Thursday, April 22, 2021

Comments by KateL

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  • These recommendations put all responsibility for coming off and staying off psych drugs on the patient. If the patient has trouble finding a doctor who is willing to listen to the patient, provide informed consent, and/or support the patient in the often extremely arduous, painful, and sometimes life threatening process of coming off prescribed drugs, then the patient needs to keep looking for a doctor who will do these things which is like finding a needle in a haystack, or the patient needs to find a book or a website for support. Not everyone has a support system in place for something like this. Often people wind up in psychiatric treatment simply because they have no support in their life, because they have been traumatized and are afraid of people. Not everyone has the capacity to carry out these suggestions. When a person is bedridden, as I was during cymbalta withdrawal, it’s very hard to shop for healthy food and prepare healthy meals.
    I can attest that during the 1990s and early 2000s, when many new psych drugs came out and were being touted as miracle cures, there was absolutely no information or indication of how dangerous these drugs could be and there was no suggestion that stopping the drugs could be dangerous. I was prescribed one drug after another for 6 years by a psychiatrist who didn’t keep any records of what he was prescribing to me. It’s all a blur of Prozac Paxil Klonopin Wellbutrin Effexor Zoloft Adderall. And then I was labeled with treatment resistant depression and sent for ECT treatments. Then I was labeled with borderline.
    The best thing a person can do is avoid psychiatry all together and these suggestions prove it. If you never go on the drugs in the first place you don’t have to worry about how you will get off the drugs. Things like eating healthy foods, exercising, spending time outdoors and with animals… these can all be done without the help of psychiatry.

  • Yes, sometimes when I think about the all the ways Psychiatry harms and gets away with it, all the invisible unprovable damage they cause to people they purport to help, it seems like some kind of sick genius to me, committing The perfect crime over and over again and profiting from it over and over again. But I’ve met enough of these people to know that there’s no genius going on here, they’ve just stumbled into something, and they probably realize at the same time how lucrative and how horrible it is and keep doing it because the former is a bigger priority.

  • One psychiatrist I saw for six years, once a week for 50 minutes and who I paid out of pocket (I was a secretary and a single mother), was Yale educated, still Yale affiliated, lived in a rich suburb of New Haven, was the Commodore of the New Haven Yacht Club, prescribed a ridiculous amount of drugs over that six year period, beginning with Prozac and ending with Adderall, everything from Klonopin to Wellbutrin to Paxil in between, kept no records of the treatment, not even of the drugs he had prescribed, then passed me on for “a consultation” with a psychiatrist who recommended ECT (I was already well on my way to hell, this was just the beginning).
    When I found out the psychiatrist had kept no records for 6 years, I spoke up. I contacted the American Psychiatric Association and tried to file a complaint. They claim to you done nothing wrong. The psychiatrist to suggested the ECT claimed that the first psychiatrist and not keeping any records “was trying to protect you”. No one was trying to protect me. No one made any effort to protect me. But plenty of people protected him Mr Commodore of the yacht club who was too busy commodoring the yachts to bother writing down what drugs he was prescribing. And speaking up earned me a new diagnosis:. Borderline personality disorder.
    It’s all political.

  • Exactly, Willoweed, You said it better than I could have.
    Back when I was in the throes of DBT treatment for borderline personality, which got diagnosed after a series of ECT treatments did nothing to help my “treatment resistant depression” and caused memory loss problems to the extent that I could no longer work, I had a neighbor who also had a diagnosis but had managed to keep a full-time job and had a pretty extensive social network and support system. For a long time I thought that she was my friend until I realized that she wasn’t. Over the years she saw me being excluded in all kinds of ways, denied opportunities and left out of social engagements. I spent every holiday alone. After another stint in the psych ward I was always sent home in a cab because there was never anyone to call for a ride. She said to me one day, “I try to pass for normal.”. I believe the subtext was that if I tried harder to “pass for normal” then I would be more welcome in society. It was something I had to earn by being less obviously in pain. I’ve now stopped trying. I’ve been considered an outcast for so long, and even if it was possible for me to “rate” a place in society again, society isn’t worth it.

  • Thank you, rebel, for your earlier response, and this one. Thank you for helping me see a different perspective on moving away. I hope I can come to see it at some point in a more positive light.
    It makes complete sense that you fear any kind of medication. I fear them too. I fear the people working in the medical system just as much. What your neighbor said about the local hospital is so telling. Sometimes I wonder if the problem is that the general public doesn’t know what goes on in psych hospitals or that they don’t care. Now I’m leaning towards the latter. I’ve heard comments like this before from people about different psych hospitals. You’re right it is a kind of prison. The fact that any of it is ever packaged as some kind of help or treatment for an illness makes the situation that much more maddening.
    Thank you again for your perspective and encouragement. I meant to say more but am having trouble putting words together at the moment.

  • The term “refugee” has come to my mind at times when I consider my situation. I understand that using that term may be self-indulgent, victim-y, and disrespectful toward actual refugees. I think of it in terms of the fact that I had to pick up and move twice as a direct result of my being a mental health patient. The first time I had to leave was because there had been too many ambulances, with police of course, and often the fire department at my door to take me to the psych ward. This happened over and over again after the ECT treatments and borderline diagnosis and while I was being drugged with what I now understand to be brain disabling drugs. There was one incident when the police had my apartment number wrong and were preparing to break down my neighbor’s door. My neighbor did not take kindly to that. They often showed up with flashing lights and sirens on and it got to the point after I had been taken away between 10 and 20 times in the space of a few years that my neighbors made it clear to me that I was not wanted there.

    The second time I had to move was because of a string of incidents with the local police and the local hospital. The message from the police on multiple occasions was that they viewed me as a criminal and someone who should not expect to be treated with the same rights as a “regular citizen”. At one point I was interrogated in my apartment by two police, at length, when I had done nothing wrong, and in fact someone else – a neighbor – had made a false 911 call alleging that someone in the building was being held at knifepoint. I hadn’t seen or spoken to anyone all day, I’d been in my apartment and I’d been quiet and yet that did not protect me from having the police in my home, searching it, making all kinds of accusations, and demanding to know “why I looked so upset”.
    That was one of multiple incidents with law enforcement. The other main reason I felt unsafe in that apartment was that I knew if I had any kind of a medical emergency I would be taken to a local hospital where I had already been abused on multiple occasions, sometimes when I was there for so-called mental health reasons and other times for physical issues like broken bones. I lived in fear of winding up in that hospital again. I also lived with the constant worry that one of my neighbors would call 911 and say that I was acting strange. Based on their past behavior this was not an unreasonable fear.
    I moved to another state and I’m trying to keep my “record clean”, which means not seeing a doctor even if I feel very ill. I would have moved even farther away if I had had the means.
    I wasn’t forced to leave either of those places.
    I chose to leave because I felt unsafe. Refugee is probably not the right word. Maybe exile or outcast is more apt.

  • I wish I’d had the knowledge that I have now about psychiatry 15 years ago, when I consented to ECT as a fix for my “treatment resistant depression”. After the last in a course of 10 or 12 ECT treatments, when I was suffering from severe short term memory deficits that were a direct result of ECT (prior to my consenting to the treatment, the psychiatrist assured me that memory loss was a very rare side effect of ECT, that none of his ECT patients had ever suffered memory loss), I had a short appointment with the doctor in his office, where he laid the following on me:. “You have borderline personality disorder. That’s why the ECT didn’t work. You need dialectical behavior therapy.”
    He didn’t offer any explanation beyond that and his tone and demeanor made clear that he was not open to questions from me. I went home and looked everything up online because I had never heard of borderline personality disorder or dialectical behavior therapy before. That day was the beginning of 15 years of hell.

