but I haven’t yet noticed any of the great civilizations they’ve built. You seem proud to be above all these petty concerns of human beings who take life “too” seriously. What exactly is precious in your life, if anything? Well, don’t answer that, it’s really none of my business. But if we’re all specks of dust, where do morals come from? Where is right and wrong? I don’t see how your perspective is helping anyone to live a fulfilled life, or even a happy hedonistic life, to be honest. I think you’re trying to deceive yourself too and not even succeeding.

  16. Hi Emily –

    I really appreciated your article. I’m getting a few counselling clients who have been diagnosed with BPD (or one of it’s UK variants). It seems to be the ‘diagnosis du jour’ for the present generation of psychiatric professionals …

    In one instance the diagnosis was made after a single initial interview.

    Once something becomes a ‘symptom’, the professionals can stop asking what it means. Some one with ‘anger management issues’ is never seriously asked what they might be angry about, just as someone who is depressed is never seriously asked why they are unhappy. And I don’t mean that these questions are not mouthed in a superficial way by the occasional white coat – I mean that no one has taken the time to earn the sufferers trust and find a way of having a real conversation with them.

    I hope you find the love you need.

    Very best wishes.

    Alex.

  17. Just took the BPD test on PsychCom. I scored 4 out of a potential 40. I do not have BPD. Yet I was diagnosed with it just like you, Emily. Eight years ago. When folks tell you you’re hopeless and destined to ALWAYS be manipulative, melodramatic, unstable, whatever they’re full of beans!

    How would they like it if people examined them at the lowest point in their lives and told them they were unloveable, evil, and stupid and could never get better? Besides the pills, this demoralizing crap called therapy is why I fled the system along with the role assigned me as Madwoman/Drama Queen. Who needs that?

  18. The idea that not only was I weird, awkward, unattractive, and overly emotional, but also had a disordered personality, only exacerbated my fear of not being good enough for those around me.

    Nah, you’re awesome. Most people have issues of one kind or another, especially in this society. So work on changing anything that *you* want to change about yourself, but otherwise know that you are worthy of acceptance and esteem just as you are.

  19. When I saw my counsellors in the UK they told me not to even mention diagnosis as they had no real interest in it. They asked me to concentrate on what I had at the moment that was manifesting itself as a problem, and we would see what we could do about it.

    Looking back now, many years later my “problems” could definitely be accommodated through “counselling”.

  20. Emily:

    Having been around psychiatrists for many years and hearing what they really think, I know that many of them carelessly applied the “borderline” label to anyone who was difficult to deal with in some way that didn’t fit neatly into one of psychiatry’s classic diagnostic labels. It was usually because they were expressing a lot of emotions and wanted the doctor to spend more time interacting with them, which annoyed the doctor, who would thus slap on the label, ignore their needs, and shut them up with antipsychotic medication. It was referred to as a ‘garbage bag’ diagnosis, so you shouldn’t take it too personally/seriously. It’s more a reflection of a field that is always looking for justification for sedation.

    Lawrence

  21. If someone called me an ugly, stupid idiot should I consider that a legitimate medical diagnosis? Should I self identify as an ugly, stupid idiot or organize Ugly, Stupid Idiot Pride events to reduce stigma by educating the public on what it means to be ugly or stupid?

    Ugliness is real! It’s okay to be stupid. Quit stigmatizing idiocy.

    Actually these terms are arbitrary insults. Ugliness varies not just culturally but according to personal tastes. Stupid is also arbitrary. I dated a man with an IQ of 150 with very poor social skills that hampered his life. Was he stupid or a genius?

    If these labels are hurting you and you wish to quit counterproductive therapy sessions that tell you how hopelessly flawed you are we at MIA support your decision.

    If excessive fear of abandonment is hurting your relationships why not just say, “I need to overcome this fear. It’s excessive to the point of irrationality and frightens people away”? It’s a fear you have; not a moral diagnosis that defines your innermost soul.

    Please don’t wind up like Matt, Emily!

    • Should I self identify as an ugly, stupid idiot or organize Ugly, Stupid Idiot Pride events to reduce stigma by educating the public on what it means to be ugly or stupid?

      🙂 Nothing to add. 🙂

  22. The “borderline” label is #fakescience , without a doubt. People won’t stay healthy when their relatives/friends/classmates/sweethearts are making them feel totally defective. Like all psychiatric diagnonsense, it’s a way to torture the VICTIMS of abusive relationships. It’s EVIL to make someone feel so worthless. It’s GASLIGHTING to pathologize their strong reactions to that abuse. And it’s brutally controlling to rate a person’s “sanity” by their tolerance for masochistic “inclusion”. But, the quacks won’t let Mad people know any of that. Fragging our perps is an economic, social, and existential threat to them, no matter how “successfully” we do it. By ANY means, – lies, #fakescience, eugenicide – our perps will dodge that threat. Emily, you are NOT a “borderline”. You’re a smart, capable, loving, fun woman. People, DON’T SURRENDER TO THE SANISTS, MUNCHAUSENS, AND QUACKS. You aren’t “borderline”. You’ve just gotten thugged out by the closet whack-jobs in your life. And we NEED to stop taking the fall for them. NEVER accept an label that weakens, isolates, and manipulates you!

  23. Emily, This is why this happened. For one reason only. You were told you had a terrible disease called Borderline. Then, without even realizing it, you found your identity as that. So you stepped into that role that psych created for you for a while. You fit yourself into that mask. You became that person. It was your job, it was you, you did it well of course, it was who you were. But that’s over now. Mental Health has done the harm, so the gig’s over now. Hear the applause? The world is all clapping. Bow and step off the stage. Step way, way off.

    Ten years from now it won’t be like this. Being emotional is a normal part of being young. Going from one partner to another is normal for a young adult of mating age. Getting straight A’s isn’t a disease, it means you are smart and good at academia…I was, too. In my opinion, the world around you needs to get over it. They are jealous and shouldn’t be calling you disordered just because they can’t seem to do as well as you do. Don’t cave in to their envy.

    Awkwardness? Hah! I beat you at that one. Yesterday I tripped and fell on a crack in the sidewalk, smashed to the ground, and in the process, BOTH lenses popped out of my glasses onto the pavement. The frames stayed on my face. I put my glasses back together. I walked home laughing, totally okay, telling myself I was lucky no passersby stopped to forcibly yank me up. (I love the metaphor here.)

    There’s no such thing as perfectionism. There IS such thing as being talented. Envious people love to put down talented people by calling them perfectionists. I recall one of my past therapists insulted me when I was getting straight A’s. She called it a disorder. Now I question this when certainly my college instructors did not see it as such.

    We live in a world that knocks down excellence in favor of mediocrity, medicating intelligent people, calling them schiz, locking them up, calling them criminals or dissidents, and giving them ECT to lower their IQ. ESPECIALLY WOMEN. We aren’t allowed to use our intelligence, as I have written here: https://medium.com/@madnessinvisible/no-jobs-for-smart-girls-so-the-nuthouse-loomed-ahead-4f1ebfd8b33c

    In a few years, maybe ten, maybe twenty, you’ll look back and laugh over all this, definitely not cry anymore, simply because of getting older. Don’t use labels nor pseudolabels on yourself and don’t use them on others, even celebs. Being young is a blessing, not a mental disorder. Live well. If you are alive you are a winner.

  24. Thanks for telling your story Emily. I’ve always found that difficulties are understandable given the unique experiences everyone has. No one needs to be categorised, no one needs a pseudo-scientific label – I’ve worked with too many people who’ve lost years because of the nonsense they were told when at their most vulnerable…

    https://www.academia.edu/29213148/Making_Sense_of_Distress_without_using_Psychiatric_Labels

    The exasperation and despair I felt with regards to some of my colleagues led to this…

    https://www.academia.edu/8552213/Clinical_Psychologist_or_Covert_Psychiatrist

    Best wishes

    Kev

  25. Wow. You generated a ton of responses. I see your photograph and as a photographer I’d like to say you look perfectly fine and lovely.

    When I was incarcerated in a mental hospital for two years, the head shrink said I had a “defective personality” because I was in my inner child most of the time (due to reading John Bradshaw) and was always co dependently trying to become what the shrink wanted so I could escape the horrid place where I was experiencing permanent insomnia. (you can read my story in Personal Stories, scroll down to Little Porcupine Goes to the Psych Ward.

    So no one figured out that I didn’t have a “defective personality” but rather needed to DEVELOP an ADULT PERSONA. I cobbled together an adult persona with which to navigate socially, from various people I was in contact with, as the years went by. But I still have a flexible personality as opposed to a rigid one.

    Another item on the OP list was anger. And fear of abandonment.

    My anger came originally from my parents totally ignoring me as a child. No affection. No birthdays. That is a valid anger to explore and transcend. The anger was finally calmed due to Tibetan Buddhist influences. A person is not defective or borderline personality because they are angry about invalidation as a child which makes being an adult difficult. Pills do not resolve anger.

    As for abandonment, I had severe Separation Anxiety. This was due to having always been in a house with other people. The other people didn’t interact with me and were emotionally unavailable, but they were always there like the furniture. That was the childhood foundation program.

    All these things are environmentally caused and therefore can be environmentally reprogrammed. Labels do not help. Pills do not help. We have a negative blueprint and must do opposite things like Develop Compassion for others, including ourself.

  26. PS Healing/Transcending the anger for parental abuse/neglect is connected to forgiveness/compassion for them being fallible human beings programmed by their own parents who suffered altered behavior due to WAR. At least this is the path/understanding that I took.

  27. Who decides who is mad? If you ask most people the answer you’ll get…mumbled under the breath…will be “Oh, a psychiatrist. I think, right?” But…What if the psychiatrist also is mad?

    Remember that deck of cards in Alice in Wonderland? Wasn’t that totally brilliant?

  28. Emily, you’re still all tangled up in the system – it permeates the way you think about yourself. Just reject the whole thing, or it will always define you and distress you. There is no other way.

  29. Emily—-I really like what you are doing…you seem like a good person..i personally like critical psychiatry because there is a lot to be critical about drugs and diagnosis…but I am not liking anti-psychiatry…I have a problem attacking every psychiatrist in the world…my psychiatrist is one of the good guys…he just doesn’t understand the terrible abuses that are going on in the official psychiatry world of diagnosis and drugs….he is blinded by the way he was trained…and he is afraid of getting sued for not following the standard of care…

    • Little Turtle, not all antipsych is alike. I personally do not believe all psychiatrists are “evil” or “bad.” And that, frankly, is a misinterpretation of what antipsych is about. I do see some as feeling this way, but others do not. It is a blanket generalization.

