My Letter to an Advocate for Involuntary Treatment

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Mental illness is my calling. I began life as an inconsolable wailing infant, became a suicidal toddler, and a taciturn, morbidly depressed teenager until I was catapulted into lunacy as a young adult. I crash-landed in psychiatry, and my diagnosis and orientation as a sick person became the crux of my identity for the next 20 years. I just knew I couldn’t survive the way I was, and the doctors were offering me an alternative.

Always haunting me, though, was that I couldn’t dismiss my traumatic childhood— which had maybe even begun in the womb of a heavy smoker— or my spiritual experiences as irrelevant or delusional.

Exhausted and ashamed, I often fantasized about living off of medications, but that’s what it felt like: a fantasy. Nothing seemed more unattainable. Both for me—as someone who historically ends up on the run from the CIA and KKK—and for our culture, where there is no alternative infrastructure. But the internet is a game-changer. A proliferation of intelligence is exchanged, people are finding and learning from each other, movements are forming, and what seemed inevitable and inescapable before suddenly looks comically antiquated.

But for now, there are a lot of things that I want to say but feel I can’t because there would be big consequences for me, so I say them into my phone. You have to be careful whom you tell what and which words and mannerisms you use. With time and experience, I’ve learned, especially at the doctor’s, to speak with utmost calm, using measured speech without interjections and minimal hand gestures, my face relaxed, the intensity of my gaze on low, and say (in a much more articulate way), Yes, I believe in a spirit world.

Sorry. I didn’t start out that way. And if my spirits are actually just coming from the corners of my unconscious mind, that’s also okay. Doesn’t matter, I can handle it now, so could you please just let me have them? Would it be all right if I subscribe to a different belief system? There are many people who do, could I try to be one of them? (And then later, into my phone: “Get your fucking filthy fingers out of my brain, you pompous assholes, you think YOU have a corner on reality?!”)

But I don’t just unload my anger. I also elaborate on my unbridled and optimistic, and possibly oversimplified and utopian convictions that we are turning a truly beautiful corner in history. The previously oppressed peoples, including the crazies, are rising up. Either the corrupt and outmoded institutions will collapse, or it’s game over— and the good guys have the edge. It sounds delusional. And I certainly can’t let on that I secretly think I have a (possibly important) role to play in that revolution. Grandiosity.

I’m just a nobody plugging away on art that nobody will ever see, writing essays nobody will ever read, thinking things that won’t matter, whose life path is leading nowhere special in a world that won’t change. It’s actually becoming insulting. It’s annoying and belittling coming from the doctors, but it really hurts when it comes from my family.

But what best illustrates my changing relationship to psychiatry and myself is a letter I wrote to Michael Gray. He’s an activist attorney who works for a nonprofit called the Treatment Advocacy Center (TAC). I started following their work when I was in a very different phase in my life. I was really into D.J. Jaffe, who played an important role at the TAC before his death last year. He was an influential advocate for involuntary treatment, in the form of hospitalization and meds, to be continued into outpatient care. The biggest reasoning behind this approach is the concept of anosognosia, or when a mentally ill person is so deep into their delusions they don’t understand they’re sick. The intervention that may seem invasive and abusive to them at the time, his argument goes, is actually merciful because it is saving them from a life on the streets, jail, or the grave.

Jaffe was committed to the plight of the most seriously mentally ill, and that’s how I was diagnosed and for a long time how I identified. And it’s true that, if it weren’t for personal privilege, I probably would have ended up in one of those places. I just no longer think that it’s because I’m defective or diseased. I believe Jaffe meant well; however, there is a major and distressing possibility that he was buying into a faulty model and with a bit too much self-assurance. After all, there are some serious liberties at stake here.

I still follow the TAC and I recently attended a Zoom course Gray led called “Advocacy 101: The Do’s and Don’ts of Lobbying.” As he spoke about a revolution in mental health care being less about civil rights and more about stricter laws and enforcement, I cursed at the screen the same way I do into my phone. Right afterward, I wrote this email, employing the same restraint I use elsewhere:

Subject: A question born from personal experience

Hi Michael,

I watched your Zoom presentation, “Advocacy 101,” and I want to thank you for being so available and interested in hearing what people who care about this issue have to say and for giving practical advice. It’s because of that that I decided to write to you.

I am diagnosed schizoaffective, have been hospitalized ten times in six states in the U.S. and once in Germany, so I am familiar with many levels of care and the variables created by law (I was committed under Kendra’s Law in New York and released prematurely in California). Most of the hospitalizations were for psychosis, one was for depression, and one was for a very nearly successful suicide attempt.

I’m on Clozapine (I’m sure you know it was D.J. Jaffe’s favorite for the most severely ill) and have taken it for nine years, after many assortments of other meds. Two years ago, I was caring for my sick mother and I wanted to be able to hear her when she woke up, something I would ordinarily sleep through because of the Clozapine. So I reduced it by quite a bit, a third. I was planning on going back up to my previous dose, but I realized I liked not being knocked out and couldn’t make myself go back up. I also liked being more alert and communicative. When my mother died and I went home to Germany, I told my psychiatrist about the reduction and he asked me if I wanted to continue to reduce. My response was, Of course not! Do you know how dangerous that is?! I thought about it and decided what the hell, if he’s okay with it, I’ll try.

Since then, I have been slowly reducing and I can’t tell you how much the medication was doing that I wasn’t even aware of. Side effects listed on the warning pamphlet, side effects that aren’t, but most importantly, side effects that aren’t just physical, but profound, intellectual, social, and spiritual.

I have now been stable for considerable time on a minuscule dose of this supposed “lifeline” medication, have found a psychiatrist trained in de-prescribing, and plan on proceeding slowly with reductions (I’m also working on a mood stabilizer and antidepressant) with the overarching idea of seeing for myself if the “biological illness/diabetes” model is right or if recovery off meds is possible. There is quite a bit of evidence that it is, but I’m sure you’ve already heard it from the anti-psych posse. I will proceed with utmost caution and if I need to go back up, I will face that and accept it.

I always thought that when people like Will Hall and Sean Blackwell talked about life off meds, that they just didn’t have it as bad as I did. That mental illness is over-diagnosed and medications are overprescribed, but some people really need them and I’m one of them. Now I question that.