  • This account tracks closely with my own experience. I spent years after ECT as a full time mental patient, and one of the most painful and dangerous things about the experience was that my family and friends – what the treatment providers call “natural supports” – either ignored me and my increasing disability, many outright abandoning me – or they believed what the doctors said about me, that I had a severe mental illness called borderline and needed to be drugged and hospitalized. Every “episode” I had was attributed to my “severe mental illness” and failure to “use your coping skills.”. More drugs were piled on, I was threatened with more ECT. I lost everything. No one talked about withdrawal syndromes or medication spellbinding or akathisia. I was repeatedly reminded to take my meds, or told to call my psychiatrist to ask about a “meds adjustment”, or sent to the ER, often escorted there by police.
    Today, at 54, I am extremely isolated and have given up hope that will ever change. I don’t see any kind of doctor for any reason. I am very lonely and sad and carry tons of shame. I’m afraid of people. My entire focus is on surviving and staying out of the hospital.

  • Your story is so disturbingly familiar. I had multiple psychiatrists over a 15 year stretch when I was being treated for borderline personality disorder. Some of the psychiatrists were just arrogant, demeaning and callous from the outset, but there were others who seemed pleasant, caring…a couple who even seemed to actually care about me as a person and who, I still believe, really wanted to see me doing well. The common denominator between all of them was that not one ever attributed my often extreme agitation, accompanied by suicide urges, to the drugs they were prescribing. Those episodes, which often landed me in the psych ward, were always put down to my “severe mental illness” and repeated “failure to utilize coping skills”. None of these doctors ever told me – or probably any of their patients – that the drugs they were prescribing could cause a not-rare condition called akathisia.
    In retrospect, I think the psychiatrists who seemed caring at the outset caused more pain than the ones who didn’t — I was devastated when they each, in turn, gave up on me. Now I feel a huge sense of betrayal and a lot of rage.

  • Thank you for raising awareness about this awful condition. Your work has the potential to reduce suffering and save lives.
    I spent decades in treatment for what was termed mental illness — first it was treatment resistant depression, after I didn’t get better despite a psychiatrist prescribing a large amount and variety of SSRIs and then Adderall. He sent me to another psychiatrist after six years of this drugging which he kept no records of. That psychiatrist said I was a good candidate for ECT, so I submitted to a course of ECT. When I became much more symptomatic after the ECT, that psychiatrist rediagnosed me with borderline personality. Once I had that diagnosis, the polypharmacy went into overdrive. It was no longer just an antidepressant. There was always an antidepressant and a mood stabilizer and or antipsychotic. The particular drugs and the doses of these drugs were constantly being changed as I got passed around between prescribers and as they grew frustrated with me, they would often up the dose of my antipsychotic. I remember now that I used to sit in the group sessions of an IOP DBT program I attended five times. There was one stretch when I felt so agitated every day during group that I would take a pen or marker and draw flowers in a notebook during the entire group session. I needed to do something with my hands because I felt so agitated and I was trying to stay in the room and be a good patient. One day another patient came up to me and mentioned my drawings. She said to me,. “Your flowers? That’s true crazy.”. She was right. Every flower looked like it was shaking, like it was having a seizure, like it was about to explode off its stem. I probably still have some of these drawings around. I don’t think I threw all of them out. But back then I had never heard the term akathisia. It was only a couple of years ago, on this website, where I learned what it is and realized that that’s what I was suffering from all those years.
    When Jill talked about people losing their family and friends over this condition, because from the outside it can appear that the person is just being willful (as they say in DBT), I felt that deeply. I lost so much. To this day I’m afraid to go to the doctor for any reason.

  • In my case, having been through what I’ve been through with the mental health system, having been denied medical care after being drugged and brain shocked (I was even coerced into “non invasive” tms treatments which it turns out is just as bad as ECT. The news just keeps getting worse, but I guess it explains why I can barely dress myself), I’m not afraid of Covid. They always leave borderlines out of this anyway, since no one really knows what it is beyond a way to scapegoat and gaslight a person.

  • Unfortunately, the ignorance/denial of the horrors of psych drug withdrawal is just one symptom of much larger problem: the predisposition of the large majority of treatment providers to discredit/deny the experience of the patient, as reported by the patient. The diagnoses – especially borderline, which I received after “failing to respond” to electroshock treatments, after trying advocate for myself upon learning that a psychiatrist who’d been drugging me for 6 years kept no records – are another symptom of the same problem:. the predisposition to discredit the patient. The denial of the impact of childhood trauma – yet another symptom. That psychiatry continues to deny the debilitating effect of both being on psych drugs and of withdrawing from these drugs – is really just par for the course.

  • Lisa, I am so sorry for how you were treated, and I’m grateful that you are here and that you had the strength to write this. Your last few paragraphs give me hope. Someday, I hope to have the courage and the strength to tell my story — there are many, many parallels — including that I was punished in various ways on multiple occasions for committing the “offense” of trying to advocate for myself. I want to re-read your post and will probably have more to comment, but for right now I just wanted to say thank you.

  • I wish I’d found this website, or something – some kind of literature – in time. I was lied to, and drugged, with what I now realize was so a huge amount and variety of psychiatric drugs that I’m astonished I can still form a sentence (but in many ways I realize I am horribly impaired), for 40+ years. Plus ECT. Antidepressants, antipsychotics, mood stabilizers, benzos, amphetamines… just a never ending trail of drugs. I didn’t know about akathisia. I’d never heard of it. The cycle went on for so long adding drugs, my functioning would get worse, I’d land in the psych ward, I’d be called non compliant, and other names, more drugs, more drugs. I’m 54 now, have been on SSDI for 10 years, and am literally completely alone in the world. I’ve lost everything including my health. I wouldn’t wish this on my worst enemy. The immense cruelty of psychiatry is astounding.

  • Rebel, you said it very well. How many are in just this situation? “Regular” doctors don’t believe psych patients, much less former psych patients, and we have to live in fear of saying too much or saying the wrong thing for fear the doctors will send us back to the ones who caused all the damage in the first place. I’ve been in this exact situation for years. No one who hasn’t been through it understands that it can actually be dangerous for me to seek medical attention if any sort. My body always goes into a trauma response whenever I’m in a medical setting, and my blood pressure shoots up. It’s just an awful situation, particularly as I age and my health problems get worse.

  • I don’t understand this article. Traditional psychiatry is integrative psychiatry is holistic psychiatry? Well traditional psychiatry destroyed my mind, body and spirit so I’ll take a pass. Maybe it’s the brain damage from all of the brain shocks and the forced/coerced polypharmacy which always included antipsychotics but I don’t understand how one thing can also be it’s opposite. If it’s about breathing exercises and eating well and having boundaries and relationships — how is it psychiatry? Do people get diagnosed by integrative or holistic psychiatrists? I don’t understand it at all.

  • Thanks, Sam. I hope they are unhappy. That was one small event over 15 years of hell that I went through as “a mental patient with borderline”, or, as they like to call me, “a borderline”. I had been in treatment multiple times over the course of my life prior to the borderline diagnosis but the hellish dehumanizing treatment got much worse once I had that label. From the moment the Yale psychiatrist who had recommended ECT for “treatment resistant depression” told me, “You have borderline personality disorder. That’s why the ECT didn’t work” it was 15 years of absolute hell. I doubt I’ll ever recover from the damage they caused.

