An Open Letter to Persons Self-Identifying as Mentally Ill

Andrew L. Yoder, MSW
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Hello,

My name is Andrew, and like you I have experienced severe cognitive and emotional distress in my life.  This distress was sufficient that I once received a psychiatric diagnosis of Major Depressive Disorder and Generalized Anxiety Disorder, though I imagine other diagnosis could have easily been applied as well.

I know what panic attacks feel like.  I know how it feels to experience a “dissociative episode” from the inside out.  I know what it feels like to believe that you are going crazy.  I know what it feels like to convulse in sobs so intensely that you tear muscles.  I know what it feels like to want to die.

I remember that in the midst of my terror and confusion there came a point where I desperately wanted a label – a diagnosis.  I wanted someone to tell me, in explicit terms, what was wrong with me and how to fix it.  I can recall scouring the internet through tears trying to find a diagnosis that described my symptoms.  I needed to believe that I was ill, just like if I had a disease or a virus, so that I would have hope of a “cure.”  It felt like the only thread of hope I had.

I have been on (admittedly mild) psychiatric medications, and those did help to some degree, especially in the short term.  I was also blessed to find a therapist who practiced compassionately and genuinely listened to my voice as I expressed my needs.  Many of you were never so lucky, and many others across the world are also less fortunate.

While I felt that I needed the label of mental illness to give me hope that I could be “treated,” my therapist was surprisingly less eager to give me what I wanted.  She managed to express genuine empathy for my distress and show her willingness to partner with me on a path to healing, but did so without ever willingly giving me a diagnosis.  It was only at my strong insistence that she finally conceded, and shared with me the diagnosis she gave for me, and which medical insurance demand be assigned to people.

My physician was not so cautious.  He was a very pleasant man that always seemed to take his time with me and did not talk down to me.  Yet as I described some of the emotional distress I was experiencing, and the ways it was affecting my life, he told me with great certainty that mine was a totally common experience.  He told me that I had a biological condition in my brain, one in which certain chemicals were “imbalanced.”  He told me that there should be no stigma about asking for assistance from him.  Specifically he told me, “Trying to not be depressed is like telling a diabetic to just make more insulin.”  He prescribed an antidepressant medication, saying that this was no different than taking medication to regulate blood pressure or manage cholesterol.  I was told of the likelihood that I would need to remain on some form of medication for an indefinite future.

Today I can share with you the good news that I have experienced what I call “deep healing,” but others might call ”recovery” from even these most extreme of cognitive and emotional states.  And yet, my pathway to this place of healing did not come through a diagnostic label as I thought it might.  Nor did it come through psychiatric medications (though I understand that medications might be a helpful and important part of your own healing, if that is what you choose.) Instead, the primary source of my recovery was the genuine empathy expressed by those partnering in my recovery.

My path was also not through the intervention of behavioral therapies , or solution-focused or problem fixing therapies (though I accept that any or all of this may be helpful to someone else.)  Rather, I was lucky enough to find a therapist who altered her plans for a cognitive-behavioral intervention after truly listening to me express my own sense of what I needed.  We engaged in the now largely out of favor psychotherapy, or “talk” therapy.  The path to my recovery was primarily talking to someone willing to genuinely listen and explore emotions and experiences.  Meaning-making of my experiences, and understanding the hows and whys of how I came to experience myself and the world in the way I did was what was most healing to me.

I’ve shared my background story, because I wish to persuade you not to hold the label of “mental illness” too tightly.  Again, I’ve lived the experience of feeling a desperate need for a psychiatric diagnosis.  I understand the feeling.  I only ask that you keep an open mind and consider what I have to say.

If you’ve spend any time at Mad in America, you’ve noticed a strong critique of a medical model of mental illness.  In fact you’ve probably noticed a strong critique of the term “mental illness” itself. You may have read persons arguing that mental illness is a mere social construct, or that mental illness is a myth.  I worry that this may feel frightening, or possibly even create a sense of powerful loss.  I could even see how hearing such things, depending on what you presently experience, might even feel like it threatens to take all your hope away.  I would like to try to ease those fears.

