A few years ago, when I decided to try and get off psych drugs (I have since been forced by AOT order back onto them), I didn’t decide to get off psych drugs in a rush or without thinking about it very carefully. There were a couple of very important factors that went into my decision.
To tell the whole story of how I first got off psych drugs would take a small book unto itself, so I’ll just sum up the key points. When I first went off Zyprexa and onto Saphris, there was such a dramatic change in how I felt and was behaving that I couldn’t help but notice that there was a real difference between the effects of one drug and another. Now, I still credited these so-called “antipsychotics” with keeping me sane, but I was inclined to attribute the difference in how I felt merely to the differences between one drug and another, thinking that one was merely an improvement over the other. In retrospect, this would seem sort of self-apparent, but you have to remember that I’d been drugged and suffering from Neuroleptic-Induced Deficit Syndrome for about eight years, and it took a while for my brain to start working again the way it had before, and then for my actual working intellect to come back, and then for me to start learning about the world again, and so I’ll have to ask you to excuse me for having been so slow about it all. And then a young woman from England, Dr. Eleanor Longden, published her book called Learning From the Voices in My Head, and it was after I read that book that I really began to think about it all.
To cut to the chase, Dr. Longden herself was a voicehearer who wasn’t on any drugs. She wasn’t a schizophrenic, and she didn’t even believe that schizophrenia was a real thing. She criticized the drug companies relentlessly, in a way that I’d never seen in print before, or even heard about from anyone I knew. At that time I was still a completely unquestioning victim of Big Pharma’s marketing practices and biological psychiatry’s continuing dissemination of the long-disproven “chemical imbalance” myth, so I had no idea at all that the zombie-like state I’d been in all those years was not actually relieved by the drug called Saphris (I thought the drug was fixing my so-called “negative symptoms”) but had been actually caused (or so I believe now) by the drug called Zyprexa, and that it wasn’t so much the fact that I went onto Saphris that helped me (or so I believe) as that I simply went off Zyprexa. It was basically a case of relativity, if you want to think about it that way. Is the world moving past me? Or am I starting to walk? In other words, is the problem being solved by one drug? Or is it being caused by another?
I have since (and even before then) been on enough different drugs to know that it must have been something very like that, since no other drug affects me in such a way as to cause a state like the one I was in all those years when I was taking Zyprexa. This was not immediately obvious after I got off it, however. After all, it’s not the easiest thing in the world to figure out that it’s the drug that’s doing this to you, and especially not if you’ve been told all this time that so-called “negative symptoms” are doing it to you. It also doesn’t help if you’ve also been mentally impaired for the last eight years, unable to think for yourself. Since that time, however, I’ve seen more than one other person do the same sort of thing that I did, and they’ve had pretty much the same results I had.
So it took me quite a while to get my head around all of this — the better part of two years, in fact.
That was when a slow burn started inside me about the drugs. I had started to read a lot more about psychiatry, and about drugs, and about all the other things that are involved with psychosis and schizophrenia and voicehearing. Sometimes I was reading giant books that no one else seemed to be reading, and I was coming to the conclusion that none of these people — not the psychiatrists, and certainly not the drug companies — really knew what they were talking about, or if they did know what they were talking about, they were either actively concealing or deliberately ignoring any information that wasn’t convenient for their position (which was in favor of drug use and drug sales, after all). And it started to wake me up to the fact that it didn’t have to be like this at all, because there seemed to be other people, outside their system, who were actually successful in dealing with it all without any drugs.
Without going into all the details of it, let’s just say that I decided to take a chance, just as I’d taken a chance with getting off Zyprexa and onto Saphris. I decided that maybe, just maybe, Dr. Longden and all these other people whose work I was reading were right.
I decided to gamble with my life and see what would happen.
