I have been diagnosed with schizophrenia for nearly forty years and was forcibly medicated and involuntarily hospitalized many times over those decades. Ordering me to take an “anti-psychotic” medication and then physically compelling me to submit to IM injections never got me to a point where I saw the “error of my ways” much less helped me to recover. How can that be? Take my 3-week stay at Yale New Haven Psychiatric Hospital in the summer of 2013. Because I refused the prescribed Zyprexa, I was repeatedly held down and forcibly injected with IM Haldol, a so-called first-generation “anti-psychotic.” Call Haldol an antipsychotic if you will or be honest and just call it a behavioral management drug, it subdued me, yes, it did indeed. It stupefied me. And in the end I cried “Uncle.” But before I surrendered and submitted to their demands, I only got worse, regressing to a degree so pathetic I find it hard to believe it now. But that this happened was a connection the doctors and staff never made,, not even when after I was forcibly injected, I would strip, defecate and write on the wall with my feces.
It seems obvious, at least from my experiences, long and manifold, that involuntary treatment does not work, at least not the way people think it will or should. Over the short run, you can indeed make a person take medication (which is what this is all about in the end, drugs, not something like psychotherapy being forced on anyone…). You can threaten a person with hospitalization “or else,” and frighten her into swallowing pills. And if she does refuse, you can hospitalize someone for refusing and medicate her against will just as you do now to certain in-patients.
You can, if coercion is your game, put certain involuntary in-patients into 4-point restraints, pretending that her very resistance makes her a danger to others, punishing her for fighting the team that holds her down. You can even inject her with so-called “depot” drugs that once in the system continue to work for as long as a month.
Clearly, people break, faced with threats and coercion and many eventually come to accept treatment “voluntarily,” at least for a time. They may even appear to “get better”. Nevertheless this sort of improvement is often shaky at best.
Involuntary — forced — treatment is the worst possible thing you can do to a person with a serious psychiatric condition, especially schizophrenia. Symptom improvement will likely be temporary, even with medication “on board.” I have yet to meet anyone who actually gained that magical “insight” via coerced medication… And given the side effects of all the known drugs, very few people who are not voluntarily in the system consent to take them for long — for good reason.
Moreover, as recent research has shown, there is every reason to suspect that psychoactive drugs, especially the so-called antipsychotic drugs, are far less efficacious in promoting real and permanent recovery than we have been told. However, the effects of trauma and the aftermath of involuntary treatment can be disabling, even permanent. I know; I have been there. As a result of my experiences with forced treatment I now suffer from PTSD in addition to the diagnosis of schizophrenia.
Although at present I choose to attend outpatient treatment, I do not always comply with taking medication, especially when it make me feel bad. I won’t even take meds that others claim alleviate my symptoms. If a drug makes me feel horrible inside, I assert the right to refuse it. Sometimes treatment can be worse than the disease. Alas, because of this, I have, while in-patient, all too frequently been subjected to forced medication hearings, hearings which I believe I was pre-determined to lose, the deck being stacked against me.
At the former Hospital of St Raphael’s in New Haven in 2004, I was not only forced to take the atypical antipsychotic drug Zyprexa, despite the fact that the medication had caused me to gain 60 pounds, elevated my cholesterol and triglycerides sky-high, and made me pre-diabetic. The probate judge, on the instigation of my in-patient psychiatrist, also ordered that I undergo involuntary ECT otherwise known as electro-shock treatments. I was so terrified of the side effects and the real brain damage ECT was inflicting on me, that I literally awoke,mornings, with excrement in my underwear.
In the more recent past, my experience at Manchester Memorial Hospital ECHN in Manchester, CT was just as horrendous. This, along with an equally brutal experience, at Middlesex Hospital in Middletown, Connecticut 6 months later combined to such trauma that I was diagnosed with the additional problem of PTSD. As recently as the winter of 2013, at Hartford Hospital’s Institute of Living, I was threatened with forced ECT, kept in seclusion for three weeks and restrained for nearly twenty hours multiple times. Why? Because as the record states, I was unpredictable and “did not follow directions.”
I would like to tell you about the Manchester Hospital experience in a little detail, as I believe it will give you a “taste” of where IOC, when taken to its logical conclusion, can and will lead.
I was admitted there on a 15-day physician’s emergency certificate (PEC), and the attending, a certain Dr Benjamin Zigun, summarily took me off the two-antipsychotic drug combination, plus an anti-seizure medication and the anti-depressant I had come in on. This drug “cocktail” had worked for me since 2007 without distressing side effects. I was not only willing to take it but I felt it helped me function better than I had in years. But the psychiatrist at Manchester Hospital decided, and I quote, “since you are here, by definition your current meds aren’t working. I will put you on something else.” Did it matter to him that I had already been tried on nearly every other drug on the market, old and new, and none worked as well and with as few side effects as the Abilify/Geodon combination I was then taking? No, he was the doctor and the doctor’s decree was law.
