Sunday, December 15, 2019

Comments by S.A.

Showing 17 of 17 comments.

  • I don’t think being a mental patient and being a slave are the same thing. Slaves actually did physical labour for their masters, whereas psychiatric patients consume a substance for which they or the government pay. Those are two very different activities. The psychiatric patient is not compelled to spend all their waking hours performing unpaid labour for the doctor. In fact, the drugs can make it impossible to do any sort of work if they make you enough of a zombie. I think we need a different sort of metaphor here. Perhaps, if you are forced to take psychiatric drugs, you are a prisoner (e.g. take a look at “Tranquil Prisons” by Erick Fabris). But slave, I don’t think so.

  • Why self-proclaimed progressives are so pro-psychiatry is something that’s bothered me as well. I have a few theories about it.

    First, the idea that psychiatry is “help”. There is a progressive idea that it’s wrong to blame people for their own problems, therefore those in trouble need “help”. I think progressives may be conflating all sorts of “help” into the same category. They may have an image of a comprehensive system that gives people choices and options, including counseling and talk therapy. Until you’re in the system itself, especially in a coercive situation, you really don’t understand that “help” can feel like torture or neglect.

    Second, many progressives have themselves dealt with problems for years without adequate resolution and been given the relatively minor labels of “depression” and “anxiety”. From their point of view, the “help” offered has been voluntary, and in fact, their experience is that their problems weren’t taken seriously enough to warrant adequate “help”. For them, the decision to take a psych drug might have come out of years of trying other things that didn’t work, and when psych drugs do work for them, they are liable to think that everyone should at least have that option. They like the idea that people in similar situations aren’t called “weak” or “lazy”, and they have friends with “depression”/”anxiety” that they can commiserate as they are able to go about their relatively normal lives. So their experience has been one of support, and possibly even successful psychopharmacological intervention. They see the issue as one of empathy for those struggling.

    Third, many progressives (as with everyone else) have family members with SMI diagnoses like “bipolar” or “schizophrenia”, and they see that when these people are coerced to be on drugs, they act in much more normal, understandable ways, and don’t run amok in ways that could get them hurt or jailed. Since they themselves have never been on the “antipsychotics” or “mood stabilizers”, they can’t possibly understand the cognitively and emotionally devastating effects of these drugs. They only see a relative who appears more calm and sane, and think that this is the desirable state for everyone. Therefore they see the intervention as “help”.

    I think there is an element of amnesia in the third rationalization, in that anyone who has witnessed or heard about forceful hospital inventions against a family member must feel the violence involved, but they are just so strongly invested in the apparently positive outcome that they can write those experiences off as the cost of treating an otherwise devastating disease.

    I don’t think progressives have their attitudes out of disdain. I think they genuinely believe that the mental health system is beneficial and that they or their relatives are being saved.

    And not all progressives think this way either. There are some who do “get” the point of view of psychiatry as being dehumanizing or inadequate in addressing people’s problems, but the conversation is often controlled by other voices. If you talk to people privately, they may feel, for example, that the hospital has treated their relative terribly, or know that their relative stops taking the drugs because they make them feel awful, but this is not something there is room to discuss in the mainstream conversation.

  • I’m going through hell right now with Haldol. I have akathisia and the shakes, plus very small appetite, sexual dysfunction, etc. I want to taper off rapidly, but I don’t want to be cross-tapered. My life is sheer torture right now, with no ability to function.

    Are you telling me that it’s possible to be rapidly tapered and be all right afterwards? Should I go to a hospital? Around here, the hospitals have different inpatient doctors than your outpatient doctor, so I would end up with someone who didn’t understand the direness of my situation and would probably only put me back on Seroquel, which I hate.

    I’m considering a rapid taper at home, as the side effects are so profound and disabling. The good of this drug is physical: my body can regulate itself, temperature-wise, and I feel strong, physically. I don’t want to be on anything else, though, and it’s easy to get committed around here.

    The only reason I can type this is that I skipped my afternoon dose. I’m on 15 mg Haldol, 5-5-5. I skipped one of the 5s. And I can function enough to type this. I want to go from 15 to 10 today, and then from 10 to 5 after a few days.

    Thanks,
    Sara

  • What I want to know at this point is: What was actually happening with Freya Milne? Why was she so worried? Why was she having suicidal thoughts? There is very little in all this press about her actual life. I did discover, from the Internet, that she was in the “Challenge” (gifted) program at school and had just been expelled because she didn’t feel she could complete a social studies essay in the required way. She was asking for an academic accommodation that the school was unwilling to give. Apparently, her identity rested on being in this program. I also read that the problems started when she was 10. So we have a kid with an entrenched difficulty, not someone who was overlooked and fell through the cracks, but beyond that there are no REASONS out there.