I feel confident in saying that there are few (if any) people arguing against the medical model or label of “mental illness” who deny the absolute reality of your real experience of distress.  I certainly do not.  I’ve lived the experience, and while not identical to your own, I feel it is fair to say we have some common ground.  I believe that anyone, given the right context and circumstances, can experience even the most extreme forms of cognitive and emotional distress.  What we sometimes call hallucinations or suicidal thoughts or deep sadness or panic and all the like – these are not experiences that you must accept as “just the way things are” without any hope of easing suffering.

However, I believe that treating the term “mental illness” as a literal truth does more to harm that hope of recovery than it does to help it.  You see, along with the popular claim that mental illness is a literal organic brain disease “just like diabetes” is a set of other dogmas unproven and unsupported by evidence.  These include, being regularly told that not only do you have a disease but that this disease also has no cure and that you will struggle with it for your entire life.  I have trouble imagining anything more hopeless than that.

It also includes being told that you must take psychiatric medications, and often many different psychiatric medications for the rest of your life, and you should never ever consider stopping them.  This despite what we know about the limited efficacy of these medications (anti-depressants are barely more effective than placebo in clinical trials; anti-psychotics have a short term effectiveness but increase susceptibility to psychosis, have major medical side effects and decrease brain size over the long term.)  Where is the hope in this?

Looking back now, I wish the physician who prescribed me anti-depressants would not have told me stories of “chemical imbalance” that are simply not based in science.  In truth, most psychiatric medications alter normal brain activity, and there’s no evidence of an identifiable chemical imbalance of any sort at the root of emotional suffering.  Research suggests that there are some risks associated with long-term use of antidepressants, including the possibility of decreasing benefits from the drug and something referred to as “treatment resistant depression.”

I believe that psychiatric medications did assist me in my process over the short term.  However I also believe that I was on them far longer than needed because of misinformation from my physician.  I believe my long term use of antidepressants has impacted my overall range of emotional expression.  I believe that my long term use of antidepressants has made discontinuing them entirely much more difficult.  I feel that I was robbed of my right to make a fully informed decision, and that has had consequences for my life that I still feel.

Thankfully, those consequences are minor compared to the tragic experiences of many who are denied their right to informed consent.  Overall, I am a happy, healthy human who has experienced significant emotional healing.  But I still cannot help but feel anger and resentment at the disinformation presented to me by doctors which took away my right to choose.

Professionals that subscribe to the belief that mental illness is a literal thing, also by and large subscribe to the belief that genuine recovery is impossible.  Instead, recovery is redefined to mean “effective symptom management” and persons labeled as mentally ill are encouraged to have “realistic expectations and goals” related to their lives that appreciate the limitations of their “illness.”  This is not hopeful at all.  It is false-hopelessness.

Those of us challenging the evidence-absent medical model and the objective “mental illness” label that goes with it are not trying to take away something hopeful and healing from you.  Instead, we wish to counter the false-hopelessness of a system that sees you as second-class people who will never be “normal.”

I am not here to minimize your real experiences of deep suffering.  I know they are real, and my heart aches for those of you who experience that pain.  But I am here to tell you that people can and do experience healing, restoration, or “recovery” from even the most extreme forms of distress!  You are not “ill” in any objective or literal sense.  The term “mental illness” is at best a metaphor.  You are not an “other” – one of the sick people, the “less than people.”  You are a fellow human being whose experiences have led to intense and distressing mental and emotional experiences.  Any one of us could experience the same.

Those of us challenging the mental disease model are the ones emphatically declaring that there is hope!  You can fully recover from even the most difficult distresses.  I know this because of my own journey of healing, and because persons who have experienced even more intense distress than I have also experience such recovery.  You can be free to make the decisions that feel right to you, including whether or to take or not take, continue or discontinue, any medication whatsoever.  You can experience the support of a community not married to a medical model that sincerely believes in you and honors your voice.

So as you continue to hear from people who challenge convention – namely the evidence-absent claim that “mental illness” is an objective thing, that there are literal mental diseases with clear biological causes, that people who have these “diseases” can never fully recover and must take powerful and dangerous medications for the rest of their lives whether they want to or not – remember that we also fully validate the reality of your lived experiences, both beautiful and painful.