So my question to you is, and I ask in all sincerity…how long would I have to be off meds and stay stable (or as stable as a normal person), safe, and out of the hospital before my story would mean something to you and the advocates for chemical interventions, especially the involuntary ones, to treat states of mind that may not be sick or symptomatic, but simply elsewhere? And would my singular story make you reconsider that model? Because if there are gentler, less invasive and severe, more loving and creative ways of handling minds than with drugs, shouldn’t that be the revolution in care?

Thanks again and all the best,

Emily Hochman

I sent the email on April 25.  As of now, that was more than a month ago, and I’m really hoping for a response. I can keep you posted. I hope he’s thinking about it because if he doesn’t respond, I’ll be pretty disappointed in him. In the meantime, I’ve continued my meds reductions and I’m still doing well. Nothing has ever been more important to me than staying that way and I really think I got this. If I’m wrong, I’ll eat my words, but I am convinced I’m on the road to recovery, not relapse.

And I’ve been wondering what taking on the establishment would look like. How many of us and with what kind of documentation of what kind of illnesses, and how long off meds and out of the hospitals, and with what additional evidence of health would we need to become a critical mass and show that recovery is possible? How do you take on a behemoth like psychiatry? A class-action lawsuit?  Whom do you sue? Or would it be a friendlier affair? Should we let bygones be bygones and just work on turning the mental health care system into a system that’s truly about mental health?

I personally want people held accountable. I’m angry. Angry that for so many years I thought I just needed 13 hours of sleep, that I was just a constipated person, that I thought 25 extra pounds was a small price to pay for sanity, that my hair was falling out because I was getting older. Angry that no doctor ever warned me about akathisia. I’m angry that so few people seem to understand that it’s not just a brain, it’s a MIND. That shutting down its technical functions also means detaching the subjects from their thoughts, their intellect, their PERSONALITY. That when patients “complain” of brain fog, decreased creativity, sexual disfunction, and flattened emotions, those are not minor imperfections to be included on a peripheral list of side effects, those are their reasons to live.

I’m angry that I thought for so long that my brain was my worst enemy. And I’m angry on behalf of so many others.

When I press them, even my psychiatrists have to acknowledge that the institution is fundamentally flawed. That ultimately and unavoidably, psychiatry boils down to a form of social control. Maybe we should stop seeing this as a pesky drawback to be brushed aside in the interest of more stable lives and start viewing inherent problems as actual problems that urgently need to be addressed. Buildings don’t stay solid on rotten foundations. They crumble and fall.

“Self-Portrait at St. Joseph’s Psychiatric Hospital, Berlin.” Painting by Emily Hochman

 

 

 

 

 

 

 

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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47 COMMENTS

  1. Hi Emily, there was so much here that resonated with me and with my experience, so thank you for sharing your experiences. My own evolution from proud mental health advocate to staunch antipsychiatry activist was many years in the making and I went through much of what you described along the way, finally landing somewhere on the other side of outrage in a nebulous sort of almost existence.

    I have mixed feelings about the notions surrounding healing. I am healing from developmental trauma as well as from the psychiatric system. I also have ongoing issues related to my late Lyme disease diagnosis. I have little contact with most of my family. Healing under duress is a nuanced kind of thing. I have found the most benefit from an attitude of acceptance. Just a little bit of “Well, fuck it. It is what it is.” Some days are blessed. Some days are HARD. Sometimes my body and mind are both ok and other days, I’m a mess of physical pain and tears and snot. I am deeply and unequivocally privileged in ways that have facilitated the space and time I needed to do this work without having to worry about how I would survive or who I was burdening in the process.

    But it has been a worthwhile journey going from someone considered to have zero chance of recovery, receiving disability payments and so heavily drugged I could hardly think straight to a stably married homeowner engaged with my own life. Oh yes, I bought my first home last December. I could never have imagined that back during my psych career. I will be five years medication free this year. It’s been 7.5 years since my last stay of a single night on a psych unit and last year was ten years since my last actual psych hospitalization.

    I don’t believe my story is an anomaly. I believe that the collective stories of healing and continued wellness of thousands of people on the various drug tapering forums speak for themselves.

    I also think that those who choose not to go through the withdrawal process need and deserve support regardless of whether they otherwise disagree with the psychiatric response to distress. I might not have ever tried this without my husband’s (then boyfriend’s) suggestion. I might not have tolerated the withdrawal process had my financial and social circumstances not been able to sustain the struggle. I recall many times during my tapering that the support of those who were rooting for me was all that kept me together.

    I have found a good retort to accusations of anosognosia is to simply admit to being in distress and struggling and then assert my unwillingness to go back on drugs that didn’t work. Of course, what you said about learning to fake the calm cool exterior is familiar to many of us. It makes me sad still that my range of expression has to be stifled for my own safety. Fuck it. It is what it is.

    The best revenge then is to thrive. To really live. To unapologetically own every bit of who you are. I hope the best for your continued recovery and journey into becoming who you will be.

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    • thank you for writing. I definitely think people who agree with their diagnosis and meds treatment also need support, especially since I was one for so many years. I am trying not to be too preachy with the people I know who feel that way. I also did learn a lot from my time on meds. How to keep one foot in consensus reality and one wherever else I may end up. I think there are plant and diet medicines and other interpersonal interventions that can help people with this and I am happy to be seeing so much research into this.
      And omg, I feel like Paris Hilton insofar as I never needed to worry about a roof over my head and I could devote my time to making art to get through everything. People who don’t have that are at such a disadvantage. I would have definitely ended up homeless if it weren’t for parental support.
      Congratulations on your new home and your recovery!

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  2. Dear Emily.

    Why would you have to eat your words? Would it make them right if you experienced an upheaval after reductions or stopping?
    No it would not make them right. But they are the only thing in existence right now as creepy as it is, but
    the existence of a method due to nothing else being available ABSOLUTELY does NOT make it good or right. In fact it’s power and damages rather point to it being very false.

    Perhaps some people need something to get them through a really rough week, but why would that lead to forced lifelong harmful drugging. Perhaps people think they need something in small amounts.
    GP’s can prescribe, they have more “science” under their belt anyway. Although I do not and never will see psych drugs as medications, nor as scientific.

    I think you would be wise to look for a community of people who will have your back and who you can help out too.
    I’m really glad you wrote, and I hope you look for other zines to post it in. Also very brave of you to write to Mr Gray. If he does not respond, perhaps feel good about it…perhaps it saves you having to read all the hard science that he knows.