  • How awful. Most people assume that out of all of Canada, the West Coast would be the most progressive place in general – at least it has that reputation. If BC is so gripped by the far right-wing of biological psychiatry, is there hope anywhere in this country? Not just for children, but for adults, too.

    Rob, I would be interested to know if there is a region of Canada that has higher recovery rates and lower medication uses, with more non-drug and tapering services available. Is there anywhere that has a humane and successful system?

    I live in Manitoba, and here it is very much all “You have a brain disease” propaganda. Really no alternatives. Lots of psychiatric patients who live but don’t really function well or thrive. And no accountability for the system that keeps them like that. In fact, the same message – get more people into “treatment”, “Treatment helps”, more “brain disease”-based mental health “awareness” is needed. Sadly, I’m in the same boat. Stuck on an antipsychotic for years, still depressed, fattened from the drug, subject to involuntary hospitalization if I have troubles again, no clear way out of all this. Yet the public tends to believe the system works.

    I’ve even thought about moving to BC, hoping there would be more alternatives and non-drug help available, but your article has made me doubt that. Sometimes I think I’d move anywhere in the world that would have me, if I could get help that actually helped. But practically speaking, leaving Canada is not a very strong option.

    It would be nice to see some reporting about places with systems that worked, other than open Dialogue. Even just places where doctors only put people on psych drugs temporarily, and believe in tapering them off. Or places with a high concentration of affordable, effective therapists. It would be nice if there was some database of “doctors’ attitude towards psychiatric drugs” in different parts of Canada and the world, so people could decide where to live based on where they were most likely to meet a doctor with a non-biological-reductionist perspective. By the time you get stuck on psych drugs for years, you need some serious help, not just getting off the drugs, but also recovering from your initial distress and all the added distress from hospitalizations and drug effects. Sadly, psychological understandings are so limited after someone is declared “mentally ill”.

    -S

  • The same thing happened to me. The first few times I was hospitalized against my will, I fought back, and as a result was taken down on multiple occasions. Like you, my fight-or-flight response kicked in. I remember thrashing and squirming as four or five male orderlies tried to hold me down to give me an injection. I remember kicking a nurse into a corner of a room, my fight-or-flight made me so strong. I remember once having 4 police officers hold me down so someone could give me a blood test against my will!

    Eventually I learned that the only way to avoid more violence on their part is to not fight, to completely surrender. One time, I was led onto a ward at night and given a pile of pills to swallow. I swallowed them like a good patient, hoping they would not escalate, now knowing how things work. But because I wandered around the ward a bit after I’d taken the pills, the nurses took me and led me down the hall for an injection anyways. I remember how terrified I was. They brought me into a dark room and bent me over a bed. I knew it would be worse if I fought. So I said, “Be gentle” as they pulled my pants down. Like, “Please rape/stab me carefully.”

    Once the system did break me by confining and drugging me up enough, making me scared of their power to destroy me even more, it took years to undo the brainwashing. Now, I understand how institutions of social control function in society, and that to stay safe from psychiatric coercion, you have to avoid getting caught up in the net of authoritarian attention and behavioural sanctions. Like you, I was naive before, thinking they would be more rational than they were. It was quite an awakening. A horrible one – to realize how brutal these institutions and the people in it can be.

    That same brutalizing, authoritarian tendency probably underlies Western genocide, too. And people think it’s gone from our society because of, say, the amount of Holocaust awareness we have. But it’s alive and well… as many psych survivors know from personal experience.

  • I think there’s a tragic assumption being made here. This assumption is that by talking rationally about our experiences and trying to explain our position to people in the system and find common ground, that real progress is possible. I think the people in the system have already proved that they’re “anti-us”. They will never settle for a reality where “medication” is something people reject, “mental illness” is not believed to be a biological defect, and “recovery” isn’t on their terms. They will always be the bearers of the prognosis and standards for what “counts” as “mentally ill” and “in recovery”.

    The fact that you and your colleagues, Sean, have to turn off the emotional aspect of your communication is a red flag. Already, these people aren’t interested in relationships between humans, but on a performance of competence, on their own terms. They want us to “prove” that we are “legitimate” in order to participate in a game that they are running. The real conversation isn’t something they’re prepared to have, or even remotely understand. Because the REAL conversation is between human beings, is ABOUT the very abuses that they continue to blindly perpetuate. But they don’t want that conversation, because they don’t want to be touched by our emotions, because they consider our emotions invalid or irrelevant. They are authoritarians.