We know that mental and emotional suffering is a real experience that many, many people face.  We also know that nothing good comes from convincing people that they have a biological disease when no evidence supports that.  Questioning the legitimacy of “mental illness” doesn’t make the reality of the pain any different.  But it does help people avoid the pitfalls of misinformation and powerlessness in their own recovery and wellness.

I am not saying that you are not hurting.  I am saying that you are not broken.  I am saying that there is always hope.

Love and best wishes to you,

Andrew

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39 COMMENTS

  1. Andrew, thank you for sharing your experiences here. This is a very good blog post, which clearly addresses much of the understandable distress, that so many feel when they hear someone say, that ‘mental illness’ is a myth (and/or, a metaphor). I’m glad that you shared it.

    And, about your experiences, of having been positively helped by ‘talk therapy’:

    It seems to me, from what you describe, you lucked into finding an usually good therapist; and, it is very fortunate that, prior to meeting her, you were never ‘treated’ in any way against your will, in the ‘mental health’ system.

    You are extremely fortunate for never having been forcibly drugged. (I cannot even begin to adequately express how I feel my life would be different, had I not been forcibly drugged when in crisis, in my early twenties. Had I been instead carefully listened to and otherwise treated with a modicum of respect — had I been asked for my opinion of what sort of care might be good for me, my life would have gone so much differently. There would have been so much less grief to endure, after all, in the long run, not only for myself… but also for my family.)

    And, indeed, even this fact, that you were never forcibly ‘held’ (for so-called “treatment and observation”) and never stuck with a label while being ‘held’ made it possible for you to receive good therapy, I think — and made it possible for your therapist to treat you as genuinely capable human being.

    From all that you’ve shared, of your experiences within the ‘mh’ system, I believe you should consider yourself a very lucky man…

    Respectfully,

    Jonah

    • I agree with Jonah, on all accounts. But I want to say that two of the most deplorable aspects of the “mental health” system are their awe inspiring lack of respect to patients and the complete hopelessness with which they try to brainwash patients and their families.

      I had never in my entire life met people who believe in an us vs. them mentality, prior to dealing with psychiatric practitioners. So their ungodly disrespect was simply incomprehensible to me, until I read all their medical records, and realized how deluded and insane they were. Can you imagine, my entire life has been declared a “credible fictional story,” right in my medical records. What kind of psychopathic loon behaves in such a manner?

      And I don’t believe a person, particularly doctors who’ve promised to “do no harm,” could be much more evil, than to try to take away all of another person’s hope, especially based upon scientifically “lacking in validity” DSM disorders and by forcing drugs that harm patients, rather than help them. The entire psychiatric belief system is opposite of the “we are created equal, with certain inalienable rights” US philosophy. My experience with the psychiatric profession is they are a bunch hypocritical, delusional lunatics. And, honestly, their behavior should be outlawed in the US, and the world.

    • I have absolutely no idea how to relate to people who are happy or even somewhat satisfied with their psychiatric care and have never been abused. All I feel is a seething jealousy.

      This is a very good article Andrew, thanks for writing it and explaining where you are coming from so eloquently. “the primary source of my recovery was the genuine empathy” Love this.

      • Unfortunately, I agree with you, Cataract. I think the only really “empathic” mental health professional I ever dealt with was a social worker who gave me a bible, and told me I should be a Christian, after I’d dealt with Kuchipudi’s partner in crime, Saiyed’s, second “snowing” attempt. I think the social worker was shocked I was still alive. But, apparently she hadn’t been informed that I was being force medicated FOR belief in God (according to my medical records).

        When psychiatrists behave in a completely insane manner, but claim to be respectable doctors, they can confuse the sane. But is that really “appropriate medical care?” I know in our current system it is considered such, but I don’t believe it should be.

        • Oh, there was one other kind practitioner I ran into the first time I dealt with Saiyed. Saiyed was really angry my insurance company had denied payment for a life time of inpatient care, so she proclaimed to me that the psychiatric industry has “tests that PROVE people have millions of voices in their head.”

