Illustration by Emily Zhang
A little over 24 hours into a new diagnosis, I’m walking back and forth, back and forth, waiting for my bags at the always-slow baggage claim on the bottom floor of Chicago’s Midway airport. Two checked bags, that’s all I need. These bags aren’t getting here fast enough, and fast is important because, from the moment I got off the plane and trekked through the fake hallway from plane to airport, I’ve been tilting my head back, telling my eyes that we cannot cry in Midway’s fluorescent lighting.
The funny thing is that this new one isn’t a bad diagnosis. Just chronic. It sits on top of the other three or four chronic conditions I’ve already racked up before even hitting 21. Everything in my world ends up being chronic. My body, my anxieties, my writing, my art. There’s never a stopping point. Never a rest. Never anything acute.
Was I this upset the last time a lifelong diagnosis was read out to me? I’m not sure. I remember being 14 or 15, and utterly embarrassed when the word fibromyalgia was first said to me. I felt like the butt end of every awful, cheesy drug commercial. But I wasn’t angry.
But that wasn’t the first time I was given a chronic diagnosis. It goes back further. I define growing up not just by school years but by what chronic pain I was experiencing. I’ve shuffled in front of doctors since before I was born. It all came to a head with headaches and gut problems in fifth grade. However, it wasn’t until the tail end of middle school and the start of high school that I was given concrete names for the things wrong with me. Why did I think that nearing 21 would mean I was done with new names and conditions to memorize?
I went home to New Orleans for a CT scan and came back to Chicago with the name of one more condition to get used to.
My doctor, the same one I’ve been seeing for somewhere around seven years, told me I’m so good at managing it all. I nodded along and told my doctor that I’m tired of managing things.
And now I’m in Midway. And my bags are still not here. And the carousel hasn’t even started moving.
Fibromyalgia was embarrassing, but it’s become a comforting catch-all.
Antiphospholipid syndrome always looms on the horizon, a constant reminder of my family’s clotted blood and my older sister who died before she was born.
Porphyria, even when it lands me in the ER, at least gets to be a joke about vampirism I can sink my teeth into.
The chronic migraines in my head and abdomen at least have become familiar companions.
So why does this new one bother me? Medical tests usually come back normal, and normal is often worse than an answer. That’s what I was expecting with this CT scan to explain my weight gain, my irregular periods, my worsening digestive system, and a slew of other news. I expected to be told my test was normal. There was nothing there. No concrete evidence, only at best a guess.
Instead, they found cysts growing on my ovaries.
Finally, the baggage carousel starts turning. Thank fucking god. My two bags come tumbling down the chute. They start their long, slow-moving circle towards me. And then I’m not thinking about the bags. Then I’m thinking about being 10 years old, the first time my chronic symptoms reached a boiling point, and the same year all the girls were brought to the cafeteria to be taught about periods. We poured Kool-Aid on pads and were given panty liners to take home. Before we were ushered out of the room, we were told we weren’t allowed to talk to the boys about what we’d been taught.
No one told 10-year-old me what size my ovaries were supposed to be or how they were supposed to grow. But then again, no one told 10-year-old me anything useful about my body.
I can’t get my bags off the track by myself, and this once again causes my eyes to drip warning tears. As a kid, I took pride in trying to beat my dad to get even the heaviest bags off the track before him.
Some guy with a scruffy beard and short hair has to help me because he watches me chase down the sewing machine bag as it keeps moving out of my grasp. I apologize two or three times, habit. A bad one.
The bags feel like they weigh more than they did when I checked them in New Orleans. They don’t, of course. But everything feels heavy right now. And my stomach squishes out, pudgy in a way it hasn’t been since middle school. For the last few years, I’ve been skinny with soft edges from medications and lack of appetite. But since October, I widened in a way that gives my clothes an unpleasant hang. It doesn’t seem to matter that everything I eat radiates cramps through my abdomen. That’s how I ended up with a CT scan scheduled the day after Easter in my home city, over 800 miles from Chicago.
I wheel my bags towards the exit with the taxis.
My body defines me more than any other aspect of my identity. No matter what, my body is who I am. If I didn’t write about being Jewish or didn’t wear a silver Star of David, no one would know. The rest of my family let go of that identity.
I could hide liking girls if I had to. Girls would probably like me better if my body was built in a way that worked properly. Even with my girlfriend, a girl I really do think I love, who I’ve been dating for seven months now — I can’t tell her that when we hold hands, the joints in my knuckles ache and ache the whole time.
I stand in line for a taxi. Chicago’s wind chill is creeping up the sleeves of my leather jacket and blows through the skirt I have on. I’m dressed for New Orleans, but the cold feels good on my skin. Like ice cubes in milk.
My gender is as raw as the IV bruises on my arms. Is that why this new diagnosis makes me so upset, so angry? I know anyone who meets me sees a girl. And why shouldn’t they? I look like a girl. I talk like a girl. It doesn’t matter that I’ve been using “they/them” since I was 14. Most people don’t remember my pronouns anyway
But most of that is water off a duck’s back. I know I am both a girl and not a girl. I don’t feel a need to label and microlabel. I’d rather swim in the umbrellas of “queer” and “dyke.” So, my body and I made a deal. I wouldn’t go on hormones, I wouldn’t get surgeries. I wouldn’t put it through anything more than I had to.
