It’s not like 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 switched to prescription ibuprofen early.
My relationship with my body had been partially overshadowed by a lingering fear, the knowledge that I hadn’t been in full control here since they first taped wires to my head, since the initial shock of a loud rattle from an MRI machine . When the first seizure wasn’t the last and I realized 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 thought about her while waiting to be wheeled into surgery. I hadn’t grabbed in years. I was grown up now. How far was I really from her? I hadn’t shed the fear that gripped me or the feeling of being alienated from my own body.
My heart rate stayed elevated. Nurses kept peeping in to see if I’d calmed down. I mumbled an “excuse me” every time, not letting her know my legs were cold, hiding how my hands were shaking. I made my eyes pucker to make it look like I was smiling behind my mask, replied whenever someone asked me I was fine, and discreetly puffed on my inhaler when the stress triggered my asthma.
The thought of being an inconvenience is terrifying, whether it’s at work, school, family, or my local barista. This has led to me apologizing quickly, constantly overcompensating – always giving 110 percent.
Hours later, waking up groggy and disoriented, shaking so bad the bed was shaking, I was too exhausted for all of this. I asked the first person to pull the curtains for a heater and some apple juice. I had been on medication for months to suppress my hormones, a traumatic ultrasound, was so bloated I looked pregnant in my graduation photos. That was the first time I’d asked for something without feeling guilty.
The surgery confirmed that I had endometriosis. It is a chronic inflammatory condition in which 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 required to confirm a diagnosis, and excision is the only way to truly get rid of the lesions. There is a whole list of symptoms besides severe pain that I would become familiar with. I was prescribed a pain reliever called Orlissa and was told that hopefully the IUD would delay future recurrences.
What is humility? What makes a person good? I had been tricked into believing that shrinking, making sure I was digestible and adaptable, made me these things. This deception was a true team effort. It was something I took upon myself because I so desperately wanted to be known and included, and something that was encouraged by the adults around me – educators, doctors, friends’ parents.
When I realized what had been put into me, it was a hard habit to break. It’s only now, in my 20’s, that I’m really able to appreciate what my mother was trying to inculcate in me, how the black women around me were trying to lift me out of pitfalls from which they had freed themselves. I wish I could have read Octavia Butler or Audre Lorde a little earlier, but the time is coming as it should.
As we all stumbled into a post-lockdown world, I moved back to New York. I was given gabapentin to help control the pain from nerve damage in my pelvis. That and Orlissa was hell. The gabapentin caused me sudden dizzy spells and extreme tiredness.
The Orlissa gave me hot flashes and changed my mood drastically. In addition, the IUD created huge ovarian cysts. Determined to assert myself, I was hired for a job in retail. I said yes to every invitation, to every person.
It was a life I could no longer endure. I was forced into these realizations. I called my parents sobbing the first time I had to drop out of work, but returned both to the store and to people’s trust in me. I said no to friends and realized that those who faded were never quite there.
I started cooking, exercising and writing again. Finally, I managed to say no to the drug, which did more harm than good.
For me, living with endometriosis sometimes means piling up these little pockets of joy. On days when I feel uprooted from myself, I wear something I love. Say no thanks to mimosas and sit alone and read in a patch of sun. I’ve found that there are ways other than ibuprofen to make the pain more bearable.
https://www.independent.ie/life/health-wellbeing/being-diagnosed-with-endometriosis-finally-taught-me-how-to-say-no-41928000.html Being diagnosed with endometriosis finally taught me to say no