First You Must Know Something Is Wrong

Everyone’s experience of a diagnosis is different. Here is mine: A key opens a lock I didn’t know existed, sending a door swinging wide.

When it is happening to you, it feels cool and normal and fine because from within the prison you have made for yourself, this is just how everyone lives. No one talks about it because it’s so ubiquitous that no one has to talk about it, like the sky and the fact that it is blue until it is observably not, covered in a pall of smoke or little white clouds or fiery sherbet skies. The sky is blue, though, as a baseline, behind the clouds, always waiting.

Clear, blue, September 11 skies. Those are what I think about on the airplane as “we are beginning our descent” into a city alive with lights, like a smattering of stars in a sky I can’t see because of the light pollution. My eyes still seek out the two towers that are not there, have not been there for nearly twenty years. My mind moves to the visceral pleasure of filling in the bubbles on my ballot, then to Scantron forms for standardized tests, aesthetically perfect in all ways, a true blank slate. The soft “ding” of the Fasten Seat Belt sign pulls me out of it, for a moment, but then I start to wonder about the etymology of the word “magician” and from there to the family copy of the Oxford English Dictionary, which is 3,000 miles away at present, and from there to the new sheets I ordered, which would hopefully be waiting when I got home.

My brain moves on to anticipation, planning my strategic exit from the plane, trying to remember where I put my MetroCard, thinking already about where I should eat in this glorious city of food. It is early morning and that screams “bagels” to me. Bagels are an odd bread, and curiously only the bakeries of Brooklyn are capable of making them properly, something that causes me profound distress as a firm proponent of West Coast Best Coast. I turn away to gather my things. I have a tendency to sprawl in planes and hotel rooms alike, scattering my belongings everywhere and tipping the maids extra out of guilt, and also because it is the right thing to do.

I didn’t understand then that my scattered thoughts were symptoms of my mental illness, or get a correct diagnosis, until I was in my mid-twenties, after years of misery and heartbreak that didn’t have to happen. My diagnosis meant access to medications and therapy and other tools to help me manage my mental health. It meant more self-awareness and confidence. It meant freedom. And yet people treated it as a tragedy; the diagnosis murmured as though it was something to be ashamed of. And maybe it would have been, if I hadn’t had the disability community around me to say “congratulations,” lessening the sting of comments from nondisabled people. This was a thing of joy and forward-looking: At last, at last, I could find stability and my people along with it.

Everyone’s experience of a diagnosis is different. Here is mine: A key opens a lock I didn’t know existed, sending a door swinging wide. The open door bathes the room in sunlight, and I suddenly realize that I am sitting on dusty, cat hair-covered furniture, that the desk is rickety and the rug rat-chewed and holey. The room I am in is small and dingy, marked with the evidence of desperate escape attempts.

I had tried all the doors, I thought, gaslit by a series of shrugs, uncertainties, disbelief, wrong diagnoses, useless treatments, and whispers from the nurses who thought I couldn’t hear them. But this was my door, at last, finally, and there is a voice just beyond the door, that of a cheery carnival barker whipping up the crowd, and did I know that I had won a brand new living room set and it’s being delivered right now, so everyone applaud? I am blinking, mole-like, in the shattering bright light as all around me people remove my old furniture and roll up the rug and for the first time in a long time, the lamps all work and I don’t even mind that the living room set is flat-pack furniture I have to assemble, likely missing at least one crucial screw, it’s mine and no one can take it from me.

My diagnosis meant access to medications and therapy. It meant more self-awareness and confidence. It meant freedom.

So many disabled people live hearing that they must be weak failures who should try harder. If they failed out in school or life, it was chalked up to laziness—their own fault. That mindset nestles nicely with the misogynistic and racist world we live in, where diagnoses are absolutely gendered, sometimes fatally so—the “standard patient” is a white man, which has tremendous race and gender implications, but also age and identity implications. A teenager is told she can’t possibly have arthritis, a lesbian is asked if she’s sure she’s not pregnant, a Black girl should just apply herself harder in math class. When a diagnosis explains the root of a problem, it can be earth-shattering, and sometimes in a good way.

Disabled people offer congratulations on a new diagnosis: You must be so happy! What a delight! At last, a diagnosis! You must be thrilled to have your experience validated by a health-care professional, and by all the opportunities that are going to open up for you! You’ve got so many treatment modalities to explore! DM if you need help or someone to talk to!

