by Taylor John-Lewis
edited by Sarah Desouza
As a fat Black woman with a Type 1 Diabetes, I am accustomed to the healthcare system failing to listen to its Black patients. For years, I have felt that I have been “doctoring” myself, even finding myself, in the worst of times, catching my doctors’ dangerous mistakes. It is an ongoing struggle to visit a doctor’s office with a specific concern like the flu and not have my weight or my diabetes end up being the main focus of the conversation. The constant dismissal and unhelpful or unrelated advice has made me extremely hesitant to trust healthcare professionals.
One week after my 13th birthday, I thought I was dying. I experienced the most debilitating pain I’ve ever had that caused me to collapse on the floor. I remember begging my parents to take me to the emergency room in case the pain I was experiencing was not due to my period but an inflamed appendix on the verge of exploding. They assured me the pain would disappear after the first 48 hours. I suffered through the next 4 days with light bleeding but almost unbearable pain. For 6 more months, I suffered with this horrible pain, not only appearing once a month like a normal menstrual cycle, but even two and three times a month. I had no way of knowing when I would experience these terrible menstrual cramps. It would catch me at times in middle school in the middle of day, forcing me to sink onto the classroom floor and double over until I had the strength to make it to the nurse’s office and go home.
Seeking answers, I visited my primary care physician and explained to her in detail my menstrual issues. I was brushed off with reassurances that this was normal, the pain would get better as I age or after giving birth and the only helpful thing that I could do would be to lose weight. I left the office feeling hopeless, without an option other than to suffer through this at my body’s will. She had made it sound like the horrible pain I was experiencing was my fault, and all I could do was believe her.
The pain continued to disrupt my everyday life preventing me from attending classes my first year of boarding school. It was embarrassing to have to deal with pain in public. Tears would involuntarily flow down my face as I clutched my stomach, well-meaning friends would inquire about my well-being, and others would give me weird looks. The bathroom became my refuge. I would lock myself in a stall and sink down into the floor as I experienced heavy waves of nausea and dizziness from the pain. At times, when I finally walked back into the classroom, my classmates and teachers would say things like “We were just about to send someone to make sure you were ok. You were gone for so long — what happened?” and I would put a smile on my face or deliver a little laugh to make it more believable that I was fine.
Spring break of my freshman year I met with a gynecologist for the first time. Once again, after explaining my symptoms and menstrual irregularities, I was told it was normal and given my first prescription of birth control to try for six months to see if it helped. It did not. I went back to the gynecologist again only to be reassured my experience was expected and given a different type of birth control to try. Though I did endure a very painful transvaginal ultrasound, there was nothing on the screen that would explain my suffering. Over the span of two years, I tried 4 different types and brands of birth control, none of which alleviated my pain and only seemed to make me gain weight.
The weight gain was especially tough for me to deal with since I knew that every future doctor would come to focus on my weight rather than my pain even more than they already did. Up to this point in my medical journey, I had gone to drastic lengths to try and lose weight through diets, and I was successful. The pain remained, though, even as I had been convinced my weight loss would provide a tangible solution.
I continued to search for relief. Even the prescription for 800mg Ibuprofen three times a day that my gynecologist had given me did not make a dent in the pain I suffered from. I found myself maxing out doses of over-the-counter medicines only to get at most 1-2 hours relief. I dreaded my time of the month to the point where I would grow depressed and anxious in anticipation of the pain that stuck to no schedule and had no remedy.
As month after month went by, I could tell the nurses were becoming doubtful of my pain. Even after a while, my own parents thought I was exaggerating. Some of my friends tried to sympathize but quickly grew tired when unpredictable instances of pain would hit during an outing which would subsequently be cut short. I started to feel lonely and internalize the attitudes of those who I had shared my experiences with. Maybe I was exaggerating. Was I begging for attention? Is this amount of pain normal and I just have a low pain tolerance?
After my sophomore summer, I decided to try another type of birth control: the hormonal IUD. The doctor explained that this would be one of the last options I had to manage my pain. When school resumed that fall of 2017, my period became more erratic and appeared less often. However, when I did have my menstrual cycle, the pain I had experienced was the same, if not worse. At one point, in one of my worst moments that year, I was rushed to an emergency gynecology visit and continued to meet with her, despite the lack of answers.
I went through the rest of my boarding school years suffering from immense back pain, ovulation pain, and severe menstrual pain which radiated down my legs and even burned at times. I gave up on gynecologists listening to my experiences and taking my pain seriously, deciding to instead ‘doctor’ myself by researching different avenues and causes of my pain. I came across a condition called endometriosis and after joining several communities of women who suffered from endometriosis, my loneliness started to dissolve. There were others experiencing symptoms almost exactly like my own. After a year of researching the diagnosis procedure for endometriosis, I decided to start anew with a Black female gynecologist and present to her what I thought was happening to me.
After a particularly hard freshman semester of college in which my cycle-related pain often left me stranded on couches in the dining hall, in urgent care rooms, or unable to walk, all the while being dismissed by doctors on campus, I made my appointment. I was more than excited to visit a doctor who shared some of my identities, but I found the end result of the appointment eerily similar to my previous visits with my other doctors. Again, I found myself almost begging her to conduct a diagnostic laparoscopy on me, only to have her say that because my ultrasounds were clear it was unnecessary. Begrudgingly, after my continued pushing, she agreed to set the laparoscopy for a later date. However, given my gut instinct, how I left every appointment crying and unheard, and how she described the procedure and possible treatment in the pre-operative visit, I ultimately decided to cancel and find a new gynecologist, this time an endometriosis specialist.
At my first visit, I decided to let the doctor decide her course of action without any input from me or the other gynecologist I had seen. I didn’t tell her I thought I had endometriosis or how I cancelled my exploratory laparoscopy last minute. She collected my medical history verbally from me and questioned me in-depth about my pain. After hearing my symptoms, she said “I am so sorry, this sounds horrible.” Upon hearing that, I broke down. She was the first doctor who had ever sympathized or understood the nature of my pain. After many reassurances, she told me she suspected I had endometriosis and would perform a diagnostic laparoscopy as soon as possible. My doctor performed an ultrasound using a drastically less painful technique and then presented me with the data. She made sure we were on the same page every step of the way and even enrolled me in an endometriosis study. I left that appointment feeling shocked that for the first time in 6 ½ years, I felt confident in my doctor’s treatment plan and that I did not have to present the results of my own ‘doctoring’ to her.
Unfortunately, up until they placed me under anesthesia, I still doubted my own symptoms. Questions of my authenticity in describing my pain and worry that I had done all of this advocating for myself for nothing, sent my blood pressure up right before the operation.
One and a half hours later, I woke up in the post-operative room, waiting for the anesthesia to wear off from my laparoscopy. Floating in and out of reality, the first words I uttered were “Did they find something?” I must have repeated it several times to my post-operative nurse, until I was awake enough to process the answer. My doctor had found and excised endometriosis and other growths. I was not exaggerating. I did not have a low pain tolerance. I did not advocate for myself in vain. I was not seeking attention. My pain was real. My suffering was real. Management and treatment for my pain exists.
Black women, like myself, should not have to fight to receive care for their health concerns. Fat people, especially fat Black women shouldn’t be treated as if they are the cause of their suffering. It is disheartening that Black women must continue to fight, in sickness and health.