      I do see the field as corrupt. However, most that enter into it are naive young medical students hoping to do good in the world. They assume they’re going to help people when they become full-fledged psychiatrists. During medical school they go through sleep deprivation and heavy duty bullying and brainwashing. They’re told that some people are inferior and to get over it. They’re told to shape up. They’re treated with misogyny. Many medical students turn to drugs to stay up 30 hours straight, drugs such as heavy-duty stimulants, and they end up hooked. Sleep deprivation means these medical students are open to suggestion and further brainwashing. The field is very corrupt, money-driven, pressured, hierarchical, and dishonest. I don’t think they became doctors for this, to worry constantly about threats of losing their licenses, to worry about being sued all the time, to be bullied by supervisors and limited by policies and bribed by pharma companies. But that’s reality for many of them.

      No, psychiatrists aren’t bad people but look at the conditions they’re working under. How can they possibly be decent to their patients? Those that dare to do so get out of it. Honestly I don’t think we should call them bad people. Is there such a thing? To call them evil is like saying they’re inferior, which is like another form of eugenics. I don’t think antipsych believes that at all. It would be contradictory.

      Psychiatry and most of therapy that believes the lie that some people are inferior and need “treatment” forever, the belief in a tiered, divided society and any justification for further division and killing off of supposed inferiors is the root of it all.

      Any belief in inferior humans, such as “narcissists,” “psychpaths,” etc, is eugenics at the very root. Although a person can behave in that manner, and I have witnessed this, I am careful not to call a person a permanent narc.

      • Julie, thanks for the excellent post; you make great points.
        I would add that most young med students, despite their good intentions, go into the field believing that “things” are going to help us. In fact, almost everyone believes that “things” can be used to fix problems. We use “things” like coffee, sugar, relationships, power, money… to fix our inner problems about 100% of the time, and it’s ingrained from the tiniest age to do so. Psychs think that the “things” are pills but really, what difference? (Okay, the pills are murderous, but apart from that…)
        Thing is, most of us never ask the question, “Okay, now you’ve got your fix (love, prestige, approval, cocaine, anti-depressant…) what are you going to DO with it?” Eventually, the more truth-seeking ones of us get to the point where we realize that the fix doesn’t fix anything. What we do then is the real question.

      • I personally do not believe all psychiatrists are “evil” or “bad.” And that, frankly, is a misinterpretation of what antipsych is about

        Glad to see you pointing this out. AP is about the psychiatric system and the destructive mentality it foments, not “good” and “bad” individuals. (Though sometimes there is a convergence.)

        • Making a distinction between the system and the powerful individuals who carry out its vile mandates is a pathetic apology for those people. I am surprised that you would make such a statement.

          • I’m surprised that you’re surprised, as I’ve been reading your comments here and elsewhere with strong agreement.

            I don’t generally consider people who do evil things “evil people,” not that it matters one way or another if you’re being assaulted. Analytically speaking, however, we’re dealing with a system, not a collection of individuals. Just like with cops — on a societal level they are there to uphold the interests of the ruling class; that doesn’t mean there aren’t individual cops who believe their job is to protect people, and will risk their lives doing so. To point this out is not to justify the system.

            Would you consider Dr. Breggin “evil”?

          • There is a difference between those who knowingly perpetrate evil in the name of profits or power, and those who are genuinely deceived and believe they are helping. I’d agree that those at the top of the APA/psychiatric hierarchy are, indeed, evil, but many front line psychiatrists are simply confused or frightened of bucking the system. Of course, it doesn’t make that much difference for the recipients – it’s still evil, but it’s important not to let the leadership off the hook by blaming poor results on “bad prescribing practices” or “a few bad apples” or “a lack of training in the field.” The leaders are the ones intentionally perpetrating evil, though as noted, there are a lot of evil folks who go into psychiatry because it gives them power. There are also a number of dissident psychiatrists doing research or organizing projects to alter the status quo, and such people are most definitely NOT evil.

            So organized psychiatry, IMHO, is organized around an evil purpose. Individual psychiatrists may or may not be evil, and need to be judged on a case-by-case basis.

          • So we focus on the evil of the ACTIONS involved rather than trying to figure out which PERSON is evil or not evil. It feels a lot cleaner to me to say that the psychiatric paradigm was designed with evil intent than to try and sort out individual motivations, which in my view are all over the place. This protects us from the “counterattack by anecdote,” saying that we are wrong because psychiatrist A is really a nice guy and helped get me off of the stuff that was hurting me. Psychiatrist A may be a stellar human being, but if he’s labeling people based on behavior and prescribing drugs without consideration for their long-term negative effects and is not providing informed choice to his clients, he’s engaging in evil actions, regardless of his intent.

            How’s that sound?

      • Julie

        I agree that we shouldn’t condemn with a broad brush but I will have to say that I encountered two, truly bad psychiatrists. These two men were abusive emotionally and psychologically. One individual was the first to ever give me a diagnosis so that I could continue my talk therapy at a community “mental health” center. This guy never talked to me for twenty minutes while he scribbled on his little pad of paper, making notes from the notes my therapist gave him. Finally, without ever looking at me he asked how I was doing. I told him I wasn’t doing well. When he asked me why I told him that I was told the day before that my one and only younger sister had been murdered in New York City. I then told him that it felt like the world was falling down around me. He jumped across his desk jabbing his finger in my face as he yelled, “That’s stupid!”. He was disgusting. They eventually fired him for being so bad.

        The second psychiatrist was an arrogant ass who loved to yell at people as loudly as he could. He always tried to make people feel stupid, as if they didn’t have a brain at all. He always treated people less than, not only the “patients” but the staff too. And the worst thing was that he was allowed to get away with this abusive behavior because he was the “doctor”.

        I agree that we should take each person and judge them on their own merits, but to say that there are not evil psychiatrists goes too far in my experience and humble opinion.

    • I think you said the most important thing – they get sued for not following the “standard of care,” no matter how stupid or dangerous that standard may be. So who sets that standard? It is the more powerful “thought leaders” of psychiatry who have colluded with the drug companies to develop these “standards,” often white directly and shamelessly (see the TMAP in Texas as a telling example). It’s not accidental, it’s profit-driven, and the on-the-street psychiatrists, no matter how cool they are, can’t as individuals alter the standard of care. Also, those who DO follow the standard of care CAN NOT be sued, no matter how many people they kill! Antipsychiatry, to me, is opposition to this SYSTEM of harming individuals in the name of profit. There have always been psychiatrists who see through this, and I am certainly not opposed to those people trying to help. But the profession as a whole is organized to stifle ANY resistance, even from within their own ranks. That has to change, and it won’t until the financial incentives for establishing and following a destructive “standard of care” are eliminated.

  30. Emily,

    as I continue to watch the replies, once again things seem to be steering in the direction of ‘nothing is really wrong except that you accepted the BPD diagnosis, and once you throw off that diagnosis everything will be happy again.”

    I guess this is my stance. My wife has dissociative identity disorder. There is nothing biologically, or neurologically wrong with my wife. But when someone is subjected to severe mental, physical, sexual trauma, especially during childhood, that creates certain mental ways of thinking which inhibit one’s ability to function at full mental and emotional capacity. And just like a physical therapist can help someone regain complete mastery of his/her physical abilities after a severe physical trauma, I’m kind of a ‘mental therapist’ for my wife. I help her undo all the lies associated from her past trauma which inhibit her from functioning in the world today where she isn’t subjected to constant trauma.

    On top of that trauma often causes dissociation in a person and over time that gets ‘hard wired’ into a person’s mental landscape. Think of dissociation as the atrophy of muscles which aren’t used after a physical trauma: those muscles then have to be re-invigorated before they can do what they were made to do. And so I’ve had to use the concepts of neural plasticity to re-invigorate those neural pathways that had atrophied between the 8 girls in my wife’s personality. Until the other 7 girls joined us, my wife’s host was very ‘flat Sam-ish’ if you understand the analogy. These other 7 girls controlled all kinds of mental traits and abilities that my wife’s host had zero access to previously. And so I also help and coach them and teach them to work together and strengthen the pathways between themselves so that they can work together as a group.

    And to further complicate things the traits and abilities that the other 7 girls control had experienced an ‘arrested development’ of sorts: they hadn’t had the chance to mature and develop like what happens during a healthy childhood. So I’ve also had to help each girl have the opportunity to experience life and grow and mature the abilities/traits under her direct control.

    I don’t know your situation well enough to make any judgment about you. And like I said from the start when I interact with my wife I neither act like a martyr to her, nor do I constantly tell her how dysfunctional she is. A good physical therapist focuses on the goal: complete restoration of the person’s physical abilities, NOT the current state of the person with whom he/she is working, and that’s what I do for my wife. I’m her biggest coach, cheerleader AND fox hole buddy. We are walking this healing journey together. And yet, she is still very dysfunctional in some areas. We haven’t been physically intimate for over a year and a half as I work with girl #8 to help her feel safe and secure. But her simply saying, “I don’t have d.i.d. and, voila, now everything will be happy’ won’t cut it.

    I wish you well.
    Sam

  31. I appreciate the interesting article from Emily and the comments from others about this controversial diagnosis. When I studied with psychoanalysts it was the diagnosis to fear when treating if you did not have extensive training and experience. “Management of countertransference” trainings were a common training for new therapists as this personality disorder could throw a therapist into an abyss of either hatred and anger and thus retaliation against the patient/client or boundary violations as the therapist wrongly tried to meet the bottomless needs of the client. The diagnosis reportedly was caused by “an invalidating” childhood, usually meaning a mother who was consumed in her own narcissism and unable to meet the emotional needs of the child. The patient’s/client’s behaviors including suicidal threats and attempts and self-injurious behaviors. I did find these behaviors rampant on an adolescent inpatient psychiatric unit. Most labeled were females and some gay males. We used Dialectical Behavior Therapy which Marsha Linehan, PhD created, a psychologist who has come out as a former psychiatric patient labelled with this diagnosis herself. It is a skilled based curriculum of lessons taken from variety of sources including Buddhism. It is a good compilation of lessons with the hope of being more centered in the “wise mind” vs. the overly emotional or intellectualized mind. Most of the adolescents had taken years of DBT and were better experts at it than I was who needed to quickly learn it. The information in it is good for anyone but to do DBT according to the rules one needed to be in a DBT group and have a DBT outpatient therapist. I did see improvement in certain types of behaviors that we were trying to target, i.e. self-injurious behaviors and suicide attempts. My problem was that they had to go back to their families with same environments. Relapse was common and often they would come back to the hospital. Best treatment I found was working with the parents and siblings and creating a healthier environment for the system itself. Changing a toxic environment with consistent rules and boundaries and mutual respect does wonders.