    You looked after your mom, which is huge. Wonderful.

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    • thank you for your comment. yes, very true, maybe I wouldn’t have to eat them. I just think that if I end up slipping into a delusional world and hospitalized I would have to reconsider that maybe I have an illness. But even if I do there should be better ways of treating it. But I don’t think that’s going to happen anyway!
      I am searching for a community and also submitting my work elsewhere.

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  3. Dear Emily,

    Thank you for sharing. I often am too afraid of speaking my truth to mainstream mental health advocates such as the Director of NAMI in my home state of Oregon or I don’t make it a priority to speak to such individuals because I generally don’t like talking to walls. Consequently, I end up speaking to them in my head; sometimes I talk to them by myself outloud (as if they were present physically) It is a therapeutic way for me to discharge my anger. I am angry over things that I can’t control, such as the past, or the false assumptions made by mental health advocates who promote force and coersion.

    I wish that my daughter hadn’t been exposed to forced psychiatry and institutions. I wish she had been offered non-harmful, non-drug, non-force alternatives at a much earlier time before her personality sort of fractured. Not sure if the entire family would have been supportive but I would have been. I would much rather take responsibily for my unskilled parenting than have her subjected to mind numbing drugs day after day with the obvious negative impact on her personal development.

    I’m glad that the tone of your essay is not angry because I have spent a lot of time trying to heal from all my anger over the forced psychiatry of my daughter. She is three years on clozapine and I want her to safely titrate off the clozapine because she can barely think on it.

    Anyway, your letter is both kind of tone, yet really pragmatic. I appreciate your trying to extend an olive branch to people whose views are diametrically opposed to mine.

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    • i don’t like talking to walls either! You never really know who’s going to be one or have one blocking their ears or their brain and that’s really what it feels like.
      the fact that you are talking about taking responsibility for whatever mistakes you may have made is so huge and loving and it’s not something my mother would ever own up to. you will be able to help your daughter. if you know mad in america you may already know about the withdrawal project. I found them very helpful in figuring out titration. I also found personally that getting to sleep was the biggest problem with Clozapine withdrawal and valerian (drops) worked wonders for me. best of luck.

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  4. I think the “mental health” workers, generally, are unaware of the fact that artists need to create a portfolio, prior to marketing their work. And my “mental health” workers were TOTALLY ignorant of how long it takes to create artwork. (My medical records incorrectly state that ‘work that previously took weeks, could now be done in days.’ I have paintings that I have worked on for many months and years, not days and weeks. Oil paint takes a long time to dry between layers, dah.)

    Plus, those lazy and greedy hospital psychiatrists I dealt with, who didn’t bother to even speak with their clients, prior to “snowing” them. Well, I had a criminal one of them (her partner in crime was eventually convicted by the FBI). She never even bothered to ask me what I did. Instead, she must have illegally gone into my private finances, and concluded I was “unemployed,” since I would never have told her I was “unemployed.” Because I was a very active volunteer, mother, and artist working on my portfolio, who’d already paid for her half of her family home.

    But given the number of artists, who’ve been attacked by “mental health” system, that blog on this website. It certainly seems clear to me that the “mental health” industry does target the artists. And, like you, my artwork does visually describe my experience with the “mental health” industry, specifically their iatrogenic “bipolar epidemic.”

    https://www.alternet.org/2010/04/are_prozac_and_other_psychiatric_drugs_causing_the_astonishing_rise_of_mental_illness_in_america/

    But once my second, and primary, psychiatrist finally bothered to actually look at my work. He described it as “insightful” and “work of smart female.” And I was weaned me off his neurotoxins.

    When I had a show of my work years later, with the truth attached to it. My work was so “too truthful” for a psychologist (who knew something about art, and considered me to be a “Chicago Chagall”). He actually tried to steal all profits from my work, and everything from me, with a conservatorship contract, disingenuously handed over under the guise of an “art manager” contract. Incorrectly assuming ass, I’m NOT signing that contract!

    I completely understand your anger, Emily, I was angry too. But the anger does somewhat subside over time. Especially since we have the science on our side. In case you don’t know, both the positive and negative symptoms of “schizophrenia” can be created with the “schizophrenia treatments,” the antipsychotics (aka neuroleptics).

    The ‘psychosis’ and ‘hallucinations’ can be created via anticholinergic toxidrome. And all that unwanted extra sleep, and the other “negative symptoms of schizophrenia,” can be created via neuroleptic induced deficit syndrome.

    https://en.wikipedia.org/wiki/Toxidrome
    https://en.wikipedia.org/wiki/Neuroleptic-induced_deficit_syndrome

    In other words, the two “most serious” DSM disorders are iatrogenic illnesses, created with the psychiatric drugs. So I have no doubt you – and all – can heal from psychiatry’s iatrogenic, not “genetic,” SMIs. But I will forewarn you about a possible drug withdrawal induced ‘super sensitivity manic psychosis.’

    If you aren’t weaned from the depression drugs, neuroleptics, and “mood stabilizers” slowly enough, and even if you may have been. You can still become ‘manic,’ and in my case possibly mildly ‘psychotic.’ At least if you believe the God denying, Holy Spirit blaspheming “mental health” system. Who think a ‘born again’ experience equates to a ‘psychotic’ experience.

    I can’t say what your personal drug withdrawal experience will be like. But do explain to your closest family or friends, that being weaned from the psych drugs can create symptoms, that psychiatrists, psychologists, and other doctors will often misdiagnose as “a return of symptoms.”

    And do know this can happen many months, or even years, after being taken off the psych drugs. In my case, my first drug withdrawal induced “manic psychosis” happened 6 months after being weaned from the drugs. My second one happened 2 1/2 years after being weaned from the drugs.

    But I’ve been drug free for 12 years now, and not had any other issues. Not to mention I’ve gotten the head of family medicine at one of the most prestigious American hospitals to take the (non-medically trained) psychological misdiagnosis off my medical records. So you, too, I have no doubt can heal, my dear Emily.

    By the way, your art beautifully displays the horror and grayness of the psychiatric industry’s systemic crimes. But I’m curious, what do the dark images that are seemingly coming out of, or behind, your head represent?

