Self-diagnosis can be a prickly topic, especially when mental health intersects with personhood. For ways of being like autism and ADHD, we’re lucky enough to live in a time of exploding social support and understanding, and with it comes reduced reliance on formal assessment/diagnosis to understand ourselves as people are increasingly resource-sharing and building online communities for people to connect over shared mental health experiences.
Still, I know the prickliness surrounding self-diagnosis. I spent my university education in psychology and took in the good and awful qualities attached to formal healthcare. I cringe at frequent misconceptions about well-being and behavior behind every second Instagram reel. I used to deride self-diagnosis because I staked a lot of respect in a highly flawed healthcare system. But I’ve had to learn that it’s never so simple.
Occupational therapist Dr. Cole Goldberg says that, “The benefits of the increased public awareness around mental health conditions actually allows people to feel seen, not feel alone, and know that they can seek support. As an OT, the diagnosis means less to me than the functional implications, whether or not a formalized diagnostic process is completed.”
Dr. Goldberg’s approach describes the pragmatic client-led processes that defined my successful encounters with mental healthcare. The best process for anyone is whichever one leaves them feeling more capable.
The fact remains that most people who get formal confirmation about their brain state started with a self-diagnosis. Formal assessment is usually the tail end of long personal reflection, informal data collection from loved ones, and more than a few tears. My autism assessment began when my girlfriend pointed out how differently my mind worked. It was the spark I needed to examine my life through the lens of neurodivergence to see if the narrative fit me.
With the benefit of hindsight, I now tell people I actually began studying for my autism exam long before I made my first appointment. It began with asking loved ones if they saw the traits I was seeing and looking into how these traits manifest. It ended with a long-form report about my strengths and support needs. I overshot the quantitative criteria for an ASD diagnosis by about double in every category. That means I got an awesome grade in autism. Which is both very cool (to me) and a very neurotypical thing to say.
What I mean to say with my narrative is that any mental health diagnosis that hopes to be beneficial must be a cooperative process. It’s made of lived expertise paired with the skills and outside perspective of a professional.
Dr. Goldberg notes that, “we as health professionals often need to remind ourselves that we do not have the same lived experience as the person sitting opposite us. Their narrative is as important as our clinical training.”
Societal knowledge of mental well-being is at its peak, but mental healthcare itself is regrettably still priced like a luxury. In that kind of world, self-diagnosis through reflection is often the sole path to better personal understanding.
There’s a misconception that ‘self-diagnosis’ simply entails assigning a label to yourself after cursory Googling. More often than not, it involves processing a lifetime of (often painful) memories alongside accessible-but-reliable healthcare resources. Sites like Healthline and PsychCentral allow us to claw useful mental health information into our lives without sifting through peer-reviewed papers or drowning in misinformation and sales. With both tools in hand, we can match medical information to our life narrative and develop a coherent account.
Self-diagnosing isn’t comprehensive. We can’t perform psychometric assessments on ourselves with the trained expertise. We can’t evaluate our lives without personal bias, and we can never get an outsider’s view of our mind so long as we’re living in it.
Dr. Goldberg believes that misinformation is also a pitfall, saying that, “People often see a video on social media and relate to it, feel seen, and claim the diagnosis. We then miss the complexities that professionals have been taught to look for.”
The challenges of self-diagnosis grab queer people that much harder. Discrimination and minority stress have imposed a massive burden of mental distress on us. The healthcare system also has a longstanding reputation for mistreating us. Meanwhile, we’re disproportionately likely to be out of employment and housing due to that same discrimination, making healthcare access a nightmare.
Many of us are keenly aware that we have mental health difficulties but unable to locate professional care. Self-diagnosis can quickly become the best option for building a cogent narrative of our lives and beginning the work of recovery without adding another bill to the mix.
As my opinion of self-diagnosis has softened, I’ve grown into a live-and-let-live approach. Professional assessment is valuable, but it’s unjust to hold it up as the final boss of mental healthcare. Professionals aren’t infallible, either. We all know someone who was misdiagnosed by a medical professional. I was inaccurately tagged with ADHD when I was a teen, and that’s like, the most benign version of the story.
Rather than looking down on people who seek professional opinions or self-diagnose, we’re all better off looking to the benefits of our individual growth processes. We can all reap the benefits of self-exploration and education. And there’s no better time in history to start than right now.
I definitely think a nuanced view of self-diagnosis is important. I used to scoff at it but have also softened upon hearing stories from strangers and friends of how it has impacted their lives, whether they seek further clinical diagnosis or not. I don’t have a critique of this article but it made me want to share, in case others might find some resonance. I honestly wouldn’t have thought of connecting my own experience, if the cover photo for this article didn’t include a reference to ocd.
One of my OCD themes is health, and diagnoses (self and clinical) have been fraught for me. Trusting my own process or research isn’t always something I can do, since my thoughts play tricks on me a lot. Delving into research can send me into a convoluted spiral of both doubt and certainty, and a mistrust of my memory. It can be difficult to have a meta understanding of my mental state without a clinical perspective. I didn’t even consider the possibility that this was how my brain worked without a clinical outside perspective, and it took several separate clinicians diagnosing me to finally start to integrate this as part of my self-understanding. I had, on the other hand, self-diagnosed with a million other things that have turned out not to be accurate. I’m sure other people with OCD have different experiences, but this is mine!
Thanks for your experience, Fran. I’m with you in the knowledge that our self-assessments can’t always be trusted, especially if we’re prone to spiralling or are already emotionally destabilized. The general move toward a softer look at self-diagnosis AND professional assessment mostly just highlights how hard we all are to categorize. And that individual well-being is far more important than the pursuit of a quantitative self.
this was really lovely, Summer. thank you <3
<3!