    The diagnosis itself is very stigmatizing even on a psychiatric unit where you would think trained staff would be more caring but not always. We had to fight the language of staff, i.e. “manipulative” behaviors and “splitting”. Everyone is an individual with his/her own personal experiences, social economic background, gender, culture, religious or not religious background, and education that putting individuals into this limiting diagnostic category is absurd and truly not respectful nor humane. Adolescence and young adulthood is tough enough without adding a misunderstood and misleading diagnosis. Self-consciousness and fitting in with peer group, moving from the family of origin to more independence as an adult is tough. Having maladaptive and unhealthy coping strategies such as cutting and threatening suicide serve a purpose which can be retrained. This diagnosis was created by mainly psychiatrists, “the thought leaders” from APA which wants to be seen as a credible, scientific entity on par with the AMA and other medical professionals.

    • knowledge, Your description would be ideal IF it were true, however, it isn’t. BPD is given overwhelmingly to young females who may, OR may not fit that description. I am one who did not fit that description. That wasn’t what my family was like, nor was it what I was like. I was given it because they needed to quickly excuse ECT damages. I had not been a chronic cutter nor had I had multiple suicide attempts nor chronic self injury. I wasn’t a drunk nor did that above family description fit mine at all. What happened, then, was tragic and I’ve told this story so many times I really don’t want to anymore. I rose to fit the occasion. Since I wasn’t improving from ECT, the doctors told my family (completely lying) that they should “disengage for their own good”). This is why, now some 20 years later I am spending my Thanksgiving alone. Screw the doctors that did this to my non-abusive family. Screw them. Screw the malpractice and screw the label and screw the DBT that didn’t do a darned thing to heal my brain from the damages from ECT. It only made me feel like a child and I found it completely insulting. Wise mind? Screw that.

  32. I ask why, after Emily has so beautifully written here about her life, and sacrificed her privacy, and given to us a gift, shared with us so openly, I ask then why are people now character-bashing her? I ask because as a writer of memoir and longtime blogger, I got the exact same reaction from people who frankly, didn’t even know me and had never met me. They came by the hundreds to tell me what a piece of crap I was. They compared me to their shitty relatives or exes. They even told me they hoped I would die and that I had dug my own grave. Why bash a person who is honestly and openly giving us a slice of her life? People aren’t perfect. I ask why we expect a writer to be that pinnacle of perfection when we ourselves are not? Why throw stones?

    • I assume you’re addressing me. Look, we can learn a ton from what Emily wrote. And I certainly don’t expect her – or anyone – to be perfect. And that’s not what I wrote or implied. But, isn’t this supposed to be a forum for trying to understand people better? For trying to figure out what goes on with people, and learn from them? Putting oneself out in public like this is brave precisely because of this – because it invites comment and honest discussion. I know I’m full of inconsistencies and I don’t necessarily enjoy it when people point it out – but I value it, nonetheless. From what Emily writes, I gather that she, too, is a truth-seeker and isn’t just looking to have us all give her a round of applause.

      • No not you specifically Julia a lot of others here, too. That is common here on MIA. I honestly wish we’d spend more time writing to politicians and less time on useless debating. I wish we could inform people in power just how horrible the nuthouses are, just how illogical the DSM is, just how dangerous the drugs are, and that suicide increases because of “hospitalization.” I wish we could urge communities to be compassionate instead of claiming people are disordered and then sending them to therapy clinics. We really need to get the word out there. As much as we can. It is so frustrating. We must be persistent.

        • How do you think it’s possible to persuade communities to be more compassionate? Were they once more compassionate, and if yes, what happened?
          I think most of western culture is all about “I’m in charge” especially in the U.S. where it’s all about getting “ahead” and “pursuing happiness.” That just doesn’t fit well with compassion. Once religion got thrown out, what was there left to tell people to care for one another? It’s not for nothing that surveys consistently show that religious people are more philanthropic. I think the debate happens here because this is where we find someone to talk to who’s willing to listen. Try this anywhere else and you’ll find yourself alone. People absolutely do not want to hear. Why is it that the “mental illness is just like physical illness” garbage has been so widely accepted? Because it makes life easier for those who aren’t “afflicted.” And if life is all about being happy, that makes sense. So what are you going to tell them? Put yourself out for someone else? They don’t want to! You can’t threaten them with Hell or promise them Heaven. That’s all gone. It’s back to the Roman world – carpe diem.

        • Well, Julia, for one thing, I talk to people on the bus. I do public speaking and often I am approached afterward by someone who tells me I made a deep impression on them. I also regularly write to politicians and I DO get a personal response sometimes. Or I call them. I also met with politicians and have had personal discussions with them. I persuaded a pol to cosponsor a bill, which I cannot discuss on here but it is of interest for sure. I have written to the gov of my state and other states numerous times. I have my own radio station where I have guests on periodically, or, sometimes, I just talk about whatever I want. And I’ve been blogging 18 years because I believe in Freedom of Speech. And yes I have been threatened many times, by psychiatry, and even by the police (they had no warrant). Readers from as far away as Romania have read my blog. And many have been positively influenced, or so they tell me, though some are pissed off. I don’t mean to make myself look like anything fancy, only to say that if only you stay alive for six decades as I have, most likely you’ll accumulate a decent-sized footprint, although possibly a controversial one. Let it speak loud and clear.

  33. interesting blog….I like the MAD PRIDE idea…I have had a very long experience with mental suffering…and the old term was mental illness…I still have PRIDE in being one of the persons with
    a serious disabling MENTAL ILLNESS…I have my medal of honor for having a MENTAL ILLNESS…and no one here can take that away from me…I am one of the old guard…MENTAL ILLNESS PRIDE…and I have serious problems with drugs and diagnosis to solve these problems…

    • I like the Mad Pride idea, too.

      Actually, rather than “sick”, Mad etymologically means “changed”. The word itself predates the medical model of “treatment”.

      Mad isn’t the new word, and you’ve got some NAMI sorts who object to it. I like Mad though. I find it infinitely (if you will excuse a little hyperbole) preferable to “sick”.

      • Tomorrow I am having Dog Pride Day on my radio station! All in good fun. Screw their diagnoses, especially BPD, may that demeaning label get totally mauled! Please call in! This will be a themed party. The theme, being “The More I see of Psychiatry, the More I Love My Dog.” Call in with your dog stories, dog barks, meows, any dog jokes, cat stories, tell me how about your parakeet, anything goes. 11am Eastern, 323-443-7210.

        PS: It will be Puzzle’s birthday.

          • Frank can I ask why you jeered at my show? Was that truly necessary? I am not aiming this just at you but pretty much everyone so don’t take it personally. My purpose is to bash psychiatry any way I can. I put a lot of work into what I write, went to school to become a better writer, have published and studied widely, continue to do research on my own, and pay money to keep my show on air. So don’t jeer at it.

            Are we not allies here? Don’t we all want to see the end of locking people up and taking away their rights?

            I ask why on earth, why do we spend so much precious energy, energy that we seem to have so, so little left, on fighting against each other and putting each other down, instead of fighting psychiatry and its discrediting diagnoses. Why are we hurting each other and weakening ourselves instead of fighting the laws, policies. and principles that created this mess? Why are we continuing to act in a hateful, and even vengeful manner toward each other instead of organizing and really doing some good in the world?

            I suggest we begin by taking down the walls that divide us, quitting the over-the-top boundary-setting, continuing to maintain dialogue (spoken conversation preferred) and above all, reach out to our neighbors. We need to cultivate trust, not the distrustful culture they imposed upon us in the nuthouses.

            If we continue to act in a hostile manner to each other then we’re only reflecting psychiatry. We’re not going anywhere. That has to change.

            I’m asking for your support. And maybe we need to each support each other’s efforts, causes, concerns, and look out for each other’s well-being for a change.

            Julie

          • I’d like to see a little solidarity myself, Julie, and as it seems so hard for anybody to agree on anything, that solidarity is getting harder and harder to come by.

            Don’t want to jeer at your Dog Pride idea, but between this, that, and the other, I can’t lose sight of the Mad Pride idea either. It used to mean something, but I’m ready for the next development if anything is up. It’s nothing that I can’t deal with. That is, if nothing is what’s up.

            It’s hard, in other words, to maintain any sort of Mad Pride perspective while emptying the words of meaning at the same time. I might, again, have to call it a Mad Pride perspective.

            Also, Mad Pride is a historic matter, following Black Pride, Red Pride, and Gay Pride. No pride, that can be a problem.

            Dog pride, sure. I’ve got a dog, and her feelings are important to me. I won’t see anything bad happen to her if I can help it.

  34. Yes, it would be so much more helpful for us all to be working together. However, we’re not all united on what the struggle means. We have different opinions on “mental health.” Some people think that there is no such thing as malfunction – they get offended at the very usage of the word “psychosis” for instance and want every single emotional state just to be a different place on a continuum, without any judgments being made about whether it’s okay to stay that way or not. That sounds ideal and I guess if it was me in that extreme state, I might want to avoid being labeled. But as the wife of someone who has been what I will hesitantly call “psychotic” a number of times, it’s a bit complicated to say that it’s okay to be like that too. Is it okay to call psychosis dysfunctional, or does that mean that I’m beyond the pale on MIA? Should I (and my little children) somehow be able to deal with a husband (father) who runs through the streets screaming “Murderers! Murderers!”? Sometimes, the posts here seem to be taking such an extreme position that it alienates those of us who are on, for want of a better term, the receiving end of “madness.” FYI, my husband is currently not on medication, and is relatively stable but I do, I admit, live in fear of what could happen. And I also know, a little bit, what it’s like to be “mad” having been anorexic in the past. And no, I was not happy with that consequence of childhood trauma. I was totally and utterly miserable. I desperately wanted to be happy but had no idea how to achieve it. So I absolutely think there is a place to say “Yes, this is dysfunction. This is no good. I am suffering and making others suffer and something has to change.” I think most people on MIA do feel this way too, but those who don’t are often very vocal and aggressive about it.

