“Sam, I should have caught that,” my psychiatrist told me. “I’m sorry.”
“That” was obsessive-compulsive disorder (OCD), a disorder I’d unknowingly lived with since childhood.
I say unknowingly because 10 separate clinicians, my psychiatrist among them, had misdiagnosed me with (seemingly) every mental disorder except OCD. Worse still, that meant I was heavily medicated for almost a decade — all for health conditions I never had to begin with.
So where, exactly, did it all go so horribly wrong?
I was 18 years old and saw my first therapist. But I had no idea it would take eight years to get proper treatment, let alone the correct diagnosis.
I first began seeing a therapist for what I could only describe as the deepest possible depression and a maze of irrational anxieties that I panicked my way through day after day. By the age of 18, I was completely honest when I told her in my first session, “I can’t continue living like this.”
It didn’t take long before she urged me to see a psychiatrist, who could diagnose and help manage the underlying biochemical pieces of the puzzle. I eagerly agreed. I wanted a name for what had troubled me for all those years.
Naively, I imagined it wasn’t much different from a sprained ankle. I pictured a kindly doctor greeting me by saying, “So, what seems to be the trouble?” followed then by a careful series of inquiries like, “Does it hurt when…” “Are you able to…”
Instead, it was paper questionnaires and a gruff, judgmental woman asking me, “If you’re doing well in school, why are you even here?” followed by “Fine — what drugs do you want?”
That first psychiatrist would label me “bipolar.” When I attempted to ask questions, she chided me for not “trusting” her.
I’d accumulate more labels as I moved through the mental health system:
- bipolar type II
- bipolar type I
- borderline personality disorder
- generalized anxiety disorder
- major depressive disorder
- psychotic disorder
- dissociative disorder
- histrionic personality disorder
But while the labels changed, my mental health didn’t.
I continued to get worse. As more and more medications were added (at one time, I was on eight different psychiatric meds, which included lithium and heavy doses of antipsychotics), my clinicians grew frustrated when nothing seemed to improve.
After being hospitalized a second time, I emerged a broken shell of a person. My friends, who came to retrieve me from the hospital, couldn’t believe what they saw. I was so thoroughly drugged that I couldn’t string sentences together.
The one complete sentence I did manage to say, though, came through clearly: “I’m not going back there again. Next time, I’ll kill myself first.”
At this point, I’d seen 10 different providers and received 10 different rushed, conflicting opinions — and had lost eight years to a broken system.
It was a psychologist at a crisis clinic who would finally put the pieces together. I came to him on the brink of a third hospitalization, trying desperately to understand why I wasn’t getting any better.
“I guess I’m bipolar, or borderline, or… I don’t know,” I told him.
“Is that what you think, though?” he asked me.
Taken aback by his question, I slowly shook my head.
And rather than handing me a questionnaire of symptoms to check off or reading off a list of diagnostic criteria, he simply said, “Tell me what’s going on.”
So I did.
I shared the obsessive, torturous thoughts that bombarded me daily. I told him about the times I couldn’t stop myself from knocking on wood or cracking my neck or repeating my address in my head, and how I felt like I was truly losing my mind.
“Sam,” he said to me. “How long have they been telling you that you’re bipolar or borderline?”
“Eight years,” I said despondently.
Horrified, he looked at me and said, “This is the clearest case of obsessive-compulsive disorder I’ve ever seen. I’m going to call your psychiatrist personally and talk to him.”
I nodded, at a loss for words. He then pulled out his laptop and finally screened me for OCD.
When I checked my medical record online that night, the plethora of confusing labels from all my previous doctors had vanished. In its place, there was just one: obsessive-compulsive disorder.
As unbelievable as it sounds, the truth is, what happened to me is astonishingly common.
Bipolar disorder, for example, is misdiagnosed a staggering
OCD, similarly, is only correctly diagnosed about half the time.
This is due, in part, to the fact that it’s rarely screened for. Much of where OCD takes hold is in a person’s thoughts. And while every clinician I saw asked me about my mood, not a single one ever asked me if I was having any thoughts that troubled me, beyond thoughts of suicide.
This would turn out to be a critical miss, because without investigating what was happening mentally, they missed the most diagnostically significant piece of the puzzle: my obsessive thoughts.
My OCD led me to experience depressive mood swings only because my obsessions were left untreated and were often distressing. Some providers, when I described the intrusive thoughts I experienced, even labeled me psychotic.
My ADHD — which I’d never been asked about — meant that my mood, when I wasn’t obsessing, tended to be upbeat, hyperactive, and energetic. This was repeatedly mistaken for some form of mania, another symptom of bipolar disorder.
These mood swings were worsened by anorexia nervosa, an eating disorder which led me to be severely malnourished, amplifying my emotional reactivity. I had never been asked any questions about food or body image, though — so my eating disorder wasn’t uncovered until much, much later.
This is why 10 different providers diagnosed me as having bipolar disorder and then as having borderline personality disorder, among other things, despite not having any of the other hallmark symptoms of either disorder.
If psychiatric evaluations fail to account for the nuanced ways that patients conceptualize, report, and experience mental health symptoms, misdiagnoses will continue to be the norm.
Put another way, surveys and screeners are tools, but they can’t replace meaningful doctor-patient interactions, particularly when translating the unique ways each person describes their symptoms.
This is how my intrusive thoughts were quickly labeled “psychotic” and “dissociative” and my mood swings labeled “bipolar.” And when all else failed, my lack of response to treatment simply became an issue with my “personality.”
And just as importantly, I can’t help but notice the questions that were simply never asked:
- whether or not I was eating
- what sorts of thoughts I tended to have
- where I was struggling at my job
Any of these questions would’ve illuminated what was really going on.
There are so many symptoms I likely would’ve identified with had they just been explained in words that actually resonated with my experiences.
If patients aren’t given the space they need to safely articulate their own experiences — and aren’t prompted to share all the dimensions of their mental and emotional well-being, even those that seem “irrelevant” to how they initially present — we’ll always be left with an incomplete picture of what that patient actually needs.
I finally have a full and fulfilling life, made possible only by properly diagnosing the mental health conditions I actually live with.
But I’m left with a sinking feeling. While I managed to hang on for the last 10 years, I only barely made it through.
The reality is, questionnaires and cursory conversations simply don’t take into account the whole person.
And without a more thorough, holistic view of the patient, we’re more likely than not to miss the nuances that distinguish disorders like OCD from anxiety and depression from bipolar disorder, among others.
When patients arrive in poor mental health, as they so often do, they can’t afford to have their recovery delayed.
Because for too many folks, even just one year of misdirected treatment runs the risk of losing them — to treatment fatigue or even suicide — before they’ve ever had a real chance to recover.
Sam Dylan Finch is the mental health and chronic conditions editor at Healthline. He’s also the blogger behind Let’s Queer Things Up!, where he writes about mental health, body positivity, and LGBTQ+ identity. As an advocate, he’s passionate about building community for people in recovery. You can find him on Twitter, Instagram, and Facebook, or learn more at samdylanfinch.com.