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    • I know about the risk of psychosis in withdrawal. I’m making my reductions very very slowly. And I have informed everyone that if I do end up in an extreme state that I do not want meds.
      Artists certainly end up in the system in droves. I once had a psychiatrist find one of my paintings online. He printed it out and brought it to the hospital and asked me if I’d done it. I said yes and he was impressed but that’s as far as it went.
      The dark images came from the darkness. It was my independent art therapy and I was going through a lot when I made them.
      Thanks for the links and your support.

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    • oh my god, this is funny. my dad told me someone had asked about the things coming out of my head. I thought you were talking about my art in general and dark metaphorically. I KNOW!!! I meant to go back into the painting and make them clearer! I should have at least done it in photoshop before publishing it. DUDE those are feathers!!! Somebody else thought one was a knife when I posted the painting years ago and I thought hm I should probably make it clearer. Feathers. I was picking feathers up and putting them in my hair. I’ve always had an affinity for native americans since I was a child, but a white girl in germany with feathers in her hair looks crazy.

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      • Okay, yes I did think one looked like a knife, too. But I will say people’s reactions to my imperfect “crazy art” are quite extreme and concerning, too. Especially since when the medical truth about my work is described, in connection with my work, it largely points out that chaos in the brain, caused by the psych drugs, does equate to chaos on the canvas.

        So my work turns the systemic child abuse covering up psychologists of my childhood religion who forced or tried to trick me into working with them, and their systemic child abuse covering up pastors, into delusions of grandeur fill lunatics. Who think I will hand all profits from my work, my work, my story, and all my money, over to them, via a classic thievery and conservatorship contract. FY, I said to them. Although, of course, in a much more polite manner.

        But I will say, it’s a shame my childhood religion doesn’t fund any support of the Spirit led visual artists of their religion, and instead, an enormous church has glaringly empty walls. While it hypocritically claims to support “the arts.” WTF?

        But I, too, have a heart for the native Americans. And an interesting tale about a partially German girl, being one of the first females working in the appliance business, with a bunch of old curmudgeons, near Skokie, IL. Initially, they considered me and our female German boss, who brought me into the business, as their “Ware-Wolf.” But within six months, I was able to turn my co-workers into my very kind and generous Chicago Jewish dads.

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  5. I have rampant, rampaging, unending, unendurable, unlivable with, horrific, merciless, relentless paranoid schizophrenia every minute of every day and I have been this way for twenty years. What I suffer from is REAL and is a REAL ILLNESS. It was NOT iatrogenically caused. I had the SAME SYMPTOMS long before I took antipsychotics. It is NOT trauma caused. I have been over and over and over my boring ordinary little childhood with dozens of searchers of a trauma truffle and none has been found. Both my parents were loving and funny and kind and attentive. The DSM book is just a book. Psychiatrists are just human beings. Some human beings are shitty and some human beings are full of integrity, even if that integrity is flawed by false beliefs in what they are doing to be helpful. I have met plenty of sweet, caring and kind psychiatrists. And psychiatric nurses. Yes, there were one or two who should have been sacked. That does not mean everyone here’s experience is not ALSO TRUE and ALSO VALID. But I would say to them your truth AND my truth are NOT the ONLY truths. Everyones truth is vital and important in collectively creating a new paradigm of care FOR EVERYONE and not just those who hate all their psychiatrists. MIA has a big readership but if there is to be a hope of building a new form of caring with the severely unwell, whatever words and definitions are chosen around that, there has to be a reaching out to those who are more than happy with the old way of care being offered to them. Merely spitting tacks and hissing at what those happy people feel supports them is never going to endear a new vision of care. Fine if all any activist wants to do is commiserate with other haters of psychiatry. Commiseration can be very important on the path to one’s own healing. It is “a medicine” of sorts. But in order to then extend offering that commisration medicine to the billions who are quite happy with the treatment and care they get from psychiatry, one needs to proceed with gentle persuasion and not barely contained hostility to anyone and everyone who thinks differently. Hostility does not sell beauty. And I do hope the next paradigm of care will be beautiful for absolutely EVERYONE and not just the chosen few.

    I have been on clozapine because my schizophrenia is abysmal. Clozapine was not my answer. I am on no drugs now. I totally get this blogger is coming from in the sense of rebirth from weaning off toxic drugs. But coming off drugs may do nothing for stopping schizophrenia symptoms. You may feel much happier without hellish side effects, it may even be life saving for you if those side effects were appalling. But THAT rennaissance off pharmaceuticals is often NOT a cure of schizophrenia. It just means their symptoms may be better managed off drugs.
    And for many schizophrenics neither is looking for a precipitating trauma. Loads of ordinary people will inevitably say their existence is dotted with abject trauma, probably EVERY childhood can be described as traumatic given enough poetic license. BUT the WHOLE WORLD is TRAUMA. LIFE IS TRAUMA. But at some stage it is like saying LIFE HAS MORTALITY IN IT. And what about the sliding scale of trauma, by that I mean is someone with an owned home and a smartphone more traumatized than someone homeless? I have legitimately been homeless for five years, needing food handouts and a bed bug infested bed in a homeless shelter. FIVE YEARS and with raging SCHIZOPHRENIA at the same time! Am I angry? NO!!! I AM NOT ANGRY. I DO NOT HATE PEOPLE. I DO NOT HATE ALL PSYCHIATRISTS.

    Was I somewhere on the sliding scale of trauma when I was homeless for five years? Or how about a young man or young woman trafficked in a country where there is nowhere to shelter? Is his trauma worse? Is her trauma worse? Of course. My point is there is not just a glib word “trauma” that covers a bored privaledged college student and a little girl dying in Senegal of genital mutilation. When a bored college student with enough money to buy a Ferrari says they are traumatized and they look at the really traumatized Uigur peoples or dirt poor indiginous peoples or Yazidi peoples or Palestinian peoples or people with severe mental illness and they then try to suggest that their own bored college trauma is as bad as the gruelling insufferable trauma of real victims of trauma, it looks ludicrous and when that wont wash they then try to make out that the those other genuine victims are JUST suffering from THE SAME trauma. They victimize those authentic victims by trying to silence their specific words for what is wrong with them, like a cuckoo bird chucks eggs out of a nest to make room for its own trauma, until the college cuckoo can feather its nest with the garments of the bloodied children in Senegal. And if you then point out that those childen have it worse because their trauma IS CAUSED BY SOMETHING REAL, they then say that they are helping all the world’s traumatized by getting everyone to regard to everyone’s trauma as THE SAME BIG TRAUMA. Well I am sorry but a child being gang raped in a brothel in South East Asia has a trauma that is REAL. It is not frivilous. And while the bored privaleged college student may feel life is unendurable and traumatic, it is NOT the trauma of ACTUAL REAL CHILD RAPE.

