I Have Schizophrenia. Where’s My Pride Movement?Reading Time: 6 minutes
I have schizophrenia. Where’s my pride movement?
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I’ve always had a soft spot for Tommy. When we met in a support group, I found it endearing that, at 26, he hadn’t decided to go by Tom or Thomas instead. During his first share, I was charmed by the matter-of-fact way he stated, ‘Welp, I don’t have any friends.’
A few months after we met, I made him cry when I shared something with the group: A person in the schizophrenia space who doesn’t have the condition themselves had told me that there could never be a schizophrenia pride movement. They claimed that a pride movement would be counter to the goals of their advocacy. A pride movement, they seemed to suggest, might encourage us to stop engaging with treatment—as though shame is tolerable if it keeps us taking our meds.
That was when Tommy, the only other participant with schizophrenia, started to cry. The idea that we couldn’t have pride in our condition reminded him of how people reacted when he first started to experience the symptoms of schizophrenia: ‘It was like I was dead,’ he said.
Tommy and I both take our medication daily, and neither of us has plans to stop anytime soon. But we both still yearn for a pride movement. It doesn’t matter how effective our treatment is or how many people tell us, ‘I never would have guessed you have schizophrenia!’ As though we’re not already aware of that fact. As though it’s a compliment.
We can lead normal lives, we can hold down full-time work, we can get married and have children, but every time we see a schizophrenic villain in a crime show or read a headline about a politician scapegoating ‘schizophrenics’ for mass shootings, we are reminded of exactly what we are to others. It’s a lifelong challenge for people like Tommy and me to separate that judgment from our views of ourselves.
When doctors pin the scarlet letter of a schizophrenia diagnosis on us, they tend to advise us not to get hung up on labels, saying things like ‘I don’t see you as schizophrenic’ and ‘Your schizophrenia does not define you.’ But people like Tommy and me can’t avoid getting hung up on labels when the label in question changes everything.
Schizophrenia is not just a disease I live with—it’s also an inextricable part of my identity. Like many of my peers, I tried to run from the label at first, only to learn that denying it amplifies the shame and difficulty of living with one of the most stigmatized mental health conditions.
While there are pride days, weeks, and months for other stigmatized and misunderstood diagnoses, there has yet to be any such celebratory occasion for people with schizophrenia. Instead, we have World Schizophrenia Day, which is focused on raising awareness and reducing stigma. But World Schizophrenia Day and other events like it focus on external perceptions of our community, while a pride movement would focus on our perceptions of ourselves. Some advocates, like the person I mentioned in my support group, think a pride movement could drive people away from proven treatments. But I think it might actually inspire members of our community to overcome the denial that prevents so many from accepting their diagnosis and subsequent treatment. With any illness, the first step to recovery is recognizing you have something you need to treat. But tragically, the most common reason that 50 percent of people with schizophrenia don’t take their prescribed medication is that they don’t understand they have schizophrenia to begin with.
Doctors label this state of not believing one’s diagnosis ‘anosognosia,’ a symptom of schizophrenia in which an individual is unable to understand that they are ill. Many well-meaning doctors and caregivers give great weight to the distinction between anosognosia and denial. They argue that people with schizophrenia who don’t believe they’re ill should not be blamed for this lack of understanding because it’s strictly a symptom of the illness and not a deficit of emotional maturity or an intentional refusal to accept the facts of one’s existence.
The widely accepted, traditional approach to combating this phenomenon is to pump schizophrenic bodies full of medication with or without the individual’s consent. Involuntary treatment saves lives by reducing or eliminating symptoms including anosognosia, but it can also be weaponized in illegal and traumatic ways. And it’s typically not a permanent solution—no matter how you feel about the ethics of long-term involuntary treatment, our legal system rarely permits its use.
Though it has its place, involuntary treatment in its current manifestation is often not enough for recovery. It does nothing to address the complex emotional state of denial, which I’ve found can also be detrimental to recovery. As a result, people who have been treated involuntarily often abandon their medications as soon as they’ve stabilized to the point that they’re legally allowed to do so.