  • One of the last actions I took as a “mental patient with a borderline diagnosis” was to contact the office of a psychiatrist in my state who advertised himself as providing “holistic psychiatry”. I called and scheduled an appointment with him, for which there was a 2-month wait and for which I was willing to pay hundreds of dollars out of pocket as he did not accept Medicare. I filled out the forms as instructed by his assistant and sent them back prior to my scheduled first appointment. The day before my first appointment, he had his assistant call me and canceled the appointment… Reason being, “he’s not taking any more borderline.”

    There’s no such thing as holistic psychiatry, or integrative psychiatry, or compassionate psychiatry. It’s all dehumanizing, othering, putting a label on the patient, putting the patient in their place. That’s what psychiatry does, and in the process, destroys lives, including mine.

  • Registered,
    I told them in that phone call that I didn’t need an appointment with the pain doctor and then I called and canceled my upcoming appointment with the rheumatologist (the referring doctor in the same system. I don’t know why I said neurologist in my earlier comment, it was a rheumatologist who referred me to the pain doctor, but I didn’t know she was doing that. I only made an appointment with her because I wanted her to order blood work, which even that I would have done on my own and looked into it, but paying out of pocket for blood work it turns out is very expensive) because of what the pain doctor’s office said. The rheumatologist did call me back and left a message asking me to call her so that we could “discuss your concerns”, and I give her credit for that. I don’t know what that conversation would have looked like but at that point I decided to move away and start up with new doctors in a different system. So I’ve gone from Connecticut to Western Massachusetts and already found a primary care doctor. Of course she wants my records from the other system and I already told her that they are going to contain derogatory things about me. She said she’d take it with a grain of salt.
    At the time that that demand was made, I didn’t even have a psychiatrist. I fired the last psychiatrist I had about 3 months prior to that phone call from the pain doctor’s office. So meeting the demand would have meant going out and finding another psychiatrist who would be willing to coordinate my appointment with the pain doctor, which I don’t even know what that means, like, at all. I just know that any attempt I made to meet their demand would have resulted in a s*** show and then that s*** show would have been blamed on me. That’s how it’s been for the last however many decades.

  • Yes, or in my case, it meant being referred to a pain doctor by my neurologist, and the pain doctor demanding that he would only grant me an appointment if it were “coordinated with your psychiatrist.”. When I asked why, the woman on the phone said, “because of some things in your file.”. I said I didn’t need an appointment with the pain doctor as I will never again have a psychiatrist and then called the rheumatologist office to reiterate what I had already said about being a psychiatric survivor. Coordinated care didn’t exist, for decades, and then it was finally implemented to show that they were all against me and I would never be believed.

  • Looking back at my, “time in treatment” (journey through hell), this dynamic makes so much sense and the realization makes me nauseous. I was familiar with the concept of the male gaze, but wasn’t strong enough/didn’t trust myself enough to make the connection.
    Most of the psychiatrists who were “treating” me were older men. I wonder if I became less interesting to them as I aged (following the ECT/borderline diagnosis/onset of polypharmacy, I aged quite rapidly). At a certain point, I became a freak to them. One of them whispered into my ear at the end of a “medication consult, “How many psychiatrists have you seen?” Ah, they are all gross, and I hope they do see some form of punishment.

  • I’m going to let myself off the hook for that last bit – believing credulous bullshit. I was never a customer of psychiatry, always a patient…. sometimes voluntary, often involuntary. I was intelligent enough to poke holes in the logic of what these people were saying to me – that (the speaking up) led directly to more abuse. The societal pressure to “listen to your doctors” and “be compliant” (nothing worse than an unmedicated, non compliant borderline running around, was the general feeling) was immense. I don’t think we should let anyone in a position of power off the hook (certainly not the FDA, which has done nothing to protect US citizens from these poisons they call psychiatric medications. But psychiatrists, as, technically, medical doctors, took an oath to do no harm and to put the well being of the patient above their own self interest, and in both of these they continue to fail miserably.

  • Great article and deconstruction of this interview. Thank you, Dr. Hickey.
    I wonder if these men ever tire of their own BS. I can’t imagine how exhausting it is, keeping up this ruse. Or maybe I’m giving them too much credit… maybe it would only be exhausting for people who value honesty.
    As far as these *doctors’* failures/refusals to name the antipsychiatry miscreants who are causing the profession so much trouble…one obvious reason for the vagueness comes to mind. As Sam and others allude to, many of the people who are most outspoken about what a fraud psychiatry is are former psych patients. The drs can’t come right out and admit they have zero respect for patients even though they know damn well that the experience of being a psych patient is what led a large percentage of “troublemakers” to become vocal about what a fraud the profession is, to become vocal about the human rights abuses psych patients are subjected to. They have to pretend to care about patients (even former patients) or their house of cards will fall down. They seem to feel comfortable enough to attack whistle blowers with a lot of ad hominem b.s., but imagine if they did that to former psych patients – like people who have bravely shared their stories on this and other websites about the damage psychiatry had done to them… about how they barely escaped with their lives? If Pies and his co-horts came after these people, they’d reveal themselves as the monsters they really are. But they know damn well that many antipsychiatry voices are voices of ex-patients.

  • I’m sorry, Lauren. I believe you, if that means anything. I think I may be experiencing something of a permanent/chronic nature also, in terms of psych drug damage. I’ve lost basically everyone and everything and my body is in survival mode. I try to explain it to the couple of people who still speak to me, and they say, “So then, what’s the solution?”. It makes me so angry. Like I’m supposed to know the solution is to what the drugs did that no doctor I’ve ever seen believes me about. Somehow that is our responsibility when we were the ones who were lied to by people who took an oath to do no harm.

  • This “clear eyed explanation” would have been “timely and significant” a few decades ago. Not now.
    “I’m so tired of this shit.”. I second that.
    Psychiatry should take responsibility for what they’ve done including launching a huge information campaign so that every therapist, GP, family member — everyone that a person who’s been harmed by the drugs is now disbelieved by – knows that everything Psychiatry said before about these drugs is completely false – no one had a chemical imbalance (at least not one that the shrinks discovered), the drugs were never safe or effective, and people are suffering. Psychiatry needs to own up or shut up.

  • Thanks, Oldhead. I think I have to agree with your point about the media – the lid has been blown; the fraud of psychiatry has been uncovered and written and spoken about in ways that are easy to understand, so it must be something else. It must be that the media doesn’t want this story and in fact wants to continue to perpetuate a false narrative about “mental illness”.
    I guess I just wanted to believe in something. I had a somewhat romantic idea of “the free press” and loved the slogans – Democracy Dies in Darkness, All the news that’s fit to print/ the “paper of record”. I loved the idea of investigative journalism. And I thought that even though they were late to the party with other stories (like the story of how the pharmaceutical companies were in large part to blame for the opiate epidemic and the FDA let it happen and a bunch of doctors became drug dealers), they did get there eventually, and I thought they might just be late to the party with this one too but…it appears not.

  • Good point, Gerard. I also notice an implicit assumption in Aftab quote that “these critics” who “have no skin in the game” couldn’t possibly be ex-patients – who have all their skin in the game, not to mention their brains, livers, and every other organ; the assumption that a former patient… just as an example, I’ll use myself… couldn’t witness their own profound impairment and suffering that resulted from psych polypharmacy and for this reason became a vocal critic of the current paradigm of care. Aftab, for whatever reason, completely removed ex-patients from the pool of potential critics. The question is, why? Because I can say for certain that I am a critic and have way more skin in the game than I would ever wish for.