    Someone who honestly has no experience of that trauma has no business deleting the words such a traumatized child has of describing what has happened to them.

    Just because a bored college student feels traumatized by not being understood by their human fallible idiotic psychiatrist does not grant them permission to downplay or talk about MY ILLNESS.

    THE ILL HAVE A RIGHT TO BE ILL.

    I

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    • Dear Emily,

      I wrote my long comment before glimpsing that you have done responses to other’s comments. What a lovely balanced person you are. I see that you do see a reason for enabling people of different views to access the care they feel is right for them. This did not come over in your blog and that is why I took it as an opportunity to show another perspective. You want to come off clozapine. I have been med free for years. First three months cancel everything and treat it like heroin withdrawal. Love your poor brain. Give it all the time it needs to recover. You had schizophrenia before you went on drugs and likewise you may have schizophrenia afterwards. Many allude to the way the psychotropics can “cause” a chemical imbalance that mimics schizophrenia, which kind of proves a chemical imbalance “can” affect the brain, but I dont have a wish to debate it all anymore. Let everyone believe whatever they want to about themselves. Just know that withrawal can be intolerable. But for me it also a joy ride. Often one hour bears no comparison to the next. It was worth persisting. After six months I felt reborn. Schizophrenia was then easier to deal with, even though it is a considerable opponent in my own life.

      Please do NOT think I was criticising your blog. I was not. It wasnt personal at all. I was just stepping out of reading some things you said in order to address general prevallent concerns I feel get overlooked here. Trying to be a nugget in one cup in the scales of balance. That’s all. I just want for lots of schizophrenic childen to not be shy of coming to this site if they too want to consider reducing or discontinuing meds that they feel are not healing them. I want those schizophrenic children who are scared witless by their ghastly hideous REAL hallucinations to not have to suffer the slap in the face insult that says their illness is FAKE. Because if that’s their welcome whilst they are going through hell from their REAL illness then they wont stay here. Insults close a door to healing.

      Anyway.

      Im off to play elsewhere.

      Your art is outstanding. I believe schizophrenia is a disease but it can be the making of an original genius. As such I always feel schizophrenics are on a whole other level, spiritually, philosphically, psychologically, creatively, practically.

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    • I feel compelled to ask a question here, not as moderator but just as a person. It seems you feel that someone is telling you that you don’t have a right to “be ill.” You have talked at great length and quite articulately about the importance of allowing multiple definitions or understandings of what is called schizophrenia in the DSM, and have acknowledged the sketchy and subjective nature of these DSM labels. I have also seen many posters, including me, support you in being able to view yourself as schizophrenic or ill or however it is that best describes what is happening to you. I honestly don’t recall one person saying you are wrong to view yourself that way, though it is possible I have missed it.

      So my question to you is – who do you feel is telling you that you don’t have a right to identify as ill or schizophrenic? And what are they saying that is giving you that message?

      It seems pretty clear that you feel compelled to say this same thing many times, which makes me think you are not feeling heard, yet looking from my perspective, I don’t really understand what it is that is not being heard? Can you help me understand this, in specific and simple terms? What is it that people are saying that upsets you and gives you the sense that your right to be ill is being taken away from you?

      I hope you will take this in the spirit in which it is asked. I really do want to understand.

      Steve

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    • “there has to be a reaching out to those who are more than happy with the old way of care being offered to them.”

      There is no good basis for this assertion. The current medical model of treating these conditions as actual illnesses treatable with drugs has increased the burden of disability (and very poor health) which the government pays for out of taxpayer funds. There is no way to predict who will be seriously and perhaps permanently harmed by the “treatments” but it is fundamentally wrong to play Russian roulette with people’s lives on the chance they *might* respond above and beyond the placebo effect.

      The health consequences of these drugs are far too great to just continue with the status quo as if it’s a matter of personal choice or informed consent. Nobody should be forced to withdraw, but new prescriptions should be banned just as other drugs that have proven more harmful than helpful have been. It’s a matter of public health, not individual agency.

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      • it took me a while to process this comment because it’s such a conundrum. In one of the facilities I was in, there were some long-term/permanent inpatients. I didn’t get to know them very well, but they seemed like they had accepted their diagnoses and considered the place their home and the staff their friends, but they were also clearly very unwell. Overweight, lethargic, they could not think or communicate clearly. This was a very prestigious institution and was supposed to be the highest standard of care.
        If there is truly informed consent and there ARE real alternatives, I cannot imagine anyone signing up for lifelong toxins. And people would be much likelier to seek help if they weren’t terrified of the consequences.

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        • It strikes me as some kind of fawn reaction to stress or stockholm syndrom.

          Anyway that’s none of my business. If they want to be locked up and drugged, than that’s their decision. I’d rather not be.

          Lawsuits and Strafanzeige won’t help. I tried. You could still do it. Psychiatry lacks any insight and self-healing power, but the Staatsanwaltschaft might be annoyed enough by 200000 Strafanzeigen per year to demand law changes.