Around the same time, I developed a serious case of high blood sugar. I don’t call it “Type 2 Diabetes” because I don’t really believe in Type 2 Diabetes as a disease — that is, as a permanent condition that you have to live with for rest of your life — or that it is nearly as widespread as the diabetes-treating industry makes it out to be, at least not if you catch it early enough and do the right things to deal with it. Real diabetes — what they call “Type 1 Diabetes” — is a real disorder, one where you are usually born without beta cells and your pancreas doesn’t produce insulin, which is what helps your body use the sugar in your blood that comes mostly from eating carbohydrates like bread or spaghetti or rice or bananas. My problem with the idea of “Type 2 Diabetes” isn’t based on the idea that it isn’t a real problem, because it is a real problem. It’s that the whole diabetes-treating industry treats it as a disease, which most of the time it isn’t. Most of the time, it’s just high blood sugar, and it can usually be dealt with very effectively if you are sufficiently motivated and you have the right information. I have more than dealt with my own severe case of high blood sugar myself, and I have done it so effectively that I have had diabetes professionals ask me to me sit down and tell them and their colleagues how I did it. So I take it all very seriously, and my problem is not with recognizing and dealing with it all. My problem is with the idea of encouraging people to take a passive approach to it all, to treat it all as though it were some sort of inescapable “disease” that you just have to live with and “manage” rather than just eliminating it, and therefore to end up not solving the problem at all.
I have what amounts to a motto, which is that any time an epidemic seems to be taking over a country — weight gain and diabetes, for instance, or “depression” — then you can rest assured that the professionals who are supposed to be dealing with it have no idea what they’re doing. The mere fact that the epidemic is exploding, and that the professional interests and a very profitable industry that is supposed to be “expert” in dealing with that problem is exploding at the same time, even while not succeeding in actually dealing with the problem at all, tells you immediately that they either don’t know what they’re doing or that they’re deliberately not telling people how to really deal with it. You might, in fact, want to do the very opposite of what they’re telling you to do. That’s what I did, for the most part, and my so-called “diabetes” went away in less than two months, and I had had an average blood sugar reading of higher than 300 every day — an a1c of higher than 10. I had had very high blood sugar, yet I got rid of it completely. High blood sugar, in and of itself, is not a disease. It’s a problem, yes, but it’s usually a very solvable problem, and hearing people talk about it all the time as always being some sort of permanent, inescapable disease is something that I find to be not only misleading but annoying. It’s a way to get people to “manage” their problem with drugs — at considerable expense to you or your insurer, and with considerable profit for those who sell you those drugs — rather than learning to eat the right way and to exercise enough to restore you to good functioning, if that’s still possible. That’s what I think of it all.
And I look at “mental illness” pretty much the same way.
As part of getting rid of my high blood sugar, I began to exercise (walking, elliptical machines) and to work out (machines, free weights) quite a bit. I built it all up slowly, so that I didn’t get sick of it all or burn out, and after a while I was exercising a couple hours a day. After a while, it became almost the core of my sense of self. I was turning myself into an athlete, which was pretty remarkable for someone like me, who had gained 100 pounds within two years of going on psych drugs and who had sat around in a fog for almost ten years, never getting up off the couch. But the point of the story is this: Sometimes, as I was working out at the gym, I would see people who were working out with their trainers. And after a while I discovered that some of them were part of a program, run by the local “community mental health center,” that was meant to combat weight gain — weight gain that I, of course, happened to know was caused by the drugs that these people were forced to be on, both from my own personal experience and from my own reading. I had gone from 150 pounds to 250 pounds in less than two years while on Zyprexa, yet I had reduced my weight in 5 months from 250 pounds to less than 185 pounds again, so I knew what these people were dealing with and how to fix it.
At that point I had come to think of the “mental health system” as the “ever-expanding mental health system”: as a sort of monster that was always consuming more resources, that was always finding a way to expand itself and drag ever more money out of everyone. It included everyone from all the thousands of the employees of the drug companies down to the psychiatrists who pushed all the drugs down to the administrators who filled out all the forms that got all the funding to pay for the drugs. And this giant financial monster consumes a huge river of money, even though people are always complaining that there isn’t any funding for the “mental health” system or that the system doesn’t have any resources. In fact, it’s just the opposite. Drug someone (that’s one job) so you can hire an administrator to fill out forms (that’s another job) to get the funding from the government (that’s another job) so you can hire a trainer (that’s another job) who was recommended by the counselor (that’s another job) to fix the problems caused by the drug (I can’t even count all the jobs there) that you started with. It’s a river of money, even if no one seems to realize it, and the whole “mental health system” it supports is absolutely preposterous in size.