    • Hi Julia, That is a great question. I think dysfunction is perhaps in the eye of the beholder. So who am I to judge if another is “dysfunctional”? My goodness, how can I if I have never lived even one minute in that person’s shoes? I can, in my best judgment, state that the person is psychotic, occasionally, but dysfunctional, no. And when it comes to psychosis so often there’s a gray area.

      My boyfriend went through a period of bizarre beliefs and yes, that scared me. Twenty years have passed since that time. I can look back now and say that everything he said and did back then makes absolutely perfect sense to me now.

      These were the circumstances. First of all, loss. He was a witness to my ECT and as far as anyone was concerned my brain was fried and I’d never come back. We’d been dating over a decade and now, I was suddenly dependent and couldn’t do anything on my own. Prior to that I’d been employed.

      Secondly, he was experiencing devastating effects from pills and he feared the effects would not go away even after stopping the drugs.

      Thirdly, just when I urged him to talk to his doc, he went to his regular doc appointment to discover this doc he’d been seeing for about a decade completely disappeared. This is how he found out. He showed up and they told him, “He’s not here and you have a new doctor.” We tried to find out but came up empty-handed.

      Unfortunately I was very out of it back then and unable to put the pieces together when he totally and very understandably flipped out.

      I remember Joe as a very gentle person, a lover of music and children, and very much cherished by his family. He died at 45. I know the drugs, which were not his choice, were partly responsible.

    • Hi Julia,
      I’ve been told this website is for ‘mad’ people and therapists fighting the biomedical model and NOT for those of us on the ‘receiving’ side, and though I think that is a VERY shortsighted perspective and have tried to explain that they NEED people like you and me and the perspective we have and the lessons we have learned, thus far it’s fallen on deaf ears.
      Take care,
      Sam

      • I guess if that’s what they want, then it’s their website, though I agree with you. Maybe we should start a site of our own?
        I’m constantly amazed at what you write, about the incredible energy and devotion you give to your wife. I think you mentioned once that you have a blog? Could you post its address? I would so much like to learn from you and see what I can apply to my own situation.
        Keep strong!

        • its over at samruck2.wordpress.com
          Thanks and I wish you well, too!
          Sam

          edit: thus far I’ve seen little evidence that SO’s want to band together to make a difference. I had hoped for more on my blog, but it never happened, and I have searched the web and only found one place in the UK that seems to be thriving for SO’s of people with d.i.d., but they ONLY let people join if you have attended their meetings in person…and they are strongly aligned with the model that ISSTD promotes for healing d.i.d. which I flat out reject.

          I wish this website would review it’s stance toward us SO’s. I believe we have so much to offer this movement especially as some of their writers/commenters bemoan the lack of progress in this movement overall, but thus far each attempt I’ve made to have a greater voice here has been ignored.

          If you ever figure out how to start something, let me know. I’d be happy to be part of a place where I was fully accepted and had a voice to make a difference. I support so much of what MIA stands for…they just don’t want what I have to offer, sadly…

          • To samruck2

            Just wanted to say that perhaps one main difficulty preventing SOs to ‘band together’, is simply because of confidentiality issues. ‘Sos’ are often speaking for those who not yet able to, or don’t yet want to speak out for themselves, so it becomes problematic for SOs to participate in anything but an anonymous way :(((

      • I’d like to know exactly WHO told you that…..
        Unless they were part of the website admins, any commenter here has no more or less authority, to say who or what this website is for. For me personally, I think some of your comments sound weird, but I’m learning some things, and I think you have a valid point of view, and valuable information to share with the readers. Again, speaking for myself, I say you’re WELCOME here, and I’m GLAD you comment. I do NOT identify as “mad”. I’m a survivor of doctor abuse/psychiatric abuse, and recovered psych drug addict. The Docs addicted me. Thanks, & keep posting here!

        • Bradford,
          it simply wouldn’t be right for me to out the person. And for me to say much more about it would do so.

          Again, this is MIA’s stance, and though I strongly disagree and think they are hamstringing their own desires because we SO’s and family members are the best hope, I believe, to turn the tide because we have the deepest access and most intimate knowledge of things even if it isn’t from the distressed person’s perspective it is still a VALID perspective.
          Sam

  35. Hi Sa,

    yes, that is what I was told as the reason why this website refuses to let us SO’s have a larger voice. However, I believe a more correct understanding of things would be: “There’s my story, her story and our story.” I understand that this website is all about giving people with mental health issues a voice; however, sadly, it seems they are wiling to silence those of us who, I believe, could have a huge influence on changing things. We are the ones who are in the trenches 24/7 when our spouses are having PTSD issues, psychotics issues, and everything else. And there’s a reason why so many families call the ‘experts’ when these kinds of things happen: because they’ve been brainwashed to believe that they CAN’T do what the ‘experts’ can do. Fortunately for my wife, we were homeschoolers and grew up on the Right where we didn’t expect the government to do everything for us, and so I never even considered having her committed or drugged even though I nearly collapsed from mental and physical exhaustion the first couple of years until I ‘found my stride’ and learned how to help her heal using attachment principles.

    So I do understand MIA’s hesitation especially when there are so many untrustworthy SO’s and families out there, but sadly, they’ve thrown the baby out with the bathwater, not realizing that many other SO’s and families who want to help are one of the best options there is to keep people out of the mental health industry.
    Sam

      • Though it has been suggested by various people, even by one person who ought to have a lot of pull at MIA, that I submit articles for publication here, I was told there was enough ‘blowback’ from others on staff that felt I should not be allowed to submit anything unless it was in conjunction with my wife. And that’s their call. It’s their website.

        But I feel I could offer other SO’s and families who want to help a blueprint using attachment principles. My wife’s d.i.d. is considered some of the hardest stuff out there to deal with. Lots and lots of experts won’t even touch it. And one of the quickest ways to keep people out of the mental healthy industry is to teach those of us ‘in the trenches’ with our loved ones that they have far more power to help than ANY drug out there or any expert can do. Even if only 20-30% of SO’s and families were willing to do what I do, we are talking tons of people kept from the drugs and involuntary incarcerations.
        Sam

        • Okay, well, no offense intended, but i think they made the correct decision. I don’t think that articles written *about* individual psychiatrized people would really be in line with this site’s history and mission, and I don’t think it’s fair to imply that MiA has some sort of grudge against SOs merely because the staff made that decision.

          That said, I do agree that attachment principles don’t generally get the attention that they deserve. Isn’t there any way to write about them without focusing on your wife’s story?

          • I didn’t mean to imply that MIA has any kind of a ‘grudge’ against SO’s. Before I began to participate on this website, I’d never even heard of ‘nothing about us without us.’ My wife encouraged me to start my blog as a way to give me an outlet and yet keep her privacy. I understand our story really isn’t in line with MIA’s mission per se because we haven’t been part of the mental health or psychiatric drug scene AT ALL. Her counselor is just an unlicensed ‘theophostic’ counselor who happened to have helped someone else who had d.i.d., but at this point, I’ve taken my wife way past what her counselor understands, but they became good friends along the way and the little girls love to talk to her since she’s the only real life person they ever talk to outside of me and our son.

            As for my talking about ‘our story’. It is just that. It’s not her story: it’s our story. I’ve been thru HELL carrying her thru the healing process, and it’s a little insulting to suggest that she’s the only one who should have a voice, and the other SO’s on this website know exactly what I mean even though MIA refuses to recognize it.

            But in the end, this is their website, not mine, and though I’m disappointed by their stance, I’ve got more important things to do, like help girl #8 become securely attached to me, than worry about whether or not MIA allows me to share with others how attachment theory might help them and their loved one.
            Sam

          • I don’t think that anyone has suggested that only your wife should have a voice. And yes, I do understand that in many ways you and your wife have a shared story. But there’s a difference between that story – as it relates to your wife’s condition – coming from you, and that story coming from her.

          • I would agree if this site only featured “mad” people. But since “therapists” etc. are also given a voice, why not also those “amateur therapists” such as samruck who are, as he writes, in the trenches 24/7? Do you really think that we have learned absolutely nothing after years upon years of trying to help our loved ones?
            I’m also going to be absolutely loathed for writing this, but too bad: I think part of the process of “getting out of mad” is seeing the other side of the story. It’s so idyllic to say that a psychotic person “just needs to process stuff, to have his own space and time etc.” but if that same person continues to believe that any time he goes through stuff (you know, like we all do) he can take a vacation from regular life and figure it out – regardless of the fall-out on his family – well, then I don’t think he’s very emotionally healthy.
            I don’t know about what is dysfunction and what isn’t. But if a person is controlled by their emotions to such an extent that they figure that “too bad on my spouse/children/parents, because i’m going through something,” then this a place that needs healing. It’s wonderful if a person who underwent trauma can find a partner who knows how to deal with this. But don’t take us for granted. It’s not easy! How many times have I felt tremendously resentful that it was me left looking after our kids, worrying about money, dealing with absolutely 100% of everything because my husband’s story is “I’m not emotionally strong enough to deal with responsibility.” Maybe he’s right! But to accept that as the way things can stay without taking into account how that impacts on those around him is not healthy.
            Yes, we have to accept people as they are NOW. But that doesn’t mean that we have to tell them, “stay that way forever.”
            And, surely there is a difference between looking for a partner because of a deep love of attachment and the sense of fulfillment it brings, Vs looking for a partner because one feels defective without one?

          • julia26, once again I agree with a lot of what you wrote. As far as MiA’s editorial decision about SOs, though, what I think you may be missing is that Sam wants to talk specifically about his wife and her experiences with extreme dissociation. The “mh” professionals who post here don’t usually write about specific individuals – at least not from what I’ve seen. I’m just a commenter like you are, but I agree with MiA’s decision on this.

      • I don’t see MIA as silencing specifically SO (which I assume is “spouse” or whatever. I do see MIA as publishing more degreed people (mental health degrees) that non-degreed people. You can see my comment of my own tally I did in the forum unless it was taken down. I see this trend as elitism.

        However, this is reflective of the elitist society we live in, where such degreed people have far too much power and authority over our lives. I would like to even argue that we are living in a tiered society, that divide ever-widening, made more divided by mental diagnoses, the tier between the “needy sick” and those that supposedly serve them as “treators” and hold financial, judicial, economic, and political power over them/us.