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    • Hey Diaphanous Weeping, 
      from everything you’ve written I’m not really sure where you stand on your diagnosis or the validity of your experiences. You say you aren’t on meds yet you do identify as schizophrenic and you claim it as an illness. I’m not saying you don’t have a mental spectrum that can cause major distress and confusion, but also sounds like some real miraculous transcendence too, but I don’t necessarily think you have a mental illness, or, if that’s what we’re calling it, I don’t think it needs to be permanent.  
      Maybe you didn’t have a traumatic childhood. But it also sounds like you are haunted by the trauma of others. This is not insignificant. I will point out that all the other traumatized people you mentioned who don’t end up psychotic, the girl in Senegal, etc…they are not in Western countries with psychiatry empires. Extreme emotions and behaviors are handled differently in the families and communities in other cultures. But I am really no expert on that. I would like to learn more.
      There isn’t really an answer to why people process trauma differently and how it can turn into symptoms for one and not another. But even if people have happy childhoods, there is also just a lot of traumatic, toxic, twisted, violent content in our culture. And the KKK does exist, the mafia does exist, the Manson Family did exist, the CIA, Nazis etc etc, so to be scared and even obsessed with them is actually legitimate I think. People have different levels of sensitivity.   
      I feel like a diagnosis can help people because it takes the blame off. Like, it’s not my fault I am in or was in this state or my life is in the condition it’s in because I have an illness. But it’s not their fault because it’s not! Because life is fucking hard and confusing and sometimes you need help. There shouldn’t be shame in that. 
      So…I don’t know, am I schizoaffective? Am I in danger of thinking I’m being monitored (which we all are now) or that the CIA is after me (they may very well have a file on me) or that the KKK is (that one is an evil I was obsessed with although I am not personally at risk). Am I going to want to kill myself again? Maybe this is not the case for all suicides but I tried to kill myself because I hated myself. I like myself now and I think I’ll stay solid on that, I hope, because I put a fuckload of work into turning myself into someone I like.             
      I said somewhere here, I learned a lot from my meds. Maybe they have a place in treatment. There is a psychiatrist, Joanna Moncrieff, who advocates for very limited psychiatry. She said they can be helpful to bring someone back to the planet (maybe not her words) but that is very different from long-term, permanent dependence. Some of the psychiatrists I’ve crossed paths with seemed like truly nice people who I’m sure got into the career because they wanted to help people. But a lot of them have other motivations, and some are downright nazis. Anyway, thanks for looking at my art and I’m glad you like it! 

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  6. The problem I see with psychiatry is that it was at the right place and at the right time to take advantage of some cultural shifts that have allowed its practitioners to become materially quite opulent. The price they paid was spiritual death.

    I would have liked to hear more about the spiritual experiences. I see this subject as central not only to the problem of “mental health” but to many many other problems (or bad situations) around the planet (and indeed, around the universe).

    At this point, those who want drug-based medicine to rule supreme on Earth are very close to a total takeover. By some accounts, their smugness might be the only road left that could lead to their undoing. A LOT of forces want the general population to be totally afraid of dying and of all things spiritual. This is their path to total control. Our path to total freedom from control has been mapped, but only traveled by a few so far, as under current conditions that journey is expensive and time-consuming.

    I, for example, have probably missed my chance. About all I can do now is sit on the sidelines and cheer on the ones who are making this happen and keeping this road open and workable. There may be other roads to the goal of freedom from tyranny. I don’t yet know what they are. But there are many very intent on achieving this for themselves and their friends and families, so there is always the chance that they will make some surprising advance that will give us all renewed hope.

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    • It’s nice you express an interest in the spiritual experiences. If you want, you can take a look at my website. I’ve done a fair amount of art on it. But I think the nervous system and kundalini are 100% intertwined, and that when kundalini either goes akimbo or is suppressed you get various symptoms. My first mania was a kundalini awakening. It actually brought me to a voodoo temple in New Orleans (there is a portrait of the priestess on my site) and, well, it’s a very long story. I will write more about it. It’s involved a totally transforming relationship to my voices. I still have a hard time using the word spirit guides because of stigma and my atheist upbringing, but I do believe it.
      the slimy evil overlords will not win! They won’t! and it is because of smugness and arrogance and just stupidity. I see stuff every day that gives me real hope. i don’t think you missed your chance for anything.

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      • Great to hear a little more from you on this! Yes, the physical body and the light body are intimately connected. I have not studied kundalini, but my understanding of it is that it is basically an intermediate energetic system through which the being controls and corrects its body. All power to heal lies completely and solely with Spirit.

        I was raised atheist, too, but not aggressively so. I sort of “backed in” to an awareness of Spirit, and now consider this central to our path to freedom and reawakening. I don’t fret too much over the possibility that I might miss my chance, but some of my friends do.

        I will visit your site. But I am not as thoroughly hopeful about the future. It is true we now have a route to spiritual freedom in place, which is a first for this universe. But it would also be a first if this route actually won out on this planet. From what I know, this has never happened anywhere else. And right now the bad guys still have most of us convinced that Spirit is just a childish fantasy. But we know that’s not true, don’t we?

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  7. This is not to Emily or anyone specifically okay. Just while making myself a casserole at this riduculous hour and I want to add a parting shot.

    For over a decade I “knew” I did not have schizophrenia. What I had was Monet then Beethoven then numerous dead poets and then various extraterrestial telepathic aliens and then jesus and dozens of spirits in the realm celestial and a tyrant and a beautiful high angel and hundreds of wonderful talking animals ALL living with me and ALL telling me extraordinary things and some telling me I HAD TO write using THEIR WORDS and some telling me I had to have sex with strangers to save those strangers or save the planet or a dizzy mix of both even though I wept and cried and screamed that I did not want to. But I “knew” this was not “a disease”. I “knew” this was destiny, or my finest hour, or the only hope for the planet. I “knew” this was not “illness” even though I was ordered to run into the traffic to get run over. I “knew” what was going on for me was MUCH MUCH worse than a silly illness called schizophrenia. I “knew” I was being tortured night and day, year after year FOR REAL. And I “knew” nobody could help me, not even a stupid psychiatrist. So I felt utterly ALONE in my “knowing” that I did not have schizophrenia. And even though I “knew” it was not schizophrenia..

    woweee

    It DID NOT make all those people like Leonardo and Vivaldi and the poets and the tyrant go away.

    And now that I DO KNOW I definitely have schizophrenia….

    woweee

    All those people like Leonardo and Vivaldi and did I mention the Elephant Man and Shakespeare? none of em went away.

    Every spooky spook is STILL here.

    So whether “I do not know” I have schizophrenia or whether ” I know” I have schizophrenia makes NO FUCKING difference to my feeling ILL from it and it makes no difference to the intensity of my symptoms of schizophrenia. This is because like Mr V. Van Gogh, schizophrenia has NO EARS to hear what the hell I call it.

    So either it is a cruel tyranny by a crowd of discarnate nightmare beings….

    or

    it is just a dumb ass disease I dont HAVE TO communicate with anymore or drop my knickers for.