  • “I guess you have to approach (doctors) in a very deferential way”. Why I can’t/won’t see a doctor. Seeing a doctor and being deferential would be tantamount to lying. I’m not going to say the doctors know better than me, they have more information than I do. I’ve taken the drugs. I have first hand knowledge, in addition to having more book knowledge than most doctors I’ve met.
    If doctors can’t handle the truth about what these drugs and this health care system have done to patients, that’s on them.

    People got an idea from the media that maybe they have a chemical imbalance. The media did not come up with the idea of chemical imbalance. Where did the media get the idea from?

  • Someone Else,
    Hhm, what does it say that that disclaimer was removed from the dsm? Did the psychiatrists know that it was possible for psych drugs to create bipolar-looking “symptoms”, and then they didn’t know it anymore so they took that out? I wonder if the reason was that they worried about malpractice suits… because it sounds like an admission that the drugs can cause major problems, and the people prescribing the drugs know this, or should know it.

  • Someone Else,
    Hhm, what does it say that that disclaimer was removed from the dsm? Did the psychiatrists know that it was possible for psych drugs to create bipolar-looking “symptoms”, and then they didn’t know it anymore so they took that out? I wonder if the reason was that they worried about malpractice suits… because it sounds like an admission that the drugs can cause major problems, and the people prescribing the drugs know this, or should know it.

  • It’s so painful to read this and know, this is what happened to me, to my life, why I’ve lost my whole family, my ability to work, and any friend I ever had, because I was labeled and drugged for decades (leaving out the ECT), was never provided with informed consent, and never believed. I finally learned the term akathisia on my own, after years of hell, still no one in real life believes me. The message is “get over it” or, “if you really feel that bad, go to the doctor”. For what? More blame and invalidation? More labels? Another trip to the psych ward? And an entire profession that maybe is unaware or maybe is aware but dares not say anything.
    Where does that leave me and the thousands of others who are suffering in a way that is long term, chronic and soul killing because they committed the “crime” of asking for help, of putting their trust in doctors?

  • Thanks Evanhaar. Yes, the proper use and tailoring of supplements can be very complex, and hard to figure out with this brain fog. The last naturopath I went to, I made very clear, prior to signing up for a very expensive, “personalized” program, my history with psych drugs and the fact that I was in withdrawal from Cymbalta. I filled out all the paperwork, met several times with the “salesperson” on the staff (who called herself a case manager), but in my first meeting with the naturopath, he was surprised to learn that I “hadn’t been taking my meds” (he hadn’t read my intake forms, I guess) and tried to make it seem like I’d misrepresented my situation. I was outta there. Most of these people (most people) have never heard of akathisia, so how can they really help? It’s nice to feel like someone will hold my hand/can lead me out of the woods, but I need to find my own way.

  • Yes, Sam, I think it’s hard for medical people to deal with the system they’re a part of, they must see every day how inadequate it is. And then there are the bullies, and the ones who will treat patients like criminals when just acknowledging that a person is in pain, scared, exhausted – would go a long way.
    “…they caused me to pick up stakes after 30 years and become obsessed with how the rest of my life should look…” – this is where I am now. I gave my landlord notice and am busy packing.

  • evanhaar, I will look into these Thank you. I have an entire cabinet of supplements but don’t take any consistently because I don’t really know what I need. My modus operandi is to see a naturopath maybe once or twice, then deciding that they don’t get it/are talking down to me/are trying to rip me off. I often purchase some supplements before I quit. When anyone takes a tone with me or when something about their demeanor reminds me of being in a and an appointment with a psychiatrist, I swear I going to a PTSD response.
    Or I’ll read something and buy them online. The brain fog is tremendous – that’s part of the problem. But I will look into the manganese and b3. There are so many different B vitamins!
    I do try to stay hydrated. Doing better with that.

  • Thanks, Steve. I’m going to try to move, again, for the 5th time in 6 years. I don’t know where I’ll go… just far enough away that maybe my medical records won’t follow me. This way if I get sick I’ll be able to have a medical emergency or see a doctor and not face judgement based on what’s written in my medical record/medical rap sheet. I’d like to have a dog or a cat at some point. The idea that this is still possible is what keeps me going.

  • Thank you, Boans. Yes there is maybe nothing so painful as false hope. I have open myself up so many times to the possibility that I would be heard, weather by a doctor, a naturopath, a family member (no chance), a friend. I try to tell them what happened and I see the defense has come up in their eyes and then they will interrupt or tell me about some coping skill that I need to learn. I remember hearing Amanda Knox speak once and she said something about the fear that people have around her, that they are somewhat programmed to believe that someone and her situation must be guilty, because if she is innocent that means that this kind of thing could happen to anyone and that thought is too frightening for most people. I think a lot of people come to the conclusion that I am wallowing, feeling sorry for myself, playing the victim. That’s a part of it but I think a small part. More than that I want to be believed. Unfortunately this website as the only place where I feel that I get that kind of reception, without skepticism.
    I really need to work on my faith in something, my spirituality. I need to find a way to make meaning from what has happened because the idea that it was all just random is very painful. I wish I could say that I’ve learned something from everything that’s happened but mostly what I’ve learned is not to trust anyone.
    This may sound really out there. But I think there’s a child in me that is still desperately looking for Hope comfort and love. I had thought that that child was dead but now I see that as long as I’m alive that child will be too and I’m the only one who can comfort her. I need to find a way to be mother and father to myself.

  • aria, the experience you describe – pacing for hours just to not scream – I can relate completely. I remember being in IOP level DBT, where I was allowed to make “coaching calls” for help “using your skills” – which included “crisis survival skills” like intense exercise and sticking my face in a bowl of ice water. I was having crises almost daily; this was all put down to “borderline symptoms”. During the 5 years I was in and out of that program, I was prescribed so many different drugs – antidepressants, antipsychotics, mood stabilizers, amphetamines – by so many different prescribers, it was ridiculous. No one ever said that maybe the drugs were at fault and I only learned about akathisia within the last year. When I first learned about it, the feelings of betrayal were immense.
    I remember feeling like such a burden and a failure making those calls every day. I was always getting messages that I needed to learn to use my skills more on my own. I remember one time when I didn’t call and instead went into my storage area and smashed all my Christmas ornaments into shards.
    I admire your resourcefulness and perseverance in tapering off the drugs. They sure don’t make it easy.

  • Thank you, KindRegards, yes, looking back I see how much misogyny entered into the treatment that I received. I had a good mind and found so many holes in the logic of my treatment providers, and wasn’t shy about saying so. This led to a lot of harm. I can see that now.
    Actually it was probably even more than 30 years. It started when I was 17 and the board of education sent me to a psychiatrist because I dropped out of school and their numerous calls to my parents or ignored. She immediately put me on Elavil and I saw her once a week until the day I graduated at which time she terminated treatment because she stopped getting paid, and she left me with a full bottle of Elavil. I only learned the term akathisia within the last year and I’ve seen lists of drugs that cause akathisia or can cause it and Elavil is on it. I know there are so many for whom the drugging started even earlier – when they were young children. That the general public does not see this as a crime and human rights violation is beyond me. Now they have chewable adderal for children who are too young to swallow a pill, and the FDA is fine with this…I don’t get it.
    Thank you for your compassion.

  • Thank you, ThereAreFourLights, yes, sometimes coming to this website and reading the posts and the comments is the only thing that reminds me that this is not all in my head. There is nowhere else I can get this kind of validation. As much as it pains me to hear what’s happened to so many others, there is a comfort in it as well because it tells me that all that time I suspected my symptoms were due in large part to iatrogenic harm, I didn’t have the faith in myself to follow through on that.

