Masked: A Tale of Late Diagnosis
A half-finished crochet blanket lays on the floor, its frayed ends fully submerged in last night’s pasta alfredo. My dead pointe shoes (three months overdue for replacement) are half-haphazardly strewn against the cheap faux-leather ottoman I bought on Amazon with a gift card from last Christmas. My friend, AJ, surveys the mess and laughs. “You have a hot girl LA apartment, you know,” he says.
After a few internet searches, I find an article that describes the stereotype of women with messy bedrooms, taking selfies in a mirror, fully unaware of the hurricane behind them.
To be honest, I’ve been called worse things. Messy and selfish, from my parents in response to dishes scattered Jackson Pollack style around the house. Erratic, from my first boyfriend, after I started a presidential debate worthy brawl with him in a Lululemon. Disorganized, from every mathematics teacher who’s had to straighten out a crumpled piece of paperwork with suspicious stains on the edges.
Sometimes the labels make me feel unique, special. Like that girl: The one who goes to the beach three hours away at 2 A.M to watch waves and talk about childhood memories. But that girl isn’t some elusive manic-pixie archetype. That girl has an 8 a.m class the next morning in which she can barely keep her eyes open. That girl just failed an Econ test that she forgot existed.
And on a Tuesday in July, that girl hasn’t slept in 32 hours. Like many college students during a pandemic, sleep has been replaced by a barrage of thoughts playing over and over in my head. I call my doctor, who prescribes me a sleep aid. It helps, a little.
Meanwhile, small spurts of focus keep me afloat in my summer fellowship. I miss many of the classes and find myself relying on the rare ten minutes of brilliance to come up with a somewhat acceptable piece of work. I describe to my professor-mentor, “I can only write when it comes to me.” This is normal. I tell myself. I’m a creative type, special.
Months later, I’m in an office at my fall internship, visiting the restroom every forty minutes for the life-saving fifteen-second walk down the hallway and back. I can’t stand another second looking at the computer. I love my job, I’m passionate about my work, but while my brain is looking through case reports in downtown San Francisco, my body is on a whole other wavelength. It wants to know what for dinner. It wants to go for a run. It wants to dance in the kitchen to Spencer Sutherland.
During a routine doctor’s check-up, I describe my lack of focus, intense mood swings, and destructive behaviors. “I think I have a mood disorder, but Google says anxiety. Maybe PMDD or SAD or one of the acronyms?” I explain. I’ve researched this for the last three hours and I am confident that I’ve given myself a Grey’s Anatomy worthy diagnosis. My physician asks for my family history of mental health. I realize that I honestly have no clue. My family is traditional, and we talk about mental health about as much as we talk about Russian Politics, which is to say, not at all.
That day encompassed an awkward phone conversation in the Union-square Macy’s with my mother. Our family history reads like a rap sheet of ADHD, Asperger’s, and Autism.
Immediately I am referred to a Neuropsychologist and begin a process that can only be described as standardized testing for Satan. The adorable four-year-old I babysit could re-arrange blocks into a pattern better than I could. He’d also do it in a Jedi outfit, which is a lot cooler than my “Make in Rein” Christmas-themed sweater.
“ADHD?” My mom asks, “You’ve always been focused. You get A’s, you played chess. And remember that year when you skipped five levels in gymnastics?” I do. It was all I could talk about. All I lived for. I’d practice every day until I was covered in bruises and scrapes, and my muscles ached so badly I could barely get out of bed.
My psychologist called it hyper-focus; becoming enraptured by something due to the inability to center my attention on more than one thing at a time. When I was young, it was praised as dedication, decisiveness, and drive. When I aged, they called it intensity. Being pushy.
A few weeks later, after numerous tests and interviews, I was diagnosed with severe ADHD.
I am part of a generation known as The Lost Girls: Women who hadn’t been diagnosed in their youth because ADHD in females is widely misunderstood and signs are missed. Women from an early age are taught not to get mad; to not be hyper; be ladylike and perfect. As a result, girls, especially those who manage to get good grades despite their disability, tend to fly under the radar.
We, The Lost Women, spent our childhood and adolescence plagued by labels we never quite understood. Ditzy: for the time I walked forty minutes off campus daydreaming about book plots before I realized school wasn’t actually over yet. A Liar: for when I had lost all of my credit cards in a situation so out of the realm of normalcy, my parents had accused me of being drunk. Mean: for that moment when I said terrible things to my best friend for missing my birthday party, my emotions as out of my control as the gloomy March storm outside.
The diagnoses came as shock and relief. It wasn’t an excuse, but at least it was an explanation.
After hearing my diagnosis, my doctor asked me one of the only questions I hadn’t heard during the barrage psychologist visits. “How are you feeling?”
I paused, “I’m angry.” That thought had never occurred to me before this moment. But ADHD had stolen so much from me. I caused the first girl I loved an incredible amount of pain, by taking her on up and downs so steep she couldn’t stay on board. I scared away a man of amazing morals, with impatience and erratic destructive behavior. I kissed a close friend out of impulse, who turned into a stranger. I’ve spent years studying and reading and feeling like something was wrong with me, as the information evaporated the second my eyes left the page. And no one noticed. I was alone.
“It’s okay,” my doctor said, “You’re in mourning. But this diagnosis, it’s not a bad thing. I promise you, what you’ve lost, you will get back.”
So begins something new. Not an impulse move across the country, or a whirlwind summer love, but a new type of journey. And for once I’m the one driving.
Jules Schulman lives and writes in Los Angeles.