I was starting to get really disgusted with the whole thing. It wasn’t just that the system existed; it was that it was totally ineffective, if not blatantly harmful. All those years I had been on Zyprexa were lost to me, and I would never get them back. And as I looked around the gym, at all those people struggling to get their lives back, I began to burn with a kind of hatred for the whole “mental health system” that was almost unquenchable.
I remember one day when I was at the gym and I was walking with my mother on the running track (we often walked together, which I wanted to do because it was good for both of us, especially at my mother’s age) and I remember how on that day I began to watch a man who was walking just ahead of us. He was plodding along slowly, his head down, his body too heavy for his frame, and after a moment I recognized what I was looking at: Here was another schizophrenic, just like I had been — too drugged up to do anything more than plod along, his face expressionless, completely enclosed in the living shroud, the living grave, the solitary cell, that I too had been lost in for so long.
As we came up behind him — we were walking more quickly than he was — my mother asked me, “What is that smell?”
Then I caught a whiff of it too. I could recognize what it was: The smell of a body that hasn’t been washed in weeks, and the smell of unwashed clothes. It was exactly the same smell that had probably come from me not too long before, lacking only the additional odor of cigarettes.
My mother covered her nose and swerved around the man as we passed him on the walking track. As we passed him, I could see the blank expression on his face — the same blank expression that being on antipsychotics gives you.
“My God,” she said. “Did you smell him?”
I nodded. “He’s a schizophrenic,” I said.
“What?” she asked.
“He’s a schizophrenic,” I said. “You can tell. Once you’ve been drugged like that, and you’ve seen how your own face looks in the mirror, you can spot it right away. Remember how I was for all those years?”
“Mmm,” she said. “I don’t know. Maybe.”
“Come on, Mom,” I said. “I was that guy for a long time. Remember what I was like? When I sat there and didn’t talk to anyone? When I smelled like that all the time? When I never changed my clothes? Remember when I could barely walk down the street?”
“Well, I don’t know,” she said.
But I could tell she was thinking.
What pissed me off most at that point was the drugs. There were so many lies about it all. It wasn’t just that they blatantly threw around this “chemical imbalance” theory, this myth that “mental illness” was all caused by something wrong with my brain chemistry. I mean, that whole story has been disavowed by SAMHSA and the NIMH themselves. The DSM itself has been disavowed by those federal agencies. The whole thing is a fantasy, a lie and a fiction. So what pissed me off at that point was the sheer mendacity of it all, and one of the things that pissed me off the most was the whole thing about “side effects.” I know that might sound kind of obscure, but it’s pretty central to this whole discussion.
The first definition that you find on the web right now is this one, from Merriam-Webster:
Definition of side effect
1. : a secondary and usually adverse effect (as of a drug) • toxic side effects — called also side reaction
The problem with this definition may be hard to detect at first glance, because it does, after all, mention that the effect is “usually adverse.” I don’t have a problem with that at all. What I have a problem with is the use of the word “secondary.” There is no such thing, after all, as a “secondary” effect of a drug. There are only the effects of the drugs — just plain old simple effects. There is nothing “secondary” about any effect of a drug — unless, of course, you want people to think that they are somehow “secondary,” that they are somehow — what? Less important, somehow? That they really aren’t to be worried about, because they’re “secondary”? What does “secondary” even mean? And it’s the way the whole phrase — “side effect” — misleads people about what is happening to them when one of these so-called “side effects” takes hold. If you’ve been through what I’ve been through, shuffling through life in a drug-induced haze for eight years — well, you don’t want to hear about “side effects” anymore, or anything about how they’re “secondary.” You want to hear about the real fucking effects, motherfuckers, plain and simple. Don’t give me any of this bullshit about it being “secondary,” or that it’s on the side somewhere. Fuck you. Tell me the fucking effects.
If I seem to be making a big deal about all of this — I mean, the way they use the term “side effect” is probably one of those minor details of life that you might be able to afford to simply take for granted, and that you also don’t have any special reason to worry about, if you’re lucky — then consider for a moment what the smoking industry did with the warning label on packages of cigarettes.