    They have abused us, and continue to do so. I think they have proven through this abuse that they are the wrong people for the job of helping us, regardless of their good intentions. People can genuinely believe they’re helping someone else while doing something atrocious to them.

    I believe our energies are better spent building alternative social support networks among like-minded allies who value free emotional communication, deep listening, and empathy. Not authoritarian professionals. Their job isn’t really to help us, IMHO — they only think that’s what they’re doing, and have successfully convinced themselves and much of society that they are in fact carrying out this mission. When the reverse is true: they’re oppressing us.

    This probably sounds very black and white, but consider that the abuses inflicted upon us are also very real, very specific, and justified emphatically and without subtlety by those in the system. I believe they’ve long since lost the right for us to give them the benefit of the doubt.

  • ====
    From all you explain, in your comments, on this page, it’s clear you *extracted* yourself from that situation, so you’re *not* meaning to say that you now have violent tendencies and are permanently dysfunctional, yet it almost seems you’re saying that, in your last line, because of the way it’s worded…
    ====

    Jonah, what I meant was that there was a time, a period of a few years where it looked like I was headed down that path permanently.

    Extracting myself from it was not as simple as having insight that psychiatric diagnosis and treatment was bogus.

    I never agreed with being labeled or drugged. For the first 4-5 years of my diagnosis, I was put in the hospital against my will every 1-2 years, and would promptly stop taking drugs and get back to my life when I got out. I thought it was horrible and abusive what happened to me. I managed to live my life most of the time, more than in the years that followed.

    In 2006, a doctor kept me in the hospital for so long and drugged me so heavily that he broke me. It was only at that point that I started truly believing I was ‘mentally ill’.

    But being broken in that way was profoundly damaging, and coupled with the heavy drugs I was on and the experience of ending up on social assistance, it was almost too much for me. I regressed to the point where I had few friends, no interests, didn’t work or volunteer or anything. During that time I started feeling like I was doomed to not have a life at all. I was on the path to lifelong dysfunction.

    Getting free of all that meant having a series of insights, not so much about psychiatry (which I’d always thought was garbage, before they broke me), but about myself, my feelings, my behaviour. And also, I had a good environment, with a supportive partner who, while he had gone to a judge a few times when things were really out there with me, was not quick to do such things, and had the respect and patience for me to sit and listen and encourage me in life even when I was lowering the drugs. If I hadn’t been in such a supportive atmosphere, combined with the insights I reached that allowed me to prove to people that I could stay out of the hospital, I could still be a zombie. So it wasn’t just saying ‘no’ to psychiatry (I had trying doing that over and over for years and ending up in psych wards involuntarily), but also proving that I was capable of controlling my own behaviour.

    It helped to start seeing what was happening to me as a form of punishment for breaking unwritten social rules, and that the way out of being tortured by drugs was to prove I could behave properly with less of them. A pretty degrading situation, but nonetheless where I found myself.

    Unfortunately, a lot of people are never given the “dignity of risk” to choose to lower drugs and prove they can follow social norms. I could never phrase it as “coming off meds”, it always had to be “lowering” them to be more functional. I’m not entirely off them yet (down to 100 mg Seroquel and no other drugs), but they are well below the lobotomy threshold.

  • Perhaps “joyful” isn’t quite the word to describe my first few experiences of what got called “psychosis”. They were attempts at spiritual journeys, at solving difficult emotional problems through a metaphorical quest. Probably an avoidance of pain and grieving, hoping to magically solve problems instead of descending into dark feelings. But nonetheless, they had a purity that none of my later “episodes” had, and I think that was largely due to the traumatizing experiences in the mental health system. I was by that time behaving much more like they expected for my diagnosis, more self-destructive. It didn’t help that the drugs were making me feel awful. Far from curbing violent tendencies, the whole situation was setting me up to become permanently dysfunctional.

  • Thank you for bringing up the subjective experience of neuroleptic torture, Jonah. I, too, have felt this awful experience Bentall describes, as if being completely shut down but completely in despair, and it is a waking torture. It is the most awful feeling in the world. You’re right, no one describes akathisia properly. They don’t get it at all.

    Having Patch Adams cuddle (and presumably talk with me) for 10 hours to give me love and care would be far, far better than any drug torture. The first time I was hospitalized, I was very open and emotionally vulnerable, and if anyone had come along and really gotten through to me with hugs and conversation, my tears would have flowed and I could have had a transformative experience. Instead, I was tricked into a little observation room, where I was locked in like an animal.