        The divide needs knocked down. We need to attack it at all fronts, in any way we can. One way is to discredit psych diagnosis, and not use diagnoses nor pseudo diagnoses ourselves.

        If a spouse or family member submits to MIA I imagine it would be treated about the same as any other submission. They do peek at who wrote it, and this means they do note the letters after your name.

        Many publications have a “blind submissions” policy, that is, all identifiers such as the cover letter that includes the author’s name are stripped off, and then, the submission is sent to another editor who makes the decision. They might also have a policy that you cannot put identifiers within the body of the submission.

        Let’s put it this way. If you write to your local paper and with or without “blind submission,” you write, “I have a mental illness and I was kept in restraints for five days….” This will be sent to the trash can as “just another psychotic….why do we get so many of these?” Sad but usually true.

        • Julie,
          that may be the truth in your case, but I was specifically told what I wrote by someone with direct access to the entire staff. Unless my wife ‘validates’ me, I’ve pretty much been told, I can’t submit anything on this website other than in the comments section like I have been doing. It’s a little disappointing, as I see so many hurting people. And I go back and forth between being frustrated by their attitude and pulling back, and then I saw Emily’s current blog and it tugged at my heart so deeply because it simply does NOT have to be that way, if SO’s and families knew they could make such a huge difference. And I realize there are TONS of ugly SO’s and families out there who ARE the problem, but not all of us. I’ve also been contacted by so many on my blog who were desperate for answers. But too often I’ve seen the ‘experts’ blatantly say that they alone should deal with d.i.d. And it’s simply not true. I can do things an ‘expert’ NEVER can do because I’m there 24/7. I’m not anti-therapist. I’d love to see them collaborate with us, but they need to learn where they can best help, and it’s NOT trying to usurp the attachment roles like is currently happening over at ISSTD.
          Sam

          • Samruck, if that is the case, I hate to disappoint you but I concur with the MIA editors. As you know I am a professional writer AND ex-patient who has also done editorial work and I know the field very well. I was published here at MIA many times but then was told that my limit had been reached by default.

            (I admit I recently blew my top at the editors over “the small stuff,” but I do hope they read this and forgive brief little acting out that was in fact a reflection of decades of silencing and unfounded discrediting. Yes I displaced my anger onto MIA editors, which was not cool. But this is not relevant to the issue of spouse writing about the person in question.)

            Now in your case, as I see it, from point of view of patient, IF a former doc, or former therapist submitted an article about me in a publication, without my consent and complete concurrence…YIKES! I would feel violated. Even when I was doped up I would have felt the same way.

            While I happen to be a total ham and love being in the limelight, love to perform for an audience (if I can find one) which is part of my nature (I was a trained musician), I would NOT want to be illustrated as a disease by a therapist. Especially if the therapist (and even supervisor) writes the whole thing.

            To throw off one’s patient identity and become the main subject in your life means you must stop acting as object, cast that role aside, and take on the role of protagonist.

            If I am the subject, then kindly pass me the pen. Or, perhaps, Nothing about us without us.

          • how did we even get here, on this subject??? I write using my blog’s pen name. In doing so I have my wife’s COMPLETE permission to write about OUR experience and how I have helped her and carried her thru the healing process and done what the ‘experts’ would claim is impossible.

            In the end MIA’s policy is their policy and I’m NOT trying to create a fuss about it. I think this movement is the worse for their stance, but I do understand that the overwhelming majority of the victims of the mental health industry can’t even fathom the relationship my wife and I have. It’s why Emily kept questioning and questioning me about my definition of ‘healthy’ and ‘dysfunctional’ because, sadly, most people can’t even fathom NOT having their mental health issues used against them, but instead being joined on the journey to see them healed while maintaining COMPLETE agency in all decisions despite the fact that I unapologetically take the lead with her healing.
            Sam

          • Hi everyone,

            We can’t speak for the MIA editors in terms of why they make the decisions they do with regard to allowing SOs to write articles, but from our perspective, especially as autistic people, it makes sense to be suspicious of friends and family writing about us on our behalf.

            There is a long and very damaging history in the autistic community of friends and family (“autism warrior moms” being the most egregious example) talking about us on our behalf, and saying all kinds of patronizing, paternalistic things, and talking about us like we’re burdens on them and nothing more. Because they are close to us in that way, they assumed to be “experts” on us and our lives in the same way psych professionals are, if not more so. However, they often use this platform to spread misinformation and stories of martyrdom, and this has gotten autistic people literally killed.

            None of this is to say that anyone here would do anything of the sort of course!! We know that you all, especially Sam, care deeply for your SOs and family and mean them no harm.

            It’s just that there is no way to be sure whether someone is the good or bad kind of outspoken family member, and guessing wrong can have severe consequences.

            Another thing, and we don’t mean to offend here: you really, truly, cannot speak on behalf of someone in the sense of being able to give a first-person account of what living as that kind of neurodivergent person is like. We absolutely support SOs having a space to talk about what it’s like for them as SOs to help their loved one cope, but we strongly caution against the idea that you can speak /for/ them in any meaningful sense.

            Just some thoughts, thanks for listening,
            ~Skylar

          • Skylar that was so brilliant. I have witnessed similar things. I agree, in ANY situation, you simply cannot fully know what another person is experiencing. You don’t have their past behind you, you cannot live in their body, nor feel the same things they feel.

            Empathy can only go so far. Perhaps you have read Rilke’s beautiful discussion of “inseeing.” It is transformative, intuitive, and far too sacred to ever happen in a shrink’s office where one party pays another.

            I am thinking that in a really close relationship, such as marriage would be ideally, inseeing would be part of that relationship. I can’t see it projected elsewhere in the artificial sense, such as onto an online discussion, onto a “case study,” or newspaper article.

            Maybe such expressions of deep love should be encapsulated in creative arts, poetry, and music, where the sacred can be safely preserved.

          • I’m sorry that each of you has experienced such terrible things at the hands of those who professed to love you that you can’t imagine anything different. I don’t ‘speak for’ my wife on my blog. I share how she and I walk the healing journey together and the things that anyone can do using attachment principles, among other things, to help another who is experiencing mental health issues whatever they might be. But I really don’t see the point of continuing this discussion as my opinion is irrelevant on this subject .
            Take care,
            Sam

          • Hi Sam,
            What we can or can’t imagine due to trauma is not relevant. someone who does not directly experience a neurodivergence cannot have a full understanding of what living with it is like and thus cannot presume to speak on behalf of an ND person. That’s all we meant.
            We have no opinion on whether you speak for your wife and girls on your blog, and we did not mean to come off as attacking you personally.
            We wanted to share the perspective of the neurodivergence movement on how harmful it is to be spoken for in the way we described and why the principle of “nothing about us without us” is necessary. We’re sorry if we were harsh or implied a personal attack.
            ~Skylar

    • Hi Samruck2 – I didn’t read through this whole thread – I am just responding to your comment to me at the beginning of this thread because I think there may have been a misunderstanding about what I said. I meant that many SOs might not feel comfortable working together with other SOs online, or with sharing any information (except in a completely anonymous way) because their loved one is not able or willing to give informed consent for the sharing. (I wasnt talking about any decisions that MIA might or might not make in this regard). By the by I thought MIA did include articles from SOs ( I am thinking of Eleme Hassamar’s very moving story about her daughter).

      • oops …the comment above showed up in the wrong place….I wanted it up under my other comment near to where you responded….I know you write anonymously about your wife …all I meant is that if SOs connected directly with you , then THEY would no longer be writing anonymously and that might be why it is hard for you to get people to work together. Sorry if my original comment sent things on a tangent :)))

      • Sa,
        no, that was my fault. My head was going in one direction when I responded to your comment and then realized you had said something completely different…my bad. You were clear.
        Sam

  36. Julie – but in that case, why have articles by “professionals”? I gave up on them long ago. They only made things worse and that was apart from the drugs they wouldn’t stop pushing. Even those who were supposedly anti-meds were at best useless.

    • Julia, yes, I, too, found that “professionals” that I myself consulted were not helpful. Some harmed me deeply.

      I have strongly disagreed with MIA’s favoritism of MH degreed bloggers. As I stated in my forum post, something like 61% of blog posts (not including comments, but the posts themselves) were written by MH degreed people. I tallied all these up, and somehow broke it down into categories. At the time, all MIA radio broadcasts were by MH degreed people with the exception of Eleanor Longdon. All classes were geared toward MH degreed people and taught by MH degreed people. I offered to teach a writing class (I have a masters) but that idea was killed by the editors.

      I concluded that by far, not enough articles were written from the legal perspective. I wish more law students, attorneys, and paralegals would submit, especially since these cases often come up in the courtroom. I very much appreciated Breggin’s recent reports on a particular court case that has been in the media spotlight.

      I think there are some who don’t believe much can be done to turn the tide. And yet others who feel we can. I see friction between these groups, the Yes We Cans and the Don’t Even Bothers. As I see it these squabbles play out on here.

      • All classes were geared toward MH degreed people and taught by MH degreed people.

        Right, because they are primarily designed to be continuing education classes for “mh” professionals, which is a brilliant way (imo) to positively influence people in those professions. They don’t need a writing class.

        • Uprising, this writing class would not have been a general writing class, but specifically a class in memoir so people such as survivors (if you call yourself that) or ex-inmates can effectively write their stories. Good writing sells, less effective writing won’t sell. Imagine if we could get more stories out there, well-written stories that illustrated our credibility. People need to cultivate ideas on where to start their story, how to frame it, issues regarding point of view (this can get VERY complex), and many many more difficult questions.

          This would have been a very relevant class to our mission. Sadly, the editors didn’t want it. Part of me says, “They didn’t want the class because I was the one proposing it.” I know I’m not a big name, and it wouldn’t turn into a CEU, it would be helpful to survivors. What if an MD proposed it (even though an MD has no creative writing training typically)? It won’t be because an MD isn’t qualified.

          We know that if more stories came out, in either traditional publication, or online, or even as book-turned-movie, more would join the fight and those fortresses will crumble.

          For years people have asked me writing questions and I try my best to answer. All kinds of questions, some related to writer’s block.

          The goal of the establishment is to silence us, ensure our stories are not heard. Many feel too exhausted or are discouraged from writing, or are told they are incapable.