          I said, “Wow … You’d think I’d know.” The nice practitioner held Saiyed back, because she wanted to hit me.

      • I can in principle imagine that – I have a good friend of many years (starting in kindergarden) who went on to be a psychologist. I’ve never used the services as a “client” but I did so as a friend. I simply know she’s an excellent, for a lack of a better term, therapist because she’s done this all her life. She’s got empathy, she’s understanding, non-judgemental and has a very sensible approach to life and interpersonal relationships. I’ll say more: I hardly believe that her formal education has done much if anything at all to help her in being a good healer. Some people have it in them, others develop this as a result of maturing and life experiences but it cannot be learned in a course of lectures. In fact many if not most people who go to study psychology have absolutely no business practicing since they have too many issues on their own.
        I remember getting a laughing fit when I read about the psychological method called “befriending” and wonders it supposedly does. No kidding – having a friendly person who is concerned with your problems and willing to listen to you is healing? Really? Hmmm, I wonder how that would work…

    • I loved the blog. Jonah, I’ve had both experiences–having been held, forcibly drugged, subjected to a wide range of paternalistic, disempowering, debilitating treatments. I’ve had many labels and was finally told that “bipolar disorder” fit because the medication for it “worked”. I apologize for all the quotation marks.

      Fortunately, I’ve also had a wonderful therapist since 1988. Although she doesn’t experience them, she does not make my paranormal experiences “crazy”. While she is trained in the traditional medical model, she has taken interest in my life path and often marveled at how well the pavement comes up to meet me.

      It is truly remarkable for someone who has been thrown in the slammer (how it feels to me) 6 times to pull out of the vortex. I’m in the process of that and appreciate those who accept all the different ways we find ourselves not-ill.

  2. Hi Andrew. What a nice young survivor/writer you seem to be. As such, you would certainly, I believe, be willing to entertain a respectful, but direct, question about the content of your essay. If the message is that hope is present and recovery is possible, then that is what the majority of the voices will be saying. Still, there are some other voices in the middle distance, saying that those who have not felt the eternal sunshine of the spotless mind need to have a voice as well. If they do not bring the message of the hope and the tangibility of the recovery, are they still heard? Are they lone voices? Lone dissident voices? How long until they are drowned by the simple minded majority? Are they fragile and important? I’m interested in what you would think on these topics.

    Sharon Cretsinger, XLISW, Space Cowboy
    Kent Empowerment Center
    Kent, Ohio
    [email protected]

    (330) 608-2203 (Please email, my voice mail is filled and I have no immediate plans for clearing it out)

    • I think Recovery (ie living a life where one is distressed to a minor degree from time to time, and a major amount of distress very rarely) is always possible.

      The question is how likely is it?

      What would be needed for that to happen?

      How likely is it that the things needed will happen?

  3. I also know what panic attacks feel like. I also know how it feels to experience a “dissociative episode” from the inside out. I also know what it feels like to believe that you are going crazy.

    I know what it feels like to goto the hospital for help and be treated like a subhuman in this condition being told to get naked for a strip search, squat and cough, finally settle down and then be told if I don’t take a ton of brain disabling drugs including Haldol I would be forcibly injected and sent to the state hospital and then feel panic attacks, a “dissociative episode” from the inside out all over again inside that place.

    I also know what it feels like to have the results of their abuse labeled mental illness.

    I also know what an intense hatred for psychiatry as a whole fells like, they are the scum of the earth who just can’t do anything honest ever, it’s just lies lies and anything no matter how dirty to make a few more billions for the industry. Hiding side effects to sell drugs for children ? Hell ya, nothing is too low for them absolutely nothing.

    F psychiatry forever.

    • I totally feel you pain copycat – I’ve been through the same and then I’ve read in my documents that it was all honky dory because I was “a danger to self and OTHERS”. And it was not the only lie in the documents (not mentioning convenient omissions of such clinically insignificant details as drug names and doses). But according to the patients advocates it was all ok – they didn’t say that they abused me in the documents so it’s fine.