    When I asked to leave, they didn’t let me. So I became more and more worked up. This led to them forcing drugs on me. When I wouldn’t take the pills, they held me down and gave me a needle. It was terrifying. Their logic was that I was “manic” and “psychotic”. Such violations are carried out under the guise of “calming” and “stabilizing”, even “treating”.

    When you’ve been through them two, three, four or more times, you become severely traumatized. Then you start to lash out sometimes, during your breakdowns. My first few “psychotic” experiences were quite joyful. After that I started getting angry when I broke down. I even started talking about suicide where I hadn’t before. The existing emotional problems were compounded by the trauma of having been repeatedly violated by the system.

    I don’t believe violence arises in a vacuum. The sensitive, vulnerable human being is hurt, is broken, and sometimes the result is lashing out. But responding to this with even more violence – what does it do to help the situation? You end up creating an even more angry, violent psychiatric patient, who takes it out on themselves if not others. I think this, combined with the effects of neuroleptics and other drugs, causes some people to commit suicide. Others somehow manage to stay “stabilized” by being on such high doses of drugs that they stay permanently numbed and docile.

  • “None of these issues was the focus of my Times Dialogue, which simply asserted that a psychiatric diagnosis is not, in itself, “stigmatizing” or dehumanizing; and that, when carefully and respectfully carried out, diagnosis may lead to appropriate treatment and relief of the very substantial suffering often accompanying serious mental illness.”

    This statement assumes that an outside observer can really understand someone else’s internal experience. Human beings are deep. It is belittling to have someone who only observes your behaviour from the outside to go and conclude that you are deficient in, say, mood regulation.

    I found it extremely insulting to be diagnosed with bipolar disorder. It did not help me understand why I was having the problems I had. All it did was tell me I had “moods” that were beyond my control, that could only be “fixed” with drugs. But really, the apparent “moods” were just the surface of much deeper issues.

    For a few years, I subscribed to the medical model, and in those years, I took less responsibility for myself, lost dignity in my own eyes and others, and took on the role of permanent mental patient. I tried all the major so-called mood stabilizers and read workbooks which didn’t really explain or help me at all. In those years, I was hospitalized MORE times than before I had “insight”, and I didn’t work or go to school, had trouble thinking and feeling, and lost touch with a lot of friends.

    Now, as I become stronger and live a life as a real person, not a “bipolar” person, the only way the label is useful is when I remind myself to not act in ways that make people describe me that way. I find the diagnosis profoundly insulting. I would never, ever, ever want to be called “bipolar” or to be seen as “suffering from bipolar disorder”. To me, the label makes people make unacceptable assumptions. It compromises one’s identity.

    If, instead, someone had recognized that I had a problem transitioning from my childhood coping methods to the adult world, we would have made progress a lot sooner. I think that my upbringing and the perfectionism, fragility, dependence and fearfulness I developed were largely responsible for those difficult years struggling to grow into an independent life. I relate to Ty Colbert’s article, NAMI parent’s false hope, http://beyondmeds.com/2009/04/26/nami-parents-false-hope/, because I see aspects of myself in those children.

    Psychiatric diagnosis never grasped the real nature of my suffering, and simply added to the burden of already feeling inferior and defective.

    The “treatment” that followed the diagnosis was based on a purely mechanical model, that if we found the “right medications” I would magically be “stable” and everything would be fine. That model never panned out in practice. It only meant being drugged into an oblivious stupor and released, on multiple occasions, because of course “bipolar disorder” is “biological” and requires “medication” and “stabilization”, not love and empathy and understanding.

    “Mania” is not something that happens because of life circumstances and coping, no, it’s just a malfunction, and it’s okay to drug someone into oblivion because we need to bring them down. I even had a nurse say that they hoped people would forget being injected in the hospital.

    When someone has “bipolar depression”, the answer is to just stick them on antidepressants, not consider that the heavy “mood stabilizers” or “antipsychotics” are adding to the dysphoria.

    Eventually I started regressing from all the trauma. I didn’t go into the system suicidal, but I started thinking about it after a few years. There just seemed no way out. I had lost all my dignity and passion in life. I lived in a hopeless, drugged fog.

    Diagnosis had everything to do with my poor outcome. If “bipolar” hadn’t been slapped on me in the first place, if my breakdowns were seen as continuous with my life experience, if I’d had a counselor who could help me make some of the insights I’ve struggled to make on my own and gain responsibility for my life, I could have saved a good 8 years. Instead I almost ended up like those NAMI kids in Colbert’s article.

