How I got misdiagnosed with schizoaffective disorder when really, I had an eating disorder

When I tell folks I was “misdiagnosed” with a mental disorder, I get all kinds of reactions. For one thing, I believe all psych diagnoses are misdiagnoses, simply because I choose not to call human psychic suffering a disease when there’s no real proof that such disease exists. I do recognize that people suffer tremendously, some markedly more than others.

That said, you might wonder how I fell for all that manic-depressive bipolar psychotic baloney when the shoe didn’t fit. Here’s how it happened:

My original therapists recognized that I had an ED, but since they didn’t know how to treat it, they ignored it. They wanted to treat something they could get a grasp on. My very first therapist saw in me only an eating disorder, but she didn’t know what to do. The next ones told me originally that they didn’t treat ED but they’d take me anyway. I was in a program with other people. We had all sorts of groups where we were supposed to share what was on our minds. I was so scared to tell anyone I had ED. The other patients kept asking. This went on for months until I finally admitted it. At the time, my diagnosis, according to my therapist, named Ron, was as follows:

Eating problem (they called it bulimia, but it wasn’t)
Shyness (not a disorder)
Minor family conflicts (like any other family)

And that was it. Yes, they saw my problems as trivial. Still, Ron himself took me as a person very seriously and I really think he had good intentions. He ended up going into some other career for a while, or said that was his plan when he quit.

The next therapist, Annique, decided to take things into her own hands. Some of this is in my book. She was for sure overinvolved with my situation. For sure, I found this offensive, as did the other patients. She was always taking extra time for me. That bothered me and I wanted her to stop playing favorites. The other patients became resentful. I didn’t blame them! For instance, if we were all contributing to a conversation, then there was silence, she’d always call on me to speak, saying they hadn’t heard from me even though I had indeed spoken up. At first, this was merely annoying, but later, it all got rather serious, since she broke the law and betrayed another patient’s confidentiality in my presence. Again, I found this terribly offensive, never mind unethical. I wasn’t sure what to do. My eating disorder got worse, and also, got shoved aside since this interpersonal bullshit seemed so much more immediate to everyone. But that was all a rather temporary situation. Then, Annique announced to me that she had a cure for my ED.

You’re probably rolling your eyes right now, reading this. A cure? This so-called cure was the most insane solution I’ve ever seen to ED. I knew all along that she wasn’t grasping at straws, she was grasping at nothing, not even straws. This was her idea. She told me I was “allowed” to binge a certain number of times per week and I had to stick to that. It was like a contract. When I spoke to her, she forced me to stand too close to her and stare her in the eyes. I hated that so much.  It was a personal space violation, a power play, and also for sure was part of the overinvolvement.  When I left, I was totally disgusted ,and far worse off.

I moved back to Vermont and went back to my old therapist, but she got laid off. I got assigned to another that was antisemitic and abusive. While I was still seeing him I was desperate to find another person to see, but couldn’t find one. In my book, I didn’t mention the switch in therapists since it would have confused the reader. Instead, I invented a compound character, Megan, who played the role of my old and new therapists together. (I explained that I had a few compound characters in my disclaimer.)

This was very bad therapy. You couldn’t call it therapeutic. It was downright harmful. I was frightened and didn’t know how to rid myself of him. Our sessions consisted of the following: I’d show up, sit down, and he would light up one cigarette after another and proceed to bash me and bash my assumed upbringing and my cultural background. He never asked. He assumed, then threw one insult at me after another. I was scared to stop therapy because at the day treatment center they had all of us convinced we couldn’t live without it. I thought the only way I could leave this guy was if I found another therapist.

That was when, as response to his abuse, I did some cutting. I’d never done it before and it isn’t something I really did. It didn’t give me a rush nor make me high. It was a reflection of powerlessness I suppose, yet doing all that didn’t give me the power I needed. My ED was getting worse and I was so desperate I didn’t know what to do. One day, he announced that I “didn’t need therapy” and that therapy was making me worse. Well, duh, what I thought was that his  therapy was making me worse. I believed there might be a decent one out there, if only I could find one.  I was working at the time, but my job ended a month before I expected it to.

So suddenly I was job seeking, collecting unemployment, and therapist seeking. I wanted to go on medication for binge eating. I’d heard about new research done by Harvard doctors. I had pointed out the research to my first therapist but she said the psychiatrist hadn’t heard of the research. Looking back, I think they thought I was looking for addictive sedatives to get high on or sell, but I am not sure.

Nothing was working and my eating disorder was only worse. Finally, my roommate suggested I go to the hospital. She said maybe I could find a new therapist and psychiatrist via the hospital. She told me it was a sure bet I could get drugs that way. All I wanted was to be able to eat normally.

They did, in fact, admit me. I was such a wreck from that therapist. I can’t say that my screwed up relationship with my roommate didn’t also cause a lot of stress. I stayed five weeks the first time. Back then, hospitalizations were longer overall.