Though medication reduced my symptoms during my onset, it still took me many months to accept my diagnosis. At several points during my 10-month-long psychotic episode, the logic of my delusions broke down, and I considered the possibility that I was experiencing psychosis. When I found myself in a psych ward five weeks after my first psychotic break, I distinctly remember contemplating that much of what I had experienced might have been delusions.
But I had been subjected to 23 years of societal conditioning that ‘schizophrenics’ are dangerous, irredeemable leeches on society. Before my own onset, when I told others about my relative with schizophrenia, I found that they had more sympathy for me than for my loved one. Some went as far as to tell me that caregivers and family members of people with schizophrenia suffer the most.
I was not a dangerous, irredeemable leech on society, but I had internalized this understanding of people with schizophrenia, and it was much easier to fall back into my delusions than to accept my new identity. Though medication reduced my symptoms, I didn’t stop believing my life was a hyperreality psychological experiment until I was finally ready to admit I have schizophrenia. Perhaps I might have come out of psychosis sooner had there been a schizophrenia pride movement to teach me not to deny but to love and accept this aspect of myself.
There’s this idea in traditional mental health advocacy that someone like me is an innocent victim of a diabolical illness. Many in this space seek to eradicate the use of language like ‘Sally is schizophrenic’ or ‘Sally is a schizophrenic’—language that equates my entire being to my schizophrenia—in favor of language that puts as much space between my schizophrenia and me as possible. To some, ‘Sally has schizophrenia’ still doesn’t go far enough, and they prefer ‘Sally lives with schizophrenia’ because they find comfort in the additional distance the extra word creates between person and disease.
Though it usually strikes me as pejorative when able-minded people call me ‘schizophrenic’ or ‘a schizophrenic,’ it also bothers me when the many schizophrenia advocates without direct lived experience—caregivers, family members, and doctors—correct me when I refer to myself that way. It’s ingroup language, and while it’s problematic to use these phrases if you haven’t been there, it can feel accurate if your identity has been fundamentally transformed by this diagnosis.
To advocates of person-first language, loving one’s schizophrenic self might seem pretty radical. But there is no line between an individual and their schizophrenia.
My symptoms feel more like an extension of myself than elements of an alien disease. I’ve described my hallucinations and delusions as ‘Sally Littlefield fanfiction’ because their content is personalized—they reflect and expand upon my greatest fears, desires, strengths, and insecurities. Psychosis is often a deeply introspective state during which I’ve done the self-examination and critical thinking behind major life decisions—decisions I haven’t regretted.
Forcing an artificial divide between an individual and their condition creates a slippery slope from ‘You are not your schizophrenia’ to ‘In psychosis, you’re not you.’ If I’m not me in psychosis, then what do I become? Less than a person?
During my nearly yearlong psychotic episode, that was how strangers’ reactions made me feel as I talked to myself on the street, shoplifted cans of wine, and smoked other people’s used cigarette butts. Perhaps this attitude is why we’re so often taken advantage of in psychosis: Despite stereotypes that we’re violent and dangerous, we are actually 14 times more likely to be the victims of violence than to be arrested as the perpetrator. Many people have implied my psychosis was so prolonged because I was too irrational, stubborn, selfish, and immature to accept help—and I wonder if they would think it was my own fault if I’d been robbed or assaulted.
To put another false assumption to rest, having pride in my diagnosis doesn’t mean I won’t do everything in my power to avoid falling into psychosis again. Though much of my psychosis was whimsical and beautiful, I also experienced delusions so terrifying I almost took my own life just to make them stop. In addition, the more time your brain spends in psychosis, the greater the chance you will have longer and more frequent episodes. I will take medication daily for the rest of my life to prevent this gradual erosion of my sanity. But given that my schizophrenia will be with me forever, I also treasure the awe-inspiring moments of that life-defining experience.
In a world that actively disowns people like me—to the point that we feel like we’re already dead, as Tommy tearfully put it—celebrating our schizophrenic identity can save lives in a way medication never will.
My schizophrenia is and will always be a fundamental part of who I am. Loving myself means loving my schizophrenia. It’s time the healthcare system acknowledges the need for a movement to convince people with this condition of their worth, schizophrenia and all.
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