Being diagnosed with endometriosis finally taught me how to say ‘no’

It’s not that I was unfamiliar with pain before all of this. I’ve been in and out of physical therapy since middle school. I stopped taking Advil and jumped to prescription ibuprofen early on.

My relationship with my body had been partially shrouded by a lingering fear, a knowledge that I was not the one fully in control here, ever since the first time they glued wires to my head, that first shock of loud clanking from an MRI machine. When the first seizure wasn’t the last and I realised I wasn’t like the other girls at school.

The woman I am is so different from the girl I was. Even so, I still found myself thinking of her as I waited to be rolled into surgery. I hadn’t seized in years. I was grown now. How distant from her was I though, really? I hadn’t shed the trepidation that had latched onto me, or the feeling of being estranged from my own body.

My heart rate stayed elevated. Nurses kept peeking in to see if I had calmed down any. I mumbled a “sorry” each time, didn’t let them know my legs were cold, hid how my hands shook. I made sure my eyes crinkled so it looked like I was smiling behind my mask, answered that I was fine each time someone asked, and discreetly puffed my inhaler when the stress triggered my asthma.

The thought of being an inconvenience is terrifying, whether in work, in school, to family or to my local barista. It’s led to me being quick to apologise, to constant overcompensating – always giving 110 per cent.

Hours later, when I woke up foggy and disoriented, shivering so badly the bed trembled, I was too out of it for any of that. I asked the first person who pulled the curtain open for a heater and some apple juice. I’d gone through months of medication to suppress my hormones, a traumatic ultrasound, been so bloated I looked pregnant in my graduation photos. That was the first time I’d asked for something and not felt a sting of guilt.

The surgery confirmed I had endometriosis. It’s a chronic inflammatory condition where tissue similar to the lining of the uterus is found in other parts of the body. It is a common and often misdiagnosed condition. Surgery is needed to confirm a diagnosis, and excision the only way to truly get rid of the lesions. There’s a whole list of symptoms besides severe pain that I would become familiar with. I was prescribed a painkiller called Orilissa, and told hopefully the IUD would delay the future recurrence.

What is humility? What makes a person good? I’d been led to believe that shrinking myself, ensuring that I was digestible and amendable, made me those things. This delusion was a real team effort. It was something I took onto myself, wanting so badly to be known and included, and something encouraged by the adults around me – educators, doctors, the parents of friends.

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By the time I recognised what had been placed within me, it was a hard habit to break. Only now, in my twenties, am I truly capable of appreciating what my mother tried to ingrain in me, how the Black women around me tried to lift me out of pitfalls they’d freed themselves from. I wish I could’ve read Octavia Butler or Audre Lorde a little sooner, but time comes at you as it’s meant to.

As we all stumbled our way into a post-quarantine world, I moved back to New York. To quell the pain from the nerve damage in my pelvis, I was put on gabapentin. That and Orilissa was hell. The gabapentin gave me sudden dizzy spells, and extreme fatigue. The Orilissa gave me hot flashes and drastically altered my mood. On top of that, the IUD created giant ovarian cysts. Determined to push through, I got hired for a retail job. I said yes to every invitation, to every person.

It was a life I could no longer sustain. I was forced into these realisations. I called my parents sobbing the first time I had to dip out of work, but came back to both the store and people’s faith in me intact. I said no to friends and realised the ones who faded were never fully there. I started cooking, exercising and writing again. Eventually, I managed to say no to the medication that was doing more harm than good.

Living with endometriosis for me sometimes means accumulating these little pockets of joy. Wearing something I love on days I feel uprooted from myself. Saying no thank you to mimosas and sitting alone reading in a patch of sun. There are ways other than ibuprofen to make the pain more bearable, I’ve found.