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I Undiagnosed Myself to Get Better
I threw ADHD, BPD, C-PTSD, OCD all out the window. It worked.
Maddie Rose (they/them) is a Philadelphia-based writer, organizer, disability liberationist and thinker of crazy thoughts.
Diagnosis is the holy grail of health treatment. A nightmarish and expensive search that we dream can grant powers like answers to lifelong questions, medication and a plan for treatment. Additional powers include accommodations for navigating the harsh and demanding world of capitalist work, school, housing and healthcare that even the average person struggles to survive beneath.
So how did six mental health diagnoses, dozens of medications and over fifteen years of psychiatric care leave me with little improvement in my life?
If I were to believe the rising deterministic perspective on mental health, I would believe that my brain chemistry is wrong, that my thought patterns were set at birth and that trauma will direct my actions forever. I would think my best option is ruthless advocacy for accommodations, and to simply explain my behavior to those around me. It’s a belief that preaches acceptance, but shuns the possibility of healing as ableist propaganda—if I don’t accept my diagnoses, I am simply in denial of my condition.
For a while, I bought into this thinking. I didn’t believe it was possible for me to get better, until I did.
My treatment began early, because my problems did too. At the age of 11 or so I begged my parents to bring me to a therapist. I had a crippling phobia of spiders that led to extensive searches of every room I would enter. I remember the waiting room at my intake appointment, glued to my seat, watching a spider climb up the wall and assuming it was part of the evaluation. We got a diagnosis, and my mom and I nearly laughed our way out of the office and through the parking lot—neither of us believed it. No way did I have generalized anxiety: I had lots of friends. I did well in school. It was just spiders.
But I felt myself drawn back into therapy. I was really scared of and angry at the world as a child. I was scared of sleeping. I was often convinced I couldn’t breathe. I adopted strange rhythms and rituals to claim a sense of control. I had unstable relationships, gripped with extreme fear at the baseless idea that my parents hated me. I instigated fights with friends in the hallways before class. Middle school brought my first experience surviving assault, which I brushed off as part of the hell that was being alive. I emerged hypervigilant and suspicious of my relationships, willing to cut them off at the first sign of trouble.
I entered a series of over a decade of rotating labels, diagnosed and re-diagnosed by new psychiatrists with whatever was popular at the time. In order: OCD, anxiety, depression, bipolar, BPD (my most loathed), C-PTSD. Ultimately I was unhappy, unstable and conflict-prone, symptoms that remained the same while diagnoses were updated. The symptoms fit just about every label if you shoved the puzzle piece in at the right angle.
I quickly discovered diagnosis was a necessary tool in a world where expectations were far above and beyond the average kid's capacity: long school days with demanding assignments beyond what I could learn in a thirty-kid class, and strict test-taking measures. I scrambled for the accommodations I was promised: extra absences from school, time on tests and medications—Celexa, Wellbutrin and Xanax—to carry me through academic pressure.
As I got older, workplaces were no different. Forty-plus hour work weeks with no healthcare and little opportunity to sit were enough to break many people around me. I used my diagnoses to push for five-minute breaks to work myself down from panic attacks, after customers screamed at me when I wouldn’t let them buy a hamster to put in a fishbowl or whatever. I just needed a minute to breathe.
For anyone who falls even slightly below this outrageously high threshold of capability, an excuse is needed to justify accommodations. There’s little space to name the expectation as simply unreasonable. Paperwork is needed to explain why an accommodation is necessary.
Diagnoses, along with a psychiatrist on call, were a safety net—allowing me legitimacy, the authority to take the time I needed to withstand the pressures of work and life.
While my ruthless pursuit of diagnoses left me with many possible answers as to why my life sucked, it didn’t actually make it better.
My diagnoses were a handy shield. I didn't need to unpack my over-reaction to mistakes, my meltdowns and demands of others to relieve the meltdowns, because I had an explanation. But it wasn't just an issue of accountability, it harmed myself. I had no concept of how to take care of myself. My diagnoses named my behaviors, but they also painted them as inevitable and unchangeable.
So I un-diagnosed myself.
Once a seventh diagnosis was suggested—ADHD—I hit diagnosis burnout. I wasn't doing any better. No new diagnosis or medication moved me towards healing. Frequently the medication shifts only made me more unstable, and masked life problems like abusive relationships that worsened the instability.
My new therapist was on board. They put down whatever diagnosis I needed as a tool on paper, which lived separately from my treatment plan. We ditched symptom language. I wanted to see what it would take to make my life better without the framework of symptoms and categories. What could we learn by just looking at me holistically, as a person and within the world?
I analyzed all the repeated problems in my life: toxic relationships, over-dependence, fear, emotional instability.
Laying my problems bare on the table and unpacking them let me create better coping mechanisms. I found new therapies: EMDR for trauma, and DBT—or as I like to call it, Preschool for Feelings and Friends. I went from having two go-to skills for handling problems—emotional breakdown, and making someone fix it for me—to several dozen. Undiagnosing myself let me learn skills to cope better.
What I found in this process was—while nobody can pick apart nature and nurture—few problems felt like a chemical imbalance inherent to my brain. Many were reactions to the world I lived in—a capitalist, hyper-productive country with no safety net, no time for rest, and many justified fears that provoke a jump to self-protection faster than community support. Other problems stemmed from my past—growing up with untreated chronic pain and abuses I kept hidden that now put me into a fight-or-flight response. I looked at myself without a diagnosis and simply saw a walking, talking stack of ineffective coping mechanisms in a trenchcoat.
My diagnosis experience was my own. But I doubt I’m alone in the nebulous mental health world of overlapping symptoms, maladaptive coping mechanisms and unstable lives, where diagnoses provide few answers and no clear path to healing.
I grew to resent how diagnosis was flung at me from every angle, pathologizing every ounce of my human experience. My TikTok algorithm throws at me daily content intended for people with depression or ADHD, which many commenters suggest is a sign the algorithm knows something about me I don’t. I don’t think that’s true — I think I am part of the monetization of mental health. I am shown diagnosis-specific trending content sandwiched between ads for virtual therapy companies that are known for collecting data on patients for targeted marketing. Don’t get me wrong—every mental health condition is real in that those experiences exist. But the diagnosis mill is just as real, and it has an agenda.
The further I've ventured into undiagnosis-land and rejected the rise of online diagnosis-communities, the less I’ve needed to honor my reality through diagnosis. I’ve learned to validate myself. I’ve overcome so many struggles! I’ve failed at many too, because my brain and my life and also living in general is pretty tough!
I also have found validation in a place I didn't expect: among socialists, even those my previous self would have identified as "neurotypicals." They aren't well either. They know the world we are in is set up for our own failure, and that when I could barely function this past month it didn’t need to be labeled as a depression flare-up. It was a reasonable response to the horrors of uncontained Covid spread country-wide with no governmental support. It's not just me that's not okay. Everything is not okay. In a twisted way, I find peace in that.
I won’t pretend that undiagnosing myself has relieved me of all my struggles. I will likely always be a person with Big Feelings and anxious responses. But armed with that knowledge, I want to become the best version of myself that I can be under a tough past and a tough present. I want to learn how to cope. I want to be kinder to the people around me, to contain my emotional explosivity to my room, to watch four hours of reality television when my panic peaks. I’ll wield my paper diagnosis when necessary. But I do, really, want to get better. And diagnosis cannot solve that.