      • Btw, I’ve recently realised that the two drugs they’ve given me have a known drug interaction which probably caused or exacerbated my benzo-induced amnesia. they are a bunch of dangerous idiots and that’s a generous description.

  4. Andrew, Thank you so much for sharing your story and also to reaffirm that not everyone has totally negative experiences with the mental health system, although anyone who has been treated against their will have.
    I have worked in mental health for well over 20 years as an occupational therapist and have also had my own craziness to deal with being labelled Bipolar. 3 years ago a change in circumstances finally landed me working in peer support, an area I’d wanted to work in but wasn’t financially viable when I was the main provider for my family. The last 3 years has taught me so much I didn’t know. I had believed being an occupational therapist I had a holistic outlook to mental health but sites like this have opened my eyes to what I was never taught working within the medical model. I want to thank everyone at MIA and Monica from Beyond Meds. I have now been medication free for 3 months following a slow and fortunately unproblematic tapering and so far so good. But I can see how medication has helped me but I also know that I had “inside knowledge” so therefore never relied on the benzos and antipsychotics the Drs would prescribe truckloads of. (i have taken these drugs but always kept there use to an absolute minimum) I too have been “lucky” with most of my care. It saddens me that people have been so traumatised and damaged by mental health systems that they are unable to see that there can be some good done (but not really in the current systems) and that actually most mental health professions are actually kind, caring, and compassionate that often get tired out by banging their heads on the brick walls that exsist in the system. We have a job to educate those professionals who do care and are open minded so they can see where they are going wrong and give them better ways to work.
    I personally would like to medical Doctors taken out of being the heads of psychiatry. They should have the smallest of roles as in my opinion Doctors don’t really know how to help without using their prescription pads.
    Carry on the great work everyone, more and more people are seeing the messages that MIA is a leader in.
    I am really really thankful that sites like this exist.

    • “that actually most mental health professions are actually kind, caring, and compassionate that often get tired out by banging their heads on the brick walls that exsist in the system.”
      Two (young) psychologists out of some 20+ “professionals” is not a majority. But maybe I just have bad luck…

  5. Excellent and necessary article. Certainly I would not want newbies on this site to think that when the absurdity of the term “mental illness” is being discussed we are invalidating the reality of their experience. I would encourage newcomers to stay tuned to this discussion, because you won’t find the issue of the “medical model” being discussed anywhere with the clarity and detail you’ll find in these coversations at MIA. And when you understand what’s at stake you’ll be able to say that you heard it here first.

    One token quibble — Although our target is primarily psychiatry, not talk “therapy,” etc it must be confusing for some to hear us talking about no illness existing, but then talking bout “therapy” and “recovery” — i.e. the terminology of disease/disability. To completely get beyond the medical model we will eventually (if not sooner) need to root out this inconsistency as well, maybe find some new terms for practices which can at least on occasion be helpful to some.

  6. Andrew,

    Thanks for a beautiful letter! You did a tremendously job of compassionately understanding the need/desire for a name/solution that is so often exploited by the current system in the name of healing, while providing the contrasting path to healing without a label. Your counselor sounds like a truly capable and compassionate person who knew what s/he was doing. I only wish there were more such people in the profession who could really focus on the kind of “deep healing” you have found.

    I am glad to know you are now dedicated to passing on what you’ve received in terms of healing. Thanks for such a gentle and wise perspective – it provides such an excellent contrast to the polemics that often are heard in this and other politicized debates, and refocuses the energy where it belongs – on the needs of the person who is suffering.

    —- Steve

  7. it provides such an excellent contrast to the polemics that often are heard in this and other politicized debates, and refocuses the energy where it belongs – on the needs of the person who is suffering

    There should be no contradiction between the two foci, they are the yin/yang of our movement.

    [I guess I should say for the record that there is as far as I can see no actual "movement" in the U.S. if by movement we mean an organized network of people sharing common goals. (I don't mean none of this is going on, but it seems to be limited to very small groups of people doing very good work.) When I speak of the movement I am mainly invoking the spirit of the "survivor"-led movement which pretty much broke up around the inception of the so-called "Alternatives" conference (when suddenly victims of psychiatry were expected to adopt the "'new improved" label, "consumers of mental health services."]