  • Thank you, Steve. I was actually planning a move to the Springfield Massachusetts area because of the recovery Community there and the chance to be around people who had similar experiences. It seems that those are the only people who can really understand. Then covid-19 arrived and I’ve been in a state of limbo / paralysis ever since, wondering what to do. I’m grateful for this website and was so hurt by my friend’s comment that I cut off contact with her. Maybe a mistake but as much as I’ve tried to explain the situation to her, she thinks it’s something I can just put behind me. I completely relate to the idea of having a wolf at my heels and dealing with an existential threat. One of my biggest fears is becoming physically unable to care for myself and placed in a nursing home where I believe I would be in danger – definitely of being medicated and possibly of receiving more shock treatments against my will. When I was briefly placed in a nursing home after fracturing my ankle a couple of years ago I was made to take Wellbutrin in addition to the Zoloft I’d already been taking. I explained to the psychiatrist, who I saw once for 5 minutes, that Wellbutrin had made me very agitated in the past and I didn’t want to be taking it in addition to the Zoloft. She said that the Zoloft wasn’t working because I was still depressed and that whatever the effect I thought I got from the Wellbutrin, that was in the past so it would be different now. I was only in that facility for a couple of weeks and I can’t imagine what would happen if I was in a place like that long term. I don’t have any family. I’ve looked into the living will kind of thing, the thing that would give me some power to say I don’t want this or that done to me, but my understanding was that the living will needs to be carried out by a family member. So I don’t think anyone who is not in a similar situation can understand that this is not something in my past. I suppose if I get lucky and use a lot of self-discipline I might be able to get my physical health back to a better state, but most people as they age needs some form of assistance and that terrifies me.

  • I’m going through withdrawal akathisia after coming off Cymbalta. At this point I doubt the hell will ever end. I was prescribed an ssri or snri of one kind or another for the past 30 years. Eventually they added antipsychotics, shocked my brain, and said I was borderline. For some people there is no way back from hell. I have zero support. I’m completely alone and was recently denied a medical appointment because I wasn’t willing to “coordinate it with your psychiatrist.” So I guess it’s just survive until my body gives out. I’m 54 and physically broken so maybe it won’t be too much longer. No one believes me so I’ve walled myself off from the few people who still deigned to speak to me. The last friend I had said “stop going to that mad in America website. It only feed your anger and despair.” She compared it to an alcoholic taking a drink. I have no faith left in humanity.

  • I’m sorry, Rachel, for you, for me (I feel/think the same), and for everyone who’s been victimized by psychiatry. I’ve been accused in the past (not by anyone here), by multiple people, including therapists and immediate family members, of “playing the victim”. I was just lying in bed, wondering if the overwhelming exhaustion, weakness, and trouble breathing was due to Cymbalta withdrawal or due to some other shit, knowing at the same time that it’s a moot point because it’s only getting worse and there is no help for it, medical or otherwise. I hate my apartment and thought I had it in me to move again so I gave my landlord notice. I need to be out by the end of September but day after day has gone by where, not only did I do nothing to prepare to move, I barely got out of bed. It would be so much simpler to just die in my sleep one night rather than deal with yet another move where I don’t even have a place to go and there’s no where I want to be, I just don’t want to be here because I can’t deal with my neighbors anymore, or the noise. I’m not suicidal, just done. The most positive emotion I have left is apathy. I’m sorry, it sucks, and we didn’t/don’t deserve it.

  • Miranda,
    I came across the “off his meds” term yesterday, in a movie review of all things. The movie was about the apostle John, and the movie critic complained that the character seemed less like he was trying to spread the news of Jesus and more like a ranting person who had “gone off his meds.”
    It burns me up that this phrase and others are so widely accepted despite their obvious connotation. I would love to read a blog post on this.

    Thank you, Caroline. Great article. I would add borderline personality to the list of diagnoses in which any perceived misstep is viewed as a threat. Once I had that diagnosis, anything I did or said was questioned.

  • Yes, Sam. So many people want to delude themselves that the people involved in the manufacture and prescribing of psych drugs have more honest intentions than the people who were involved in the manufacture and prescribing of the opiates that caused the epidemic. They’re the same people. Pharmaceutical companies and doctors. And in both cases the FDA lets it happen. And in both cases the victims are the patients who wind up incarcerated in psych wards or in the case of opiate addicts, in prison. We get treated as criminals. The pharmaceutical companies and the doctors are the real criminals.

  • Cymbalta is poison. I don’t know if I’ll ever be “right” since coming off it. I still have terrible tinnitus, profuse sweating, and serious problems with agitation/irritability/paranoia. The GP who recommended it to me gave me no warning of the dangers (she just said, “you have pain. Cymbalta is great for pain”), and because I’ve been denied actual medical help for everything from a fractured ankle to severe arthritis and degeneration in my neck to hip bursitis while they chalk my pain up to fibromyalgia (i.e. they see me as drug seeker/hypochondriac), I broke down and started taking it. My body is so broken from the ECT and all the drugs they’ve thrown at me and told me I needed from the time I was 17. I’m 54 now and the Cymbalta withdrawal on top of other additional trauma I’ve been through the past couple of years while being denied any form of medical help, changed my entire personality and outlook on life. I see the world as a very dangerous place and life as an endless nightmare. I used to have a light in me but it’s gone now.

  • Sam, thank you, and yes that psychiatrist did hate me. I couldn’t see it then but I see it now. He couldn’t stand the fact that I was vocal once I learned that the psychiatrist I’d seen for 6 years who had prescribed everything from Prozac to Klonopin to Zoloft to Paxil to Effexor to Wellbutrin to finally Adderal had kept 0 records of anything. I knew right away that this was unacceptable/illegal and I did try to report him to the APA. They told me that unless I could prove definitively that the lack of record-keeping caused me serious harm, there was nothing they could or would do. At one point the ECT psychiatrist, who is the one who had asked for the records (that was how I finally found out that there were no records) tried to tell me that the referring psychiatrist hadn’t kept any records “because he was trying to protect you”. Um, protect me from what? I wasn’t buying it and that made him crazy. That made him decide that he had better label my anger as inappropriate, hence the borderline diagnosis. I wish I had had the strength back then to see clearly what was happening and to realize that these people had no concern at all for my well-being and in fact were more than ready to punish me for having the nerve to defend myself.
    i.e. cox, I’m not sure if your question was for me about reporting these abuses to a watchdog group. I did file a formal complaint with Yale, where the ECT was done. They never answered it. At one point I spoke to a woman in patient relations after I had filed the complaint and it was just a lot of BS from her. When I explained to her that the experience I had in treatment had left me very isolated and afraid and physically unwell but also afraid of doctors, she suggested that I get a Life Alert, as though that would solve everything. Of course that just made me angrier and then I started posting tons of Google reviews telling my story of what had happened. I see now that filing the complaint with Yale was similar to if I had been a prisoner and had been abused by a prison guard and had filed my complaint with another prison guard. I considered going to the state but then figured it would just be more of the same. I realize that I have risked legal retaliation based on some of the Google reviews I put up but I was willing to risk it. I tried to go through what they would call appropriate channels, and of course while this was happening I tried to defend myself very vocally, but I was just dismissed, ignored, ridiculed and punished. I learned a lot in the past couple of years about the lengths that they will go to to silence someone like me.