The most ironic part of this whole thing is that this new condition is responsible for my testosterone levels creeping up, and even though that is likely causing some of my newest wave of problems, I don’t want that level to shrink back down. I want to have a number higher than the average woman’s but lower than the average man’s.
My best friend transitioned. My girlfriend did, too. I’ve seen how happy they’ve both gotten as their bodies grow closer and closer to their desires. Each traveling in opposite directions to nonlinear destinations. Meanwhile, my body and I stood on the other side of that shore, agreeing we didn’t need to medically transition. I learned to enjoy my boobs, my hips, the feminine features of my face.
And I made small adjustments, not shaving my legs, a tattoo here and there, a constant rotation of hair colors and cuts. I grew into myself. I didn’t need to put my body through anything more than it was already going through. We came to understand each other, my body and I.
The taxi line moves up slowly. There’s a woman with an enormous baby blue suitcase ahead of me. I wonder if she’s ever laid down and stared directly into the red laser inside the CT tube that you’re told not to stare at.
It’s like my body went back on that deal. I could handle my joints, my blood, my liver, my stomach, my intestines, my brain, my nerves — all not working, slightly out of sync even with each other. But all the shit that biologically makes me a girl was supposed to be fine. And it’s not. And now I have to wait for a blood test to know what new medications I need to be on. And if I can’t even tell my girlfriend how my knuckles ache when she holds my hand, how do I tell her I’m terrified of what this means for having kids someday?
We were in one of our beds the last time we talked about kids. I can’t remember if it was hers or mine. She cried, and I petted her hair. She so badly wants to carry children someday, and she likely won’t ever be able to. I don’t even know if I want to have biological kids. However, the idea of this new diagnosis combining with my blood disorder to bar me from it makes me even more nauseous than normal.
A woman in an orange reflective vest yells for me to take the yellow cab pulling up. The man driving it gets out and lifts my bags into the back of the car. I don’t try to help. I just find myself suddenly sitting in the back of the taxi, the sticky, plastic fake leather clinging to the back of my legs.
The side effects of the new meds will probably be just as bad as the pain I already get every month. But they’ll solve the possible insulin resistance, hopefully, maybe, who knows. Maybe they’ll just send me back into serotonin syndrome. SSRIs and SNRIs create a constant game of tetherball, battling me around, bruising and beating me up when I combine other meds with them. But I can’t cut the string because I’d rather deal with this than go back to being 13, lying beneath the spigot of the guest bathroom’s bathtub as freezing cold water dumps itself onto my face just so I could feel the water instead of feeling.
I tell the taxi driver my address, and he asks me how my flight was. I’m not sure what to say. Not that it matters either way. Then he asks how my trip was, if I was vacationing. I say I was visiting family, which is true, but not the reason I went home. Then, for a second, I think maybe I could unload all of this onto him.
When I got off the plane, I went through a list of all the people in my life I could call to talk to. My mom. My dad. My best friend. My other best friend. My girlfriend. My ex. I didn’t call anyone. I wasn’t even sure if I could handle writing any of this. This is out of character for me. I use every part of my life, relationships, and body as fodder for art and writing. Why should my ovaries be where I draw the line?
But I don’t unload all of this onto the taxi driver. I just put my earbuds back in my ears and unpause an audiobook, thinking maybe it will be easier to focus on someone else’s story tonight.
The $40 drive doesn’t get me out of my head. Neither does the audiobook.
The taxi driver helps get my luggage out of his car. I thank him and fail trying to find my keys. The plush toucan keychain gets stuck underneath a book in my computer bag. But I finally get them out and walk into the lobby of my apartment building, lugging my two rolling bags behind me. I park my bags in the lobby, press the button to the elevator, and wait.
The elevator doors open and the fake voice inside it chimes out, “Going up.”
Things will not be easier tomorrow morning. I will wake up at 11, slowly peel myself out of my sheets, and get dressed. Change outfits as least twice, pack up my materials for class, and then walk to school. I will make sure to smile when I talk to my friends and tell them my trip home was great without letting the cysts on my ovaries tumble out of my mouth. I will make sure to have smart-sounding answers in the class discussion. I might even wear eyeshadow and mascara to disguise how exhausted my trip home left me.
But things will not be easier tomorrow morning.
I take my suitcases into the elevator and press four. The metal room rises.
The elevator arrives on the fourth floor. I walk down the long, carpeted, and dimly lit hall. I can hear my cat meowing from inside my apartment. As I turn the lock to my door, my phone rings. I fish it out of my pocket. My mom is calling.
I answer and say hi.
She asks me if I’m home yet.
I tell her I am.
She asks me how the flight was. I tell her it was fine, just bumpy.
She asks me how I am.
I hesitate. I set my keys down inside my apartment and wheel my suitcases inside. My one-eyed black cat rubs his head against my arm.
She asks me how I am.
I take my shoes off and throw my jacket in the direction of my coat hanger.
She asks me how I am.
I tell her I’m okay.
She says she loved having me home.
I tell her it was fun to be home.
Unlike most nights when she calls, we don’t stay on the phone long. We say I love you to each other a handful of times, and then I hang up.