          MIA still upholds the authority of so-called professionals. I can’t even stand calling them professionals after what I saw on the wards.

          • Yes, I remember this. It’s not a bad idea, but it doesn’t exactly fit in with what MiA is doing with the continuing ed courses. I mean, if the target audience is “mh” professionals, then why would they be interested in writing survivor narratives? I doubt that this had anything to do with you personally or your “survivor” status.

    • Julia26, I couldn’t agree more. Why do “professionals” and people with lived experience, have more credibility in the court of public opinion here (on this comment thread) than family members, who are also experts by lived experience? I take a very skeptical view of professionals and alternative healers, and prefer to cherry pick the ones that can help my relative. I try to avoid “professionals” as much as possible, because aren’t they the reason MIA was created in the first place? As a reaction to the damage done by mainstream treatment? Professionals here on MIA write about their clients all the time, but don’t use their names. Neither does samruck2, so why is his voice, and the voices of other experts by lived experience, being told to sit in the comments section?

      • Hi Rossa,
        I’m sorry I stirred this hornets nest. It just makes me so sad to see some of the stuff that is written on this site as much as I respect MIA’s purpose and desire, their experts are still mostly experts in ‘theory’ whereas we SO’s and family members are experts in ‘practice’ because we are in the trenches and never get to say ‘time out, end of session’ or “these are my boundaries, and what you need is outside of what I offer.”

        So I had to figure out how to bring my wife out of catatonic states, how to help her process flash backs, how to calm her when she was hit by panic attacks and night terrors, how to undo the attachment issues that each girl had, how to tear down the dissociative walls between the eight girls, how to undo the neural atrophy that resulted from 45 years of dissociation, how to be a completely safe person in ALL areas of our lives including physical intimacy, how to respect her agency and yet not flinch when she made it clear she needed my help and guidance because she didn’t know how to get to ‘healthy’, how to turn my wife’s d.i.d. into something that brought our family, including our son, together, rather than tore it apart, and so much more. I, like other SO’s, had to figure out how to make this work lest it tear our entire lives apart, and I had to do it despite the massive stress and secondary trauma her issues have sent my way. I love her. She didn’t desire this, but it has cost me everything including my birth family to stay with her.
        Sam

  37. I have somehow lost track of the ordering of comments here. Julia, I can’t speak for others but I don’t personally encourage people to “stay that way forever” or stay any way forever simply because this doesn’t happen, time changes us. We get older, we change, we grow, we die, and people and things and even climate all change.

    We cannot even state nor promise “recovery forever” as some programs actually do (if you obey them and keep on paying them money). These programs and their sweeping promises ultimately fail.

    I don’t suggest a passive approach such as waiting for some authority (parent, doctor, spouse, clergy, God, Jesus, magic pill) to somehow come out of nowhere, sweep down and “fix” our lives. In literature this is actually considered a cop-out method of ending a story, a bad plot method. A classic example (if you recall) is the ending of The Poseidon Adventure. At the end, they couldn’t leave the capsized boat. Stuck. Lo and behold someone had found them and cut through the boat. This plot twist was heavily criticized because all the way through, the protagonists had done for themselves, had taken responsibility instead of passively hoping for divine intervention, which was the preacher’s original message, way back in his sermon in the beginning, right? Whether you are religious or not, responsibility is the key here.

    Taking responsibility might mean taking back your right to decide for yourself, instead of passively allowing parents or doctor or therapist to decide for you. This takes a lot of practice since what people do (and I’ve seen this…) is that even after getting rid of the shrink, they then grab the nearest substitute. This won’t work.

    The System lied to us, forced us into relinquishing our control over our lives. Take it back. Take back your body, your mind, your life.

    • Julia, I get where you are coming from, but from a mother’s perspective, this is not the Poseidon Adventure. I have the impression from reading your comments over the years that you figured it out for yourself, maybe later than you would have preferred (my impression only). Wouldn’t I have loved it if my son could have figured it out on his own, at the age of 20, or maybe even 25? Even 30. It would have made my job a lot less stressful. My son was quite willing to do whatever anyone told him to do, and that included the “professionals” who told him he had a life long disease, needed life long medication, and should lower his expectations. How long would it have taken him to figure it out? He didn’t do the heavy lifting. (He lacked the concentration to even read for quite a while, let alone do his own research.) He was scared and confused. How long should someone wait? My role was to encourage him to take responsibility for his life. The problem was, for the longest time, he was unwilling to take responsibility, or was unable to do it. We hear a lot on MIA from the people who figured it out for themselves. For some people, unless they are encouraged, it ain’t going to happen. Isn’t encouragement and hope what everybody in MIA claims is missing from mainstream treatment?

  38. Anyone else notice how the “significant others” complaining here about not being centered on MiA don’t seem to care very much that most (all?) of the psychiatrized commenters on the thread disagree with them about that?

    • 1) Very few of the “psychiatrized commenters” here have even expressed an opinion on whether SOs should have a voice or not.
      2) None of the SOs here have expressed any desire to be “centered” on MiA.
      3) So many of the “mad” people featured here have tons to say about how they want understanding, acceptance, assistance, warmth, caring – you name it – from people. How about that going both ways?
      4) And when you do get all the help you want from people like samruck who have basically dedicated their lives to helping “mad” people, all you have to say is “give, give, give, and then shut up – i’m not interested in your opinions.”
      5) People at MiA can do whatever they want with their site. But I have yet to hear a convincing explanation as to why psychiatrists (the “nice” ones) can blog here all they like, but people like me who are “nice” (or trying to be) therapists all day long with never a break, are denied that. How about making some sense rather than just attacking?

      • Wow, this is more self-righteousness than I can wrap my brain around right now. I’ll be back a little later. In the meantime, please read or re-read what Skylar wrote earlier. You are completely missing the point.

        • Firstly, maybe you can stop the personal attacks?
          Next – I reread what skylar wrote. My interest is not to describe to anyone else what goes on with my “significant other.” If he wants, he can speak for himself. But, if “mad people” are so totally uninterested in hearing how they come across from the outside, then… enough said.
          Finally – you still didn’t answer my question. Why do “nice quacks” get a voice here and SOs don’t?

          • hi all,
            We admittedly haven’t read the pieces by psychs/therapists on here, but we assumed that they were there to provide an insider’s perspective on how the psych system works and how to combat it. But if they presume to speak for or act like experts on ND people, we would condemn that as well. (granted we’re not editors and get no say, but in principle this is something that should not be happening)

            Again, there is nothing wrong with SOs talking about their experiences, what they do to support their loved ones, how they work on being allies to ND people, etc. The only problem we have is if SOs try to talk about the neurodivergent experiences of their loved ones as if they know just as much simply living with those people. That’s where there is potential to get into paternalistic “autism mom: territory.

            In our opinion, SOs should be allowed to contribute (and, please correct us, but aren’t they allowed currently?) as long as they understand the limits of their knowledge and accept that it does not equal that of a person or people who experience neurodivergence first-hand.

            That’s all. Thanks for listening,
            ~Skylar

          • I’m going to ignore the ridiculousness about “personal attacks.”

            it makes sense to be suspicious of friends and family writing about us on our behalf.

            There is a long and very damaging history in the autistic community of friends and family (“autism warrior moms” being the most egregious example) talking about us on our behalf, and saying all kinds of patronizing, paternalistic things, and talking about us like we’re burdens on them and nothing more. Because they are close to us in that way, they assumed to be “experts” on us and our lives in the same way psych professionals are, if not more so. However, they often use this platform to spread misinformation and stories of martyrdom, and this has gotten autistic people literally killed.

            That was the part of Skylar’s comment that I’d had in mind. You are asking the MiA staff to put themselves in an impossible position of parsing who is or is not acting in the best interest of their loved ones.

            In reply to your earlier numbered points:

            1) Fair enough; it’s a small sample size for sure, but note that everyone who did respond disagreed with you. Also note that the arguments that we made were summarily brushed aside so that you all could complain more about your supposed marginalization.

            2) You are asking to be given equal access to having your personal stories (i.e., stories about your own “identified patients”) published here, so yes, you are asking to be centered.

            3) This is so general as to be meaningless. All kinds of people comment here.

            4) see above, and also: I’ve never asked assistance from samruck2 or any other wanna-be therapist posting in the comments. And though I’ve been critical of some aspects of Sam’s comments in the past, I’ve never told him to shut up.

            5) Because wanna-be therapist SOs posting blogs about their own “identified patients” create the problem for MiA that I noted above and dissident “mh” professionals don’t. That would be my guess, anyway.

            Also, there seems to be an assumption built in to a lot of your comments that “mad pride” is about using “madness” as an excuse to treat people badly. I have mixed feelings myself about the concept of “mad pride,” but I don’t think that your characterization of it is accurate.

  39. I don’t think that SOs in general are wannabe therapists. I think the opposite is the case – that we would much prefer to be in a mutual relationship but for whatever reason, ended up being default therapists without the skills, information, available time, finances etc. to do so.
    It would be my guess that you could very often rely more on a committed, long-term SO to treat the “mad” relative with love and respect, than you could rely on a paid “MH professional.” I personally don’t understand how one can treat attachment issues successfully by going to a paid therapist for treatment. After all, at the end of the day, they are in it at least partially for the money.
    I think you could give a little more credence to those of us who have stayed married to emotionally complex spouses for decades rather than taking the easy way out. There is nothing really “in it” for us. We don’t have support systems either, usually, because of privacy issues.
    I make no assumption that people use “madness” as an excuse to treat others badly. What I did suggest is that part of healing is to realize the impact one’s behavior has on the other people in one’s life. There is a big difference between these.
    Personally, I have no desire whatsoever to post my own story here. I have never and would never presume to understand my husband’s challenges, though I would love to understand better. I would also hope that he would want to understand mine, and that is where we differ, because you don’t seem at all interested in seeing things from the other perspective.

    • Hi Julia26,
      Your comments are a breath of fresh air, as are those of the other family members who have commented. Julia26, you hit one of MIA’s Achilles heels. In MY experience, anti-psychiatry (psychiatry-critical, anti-pharma, or what-have-you) family members have never had a voice here, which is fine, but which is unhelpful in the ‘big picture’ sense of advancing change. It might have been productive if MIA had carved out a small space for MIA-friendly family members (an ‘anti-NAMI’ spot, if you will) when the website was relaunched. It didn’t do that, and instead took a much different direction (again, fine for MIA). Some might say, ‘Build your own site/community,’ but I daresay we’re all too exhausted (…) to take on more commitments. Julia26, Cheers to you, your clear common sense, and your energy! I’m not commenting again, but if you (or any family member) would like to continue a chat I can be found at [email protected]. Best to all.

