Doctors refused to diagnose my chronic illness because this world ignores Black women’s pain
I was in pain every single day and no one believed me.
by Riya Jama
The first time I experienced debilitating cramps. It awoke me from sleep. I will never forget how stunned I felt by the intensity of the pain that engulfed my pelvic area, forcing me to crawl on my hands and knees to get help. If I could have screamed, I would have, but my vocal chords were gripped tightly from the pain.
When I finally reached my family, they knew something was horribly wrong, despite my inability to communicate it to them, and they rushed me to the emergency. I spent over eight hours in a suffocatingly small waiting room, stuffed with endless people also hoping for relief, only to be told in the end that the severe cramps making me black out were nothing more than regular menstrual pain. I was instructed to purchase over the counter pain pills to manage it.
I had to be told this news several times because I kept losing consciousness. Again and again, I was told that nothing would be done for me, but it took a while for me to understand that they weren’t going to do anything to help me. I burst into tears at how helpless I felt when I finally understood this.
Those nights happened repeatedly and each time they ended with my pain not being taken seriously and my requests for a thorough examination being rejected. I would collapse in a heap of tears onto the ground and a family member would take me home, sobbing. To this day, I still have intense anxiety about going to emergency rooms, fearing that I will simply be shoved into a small room and told that nothing is wrong when I know otherwise.
I was officially diagnosed with endometriosis after a full year of my pain being ignored, being violently gaslight, and being forced to be my own advocate despite my unrelenting chronic pain.
An endometriosis diagnosis normally comes after a series of pelvic tests that lead up to a laparoscopy, which is a more visual examination of the abdomen during an ultrasound. By the time I finally saw someone willing to hear me, my uterus was in such a chaotic mess that I didn’t need any invasive procedure to be diagnosed, only the ultrasound.
Throughout all of this, I had to constantly work to find the mental energy I really did not have to continue to fight to be heard. In the end, I even had to fight for the ultrasound that led to my diagnosis, after having to research my own symptoms. It was a very dehumanizing ordeal that created a deep seeded distrust of doctors and hospitals. I was in pain every single day and no one believed me.
My gynecologist later shared with me that my pain levels at their worst were on the same level of someone giving birth. Imagine that. I had pain that routinely kept me bedridden and paralyzed, and those who were suppose to medically care for me were telling me it could be managed through an over the counter, non-prescription solution. The same pain that made me have several blacking out episodes. The same pain that caused me to lose nearly twenty pounds within two weeks due to the fact I couldn’t eat.
Had it not been for the amount of time and effort I threw into figuring out what was wrong, trusting my own intuition, and being supported by my family, I would have been even worse off. Untreated endometriosis leads to more awful cramps, pain during sex, infertility, and so much more.
At one point, after dealing with non-stop pain for years, I requested more information on an hysterectomy, but was told I was too young to get one and I should reconsider since this will remove my ability to have biological children. As if I haven’t already considered the weight of the decision. As if I wasn’t fully aware of what I was asking for. My gynecologist wanted to make sure I didn’t get a surgery that could potentially give me some relief, because of his and the medical industry’s need to police women’s bodies, especially our reproductive choices.
I recognize that I am immensely privileged because I have access to universal healthcare living in Canada. I only had to pay for my medicine. The healthcare in this country is definitely not perfect but I am given the luxury of medical expenses being one less stress I have to deal with. I cannot begin to imagine where I would be if I had to pay medical bills out of pocket only to be still disrespected and gaslit by the doctors.
Black women are disproportionately affected by racism from a systemic and institutional level. Racism, braided with a strong layer of misogynoir, is why in a time of great medical advancements, we are being left behind at alarming rates.
Let’s keep having open and honest conversations about medical racism, and how it has deadly effect on Black women, who experience the highest risk of our pain being ignored. Especially in the maternal ward and with reproductive-related illnesses, like my painful journey with endometriosis that will never end.
There’s no valid reason for Black women to continue suffer because our pain is made invisible, and we need to keep calling attention to the systems that perpetuate this.
Riya Jama is a visual diasporic storyteller based in Toronto by way of Somalia with a lot of feelings and deep need to share them all unapologetically with a fist raised high in Black solidarity.