  • Rosalee, what that psychiatrist did was criminal and sometimes I hope there is another life after this just so that these sorts of people will have to face what they’ve done, the pain they’ve caused others. Kicking a person when they’re down seems to be a specialty of a lot of psychiatrists.
    I know from our conversations that you have tried to get these labels removed from your record just in order to get medical treatment that is not harmful.
    A lot of people have told me, when they hear pieces of my story, that I should get over it because it’s in the past. But we know it’s not in the past. The harm is still happening. I was just denied an appointment with a pain specialist because he made a condition that our initial appointment would need to be “coordinated with your psychiatrist”. I explained that I was a psychiatric survivor and would never have another psychiatrist again if I have anything to say about it. Of course I was denied the appointment, which I don’t even care because anyone who starts a treatment that way has nothing but more pain in store for me. In my head I was like, do you need the psychiatrist to explain to you the pain I experience with a fractured ankle that never healed right?

    So how do we just get over it when it’s still happening? I guess it’s just the sort of thing that people can’t understand unless they’ve experienced it.

  • Yes. I had a similar experience to DBT, where the so-called “core assumptions” of the treatment we’re completely disregarded by the certified DBT therapist I was in treatment with and when I tried to talk to them about it they acted like I was crazy, overreacting, inappropriately angry blah blah blah which just made me angrier, and then they just flat-out refused to talk to me about it.

    The DBT therapist I was sent to (by another fully certified DBT therapist), and who accepted me as a patient, was not in consultation. The party line goes that you have to follow DBT protocol, including being part of a consultation team, in order to call yourself a DBT therapist.

    I thought that the other certified DBT therapists would be as offended as I was by the crap this woman pulled but they just shrugged it off and still blamed me for what happened. She wasn’t in consultation when she accepted me as a patient, and a couple months in, when the therapy was clearly going nowhere, I brought up my concern with her, during a session, that she was not in consultation. The following week she started our appointment explaining how she had tried to find a consultation team but one was too expensive, the other one was too long of a drive, the other one had therapists who were too inexperienced, blah blah blah. The solution, she said, was for me to go back to the IOP DBT program I had just come out of. She had even gone and got the paperwork for me to re-enter the program. She told me that when she talked to them and picked up the paperwork they said, “tell her this will be her last time”. That really burned me up, that she tried to pass it off like it was my idea, like I had asked to go back there instead of the truth: that she was trying to send me back there so that she wouldn’t have to go and find a consultation team on her own.

    I asked the therapist whether she didn’t need to be in consultation to treat her other patients. She told me no, that her other patients did fine without her being in consultation, that I was the only one she needed consultation for. A couple of months later she dropped me with no warning.

    When I try to report her to the DBT governing board they told me that they don’t deal with complaints about therapists and if I had a problem I should report it through the state. Obviously no one at the state is going to care that this therapist wasn’t following DBT protocol.

    The thing that burns me up is they make such a big deal about their treatment protocol and how important certification is and fidelity to the treatment is so so important and then when I point out their behavior goes against stated protocol, that they’re breaking their own rules that they made such a big deal about, they tell me that my anger is inappropriate and they cut off contact. This was maybe my most painful experience as a mental patient because all the other treatment experiences, basically everyone was an a****** and a hypocrite, but there was one DBT therapist, the one who ran the IOP program and who referred me to this outpatient DBT therapist, and I really thought he had my back. I trusted him. And then it turned out they’re all hypocrites.

    I think the reason she took me on as a patient even though she was overwhelmed in her life and didn’t have a consultation team going was that she was up for a job in a new program that the referring therapist was running, a nice cushy job at Yale with benefits, and I knew she was in trouble at her job with the state because she confided to me in the session where she ended treatment, where she spent the whole session telling me how overwhelmed she was, that her colleagues at the state had filed a complaint against her. She needed the job at Yale so she accepted me as a patient and then she just dropped me with no warning after jerking me around for months and I emailed the referring therapist, the one who ran the IOP program, and I told him that the treatment had ended and that she had never been in consultation. He answered my email but he didn’t say anything about her or have any response to what I told him about her not being in consultation and then years later I found out that he gave her that job probably within a month after my sending him the email.

    And then he refused to talk to me about any of it. I sent him one email where I said this is very important to me, I feel profoundly hurt by what has happened and I need to talk to you about it. If not, I said, I need to write to dr. Linehan. He just ignored the email and months later when I asked him why he didn’t answer it he said that he thought I was being sarcastic or threatening in it. And then I was like, yeah I said I was profoundly hurt, and you read that as sarcastic or threatening…maybe because you didn’t want to address it, how convenient.
    The whole thing just makes me sick. And it makes me sick to think how much time I wasted and for how long I fell for all their b.s.

  • Joanna,
    I appreciate your comment and understand where you’re coming from. You make a very good point that you are actually saving the government money in not use utilizing psychiatric services, and also pointing out the additional hurdles that people face finding and keeping employment once they’ve been diagnosed with a mental illness. I faced the same hurdles and tried many times to re-enter the workforce but never succeeded.
    When I first went on social security disability about 12 years ago after having been employed full-time for over a decade, I felt very guilty and I felt ashamed. I’m still on disability but I no longer feel guilty about it. The psychiatric treatment that I received is what led to my becoming disabled. After being treated for what was diagnosed as depression for 6 years by a psychiatrist who prescribed dozens of different drugs and, I found out at the end of the six years, kept no records, I was referred by him to another psychiatrist for what was then being called treatment-resistant depression. That psychiatrist told me that I was a good candidate for ECT. I did some reading about it and I read that ECT could cause memory problems.
    At my next appointment with the psychiatrist I asked him about memory issues from ECT. He told me that he had never had a patient who experienced memory issues from ECT. I don’t know how many ECT treatments I received. I did agree to it but I was not informed of the dangers.
    After coming out of the hospital once the ECT treatments had stopped I drove to my follow-up appointment with the psychiatrist (I had no family support and was trying to navigate everything alone even after the ECT despite the severe memory loss I did experience). When I met with this psychiatrist in his office, he had a very grim manner and look on his face when he said, “you have borderline personality disorder. That’s why the ECT didn’t work. You need dialectical behavior therapy.”. The psychiatrist didn’t explain what any of these terms meant to him. I had never heard of borderline personality disorder or dialectical behavior therapy. He left me to look that up on the computer when I went home where I was alone.
    That was just the beginning of the treatment trauma that led to my being disabled. So no, I no longer feel guilty. I do struggle with shame everyday but I believe that is also very much inflicted by the treatment I received. I live a very isolated existence now.

  • These were drugs prescribed by doctors. In my case, and many others, I was told over and over by the doctors thatI needed to be taking these drugs because they were safe and effective and would control the symptoms of my mental illness that they had diagnosed me with. I was also coerced by friends and family and even acquaintances into continuing the medication/drugs. I was brainwashed into thinking that my belief that the drugs were doing more harm was again due to my mental illness…i.e. that I wasn’t sane enough to understand that I needed to take these drugs. When I stopped or tried to stop taking the drugs I was called non-compliant.
    Yes there are long-term effects but most people who were prescribed the drugs were not giving informed consent on the long-term effects of these drugs which was the duty of the doctors to provide.

  • Rose, Thank you so much for sharing your story. I was deeply affected by it and find it so upsetting that what you experienced is far from uncommon. The absolute confidence of the first psychiatrist in her abilities, as she was doing you so much harm; the complete dismissal by doctors of what you knew…and tried to tell them…to be the cause of the problems (the drugs); the addition of more drugs and more diagnoses by the psychiatrists you saw subsequent to the first psychiatrist (the one who sent you down this hellish path)…this all happened to me, as I know from this website it also happened to many others. I applaud you for writing out what happened so clearly and concisely. I can imagine how much work it took.
    I’m having trouble verbalizing my thoughts at the moment, so I will just say thank you for sharing your story. I am deeply appreciative on a personal level and I believe that…eventually…these histories will gain a wider audience and lead to systemic change.

