My Lived Experience Isn’t Defined by the DSM
Content note: mentions suicide.
In 2018, I took part in a research project while attending an intensive outpatient program for young adults with psychosis. I had been working with my treatment team for several months, but the researchers conducting the project wanted to interview me themselves to establish their own diagnosis.
We met in a small office with a desk and not much else. I remember talking with three people in total, at least one who was a psychiatrist. I chewed on a breakfast bar while they went back and forth, asking the same questions I had heard many times before. Do you ever hear things that other people can’t? Do you ever feel like people are following you? Have you ever thought about ending your life? Have you ever attempted it? After a year of meeting with social workers, therapists, and psychiatrists in various different programs, it was amazing how easy it had become to tell strangers about the darkest moments of my life; to boil down years of trauma to yes, no, sometimes, I dunno, maybe.
Regardless, I tried my best to answer honestly (while keeping in mind that they were mandated reporters). The truth was, I was desperate to be given a diagnosis that made sense to me, as the diagnoses I had been previously given felt inaccurate or incomplete. I looked to a diagnosis to finally validate the pain I was in from years of mental distress, to finally make my trauma make sense. I was hoping that these researchers’ “fresh eyes” would allow them to find a DSM-approved diagnosis that fit me like a tailored jacket, as opposed to a lumpy sweater with no armholes.
The researchers scribbled on their clipboards while I described my first diagnosed psychotic episode that happened a year prior. While they were friendly enough and seemed satisfied with my explanations, I still struggled to find the right words to convey what I meant. Even the term “psychotic episode” was hard to say — not because of the stigma associated with psychosis (I was, after all, in a program full of other people with similar experiences), but because the word “episode” never felt quite right. A psychotic episode? Personally, my symptoms didn’t feel like they happened in definitive episodes (nowadays, I usually describe my symptoms as being on the “front burner” or “back burner,” but never entirely off the stove).
At one point during the interview, I tried to explain a computer-related delusion I had. When I described my experience, one of the researchers tried to echo it back, rephrasing my words in a way that made sense to them. “Okay, so you thought that people were watching you through your computer?”
“Yeah, I guess,” I said. Except no, I didn’t think that. More accurately, I was worried that people were documenting what I did on my computer. But the more I had tried to clarify, the more I felt insecure about my answer. At that point in my life, finding my own language to describe my experience with mental distress felt not only impossible but wrong. My homemade definitions felt embarrassing in a clinical setting. My lived experience wasn’t backed up by years of research and a doctorate degree — It was just how I felt, which didn’t feel valid enough. I desperately wanted my distress to be taken seriously, but I couldn’t take myself seriously.
When the interview ended, I was filled with doubt. My desire to finally receive an “accurate” diagnosis after a three-hour interview now felt silly to me. I didn’t go into detail about my childhood trauma. I didn’t mention that I was assaulted a few months before the interview took place. I sure didn’t mention that I was (at the time) convinced that I was going to be arrested for a crime that never happened.
When I think about this story, I think about a bowl full of antique keys that my mom used as a table centerpiece when I was a kid. Most of the keys had been rusted, long separated from the items they used to unlock. However, there was one key my mom threw into the mix that unlocked a tiny jewelry box she had. I remember sifting through the keys as a kid, trying to find that one special key to unlock the box.
My desire to find the “right” diagnosis felt just like sorting through those rusty keys, except instead of keys, I was sorting through a collection of ill-fitting diagnoses that had been floated my way (OCD, panic disorder, psychotic disorder, PTSD, delusional disorder, schizophrenia…I could go on).
Ultimately, what I was looking to unlock wasn’t yet another diagnosis; I was seeking understanding, compassion, empathy, and curiosity (all of which being diagnosed with a psychotic disorder tended to keep me from). I was looking to unlock a version of mental health care that was surprisingly hard to find within our current system — one that understood psychosis and distress as having more meaning and context than simply being a biochemical abnormality to eradicate. However, without the diagnosis, I felt lost — adrift with no other way of finding people with similar experiences.
While these researchers seemed like they were trying their best to listen and understand, I had been dismissed by many mental health professionals before while trying to describe my experiences. The first time I was aware of this was during my “psychotic episode" in 2017. I ended up in the ER because I was going to kill myself. When I tried to explain what was going on in my mind, the psychiatrist simply shook her head and said, “You’re not making sense. I can’t help you if you won’t make sense.” While their response was dismissive, it was not unique. For many people, once they’re labeled psychotic, everything they say, do, and feel is deemed “senseless.”
Finding my place within the very, very broad world of “mental health advocacy” has felt like a similar struggle to finding my place within psychiatry. Google “mental health advocacy” and you’ll quickly pull up articles about how having a psychiatric diagnosis is an inherently good thing, since it’s assumed to lead to supportive mental health care.
However, to echo the psychiatric survivors and activists before me, being diagnosed with a serious mental illness often further marginalizes someone, and the DSM is far from being a universal and objectively helpful document. As World Mental Health Day approaches, I’ve been thinking about the book Crazy Like Us: The Globalization of the American Psyche, where Ethan Waters discusses how one’s understanding of their mental distress, and even their distress itself, is influenced by what American psychiatry considers acceptable “symptom pools” (or rather, the hallmark symptoms of their illness). There’s a detrimental impact of globally enforcing one American (imperialist) understanding of what “mental illness” is, attempting to erase various cultural and personal ideas about mental distress.
Challenging the diagnostic labels I’ve been told are objective and universal has deepened how I view my own experience while also broadening my understanding of others. Trying to unlearn rigid definitions of mental illness while existing in a society that is bound and determined to enforce them has been a challenge, but in many ways, attempting to fit within those rigid definitions in order to accept myself was even harder. Of course, that’s not to say that access to a diagnosis can’t be helpful, or that those given these diagnoses aren’t allowed to use them. I’ll still share my diagnosis or use it for communication purposes. I’m not interested in telling people how to think, feel, or discuss their own experience.
At the end of the day, I hope we can embrace the wide spectrum of human emotions and the various ways to discuss and define them. I hope we can value lived experience beyond diagnosis, including those who are self-diagnosed, reject their diagnosis, or don’t have access to a diagnosis. I hope we can cultivate curiosity and compassion for both ourselves and others.