As a result of his ministrations, the “offending meds” were removed and I was again ordered to take Zyprexa, despite its known and severe side effects. Over the next few days, I continued to refuse it. Naturally, having been abruptly withdrawn from all my usual medications, I began to decompensate further, having nothing in my system. A forced medication hearing was held. For some reason, Dr Zigun decided I would not be given Zyprexa after all, but one of the oldest neuroleptics in the PDR, Trilafon. When I objected, he said only that if I refused even a single dose, I would be injected in the buttocks with 5mg Haldol.
All too familiar with Trilafon’s side effects — from akathisia’s maddening restlessness to a constant fine tremor in my fingers, I refused to swallow the pills. But neither would I willingly lie down to take a needle full of “vitamin H,” Haldol being a drug just as awful as Trilafon if not worse. So I resisted, physically, when it came to the nursing staff grabbing me and pinning me to the floor. I fought them when they so much as approached me with the punishment hypodermic.
At first, they just overpowered me, injected me and walked away. But after a few such tussles they started calling “a code” to bring in the goon squad. I do not know how many times this happened but the goon squad consisted of several people including uniformed security guards . Without a pause, they would barge into the room, assault, restrain and inject me, despite my terrified screams.
This sort of violent encounter happened so many times, along with predictable and regular use of 4-point restraints and/or solitary confinement, where I would be locked in their dark, cold seclusion room, that I literally lost track of time. Indeed, but for whatever I managed to record in my journal after each episode, and from their single-viewpoint one-sided hospital chart, I would have no idea what happened during most of that entire three week period at Manchester Hospital, though from my bodily reaction when thinking about it, I know something very bad happened.
Why do I tell you this? Because this sort of aggression, even torture is what forced medication and involuntary treatment lead to much more often than you may want to believe.
If H.R. 4302 passes in the Senate and expanded IOC is instituted in the states where it is now allowed, how precisely do people intend to treat a person with a “mental illness” who does not to want treatment? If a person refuses to leave her apartment to be hospitalized, and is able bodied and physically strong, do they propose to assault, even Taser her, though innocent of a crime? Once she is unconscious and no longer able to resist, do they then intend to hospitalize her against her will so that she can be forcibly medicated, with the threat of 4-point restraints as a back-up if she continues to resist. Or perhaps they expect that trauma itself to scare any individual into compliance?
I am not against all psychiatric treatment. I am definitely not against all psychiatric residential treatment facilities ( including hospital psych units…) But we have curtailed the availability of in-patient beds at present to our detriment, even as we have allowed drug company research scientists and providers to focus almost to the point of tunnel vision on the medical model. This has brought us right to this notion that if we institute IOC, and can force a given individual to take medication, we will be working on a problem that has a real and objectively verified solution. In point of fact, however, there is absolutely no proof that antipsychotic drugs lower violence on the streets or have any effect at all on the incidence of violent crime. That said, if a national IOC law mandated forced treatment, and hospitalization, where are the psychiatric beds to follow through on that mandate? Downsized, in most states to ghosts of their former abundance.
If this is what supporters of H.R, 4302 anticipate and believe in: IM injections, four-point restraints and all, then I must ask: When will you learn that you cannot treat anyone with violence and expect the outcome to be a desirable one? What you propose to do is to subject persons with psychiatric disorders to more trauma and violence than ever. You want to expose them to a“treatment” that is just euphemism for brutality.
I fought back, tooth and nail, biting and clawing the goon squads that descended upon me and attacked me, intending to shackle me by the wrists and ankles to a bed, because as they told me, “ I didn’t follow directions. Yes, I resisted. Who would not have? I was terrified. What did they expect me to do, politely thank them?
This sort of coercion and cruelty masquerading as care doesn’t help anyone get better, it only chases them the heck out of Dodge and as far away from “treatment” as they can get. Oddly enough, little do “Escapees” from treatment such as these know that they might be the lucky ones. As longitudinal studies of treated and untreated individuals with schizophrenia are coming to light, it has become apparent –even Thomas Insel, head of the NIMH admitted this on his blog — that treating – medicating — schizophrenia long-term has had unintended consequences, one of which has been to inhibit complete recovery. By contrast, those persons who walked out or were forced out of treatment, “back wards patients,” seemingly hopeless — it turns out that these people to a much greater degree than those who stayed in the system, recovered on their own, without help, largely by stopping their medications.
A majority of these “lost souls” found themselves only after they ceased taking medication and ceased consuming mental health services. Because they became wage-earning, productive citizens and not mental health service users, many are now “lost” to the mental health system. To experience so few symptoms as to be unknown the to provider community despite past illness, surely this must be accounted the best of all possible outcomes.
IOC works — or doesn’t work — according to a medical model that imposes medication on the unwilling, with no end point, insisting that mental illness is no different from diabetes. But as Dr Insel has admitted, this is not true and apparently never was. New models are needed. Violence is no solution, nor does it cure anyone to impose treatments of dubious value and great harm on those who are different from some mythical “norm. ”
(I sent a version of this to Connecticut’s Senator Blumenthal and several other people, including the New York Times, without response, so I am posting it here for public consumption and comment.)