The Misery of Being Misdiagnosed and Overmedicated

8
3760

As a teenager, I felt like I lived in a kind of muffled cotton cocoon, which prevented me from fully connecting or relating to anyone else. This barrier left me in a perpetual state of confusion which, when combined with my social awkwardness and my parents’ strict rules, essentially prevented me from having a normal social life. I wasn’t only distanced from the world outside my mind, but also from my own body, whose sensations I was not always aware of. Everything seemed fake. More often than not, I could not even be certain that I was awake.

At the time I accepted this peculiar state of mind as somehow inevitable. From an early age, relatives and doctors alike had told me I was severely mentally ill. The exact diagnosis was never quite pinned down, but everyone was so sure. Naturally, I believed them. After all, I’d been on heavy doses of psychotropic medications since age eight or nine. On a regular basis I had my blood drawn to ensure my lithium levels were in a therapeutic as opposed to dangerous range. I’d been seeing a therapist and psychiatrist for as long as I could remember. I also had a tendency to get very obsessed with niche historical periods or books, as well as problems with breaking down in tears over relatively small issues when overwhelmed by loud noises or confusing situations.

Not only that, I regularly hallucinated about a certain relative. We’d have these terrifying fights where she would threaten to kill me and sometimes herself because I was such a “bad kid.” She’d ask me if I needed to be placed in a mental hospital, because I was obviously crazy. Screaming in my face, she’d chase me. If I dared attempt to defend myself, I was accused of talking back. If I backed away as she screamed, she would accuse me of trying to make her look like she hit me (even though these arguments almost exclusively occurred when nobody else was present). As real and chilling as these incidents seemed to me, when I attempted to discuss them later to get some kind of closure or something resembling an apology, I was always told that I’d been imagining them. After all, if she were really as bad as I claimed, surely she wouldn’t put so much time and effort into caring for me? How dare I accuse her of being a monster, when she only wanted the best for me!

Since I was certain of my own severe mental illness, I naturally believed her. Why wouldn’t I? After all, I’d been taught from a very early age that my own perceptions were generally inaccurate. If I was uncomfortable in a situation say, I didn’t want my grandmother to hug me, because physical contact made me nervous this was my own fault for being weird about something ordinary, and I had to suck it up. I’d been raised to see adults of any kind as the ultimate authority figure to the point that if my understanding of reality conflicted with theirs, I had to accept that I was hallucinating or misremembering. It didn’t matter if they made me feel unsafe or if their rules were irrational, they were adults and I was a child. By virtue of my relative youth, I was inherently subordinate. This was an attitude that, in my teens, made me susceptible to sexual exploitation both online and off.

The dreamlike bubble in which I lived, combined with my parents’ strict rules and my hallucinations of my relative’s rage, contributed to a sense of extreme despair. For my health, my parents required me to go to bed at eight every night. Generally I got home from school around four. Between my various doctors and my homework which took three to four hours most evenings I couldn’t see anyone socially. The situation was exacerbated by the fact that my mother, worried I would be kidnapped by “perverts,” forbade me from going anywhere alone aside from school, a nearby playground, and the library down the street. Once she found out that a man who lived nearby would catcall me every time I walked by his house on the way to the library, this became off-limits as well. So as a teen my only real relationships, aside from some classmates who pitied me enough to allow me to eat lunch with them, were with strangers online primarily other teenagers on fanfiction sites, as well as various older men who I now suspect were probably pedophiles. Ironically, my parents’ attempts to keep me safe only made me more susceptible to trouble.

I was lonely, isolated, and perpetually dazed. The mere idea of a future seemed impossible. My therapist regularly told me that, if I couldn’t learn to fake being normal, I would never achieve anything in life and would be living in my parents’ basement at thirty. Although I understood that she was only trying to encourage me to fit in, my attempts to behave like other students generally made me come across as creepily fake. Plus the stress of attempting to act all the time only made me more prone to breaking down in tears, leading to the usual trip to the school psychologist’s office.

I was already a closeted trans person, doing my best to seem as feminine as possible so that I would not accidentally out myself because, due to my limited understanding of gender identity (I’d never knowingly met another trans person and my parents made disparaging jokes about queer people), I feared that this would be perceived as a sign of schizophrenia and lead to me being committed to an institution or otherwise punished by my family. The pressure of also attempting to put on a neurotypical mask was too much.

So, I fell into a kind of severe despair. I made no secret of the fact that I did not believe life was worth living. My diagnoses also rendered me ineligible to take AP classes in spite of my extremely high test scores, or so I was told by my teachers and parents. I remained stuck mostly in special education courses where I learned almost nothing, leading me to hate school and give up on the prospect of higher education. After all, if I couldn’t be trusted to take normal classes, who would allow me to go to university?

Given that I assumed I would never be able to work, I began to see death as the only way out of my situation. I thought that this was the only way to escape from the repressive environment in which I lived and the wretchedness of my broken, cotton-swathed brain. Luckily, whether due to hope or incompetency, none of my suicide attempts were serious enough to actually succeed. I don’t think I really wanted to die. I really just wanted to be free. Around the same time I tried to run away from home, but the police caught me in New York after a concerned tourist called them. My parents explained to them that I was developmentally disabled and must’ve wandered off due to confusion, when in reality the attempt had been carefully planned.

Things began to change in my last year of high school. My parents allowed me to attend a screenwriting Meetup once per week, so long as I was chaperoned by either my mother or one of my aunts. There I learned that I was actually funny, likable, and perfectly capable of making friends without pretending to be normal. My real self was enough, niche passions and all. Of course, the Meetup was also where I met a man in his mid-thirties, who manipulated and coerced me into a relationship that left me afraid for years something my parents, somehow, completely failed to notice even though virtually everything between my ex and I occurred in my family’s home, because I was forbidden from visiting his without supervision.