  • mmarti2007,
    I have to say, I’m as discouraged as you are by all of this, by the sense that once a person gets on the Psychiatric merry go round (often through no fault of their own), there is no way off… certainly no easy way off. I was just denied an appointment with a pain specialist (who I’ve never met or spoken to… the referral came from a rheumatologist) because I refused their demand that “the appointment be coordinated with your psychiatrist”, whatever that even means. I explained to the woman on the phone that I’m a Psychiatric survivor, that I don’t have a psychiatrist and won’t ever see another psychiatrist. Of course I was denied the appointment, despite having multiple “legitimate” reasons for physical pain.
    That said, I think these articles are important. They tell the truth about psych drugs, and may be of help to people who are not yet on the merry go round – it’s a proper warning to stay away from psych drugs. I wish I’d had such a warning, 35 years ago.
    I do share your frustration and discouragement. It’s not an easy road by any means.

  • Amnesia,
    I am so sorry. I wish I had something useful to say to you. All I can say is, I believe everything that you say and I am so sorry that these things happened to you. I can’t imagine how strong you must be to have survived all of it. All of us who have survived these atrocities are stronger than anyone “looking in from the outside” gives us credit for.

  • Yes, Steve. It’s like a verbal shrug. No thanks. She said, “you’re self medicating (with Kratom) and that has it’s risks.”. I told her I will continue to self medicate, that being my safest option. I really don’t need to hear more from the rheumatologist about how safe Cymbalta is as long as it doesn’t make me feel so good that I want to…you know. I don’t need to hear anything else from any of these people. Imagine how much more money they would make off of me if I listened to them though. That’s a rheumatologist, a pain specialist, a psychiatrist to, you know, coordinate my appointments with the pain specialist, a primary care doctor which they keep telling me I need…and then the stay in the hospital when they all drive me over the edge.

  • Sam,
    Thanks for your comment. As painful as it to hear that you have also experienced this level of discrimination and intimidation from people in the “helping” professions, it’s also validating in that it reminds me that it’s not in my head, I’m not paranoid. This is really happening to me and countless others. I had hired a patient advocate and told her a bit of my history and I emailed her to let her know about what happened with the pain doctor. She wrote back saying, “I’m sorry you got bounced around today,…but this is the system and we can’t change the system. I recommend that you reinstate your appointment with the rheumatologist.”. I didn’t get bounced around. I got discriminated against, based on my record, my medical record, my medical rap sheet… As far as these people are concerned. Yes you’re right they hate tears. They also hate anger and hopelessness and being contradicted. They hate everything except robotic agreement that the ridiculous things they are saying actually make sense.apparently they can’t handle anything except a doctor knows best attitude even when they’ve proven over and over again that they know nothing.

  • SE,
    This makes sense. Sad, though…for them. I hope they cry themselves to sleep at night, or at least wake up with headaches.
    I broke down and had an appointment with a rheumatologist a few weeks ago, by video chat. I wanted to get some blood work. If I could have ordered it myself I would have.
    I thought it would be easier to do a video appointment than an in-person appointment but I still was crying by the end of our chat. This doctor, who was very nice and sympathetic to my issues, couldn’t understand why I had gone off Cymbalta because, she said, Cymbalta is a safe and effective drug, the only danger is a slightly higher risk of suicide when people first start taking it, because they feel so much better.
    Yeah, she really said that. Unbeknownst to me she referred me to a pain doctor who’s office called me yesterday. I called back to schedule the appointment today and learned from the assistant that the pain doctor would only agree to have an appointment with me if it were coordinated with my psychiatrist. I asked why this was and the assistant said something vague about “issues in your medical records”. Yeah I’ve been blacklisted. Probably all the Google reviews I wrote. I explained to the assistant that I do not have a psychiatrist, that I will not have a psychiatrist, and that I am a psychiatric survivor and do not need an appointment with the pain doctor. I just got finished writing a Health Grades review of the pain doctor describing this experience.
    I was so upset about this all day. Now I just think it’s stupid and kind of pathetic on their part. I have Kratom for pain and I don’t need a prescription for it so I don’t need a pain doctor anyway.

  • Someone Else,
    Yes, they are gaslighters, in my experience too.
    After I wrote that comment, I said to myself, if you could rewind why wouldn’t you rewind to *before* you had the ECT?
    Maybe some residual damage from all the years of drugs and shocks lol.
    I don’t understand why other doctors… internists, rheumatologists etc…stand with psychiatry as if it’s real medicine. You’re right, it makes them all untrustworthy.

  • I wish I could rewind my life 15 years to the day I was sitting in the office of an esteemed Yale psychiatrist who, after having shocked my brain a number of times (he’d told me prior to my agreeing to the ECT that I was a “good candidate”, what with my “treatment resistant depression”; he’d assured me that his patients did not suffer the “side effect” of impaired memory.) explained why it was my fault I didn’t get better. What he told me in his office that day:. “You have borderline personality disorder. That’s why the ECT didn’t work.”. I wish I could go back in time. I’d throw this article in his face and never speak to another psychiatrist again. Instead I wasted another 15 years letting them gaslight me.

  • Thank you for your response, Sera. Yes, accepting that people don’t get it because they can’t get it, because they haven’t been there, is painful but maybe necessary. Whenever I’ve tried to explain the loss to someone who hasn’t experienced it, any validation I get is usually couched in a “yes, but…” type of statement. “Yes, but that’s in the past…”. Not according to my nervous system.
    I didn’t realize Jaffe is not a Dr. That he’s given a platform is depressing. Not that most psychiatrists deserve a platform either.

  • Hi, Sera, Thank you for a great article.

    I have a story that I’d love to share with Dr. Jaffe, not that he would listen.

    Yesterday morning I looked out my bedroom window and saw a city fire department vehicle in the parking lot of my building. On the door of the vehicle it said “Community Risk Reduction”. I didn’t then and still don’t have any idea why this vehicle was in the parking lot. There was a woman in the driver’s seat talking on the phone.

    Because of my long history of being taken to the hospital in an ambulance, accompanied by the police, who show up first, and deposited in the crisis intervention unit against my will, my brain came up with a theory about why that vehicle was there. My brain said: The police are on their way, as well as the ambulance. The woman in the community risk reduction vehicle is on the phone with them planning how they’re going to get me out of my apartment and into the ambulance without exposing themselves in the event that I have covid-19.

    I tried to convince myself otherwise. I tried to tell myself that the reasons for this vehicle to be in the parking lot had nothing to do with me and that probably soon the woman would start the car and drive away. That didn’t keep me from going into a full body PTSD response, literally shaking, standing at the window and peering through the blinds, then getting back in bed and curling up in the fetal position and trying to forget what was happening, then back to the window, for an hour. Finally I went from bed to window and saw that the car was gone. I wasn’t so much relieved as spent. The relief came later.

    Like the book says, The Body Keeps the Score, and mine had no doubt that I should be very afraid in that situation. Yes, those hospitalizations/incarcerations have left a mark. I related this story to a compassionate friend of mine who happens not to have a psych history, and she suggested that if that happened again, I could go outside and politely ask the person in the vehicle why they were there. I thought, I couldn’t do that, not in the state I was in. Maybe it’s something you have to have experienced to understand. That’s what keeps me coming back to this website – the wisdom and validation of people who get it.