    I totally appreciate both sides of the acceptance coin. I totally appreciate that having doubts in one’s sanity comes as an unwelcome shock and burden. I totally undertstand that there are some schizophrenics who feel the diagnosis is like a final indignity engineered from perhaps a hallucination of the CIA who are conspiring to discredit their sanity. I also understand many people are misdiagnosed and suffer the indignation of a definition of they dont want. I understand how it feels to scream so loud the back of your throat hurts…with the words…everyone else uses here (even though most of them have NEVER had schizophrenia) those words being..

    “I am not schizophrenic!”

    I shouted, screamed, hollered those words for years and years and years…

    But I also KNOW how CRUELLY USELESS that is for MY ILLNESS.

    MY SCHIZOPHRENIA.

    Its like people who can walk quite fine ordering a person with permanently damaged legs to get up and run in the hope it will prove an ego saturated arguement “right”.

    My “knowing” there is no cure for my schizophrenia is not my just sitting down to it, it is a LIBERATION from the torture of endlessly fighting against something beyond my control. And in my liberation comes a peaceful acceptance that REALLY DOES help me endure it all. I am not saying I go about all day chanting to myself I am schizophrenic, my life is meant to be OTHER STUFF…..such as birds and clouds and art and singing and playing and having fun and knowing friends and discovering the mysteries of the universe….because whether my life is broken or whole….my life is short. I intend to find love in every moment of it…not despair…not rage…not bitterness….nor poor me….not self-pity…but lovely love love love.

    And a lovely casserole.

    Dinners ready…can I interest anyone in a bowlful? Smells good….

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    • @Daiphanous Weeping
      Sometimes your comments remind me of my experience in therapy. I feel that may not be your intention cause you have no idea but what you write often touches me.

      I had a very violent childhood trauma that went on until I left my family of origin at 19. I have enough scars to cause me infertility. But, the big but is that I lead a decent life where I have never been on meds, or hospitalized or went to jail (well let us not count shoplifting as a teenager and early young adulthood) but I have grown up and only saw my childhood – the worst experience of my life- and now that I am out of it – I need to catch up living to the fullest! so I live in momentum of life!

      Then I wanted to become a therapist…and felt I need to see if therapy works first. No matter how good my life is or I say I am happy, the invalidation is I am traumatic person and must have PTSD….PTSD is the best code in health cause there is no cure! but I have no symptoms to reduce but I have yes really violent experience that I never sought help with a professional but I have so many siblings, relatives, I love my friends, my husband…I am well taken care of. None of those are good if I did not process it. Even though I am not short of processing anything. There is nothing to process if the experience is in my language anytime I need to speak of it.

      Processing a trauma is cultural. Something one does cause there is no any other way of healing. Well I grew up a different culture where processing is part of life!

      But I am not on meds never been. I am not interested in reducing symptoms, do not have any. I have support. I have a great job. I am happy and sad as normal human. But in the system, I am reduced, shrank, to my traumatic childhood. If my parents abused me while loving me, the system is validating me unless I agree with them.

      I want to become a therapist that just believes what the person wants not what they want while they are with me…I do not want to be the centre of their language target. I want to be an observer and my impact is up for interpretation and disagreement not for compliance and identification.

      My shield was dissociation (severe enough but did not even know it so not scary enough but not in split personality level) BUT I still manage to own few properties in one of the most expensive cities in the world, married truly happily, helping others who may have less than me in material…and see the world. What more do I need that I would have if I did not have bad childhood and suffer dissociation that I only learned during therapy.
      I am not allowed to say yes my childhood was bad but I not traumatized by it in a way that I must identify with it. and I cannot truly say my bad childhood screw me over forever cause I would be lying.

      What I am trying to say is I really understand you have an illness or you do not – and that does not mean anything material in your life. but in order to speak with others, we must use language and to make easier for them to understand, we must identify with something but I do understand your refusal to do what others need in the conversation. But I also understand you or anyone needs to appease others in language. Your experience should be able to stand alone without me or anyone else getting satisfaction of relating. It is OK not to feel relatable sometimes or forever. It is hard to hold two conflicting and contrary thoughts at once.

      I asked often what more would I have if I had perfect childhood? Nothing would have changed. Sure maybe I would be faster in thinking, would be able to have a child cause I am not bruised but…then there are millions like me so I am not alone. Regardless, I just wanted to say I hear you and even my hearing does not mean it is important.

      I am speaking for me when I said, I love your extreme ability to hold so many contradicting thoughts and still express them in language. Not an easy feat.

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  8. This has to be my favorite article yet. At this point, I’m afraid even to pray lest that be construed as evidence of my being psychotic.

    I can’t tell you how many times in the year since my first and only involuntary hospitalization (at age 50, with no previous history of mental illness), that I have been successfully living my life, paying for and taking care of my own home and yard without anyone else’s assistance, working at a job where I am respected for my work ethic, and thus very well paid, without meds, and I think to myself that this is the person that the doctors in that hospital felt (despite there being an alternative physical explanation, a cavernoma in my cerebellum, and an alternative psychological explanation, 50 years of a verbally abusive relationship with a parent that had finally reached its crescendo), would be unable to function independently on her own, without being involuntarily committed, without being medicated, despite my having done so for the first 50.

    I did try and take on the establishment to some extent. I wrote first to the President of the hospital and when that didn’t help, and as more information about my case became available, his boss, the CEO of the hospital’s parent company. This last resulted in a letter of apology from the hospital’s new president, acknowledging that my treatment was ‘less than ideal’ and a check for $350.

    Like you mentioned, I very much wanted to sue, but I don’t have sufficient damages as the trauma of being hospitalized against my will doesn’t count, and I refused to take the medication. They did agree to review and amend my hospital record, so I sent them documentation that the coworker with whom they spoke had lied, a report from my neurologist stating that my symptoms were caused by a bleed due to the cavernoma, to no avail. I received a response that the doctors had validated their original diagnosis of bipolar disorder, although they would add the info as some sort of amendment.

    This is why the following sentence in your email struck a particular chord with me. As I thought the very same thing. Perhaps I’ll contact them again, I thought, as every decade passes without incident, and again ask them to amend the hospital record. How many decades would have to pass I wondered?

    “How long would I have to be off meds and stay stable (or as stable as a normal person), safe, and out of the hospital before my story would mean something to you and the advocates for chemical interventions, especially the involuntary ones, to treat states of mind that may not be sick or symptomatic, but simply elsewhere? And would my singular story make you reconsider that model? Because if there are gentler, less invasive and severe, more loving and creative ways of handling minds than with drugs, shouldn’t that be the revolution in care?”