  8. Steve — Your comment is a little incongruous to me, for where I understand you to be coming from. The phrasing of Andrew’s credo as posted here is all well and good, true. But one could be skeptical after the “point of order” comeback to Sharon C., couldn’t one?

    Andrew said at least some things that followed up on would amount to the positive remedy that we need in letting caregivers here specifically what can’t work and what instead can in how people get treated in these ridiculous downplayed situations of forced treatment. But people have to work out the negative impact, as Jonah insists, as Sharon promises to understand, as Oldhead sees.

    Andrew–I think that you have an anti-intellectual side to you that you get your back up to defend. Most lately, Laura Delano, the Harvard girl, remember? We need expressions of visions like that. Before that, was Dr. Maisel, too slick for you or something. I am thinking about securing his services. It can’t be a one size fits all, say all the nicest things kind of reform movement. The problem is endemic, systemic, and huge.

    • It was not my intent to be in any way condescending – I am genuinely impressed with Andrew’s ability to balance his obvious passion with an understanding of the potential limitations of his audience. It is a very difficult balance to strike and requires considerable skill to accomplish. I can easily see a person who has been browbeaten by the system but is still suffering some “Stockholm Syndrome” effects being open to hearing this letter when they might balk at a more intense approach.

      I was also fortunate to have found a competent therapist, back in the days when therapy was the first-line intervention, and I’ve been a therapist myself, but unfortunately, my more recent experience is that most therapist either shy away from any deep healing because it is frightening to them to go there, or they try but lack the skills to do so effectively, and leave people in a bad place.

      I also very much agree with Andrew about polemics having their place, especially from the mouths of those victimized by the system, as I’ve written about elsewhere. The Yin/Yang viewpoint makes a lot of sense to me. But this “yin” message is also vital for those who are having a hard time dealing with the possibility that their educated, trusted professional advisers may not be giving them the straight story. It can be a painful jolt to come to that conclusion, and I find Andrew’s style a perfect blend of the hard truth with a truly compassionate understanding of how best to couch that truth so that it can be heard and considered by the recipient.

      Hope that clarifies things.

      —- Steve

  9. Andrew – I am coming back to put a more congenial point on my skeptical comments, so please note that I realize that it would be easy to misunderstand my previous spontaneous remarks made in this highly impersonal format. My reading moments ago was the second to last–not the current post–from Dr. Hickey. He comes across very glad to have seen many of the thoughts that you articulated in your concept-oriented post here (and I mean that to allude to “concept” in what used to be called “concept albums”).

    I think that psychologists more than most people are going to praise performances in the use of language according to the explicit content of the material so produced. He and Steve, too, are right about the general character of your expressions and stated position. But, yes, people have had it so bad, and so much worse than just bad during enounters with this reigning paradigm of care, that they are differently informed about the issue and will regiment their ideas differently than someone who thinks their crisis was understandable, treated fairly, and has passed. I did not mean to suggest that you have nothing unique or valuable to interject in order to change the way the conversations and writing goes here, just that you have the same obligation that Sharon C. alludes to, to validate the other, sometimes less perfectly simple attitudes toward recovery or messy impulses toward truth and reconciliation that survivors are working out for themselves with no popular support.

  10. Beautiful blog, Andrew. I am so happy to hear that you had a good therapy experience with a skilled therapist. The therapeutic alliance, the relationship that is the sacred ground to which the healing work of recovery can take place between therapist and his/her client is pivotal. Trust and mutual respect and caring for the client and the therapeutic process in what Winnicott called a “holding environment” is what psychotherapy is. Therapists need continual training on boundaries, transference and countertransference and to have regular consultation and supervision. Whether seasoned or not therapists need to do their own work in order to serve their clients the best. Being a therapist is very tough work and requires a skill set that continually needs honing. We often become too complacent, set in ways of the past, so continual training is needed and self-care. Best to you, Andrew and rest of those out there in MIA.