    • This conversation seems to be walking a very fine line, between allowing SOs to express their feelings, experiences, and completely legitimate need for support and solidarity, and on the other hand, what we’re afraid of: treating ND people like we’re burdens.

      this is not to imply that this is what you’re doing, Julia, just that we worry that giving too much unmediated space to SOs might devolve into talking about how burdensome ND people are, making SOs look like martyrs, acting like superheroes for /daring/ to support ND people since we’re /so/ difficult to deal with…etc. Again, not saying that you’ve done anything of the sort, but this is what we’ve seen happen often in “autism family” spaces and it just perpetuates ableism and stigma against ND people. It’s a very hard line to walk to ensure that SOs have space without having “freedom” to do this awful stuff.

      we do agree that in many cases, committed SOs can be more effective than therapists. (though we are slightly put off by your phrasing that you’d rather have a “mutual relationship”–is that not possible with an ND person?) of course SOs have valuable experience and often a good understanding of how to help their ND partner(s), and we would of course welcome your perspectives. that is, provided that you respect our agency and expertise on ourselves.

      Thanks,
      Skylar

      • Thank you for expressing yourselves so clearly. The fact is that not all people can. If only my husband was as eloquent, as able to access his emotions. But, not all people have much insight into themselves. Not all of them are motivated enough to try to figure it out. So in many cases, there is a very one-sided relationship which is very painful.
        Of course it is painful to feel that one could be a burden on others. I think that anyone who reached that stage of feeling the pain that they cause others, is already not such a burden at all. I’m more writing about the person who didn’t get there yet. Of course the psychiatric system only encourages “mentally ill” people to see themselves as incapable. Trying to undo about 25 years of people brainwashing my husband that taking responsibility is somehow dangerous for him is hard. Maybe impossible. Maybe he really isn’t capable of shouldering a normal adult burden and I will have to keep struggling to find the contribution he makes.
        Yes, there are things I gain, actually invaluable things such as working on my anger, my desire to be in control of my life, my ability to empathize. But just because it’s painful for you when you hear us say, “Look, it’s hard work being father and mother all at once,” doesn’t mean you can just ignore it and take it for granted.
        I’m sorry if I hurt anyone through what I have written. It certainly was not my intention. I am no martyr, I often lose my temper and yell at my husband and get overwhelmed by everything. I would value any advice that can help me see things more clearly and move in a positive direction.

        • Hi Julia,
          I’m sorry I abandoned you. I just haven’t been up to the constant questioning of my motivations, etc, on here, so I stepped away.

          The biggest thing that helped me deal with my anger issues was to completely own my decision to stay with my wife. 29+ years ago, I did NOT sign up for what my marriage became. I dreamed of a fairytale marriage and instead it has been difficult to put it minimally. And so when she and I began to walk her healing journey together 10 years ago, it took me a couple of years of journaling, but I finally came to the place where I understood the challenges of having a d.i.d. spouse AND I understood that, for me, walking out would ‘kill’ parts of myself that I simply wasn’t willing to see die. And so I made the decision, over time, to accept my wife for where she is, instead of where I wish she were, and I understood that with that decision, I was accepting a certain amount of daily heartache. That doesn’t mean there aren’t any good things in our marriage. I love all my girls and they are truly delightful, but I thought I was marrying a woman and instead I ended up, essentially, having to raise my wife via the 7 little girls.

          It’s not easy. I struggle with suicidality at times in a way that NONE of the girls do, but it is what it is. I wish I could say their was a magic pill. There isn’t that I’ve found, but I love my wife and part of the reason I work so hard to help her heal, connect and mature is my hope for a win/win for both of us.
          Sam

  40. “normal adult burden”

    Who gets to define this? What gifts might a person possess that aren’t valued in this society and are discounted (don’t make money)?

    If no gifts are perceived (by the deciders), is that person then useless and thus, a burden?

    • Anyone can define it as he pleases. Yes, often it means making money. It could mean cooking food, doing laundry, changing diapers… It could mean offering a listening and compassionate ear when needed. It could mean contributing to decision-making and accepting an equal responsibility re: consequences.
      I won’t comment on anyone else’s situation, but I would like to point out that many SOs are doing all of the above alone. They are the ones offering the listening and compassion and many times, they are not getting it back.
      Sometimes they get help from their SOs but that’s not the same as having someone there who takes initiative.
      It’s easy to pooh-pooh the value of making money – but just remember that if your spouse isn’t doing it, then you will have to. Maybe you grew up with the expectation of having to financially support your husband – I know I didn’t. Not every woman wants to work while bringing up children. Not every man wants to come home after a day’s work and cook supper, wash dishes, and do the laundry.
      Where I am now, it’s 2am and I’m at my computer working. My husband is asleep because “if he doesn’t get enough sleep, he is emotionally unstable” – in the past, chronic lack of sleep has contributed to psychosis.
      Now, you may want to say that this is a perfectly mutual relationship, and that I’m simply not appreciating my husband’s many gifts. Maybe you’re right. But would you please try to see it from the other side?

      • humanbeing makes a very good point (also thanks to uprising for helping us make our point so effectively). the value of a relationship does not always lie in its being equal from a monetary standpoint and there are many other things someone can offer that make a relationship worthwhile even if it can’t always be equal due to one person being disabled.

        Julia, we really don’t want to come across as rude here. it’s just that this is the kind of thing we’ve been concerned about. it feels to us like all we’re hearing is why your husband is such a horrible burden to you and how much you’re upset by having to take care of him. we’re trying to understand your perspective here but all we’re hearing is how awful it is for you to have to deal with him in your life. we’re sure you have reasons to want to stay with him aside from feeling emotionally obligated to but if not, it sounds like your relationship is not doing either of you very much good.

        it makes us as ND people (Skylar especially takes the brunt of the PTSD and emotional instability) feel as though we are unworthy as people to be in relationships at all. why bother if we’re just like additional children who need to be cared for?

        we’re actually in an in-system relationship (that is, with each other) and we’ve been able to work out ways to both contribute to each other’s emotional well-being and stability by setting boundaries, communicating our needs, etc. of course it’s much easier said than done and we don’t know your situation, but with all due respect, is it really helpful to explain in great detail to a lot of people on the internet how much of a burden your husband is?

        sorry for the rant, and apologies if this got too personal–we didn’t mean to attack your relationship or offer unsolicited advice. this just touched a nerve with us. it makes us feel like you only see ND people as burdens when it is possible to have healthy mutual relationships. maybe that’s not possible with your husband, and if so, our condolences and may you work out what is best for both of your needs. but don’t make it sound like that’s the case for everyone.

        thanks,
        ~Skylar and Missy

        • “it makes us feel like you only see ND people as burdens when it is possible to have healthy mutual relationships. maybe that’s not possible with your husband, and if so, our condolences and may you work out what is best for both of your needs. but don’t make it sound like that’s the case for everyone.”

          Did you read what Julia26 wrote, over, and over, and over again?

          • Many of us ended up in the MH system *because* of our SO/family members.

            Why is THAT so hard to understand?
            also

            I know I wouldn’t want to be in a relationship with someone if there was a marked lack of reciprocity…not beneficial for either of us ultimately, eh?

        • You are continually distorting what I write.
          I have included virtually no details about my life and yes, as you admit, you have no idea at all about me or my husband, and that’s the way I would rather it stayed.
          You write: “Why bother if we’re just like additional children who need to be cared for?” Absolutely. That’s my point. If a “mad” person wants to see him/herself as a child and incapable of a mutual relationship, then I would call that dysfunction.
          I listed all kinds of contributions any person can make to any relationship. You instead set up a straw man to attack.
          If you believe that you have what to offer in a relationship, including the understanding that your behavior impacts on those around you, then that’s wonderful, and I wouldn’t call you “mad.”
          Thank you, Rossa, for your support. It’s a shame that the comments section here has revealed a very clear divide in those on each side of the story. Some people have clearly used their traumatic experiences to take things further and help others in their trauma, but others are more interested in blaming.
          I see my husband as healthy when he manages to step outside himself and take other people into consideration despite his own difficulties. I see him as sick when he is so self-absorbed that other people’s concerns are irrelevant to him. Yes, at times of crisis people are generally (though certainly not always) incapable of taking other people into consideration. But to turn that into an acceptable way of life is wrong.
          Everyone can be a burden at times, regardless of DSM diagnosis. I hope that if someone told me that a certain aspect of my behavior was causing someone else pain, I would be able to respond honestly and with a desire to solve that problem. I understand that it’s painful and that people with a background as psychiatric victims are defensive about this. But denying that aspects of your trauma-induced behavior causes others very real pain is not going to help anyone.

          • I guess in the end it comes down to this: Are you an ally? Or are you part of the problem?

            I’m sorry you feel as if your concerns are not being heard, and I empathize with what sounds like ‘burnout’…the nuclear family seems to isolate people when it (sorry) “takes a village”.

            I used to think my autistic brother was faking it.

            He certainly never had to be responsible for much of anything when I was growing up, and the burden of his care fell disproportionately on me, the eldest daughter.

            A thoughtful person would course-correct with feedback from the environment, but how often do ‘normal’ people do that?

            It’s up to us to decide what we can deal with and what we can’t…the older I get the better I am at setting boundaries.

          • If you believe that you have what to offer in a relationship, including the understanding that your behavior impacts on those around you, then that’s wonderful, and I wouldn’t call you “mad.”

            Sure, we should all let you define what madness is who is mad based on how that fits with the narrative of your dysfunctional relationship. Feel free to continue projecting your relational problems onto people you don’t even know. Because that’s a really cool thing to do.

          • Julia,
            We overstepped our boundaries in assuming things about your marriage, and we’re sorry. we won’t do that again.