    I wish I had put it that way myself.

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    • what a lovely comment, thank you. I mean….$350…hm. Like, it acknowledges accountability but then doesn’t actually compensate you. Symbolic money is supposed to be for positive things. This is a multi-billion dollar issue. How you can compensate all these people and for how much damage has been done is unfathomable. Just akathisia alone (the most torturous of all side effects)….I see more people talking about suicide and some who actually do it on my akathisia group than all my other mental health groups combined. Obviously the executives are aware of this. It’s unconscionable.
      And yes, praying is not allowed. Of course they would never say that, they would tell you that you can and maybe even should believe in God, but not that God is at work in the world in any kind of perceivable way. Definitely not miracles. Not angels. And dark nights of the soul are chemical imbalances.

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  11. Oh Emily, I missed your website link in your bio because it was so small. BUT I found it, thanks to you mentioning a website.
    Your work is fabulous.
    I so wish I could have known how to draw or paint, but I also know it can be frustrating if one tries to make a living off it.
    Art is just so wonderful, it is able to evoke/invoke so much thought or feeling in the people who view it.
    Often nostalgic for me.

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    • aw thanks sam, happy you enjoyed the art.
      i know it sounds cliche but anyone can draw and paint. actually people who aren’t trained at drawing can maybe have an advantage if they forget the fact that they can’t draw and enjoy it. Pottery is also incredibly therapeutic and fun, and you can draw on the clay. but i don’t do art for money which is good because I very rarely sell anything anyway.

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  13. What a knock-it-out-of-the-park essay! It’s so dam good I just had to say WOW and thank you Emily! I also believe your on the road to recovery, as well as share your anger-though mine directed at the psychotherapist sector. Unfortunately I suck at anger, but I am learning, albeit slowly, that anger can be a very good ally if I stay disciplined and mindfully vigilant, which is to say, remain compassionate to others and to myself. It sounds to me like you and anger make a great recovery team! Please keep us posted on Michael Gray’s reply, I expect it to be a hoot if he does. But I also hope you keep writing in the coming months and years as your recovery unfolds. The world is full of hero figures, just not full of real life hero story’s, and your recovery story might very well be shaping up to be just that kind of story.

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  14. I’ve been waiting for someone to point out that Jaffee (prior to his death) and the “Treatment Advocacy Center” have long been recognized as the ENEMIES of all survivors — no matter what their leanings may be otherwise.

    Anyone want to expound?

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  15. Hi Emily! I live with the same question.
    After 22 years of medication, I’m now free from it since July 2017… and very surprised no one care to study how I did it. I was diagnosed schizoaffective and bipolar when I was 20 years old. I live totally free of symptoms and totally free from meds, for 5 years now.
    I just finished an undergraduate microprogram in mental health called Mentoring for Peer Helpers last year at the Faculty of Medicine of the Université de Montréal. I did my internship in an integrated university centre in mental health and I now work in The Youth Mental Health and Technology Lab (YMHtech) associated with the research centre of the largest hospital centre in Québec, Canada. I tell everyone I work with about my story and no one wants to know how I manage to stop medication and live symptoms free.

    I truly believe we have, the survivors, to reinvent the story and the treatment.

    The medical establishment is captive to its own history of control. Medication, this chemical control, is the only answer they have had for decades. Before the medical system can open itself to a new era of care, it will have to rethink its entire relationship with mental health. These are individuals facing fear of their own mental health, these are systems relying on fear and control of the uncontrollable. Public responsibility is often used as an argument, but this is a debate that needs to be addressed. We lack real solidarity, we do not offer our time and attention to the important things, to the repair of trauma, for example. We do not take care of parents so that they can properly take care of their children’s development. There is too much awareness to be revealed, the feeling of guilt is paralyzing and each individual in the system does not dare to act alone. I would love to connect with you and discus this question further in depth.

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  16. Simply put, the abuse of children is supported as parental rights. The parents’ narrative is preferred and the child is “protected” by denying its rights as a living creature. The response to this issue is to transfer parental rights to the state.

    An abused child who is identified is then chattel of the state and the self-interest groups that use courts to enforce their desires.

    It happens: Harmed children are taken from their abusive families only to be abused by government’s child protection workers. It’s abuse for their protection?

    The issue of mom’s harmful behavior during pregnancy ironically enforces the states’ power to eliminate personal freedom. I don’t pretend to have the answers. However, making these issues known or using the court of public opinion may be a beginning.

    While it is truly understandable that you must speak carefully for your protection, your efforts here are laudable. Also, I have been impressed by the success of those grown children who grew up while medicated. Those in foster-care commonly are medicated for no clear reason. When they “age out of the system” medication is no longer free. That “sudden neglect”occasionally has offered possible escape and the opportunity to recover from government-imposed chemical harm. How the developing brain can do this is a mystery and aevidence of personal strength.

    However I can’t deny the government spying and attempts to retain control of the escapee.
    About 15 years ago. I read about an”underground railroad” for those escaping forced drugging. The complications include managing drug withdrawal while hiding in protection. How does this happen under the Fourth Amendment? Some self-serving rat can just take a life because he claims to know what it best? And a court agrees???

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  17. Hi Emily.

    Seven years ago I was involuntarily committed and diagnosed with paranoid schizophrenia for having delusions and hallucinations for eight days.

    Then nothing for years. Nothing at all, on or off meds. A while back my ‘hallucination’ came back and gave me the deepest psychological work I’ve ever experienced in my life.

    Its helped me forgive myself for things I felt was unforgivable I did in my youth, its practically completely healed my PTSD, its retrieved suppressed memories from childhood and drunken youthful nights I had suppressed for years. I know these memories are real because I already had partial recall years ago and in helping me to remember it has drawn a through line from traumatic memories to psychological and emotional memories that formed the roots of my PTSD.

    It leaves me scratching my head tbh. How can a ‘symptom’ of a ‘mental illness’ give me the greatest psychological tools to heal my very real trauma from lived experience from decades before I had been diagnosed?

    I thought the definition of an illness was something that negatively affects a persons quality of life whether it be athletes foot or cancer.

    Does anyone have any idea how my ‘illness’, the worst ‘mental illness’ apparently, is continuously positively affecting my life?

    And since it is then how can it be called an ‘illness’?

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