  • There is the same assumption here as always: ‘mentally ill’ people need their ‘medication’, no matter what they actually think. There is such an overwhelming, arrogant assumption that ‘medication’ is necessary and beneficial that there is no room for any other voices. No recognition that ‘mental illness’ labels are descriptive, not real diseases. No attempt to even understand patients’ points of view. No knowledge of the numbing, crushing effects of drugs such as neuroleptics, either. Torture dressed up as medicine, with the authors of the torture presenting themselves as enlightened helpers.

  • That is 3 weeks minimum, I would say. At the beginning there were a few changes that were a week or two apart, but once I reached the point where life was bearable again (less neuroleptic dysphoria), I’ve found that 3 weeks tends to be the minimum time I will allow between reductions.

  • Based on my experience, the taper you described is too abrupt, even if it is spaced out every few months.

    I myself have been tapering from Seroquel, and I find that even a decrease of 5% or so is enough to cause between 2 and 6 days of withdrawal symptoms. Usually there are at least 3 days of sleep problems which require an over-the-counter sleep aid, and at the higher doses, the dopamine effects of withdrawal were more apparent for a few days, to the point where I felt more emotional, more mentally alive and “on”, and then had a bit of a seesaw effect after that wore off.

    I think it would have been disaster to reduce the Seroquel by 25% at once. I started off on 300 mg, and have had to proceed downwards by 12.5 mg per decrease (the pharmacy cuts my 25 mg pills in half), every 3 weeks, so that I am now down to 200 mg. 212.5 mg -> 200 mg, I felt no dopamine effects whatsoever, and I believe at that dosage it stops hitting the dopamine receptors and starts working on something else (adrenergic or serotonin, maybe – I don’t know how to read the pharmacological data). It would have been an utter disaster decreasing from 300 mg to 225 all at once. My first decrease was from 300 to 275, and that caused enough change to frighten me and slow down the taper.

    I would suggest you strongly consider smaller but more frequent (every 2-4 week) decreases for those patients who aren’t able to tolerate your current taper process, and an anti-histamine or similar sleep aid if there are transient sleep problems. I also suggest you study the pharmacological information that gives an idea about which neurotransmitters will be affected at various doses, to get some sense of specific types of withdrawal symptoms with various drugs.

    I have been able to hold down a job and maintain my life, and have not been in the hospital in almost 2 years, well before I started the taper, when I was being “maintained” on higher doses and had a far worse quality of life. I discovered that below a certain dosage, Seroquel stopped making me feel dysphoric and so mentally clouded and bound up and apathetic, but if I had reduced too quickly (as in the past, because I was so miserable), it could have spelled trouble and hospitalization as the withdrawal would have been too extreme.

  • For me it depended on how long I was on the drugs.

    If I was only on them for a few weeks (forced in the hospital), I could go cold turkey and be all right. I did that a bunch of times and was fine for years at a time.

    But once I started being forced onto them for longer periods of time (2+ months), I couldn’t come off like that – terrible panic, sleep problems, and more, to the point where I thought I was going to die. Also, I was suffering the effects of trauma from violent hospitalizations.

    As they say, the longer you’ve been on them, the more your body has adapted and the harder it is to stop them. Mix that in with the trauma of what’s happened to you, and it’s a difficult situation.

    Now, after being forced to stay on them for 5-6 years, I’ve been slowly tapering because I do definitely get withdrawal symptoms, even from that. It usually takes around a week for the withdrawal symptoms to abate (e.g. for my sleep to return to normal), and I am left feeling more functional due to the lower dosage, and then I wait another 2 or more weeks to make sure I feel solid going into the next reduction.

    Plus, if you’ve been drugged for a very long time, you’re not used to dealing with your own strong emotions. So I think it’s good to go slowly enough that you can get comfortable with the “real you” bit by bit. In my case I’ve also been able to deal more with being traumatized, too, and basic issues like self-esteem and identity.

    When I tried to cold turkey the past few years, I was thrown into a state of chaos. So others around me said I was “sick” again, basically.

    This may be different for others, and also based on what type of drugs they’re taking.

    Benzo – within a week or two I had terrible anxiety, that lasted 1-2 weeks then went away. And this is with clonazepam decreases of 1/4 of a 0.5 mg pill.

    Seroquel – feeling more emotional (to the point of being overwrought), insomnia, faster thoughts, dilated pupils and tachycardia (120 beats/min). Usually have to take OTC sleep aid for a few days. And this is with decreases of only 12.5 mg.

    -S