  • You’re right, Steve. I may have a touch of Stockholm Syndrome or over-identification with the perspective of my former treatment providers (it was a long 35 years). If I think of complaint-filing in another context, I see that the act in and of itself is not an aggressive one.
    A few weeks ago I was driving on the highway and somehow I wound up with two flat rear tires. My car was towed to Pep Boys, where they replaced both rear tires and said I was “good to go”. I got back on the highway and, after driving 20 miles or so, I saw that both of the new tires had lost quite a bit of air. By the time I got to my destination, both tires were almost flat. I had the car towed to another Pep Boys, where they replaced the valve stems and put the lost air back in the new tires.
    If I write to Pep Boys corporate office and say, “Such and such happened, when they replaced my flat tires they should have checked the valve stems and because they didn’t I wound up in an unsafe situation…I’m glad that the second time my car was brought in, they replaced the valve stems but that really should have been done the first time…etc.” that probably wouldn’t be interpreted by the powers that be at Pep Boys as an act of aggression but more of a straight-talk, here’s my opinion about the service I received and how your company could have done better type of thing.
    So, you’re right…people providing services should in general be open to feedback from the person receiving the service. So when I say, “I would have preferred, rather than the doctor saying, ‘You have borderline personality disorder. That’s why the ECT didn’t work,’ that he would make the diagnosis prior to needlessly shocking my brain thus sparing me brain damage” it’s just feedback from a service-user. Thank you for reminding me that it was my right to provide that feedback.

  • “Are there people with lived experience who can speak personally and articulately to things that damaged them as well as things that worked?”

    From what I have read on this website, there are such people. But as you suggest, Robert, the personal stories shared here are being read by others who have been hurt by the system and/or who already believe the system should be reformed if not abolished, so these authors are for the most part “preaching to the choir.”
    I filed a formal complaint with a hospital where I’d received treatment, and although the filing of a complaint might be seen as an inherently “aggressive” act, I worked very hard, in describing my experience, both verbally and in writing, to maintain a non-aggressive tone because I did not want the people tasked with hearing my grievances to be “on the defensive”. I very much wanted them to be able to hear me…because what I wanted from them, at that point, more than anything, was validation. Validation that I had been put in several discreet situations in which my health, my ability to trust treatment providers, and my prospects for recovery were threatened and/or damaged. Unfortunately, I did not get the validation I was seeking. Instead, the response was to patronize, then ignore me. At that point, I lost diplomacy and reverted to an aggressive tone…I felt I had put in the effort and still had not been heard.
    The other thing I’d hoped to achieve in filing the complaint was to present an argument for the need for a patient advocate who is not in any way beholden to the system to be assigned to any patient receiving a hospital level of care. I tried to get across the idea that, in my experience, any therapist, psychiatrist, social worker, etc who is employed by the “system” has an inherent conflict of interest, in that if they speak up about what they see as a patient being unfairly treated/harmed, they are very likely to experience repercussions due to the tacit agreement between treatment providers to “stick together”. To my disappointment, I got no feedback on this argument.
    While systemic reforms require people with lived experience being able to speak articulately about what harmed them and what helped, it also requires people working in the system who will listen. In my case, it was the absence of people who would listen that led me to conclude that the system can’t be reformed.

  • Yes, I feel the same way, Jeffrey. This is how I’ve lived most of my life also, through no choice I made. Abandoned by family and friends, people were always putting up “boundaries” so they wouldn’t have to deal with my “severe mental illness”. No one but me ever wondered if the “help” I was getting was the thing that was making my life unbearable.
    I guess it gives us a kind of strength in situations like this. Quarantine? Yes, I can do that. I’ve been doing it voluntarily or involuntarily most of my life. Voluntarily is when I “took the hint” that I don’t belong.
    And now I live most of my life in quotation marks.

  • Not to be flippant…I understand this is not the point of the article and that the emotional distress of being quarantined due to Covid 19 can be profound… but I couldn’t help but think of all the parallels there are to the experience of being committed to a psych ward. Stigma, lack of clear communication, boredom, lack of necessary supplies, fear of being contagious…anger, PTSD. It kind of makes me sorry for the whole world.

  • Very nice job deconstructing how the concept of anosognosia is used against people who are labeled with psych diagnoses as just another tool to strip them of their rights.

    The New York Times is just as guilty of this kind of thing. Liberal/Progressive? Not on this issue. Do they even recognize it as an issue–as something that needs attention, the fact that psychiatry is completely out of control and trampling all over people’s basic rights? It doesn’t seem like they do.

    A recent column by Jane Brody (NY Times, “When Mental Illness is Severe”, Nov. 18, 2019) besides being a thinly veiled plug for a recently published book by a psychiatrist (friend of Ms. Brody’s?), was similarly full of ideas about the “dangers” of allowing “mentally ill” people to forego “much needed treatment” simply because “they don’t know they’re ill”. Barf.
    A few of the people who commented called out Ms. Brody on the general stigmatizing tone of the article and it’s many factual errors, but many of the comments were right on board with the idea that “mentally ill” people had just too many rights and certainly some of those rights should be removed…for their own good.

  • I just subscribed to the Boston Globe because I was hoping to move to Massachusetts and beco part of the recovery community that exists in Western Massachusetts. In my current state – Connecticut – there isn’t anywhere safe for someone like me, who’s been labeled, brain shocked and drugged, then thrown away by the system and by whatever family I had. I’m too sick to move again and now believe there is nowhere safe for a person like me. I’ll definitely cancel my subscription to the Globe.

  • Alfie,
    The other thing I have, besides the shame and the anger, is fear. I don’t have family, and at 53, my mental and physical health aren’t good (some of it is normal aging but most is damage from the interventions. Even if I can accept what happened in the past and decide to get as much as possible out of the rest of my life, I really fear becoming incapacitated in any way and being put in some kind of long term care situation and being made to take psych drugs again or even have ECT done again and not being able to say no. I’ve looked into Advance Directives but it requires a family member or close friend to put into action, and there is no one to fill that role. Just so many negative emotions about all of it, where I also wind up feeling like I just want to be done with it, just escape. The system can just take so much from people, including any sense of safety. I am taking steps to move forward but it is a monumental struggle.

  • I understand, Alfie. At some point I need to gain some acceptance if I’m to have any kind of quality of living. One thing that would help is having any kind of validation in real life like what I find on this website. Mainly people in my real life just think I’m a loser, that I wallow in anger, that I play the victim, or that I need to find a new psychiatrist and “get back on my meds”. They see it as, I’ve had so much “help” and I stubbornly refused to be helped by the help. I guess for now I need to find a way to validate myself. I also have a ton of shame because I don’t like that I lash out at people when I feel like they’re putting me down or they think I’m just a “hopeless borderline”. Between the shame and the anger I have very little peace. I need to work on having more peace which, as you said, comes from acceptance.

  • Everything you describe – that’s how I feel, too. I spent some time going to AA also and felt the same pressure to be grateful. I was in DBT at the time, too, where everything was about being willing. The more pressure I felt to be grateful and willing, the more resentment built up inside me.
    I like what that person said to you,…the resentment is your spirit saying, don’t let them take your dignity and self respect. I would add to that, our intuition, our gut sense of what’s happening. Sometimes, when I thought I was being “played” – I really was being played. I wish I’d trusted my instincts instead of suppressing them and accepting the “party line”:. You believe someone is trying to hurt you/lying to you because you have paranoia and anger because you have borderline personality.
    Unfortunately, after spending so much time in the system, I really do have trust issues. There’s no one right now in my real life that I trust. I think I’m going to need to slowly build trust in myself before I can think about trusting anyone else.