Most significantly, during my last months of senior year I wrote a book. It was neither good nor worthy of publication, but in the process of writing I secretly carried around a tape recorder for weeks so that I could study the way real people talked and use that to write better dialogue. In my fanfiction, I’d generally imitated old books, leading to false-sounding speech. This was how I learned that my relative had been lying to me. I wasn’t hallucinating our fights, they were real. Horrified, I finally worked up the courage to ask my father, aunts, and grandmother about her behavior. They explained that she’d always been like that. Of course, they insisted I had no right to blame her or hold a grudge because she had troubles of her own and couldn’t always control her anger.

Around my 18th birthday, at my therapist’s suggestion, I was reassessed by a team of psychiatrists. This time, due to my age, my relative’s testimony regarding my behavior was largely ignored. The verdict was that I simply had autism and some slight social anxiety. After that I finally got off all the heavy drugs, something which my doctors had resisted for so many years. Before this, one of the only times I’d been allowed to stop a medication was when I developed a temporary but terrifying case of Tardive Dyskinesia at 15. During the process I discovered that the dreamlike state of confusion wasn’t my mental illness, it was a side effect a side effect I’d endured for so long that I’d assumed it was who I actually was. Without the medication, I could connect to humans and animals alike. I no longer felt dreamy or distant. Although I spent a few years in a state of sorrow due to the abusive relationship and briefly used opioids to cope, my drug use never spiraled out of control and I dealt with it on my own without requiring formal treatment. Ironically, now, I’m calmer than a lot of my friends.

I’ve since learned that my misdiagnosis was largely due to the way my relative misrepresented me to my doctors. She claimed that, for example, I was engaging in bizarre behaviors, such as stealing her keys and throwing them away to spite her. The records I’ve been able to access back this up, as did interactions with my last psychiatrist. Apparently, when a child is assumed to be mentally ill, their family’s testimony is given way more credence. It wasn’t until I had my father and other relatives explain on my behalf that the relative in question was prone to suspicious thinking and strange accusations that my usual doctor finally started to truly listen to me. Even the official re-diagnosis wasn’t enough for the psychiatrist. I suppose that just goes to show how little people listen when they assume you’re mentally ill.

Now, years later, I’m finally attending university again something I never believed I was capable of. I have a 3.7 GPA, study languages both modern and ancient, and am planning to pursue a career in academia. At my university I’m one of the better Latinists, proof that the obsessiveness that results from my autism is a positive trait rather than something pathological or shameful. I don’t see a psychiatrist now because there’s really no need I’m not on any psych meds anymore and my only diagnosis, autism, is not one that can be treated with drugs. Of course, even if I had another diagnosis, I would still see medication as a last resort rather than a first-line option, due to my extremely negative experiences. I’m not opposed to psych medication so long as it is not used coercively, I just believe that the side effects and potential dangers need to be seriously considered.

Having transitioned and thus eliminated the main cause of my social anxiety (having to live as a woman and being misgendered regularly), I’m no longer diagnosed with even this. My life is significantly better and more peaceful than I ever expected. I only wish I could’ve known that all this was possible, back when I was a scared and hopeless teen.

***

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.

***

Mad in America has made some changes to the commenting process. You no longer need to login or create an account on our site to comment. The only information needed is your name, email and comment text. Comments made with an account prior to this change will remain visible on the site.

8 COMMENTS

  1. M.L.,
    Thank goodness the team of psychiatrists who reassessed you at 18 didn’t pay attention to what your relatives said. But I’m sorry you had to go through so much to get where you are today. And good for you for finding the positive side of obsession. You are a remarkable person who’s living a remarkable life.
    Birdsong

    Report comment

  2. M.L. thank you for sharing your story. It’s difficult to read about everything you’ve been through. But the way you were able to follow your own voice, and continue becoming and sharing your authentic self, despite everything, is indescribably moving. You have so much to offer to the world and my heart feels lighter knowing you’re in it. You will help so many others heal. ❤️

    Report comment

  3. It’s sad to hear what you’ve been through, but I am relieved to hear of your liberation. And I am proud of you for the success you’ve experienced so far. You’ve discovered something that took me well into adulthood to learn: obsession, when well channeled, is often the reason for many people’s success.

    Thanks for sharing your story.

    Report comment

  4. Thanks for sharing your story so glad you’re coming out on the other side of this. I had a similar experience in some ways, my brother and I were both medicated based on my family’s testimony, and once I was old enough to realize how unwell my mother was speaking the truth about it was villainized. My brother was also beating me daily and attempted to kill me repeatedly through middle school into high school, but mentioning that as a cause of distress and downstream issues for me was met with aggression. Even then, the gaslighting you endured leaves me speechless: good god, of course you thought you were crazy!
    But you are not, and If no one has yet told you, you’ve every right to be angry about how your relative treated you, and in fact you don’t have a choice, but that does not make you a bad person it makes you sane and normal. If the other person cannot make a repair, you are stuck with the anger, because usually in a relationship the repair is what helps those feelings mend and what makes the relationship safe again. We do not get through our anger by being aggressive towards our anger, anymore than screaming at a screaming child helps them calm down. Aggression towards these feelings does not help you heal, it only increases the feelings or morphs them into shame and self contempt for having your sane feelings, which is further and self perpetuating damage. Your relatives response of aggression towards you for having them and identifying the harm done is therefore more harm done and quite obviously victim blaming. But you probably know all this already you are clearly very insightful. I wish you all the very best on your road to real health and clarity.

    Report comment

  5. What can I do if I want to share my personal story but do not show showing my real name and my photo?
    I read many stories on this website are with the real name and real person photo.
    That story was being removed in many online psychiatry forums already, but I have to share it.

    Report comment

LEAVE A REPLY