            However, don’t twist our words and say that any ND people want to see ourselves as children. That’s exactly the disgusting ableist idea we’re trying to combat here. no one wants to be seen that way and we never implied anything of the sort.

            please don’t tell us how to identify. we’re a multiple system, autistic, with PTSD and enough emotional divergence that we’ve been diagnosed with several personality “disorders”. we claim labels like “mad” and “insane” because we deal with being stigmatized as abusive and potential murderers just for existing as we are; we’re taking those terms back and showing that “mad” people can function in relationships, even if we do so differently than the majority of people.

            and what is this about our “trauma induced behavior” causing others pain? don’t tell us not to presume things about your life and turn around and insinuate that we and others who are traumatized must be hurting people! don’t you see how blatantly offensive that is?

            ~Skylar and Missy

          • Julia, I agree whole-heartedly with what you say here:
            Everyone can be a burden at times, regardless of DSM diagnosis. I hope that if someone told me that a certain aspect of my behavior was causing someone else pain, I would be able to respond honestly and with a desire to solve that problem. I understand that it’s painful and that people with a background as psychiatric victims are defensive about this. But denying that aspects of your trauma-induced behavior causes others very real pain is not going to help anyone.

            I’d like to add, though, that there are (at least) 2 sides to every pattern/dynamic, and many of us have been scapegoated as The Family Problem, the “identified patient” whose perspective is completely disregarded, or worse yet, twisted to confirm the pathology narrative. Most every psychiatrized person I’ve met has greater sensitivity to the fucked-up family dynamics they are caught up in. We get “caught acting crazy” but nobody ever seems to catch the crazy-making behaviors of those around us to which we are reacting. This website is our safe space, our haven from that crap.

            Please understand that I am making generalizations here; not talking your family or mine, but rather, the shit that tends to happen to us.

  41. I am confused about this thread. It seems to be saying that SOs can’t post on MIA and that they shouldn’t have posts. Robert Whitaker wrote in one comment section this:

    “MIA’s mission is simple: We believe the current paradigm of care is harmful (and based on a “narrative of science” that is belied by the science,) and needs to be rethought. We believe that this “rethinking” should involve people with different experiences and different ideas: people with lived experience, professionals, family members, philosophers, social workers and so forth. It really is meant to be a forum for expressing diverse opinions, with the only unifying thought that the current paradigm needs to be rethought.”

    I know that there are at least some posts from SOs on MIA, and I would be very disappointed if it really was the policy that SOs are not allowed to post about their experiences.

    *I would so appreciate if the MIA staff would clarify what the policy actually is on this thread.*

    Like the SOs who have posted here, I also believe that SOs. not following the mainstream psychiatric path, provide invaluable information and ideas that are rarely heard. They can provide information about how a ‘new paradigm’ could actually work in a very real and practical way; particularly in places where there are no alternative humane and respectful ‘sanctuaries’, and particularly for those not yet able to live on their own, and for those who do yet speak up for themselves. Samruck2 and Julia’s comments show how the ‘current paradigm’ can leave loving spouses in situations where they must either take on a 24/7 support role, or risk having their loved one be subjected to truly damaging support.

    SOs can provide a strong counter narrative to the idea that severely suffering people need to be institutionalized, or forced drugged in order to follow a recovery path. They can give real information about what progress looks like, which could provide an enormous amount of hope for people, and open the door for more and more SOs to act as allies.

    I really like how violenttransempire summarizes the following: “In our opinion, SOs should be allowed to contribute……as long as they understand the limits of their knowledge and accept that it does not equal that of a person or people who experience neurodivergence first-hand.” I would add to this statement, that when ‘second -hand’ information is all that is available (e.g. as is for some people who are severely suffering), the 24/7 second-hand knowledge of SOs, gives what seems to me to be much deeper information that professionals just don’t have.

    Of course there will be things that SOs get wrong. That is why it is so important to have debate in the comment section from survivors and others. The discussions in the comment sections are, I think, how we all come to a deeper understanding of the issues on this website. ( I know, for example, that I have found this particular thread very illuminating in its discussion about burden, loss and love)

    • It’s not clear what you mean by “post.” We haven’t been talking about posting comments, but only about significant others and family members posting articles on MiA *about* their loved ones without any input from said loved ones.

      • Yes I can see what you mean about how confusing my comment was as I used ‘post’ to refer sometimes to posting articles and later when I was talking about posting comments:((

        So what I meant to say:
        “I am confused about this thread. It seems to be saying that SOs can’t post ARTICLES on MIA and that they shouldn’t be able to post ARTICLES….”

        and then “I know that there are at least some ARTICLES from SOs on MIA, and I would be very disappointed if it really was the policy that SOs are not allowed to post ARTICLES about their experiences…..”

        and then later I used ‘post’ when I was referring to comments:
        : “Like the SOs who have posted COMMENTS here, I also believe that SOs. not following the mainstream psychiatric path, provide invaluable information and ideas that are rarely heard.”

        • just to clarify for everyone in this thread, we’re pretty sure that SOs are currently allowed to post articles on MIA, as long as their articles are in line with MIA’s general theme/mission. there’s not some kind of ban on SOs being allowed to talk about their experiences, if we’re correctly informed. so we’re not quite sure how this discussion (meaning over the course of several sub-comment threads not just this one) even started if the premise is that SOs aren’t allowed to contribute, because they are. they’re just not allowed to say anything ableist or that goes against the premises of the ND movement, correct?
          ~Skylar and Missy

          • Skylar/Missy,

            that is NOT my understanding of MIA’s stance. I was asked to blog for MIA by someone whom I would think has the authority to do so based upon that person’s position with this website. But when that person talked with the staff at MIA that person was told that “nothing about us without us” meant I couldn’t say ANYTHING about my wife and my healing journey together on my own even though my slant on my blog has ALWAYS been about how we SO’s can influence the healing journey for good and also a little about our (SO’s) struggles in the midst of the journey. I probably white wash my blog too much, as I try to keep it mostly positive.

            So anyway, that was what I was personally told. If you know otherwise, then maybe the staff simply has a personal problem with me and not other SO’s in general. Since none of them have stepped in to clarify the position of MIA, all I can offer is what I have been told, and in the end, I feel the movement as a whole is worse off. I really liked the idea of an ‘anti-NAMI’ group, but I don’t know how to do that, and I’ve got my hands pretty full helping my wife, which is probably the same for most non-NAMI SO’s who are helping rather than taking the typical stance.
            Sam

  42. This is about my seventh attempt to post a response. Forgve me for putting it on the bottom but after all those attempts I just can’t scroll around to try to find the “right” place to put this.

    Say there really are EVIL People in the world. Then, doesn’t that mean some are NOT EVIL. It does. Some, according to this assumption are surely EVIL, while others, maybe the rest of us, are OKAY.

    What do you propose we do, since “some are EVIL.”? Say, lock them up? How about a concentratioon camp for Evil People? If they really suck that badly, why even bother? Just kill these inferior sub-humans.

    See, by calling some people evil, that’s re-creating the split society, with some “okay,” and some deranged. This is what the System taught us.

    how about holding the fully human people , which I would like to suggest we all are, totally accountable? Some commit horrible crimes. Many psychiatrists are criminals. They’ve committed some of the worst crimes in history. The crimes they committed were, and continue to be, based on the principle that some folks just aren’t good enough.

    Let’s not duplicate what they are doing.

    • I agree 100%. That’s why I find it best to focus on evil ACTIONS. The Rosenhahn Experiment and Nazi Germany, as well as many other examples, prove that many “regular” people can commit evil acts under the wrong circumstances. Let’s work at changing the incentives so that doing evil things doesn’t pay off!

  43. This is in response to Sa’s comment, but again, I don’t have the ability to sort through the posts so I am sorry for misplacing this comment. SO’s and anyone interested might want to know about the Maudsley method of treating eating disorders. This is done at home. Hospitalization is discouraged or just not done. The family apparently helps the child eat again. I know a few who have been through this method. From what I know, the success rate is much, much higher than the usual force method. There are a few families that aren’t a good fit for this method. I have read about instances where it goes horribly wrong. But overall it sounds like when it works, it works extremely well. The force method turns kids into Revolving Door Syndromes and encourages bad habits. More people die from anorexia than from Depressoin or from Schizophrenia, according to statistics. it really can kill.

  44. Julie,
    my wife’s d.i.d. gave me a pretty good understanding (in her case at least) of what is happening internally when it comes to eating disorder issues, and so once I understood the internal mechanics, it was a matter of rallying the various girls (parts of my wife for those without d.i.d.) to counterbalance the various factors which were contributing to this tendency.

    In fact, her d.i.d. taught me that so many of the lesser disorders in the dsm really are a matter of being internally unbalanced, and so, again for my wife at least, so much of what I helped her do was teach each girl (part) to counterbalance the other girls who had a tendency toward various ‘disorders.’
    Sam

    • Sam, I want to know, after all the effort you have made to understand your SO, is she “better”? That is,”better” according to how she, not you, might define it?

      When I got better, and this is just speaking for me, “better” meant I started making my own decisions and taking control of my life. It meant having confidence, plenty of energy, and ability to do things on my own without relying on the demeaning “services” of the Mental System. The only way I could get to this point was to leave the Mental System far behind. I am not married and very happy to be single.

      When I wasn’t “better,” I called the therapist every time things went wrong. I didn’t decide for myself. I blindly obeyed the the doctor and the therapist. The therapist blamed me every time things went wrong, or blamed some vague thing called my “symptoms.” I was frequently “sectioned.”

      • Julie,
        in many, many ways my wife is so much better. In many ways she is the most beautiful, vibrant and balanced woman that I know, literally. But d.i.d. is so systemic in a way that I could never have imagined, and so she’s not completely better. Physical intimacy is still at a standstill because of girl #8, and there are other minor things, too. But, yes, most of her other ‘lesser’ issues have been resolved as I’ve taught the girls to ‘work as a team’ which balances each one’s tendency toward things the dsm calls ‘disorders.’
        Sam

        • Oops, I didn’t answer your question, Julie, sorry. I think my wife would say she is better, BUT it’s hard for all of them when girl #8 is still consciously dissociated from the rest of them and so the 7 girls still have to ‘share’ time on the outside with the last girl. But my wife has ALWAYS had control of her life. Despite the skepticism with which I am met on this site, I have NEVER taken away my wife’s agency in any ways. And so as the little girls have healed and matured, they are like little birds and after a lifetime of being ‘caged’ inside, they are so ready to spread their wings and fly and I encourage them to do so. It’s really pretty awesome from my perspective to see my ‘wall flower’ wife transform into a woman who is so vibrant and self confident in many ways.
          Sam

Comments are closed.