Content Warnings: medical trauma, blood loss, and injury
For most of my life, I thought I knew what strength looked like. It looked like showing up. It looked like pushing through. It looked like being the person who found a way no matter what, who absorbed impossible amounts of pain and kept moving anyway. I was very good at that. I had a lot of practice.
I am the first-born daughter of Nigerian immigrants, groomed from childhood to be a doctor—GATE program, AP everything, a 4.3 GPA that I maintained not just because I was capable but because anything less felt like a betrayal of everything my parents had sacrificed to get us here. I did not become a doctor. That decision cost me something in my family I will never fully get back. But I kept the overachieving. I kept it the way you keep a habit that was never really yours—automatically, reflexively, because stopping never felt like something I was allowed to do.
I have endometriosis and adenomyosis, conditions that spent decades turning my insides into a war zone. By the time I was a teenager, I had pain that would drop grown adults to their knees, pain I was told was normal, pain I was sent home with and told to manage with ibuprofen. I learned early that my body was going to hurt and that the world was not going to stop for it. So I didn’t stop either. I went to school. I went to work. I bled through clothing and smiled through meetings and caught flights and made deadlines and did not, under any circumstances, let anyone see how bad it actually was.
I also have Ehlers-Danlos syndrome, a connective tissue disorder that means my body doesn’t hold itself together the way it should. My joints are hypermobile. They move beyond their normal range, and the ligaments that are supposed to keep everything in place are too loose to do their job. For years, I just thought I was a little clumsy. Cute clumsy, I liked to think. I would be walking on a perfectly flat surface, and my ankle would just give out, buckle underneath me like there was something there that wasn’t. My jaw pops out of place regularly. What I always assumed was just bad TMJ is actually my jaw subluxing, partially dislocating, while I’m eating or talking or doing nothing at all. My shoulders. My knees. My fingers. The body I live in is always on the verge of coming slightly apart.
One doctor, upon examining me for the first time, commented on how velvety my skin was. I laughed. I had heard that my whole life and assumed it was because I moisturized. I am Black, and I really thought these white people just needed to discover lotion. It turned out to be a symptom. The soft, almost too smooth quality of my skin is part of the same connective tissue disorder that makes my joints unstable and my body unpredictable. The compliment I had been receiving for decades was my body telling me something was wrong in a language no one had taught me to read.
For years, I had heart palpitations. My heart would pound, race, flutter at strange times. I went to doctors. They did EKGs. Everything came back normal. And there was always a convenient explanation nearby. I was severely anemic from the blood loss. My hemoglobin measured at a 5 at my worst. Normal for women is roughly 12 to 16, so of course my heart was struggling. Of course I felt faint sometimes. Of course I was exhausted. I was running on a fraction of the oxygen I needed. The palpitations got folded into the pile of everything else, another symptom attributed to another cause, and I kept going.
What no one caught, what a standard EKG lying still on a table was never designed to catch, was that I had POTS. Postural orthostatic tachycardia syndrome. A condition where my autonomic nervous system fails to regulate my heart rate when I stand up. A regular EKG checks your heart lying flat. POTS doesn’t show up until you stand. Nobody did that test. My heart looked fine on paper. The endo and the blood loss took the blame, and POTS went undetected for years.
After my hysterectomy, the surgery that finally removed the uterus that had grown to four or five times its normal size, riddled with fibroids, the adenomyosis finally confirmed, the loudest emergency in my body finally quieted. And in that quiet, something else became audible. My heart was still doing that thing. I was still passing out. Not from blood loss anymore. Not from pain so severe it shocked my nervous system into shutting down. Something else was happening, and now we could finally hear it.
POTS. The condition that had probably been there, underneath everything, for years. The physical symptoms were hard. The unpredictability was hard. The way my heart would pound in my throat just from standing up, the dizziness, the sense that my own body was working against me. Hard. But none of that was the hardest part.
The hardest part was my brain.