Here’s what I discovered: The hospital protected me against binge eating. It was a huge relief to not have food available to me, and even if I could get it, no ability to pig out on it since people were keeping an eye on me. I felt better and better as the constant fullness in my belly from overstuffing went away. My body breathed a sigh of relief. So naturally, I was happier. I was afraid to leave the hospital, since I was scared I couldn’t handle the freedom.

All that, I suppose, appeared to them as if I had some phobia, maybe agorophobia. I didn’t. I was terrified that if I left my eating would get out of control. I didn’t know what to do. Meanwhile, I switched shrinks to a couple of bozos that lied and said they knew all about ED. The psychologist decided I was depressed. Well, due to incompetent shrinks, yes, I was. I ended up going back repeatedly. I knew they would never take me seriously if I showed up and said, “I need help with ED,” so I said I was depressed just to get myself in and away from food. That’s how I ended up a chronic patient.

After a year with the bozos, I became aware of their dishonesty and I couldn’t handle that I had been betrayed. That’s when I overdosed. Betrayal is hard to handle for anyone. After that, my parents weren’t going to put up with the bozos’ nonsense anymore. They found out about Gould Farm, and sent me there.

My parents were concerned that Gould Farm advertised that it treated schizophrenia. I didn’t have it, nor had I ever been psychotic. So we were concerned that maybe it was another bad fit. At the time I was put on lithium, I wasn’t in a manic episode, showed no signs of psychosis or hypomania. The nurse handed me a pill and said,”Dr. Capers wants you to try lithium.” This was at breakfast.  I did what I was told and didn’t give it a second thought.

Lo and behold the lithium stopped the bingeing. It ended after the very first pill. I was told that was impossible. However, more recent research shows that much lower doses of lithium are effective, and the initial dose generally given, 300, is a dangerous overdose.

I had no clue Dr. Capers had put in paperwork for disability based on nonexistent schiz. I learned later that he was practicing medicine without a license (and got caught). I had no clue. I ended up seeing him privately. Another of his patients and I agreed that this guy was a heavy-duty pill pusher. After I left him, I had leftover maybe 50 bottles of pills.

Capers had asked me if I heard voices, and asked what they said. I had no clue how to answer that. I made up stuff sometimes, not knowing how else to answer. I began to envy voice-hearers. I’d listen and try to hear. I couldn’t. Every sound made me turn around, hoping it was a voice. It never was. I felt inadequate and stupid. A few shrinks later a doctor said he didn’t believe I heard voices. I felt pushed this way and that. Yes, they had totally forgotten about my ED, which still had not improved. I begged for help with it, and never got it.

They could never figure me out. Over the years they switched it to schizoaffective. I was convinced I had it for a long time, and habitually took on the symptoms. This is how it happens, that the labeling creates sickness. I feel sorry for my family, that they had to go through all that. I was stuck and couldn’t get out of that situation. Years later, they still  believed I heard voices and had delusions.

I know I’m not the only one. I was stuck in there by accident. Others were stuck in there due to homosexuality even, then labeled, and ended up acting out the label just as I did.

6 thoughts on “How I got misdiagnosed with schizoaffective disorder when really, I had an eating disorder”

  1. It’s all such crap. They have put that label on me, too. Utter crap. Do they think I’m an idiot? A combination of mood swings and SCHIZOPHRENIA? Sure, people have been trying to destroy me all my life because I’m a bit different than they are and they can’t stand it. Their conformity, hypocrisy, cruelty, greed….all so lovely. Especially my “family”.

    1. I believe many people were diagnosed with mental disorders who didn’t fit their “criteria.” This is still happening since a psych dx is done without any proof. It’s all guesswork. They all admitted this to me. Unfortunately, in the court system, the guesswork of a shrink is honored as factual without supporting measurable evidence (and these shrinks are highly paid), while other expert witnesses provide proof, such as x-rays,
      traces of drugs, etc. What seals our fate is the claim of mental incompetence, meaning that our own word isn’t considered credible. They make that claim for convenience or because they need to ensure that no one listens to us or believes us.

      1. They take the best and the brightest. They discredit us and put us into a lower caste. I would have never complained once to my folks of the bullying if I thought it would have led to labelling. Hang around someone who has no label: everything we say is bullshit to them…it’s unreliable. “Oh, it was this way,” they say. IF we have an opinion, it’s nuts. If we are proved right, they knew about it all along.!!!! I was given a dx of Schizoaffective after spending 90 minutes with an MSW!!! Not even a real shink. The last time I went there I had about 6 hours of tests with the ink blots the whole enchilada or whole megillah–then I was “schizotypal”. I know that I know I have high functioning Autism….They don’t want to ‘give” me that dx, however, because it’s a physical neuro disorder and does not have the STIGMA OF MENTAL DX.

        1. A neuro exam would clear that up. I’d go to someone who isn’t in cahoots with your shrinks. A full neuro exam usually detects that kind of thing. Since it’s a neuro condition, shrinks shouldn’t tread there, that’s my opinion.

        2. Don’t know if Medicare covers that. I took an Autism Test online and am “on the spectrum”. When I took the test before, I was right on the line, now, I’m more autistic.

Feedback and comments welcome!