A few years ago, I wrote a book called Smoking (the practices of Big Tobacco can teach people a lot about the practices of Big Pharma). One thing that I don’t think I ever mentioned in that book, since I was covering a lot of ground and it just never occurred to me to include it at the time (though it seems pretty important to me now), was how the cigarette industry dealt with the warning label that so many members of the public, and even some members of Congress, eventually demanded. When the cigarette industry finally capitulated to putting a warning label about the health dangers of cigarettes on their packages, they were very careful and very strategic about what they agreed to print on the packages. Now, if there’s one thing you need to know about the cigarette industry, it’s that every time they go to court, or have to deal with a legal ruling against them, or even have Congress enact legislation against them or they are being forced to submit to some new federal regulation, they almost always manage to turn the new ruling or legislation or regulation into a way to further their own interests. And what they did with the warning label was to make sure that all it said was that cigarettes “may” be damaging to your health. Not that half of all smokers die of a smoking-related illness. But that cigarettes simply “may” be harmful.
In a single stroke, the cigarette industry not only gained itself liability protection (since they’d warned people about the health effects of cigarettes, they could no longer be sued by people who started smoking after that, potentially saving the cigarette industry trillions of dollars in damages) but they also succeeding in making sure that almost no one would take the warning label seriously. After all, a picture of someone’s blackened, cancerous lung might make someone pay attention, but a warning that only said that something “may” damage your health — the kind of warning we ended up with — was something that most people barely glanced at.
It’s the exact same thing with the idea that an effect of a drug is “secondary.” It’s the exact same thing with “side effects.” There is no such thing as a side effect. There are only the real effects — plain and simple — and no matter how someone may want to spin it and make you think it’s not that important and that it’s not worth taking some time to think about, those “side effects” may take your whole life away. And just thinking about what those “side effects” have done to my life is enough to make me so angry that I can barely contain myself.
The average schizophrenic dies 30 years younger than other people. A small percentage of that is due to suicide — about 10%. Another relatively small percentage, significant but not overwhelming, is due to smoking (half of all smokers do die due to a smoking-related illness, but it doesn’t even begin to account for losing the whole 30 years that the average schizophrenic loses). But what the psychiatric establishment talks about all the time is, nevertheless, just smoking and suicide. But most of those years of lost life — let me assure you — is due to the side effects of their drugs. It comes from the lethargy. It comes from the weight gain. It comes from the high blood pressure and the high blood sugar, which are due to the weight gain. And it comes from never wanting to get up and exercise, because you’re so tired all the time that you really just don’t care about anything anymore. You usually die of the effects of weight gain and lack of exercise, and that means that you’re dying from the effects of the drugs.
The psychiatric and pharmaceutical establishment long ago started blaming the early death of schizophrenics on smoking and “lifestyle issues” (i.e., not exercising), which is all a convenient way of avoiding the issue of side effects. But when you’re so numbed out and paralyzed by the drugs you’re taking that you can’t exercise — which is the condition I was in — that’s not a “lifestyle issue,” that’s a drug issue, and to say anything else is only mendacity. It’s just complete fucking bullshit, any way you want to look at it — at least if you’re willing to be honest.
If there is one thing I have noticed in the past couple years that is true of just about every psychiatric document I have ever seen, it is that all the genuinely important information in that document is always put last. The first 90% of any psychiatric document has usually been reduced to nothing but a distraction, to nothing but utter bullshit — to what they want you to be paying attention to, and it’s all written and arranged in a way that will encourage you to think about it all the way that they want you to — while all the really important information is usually contained in the very last line or in the very last paragraph of the document. If it’s a document about your rights as a “patient,” for instance, the information that really matters is almost always right down at the bottom: just whom to call if you feel your rights have been violated and what their contact information is; everything else in the document is a bunch of spin that distorts and misrepresents what your rights actually are. It’s like they want to bore you to death or have you so numbed out by what you’ve just been reading that you’ll stop paying attention before you get to the information that actually matters so you’ll miss how important that information really is.
And the relevance of this observation is this: When you look at just about any list of what the psychiatric establishment describes as the causes of death for the average schizophrenic — since they are supposedly responsible for the “health” of their “patients,” after all — both smoking and “lifestyle issues” are almost always right there at the top, while drug “side effects” are almost always right down there at the bottom. It’s a tell that’s so clear that I’m surprised more people haven’t noticed it, that more people aren’t screaming about it.
There is no such thing as a side effect. There are only effects, real effects, and anyone who tells you different is either ignorant or someone who probably makes part of their income from being involved in the sale of drugs. It’s really that simple.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
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