I have always thought through pain. When my body was failing me—and it was always failing me in one way or another—my mind was the thing I could count on. I could be flat on my back, barely able to move, and still be sharp. Still be useful. Still be myself in the ways that felt most essentially me. POTS took that. The brain fog that came with it was unlike anything I had experienced before. Thick. Suffocating. Humiliating. I would lose words mid-sentence. Forget what I was doing while I was doing it. Sit down to think and find nothing there. The thing I had always used to compensate for everything else my body couldn’t do was gone, or close enough to gone that I couldn’t tell the difference.
I had to grieve that. I mean grieve literally. I mourned the loss of my ability to persist. The fear came next. My biggest terror was passing out somewhere unsafe, in the subway, on the street, somewhere I couldn’t protect myself. So I stayed home. I stopped leaving unless I had no choice. I stopped trusting my body to keep me upright. And then one evening, I went down four flights of stairs in my New York City walk-up to get a gluten-free pizza I had paid too much money for because I was too sick to cook. A fake bread pie. I went down to the delivery person and started back up.
I don’t remember the rest.
I woke up with my face split open. My lip bleeding. My head pounding. I had fallen up the stairs. Up, not down, thank God, because if I had fallen down that steep pre-war stairwell, I would probably not be writing this. I went to the hospital. I still have the keloid scar on my lip, symmetrical, centered, so natural-looking that most people don’t notice it. But I know it’s there. For a long time, I hated seeing it because it was a reminder of being this sick, this unsafe in my own body. Now I think of it differently.
After that, I stopped leaving the apartment. I would pass out at home and wake up on the floor with no memory of falling, no context, just suddenly horizontal, wondering what had happened. I was not safe on the stairs. I was not safe on the street. I was barely safe inside my own four walls.
And then I had to learn the thing that has been the hardest and the most important of my life.
I had to learn to rest.
Not breaks. Not pauses between efforts. Real rest. Intentional, unapologetic, prolonged rest. The kind that looks, from the outside, like giving up. The kind that everything in my upbringing and my culture and my own identity told me was weakness, was failure, was not an option for someone like me.
The only way through POTS is to stop fighting your body and start listening to it. The more I pushed, the worse I got. The more I rested, genuinely rested, not as a strategy to recover faster so I could push again, but as the actual practice, the actual work, the more I could eventually do.
I had to trick my brain into accepting this. I reframed overachieving entirely. With POTS, the way you excel is by lying the fuck down. That is the performance. That is the discipline. The person who rests the most, who says no the loudest, who stays in bed the longest and does it with intention, that person is winning. I had spent my whole life being proud of what I could endure. Now the skill was learning what to refuse. The girl who maintained a 4.3 GPA through a body that was already failing her, who was supposed to become a doctor, who performed wellness and competence for decades while her joints gave out and her insides revolted? On any given day, you might find her lying in bed. That is not a defeat.
When I look at the scar on my lip, I don’t see weakness anymore. I see the moment before I learned something most people never have to learn, because their bodies don’t force the lesson. I see the last day of the version of me who thought strength only moved in one direction, forward, always forward, through whatever was in the way.
My body has been trying to tell me things for a long time. In velvet skin that turned out to be a symptom. In ankles that rolled on flat ground. In a heart that raced every time I stood up for reasons nobody thought to look for. I spent most of my life overriding the signal. I was very skilled at it. I thought that was the strength.
I know better now. The strength is in learning to receive what your body is actually telling you. The strength is in the rest you choose when rest is the hardest possible thing. The strength is in the scar you stop hiding and start reading.
My fight looks like lying down. It looks like saying no. It looks like staying in bed on the days when staying in bed is the bravest thing I can do.
I have the badge to prove it. It’s centered on my lip, barely visible, perfectly placed. I earned it falling up.
Notes From the Judge
From the first paragraph, I was immediately drawn into this narrative and the voice. I think it’s such an impactful story with a strong message. I loved the repetition of phrases and language, as this helped to add a powerful momentum to the essay. I think it was perfectly structured, and I loved seeing the author’s personal growth in this piece. I think Maggy’s narrative sheds light on so many disabilities that aren’t talked about nearly enough, and I loved reading about their “fight.”
Maggy Adeleye (they/she) is a writer based in New York.
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