Nondisabled people tend to express sorrow. You must be absolutely gutted. How sad, how tragic it is, they are thinking. What comes now?

To understand why a diagnosis is a cause for celebration, you may need to rethink your understanding of diagnosis. For some, diagnosis can be straightforward and obvious. Symptoms fit neatly, there’s a test, or the patient happens to have lucked out with a doctor who knows what they are doing. But diagnosis is really more complicated than that — House ran for eight seasons precisely because of diagnostic complexity, and healthy lack of realism. In daily life, it’s difficult to find a doctor who listens, who takes on patients-as-projects, to not get bounced between a million specialists, and sometimes, there is no diagnosis by the end of the episode. Maybe there is no test. Maybe the symptoms are hard to track. Maybe the doctor doesn’t know what they are doing. Maybe the patient doesn’t know that anything is wrong.

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There are vast experiential divides between disabled and non, but the circumstances surrounding diagnoses and how to respond to them are a huge one. Sometimes, a diagnosis is a blessing, a gift, a glorious joy, because at last, someone who has been suffering knows why, and suddenly has access to tools to help them manage their lives. This experience is acutely familiar to people who have gone through the phases of feeling wrong, broken, making things up, only to have their world opened up by a simple notation in a chart that means the world for them. Whatever is going on with them has always been happening. Now they know why. For nondisabled people, a diagnosis is a bad thing that people get in the doctor’s office, a grim moment that may be life-changing—the idea that the life-changing element of a diagnosis can be good is perplexing.

But in order to receive the gift of a diagnosis, first it is necessary to know that something is wrong, and it is here that so many of us find ourselves. Either we assume that what we are experiencing is aligned with everyone else’s experience, or we view symptoms as a minor nuisance, or we miss that a constellation of things that might seem benign on their own but do a syndrome or disorder make.

What was wrong with me was an unstoppable torrent of thoughts that never rested, that wrapped through and around everything and kept me up at night. “Racing thoughts,” is what this is labeled in the DSM—the holy bible of mental illness that is in fact littered with flaws, from sexism and racism to diagnostic criteria so vague (or rigid) that people can get dumped arbitrarily into a “bucket diagnosis” that sticks like forget-me-nots. It is the ultimate gatekeeper: Without a diagnosis, a physician cannot bill the insurance company.

But I didn’t know what they were, because I thought everyone’s brain was like mine, bouncing from topic to topic, making impossible connections, whirling around like a spacecraft using a gravity well as a slingshot. When my speech tumbled over itself in disorder as I bounced between subjects, it was just because I was enthusiastic, because there are so many things in this world to be excited about. Someone might comment that I can be exhausting, but that’s just because they don’t share my zest for life.

The idea that the life-changing element of a diagnosis can be good is perplexing.

Except for how the thoughts crawl into bed with me, hogging the covers and filling me with doubt and fear. How they are accompanied with restlessness and impulsivity. Anxiety, obsessive patterns of behavior. “But surely,” I thought, “this is what everyone’s life is like,” even when the thoughts become intrusive, as I became compelled by what it might feel like to pass my fingers through the flame of the stove, as I contemplated wading out into the surf line and letting the waves take me, as I began to be haunted by the belief that all my friends secretly hate me. But all this was normal, right?

I lean against the window eagerly, wanting to see the city race up to meet us as the plane lands, smiling softly as the plane’s wheels hit the tarmac and we began taxiing. I don’t care that the man one seat over is looking at my enthusiasm with disdain. His lack of curiosity is not my problem as the field at JFK slowly unfurls around us, the plane moving heavily into position at the gate, guided by neon-clad ground crew. Sometimes I feel like the plane, lumbering along the ground and in need of guidance but capable of improbably taking to the skies, soaring high above the earth, flying above the clouds with the whole world in front of me.

Not long after my flight to New York, I found a doctor who would actually listen to me. He waited patiently as I tumbled through my symptoms, constantly distracted by the art on the walls, the texture of my pants, my compulsion to get up and move, swinging my arms and tossing my head. He didn’t tell me to sit down. He gave me a diagnosis, instead.

A diagnosis may be a gift or a curse, the magician who hands it down bringing joy or despair, but it is, at last, a diagnosis. And that is something to fix upon and celebrate, like a 100-year comet, blazing a new trail through the skies.

Finally, we know what is wrong.

(In case you’re wondering, “magician” entered English in the late 14th century, from the Old French, derived from magique, supernatural art, the ability to use hidden supernatural forces.)