Medical racism. Two words that once held no meaning for me—until one day they did. For ten long, seemingly never-ending years, I experienced what I—and many others—would categorize as the most traumatic period of my life. Because of these two words, I believe I went undiagnosed with a rare congenital bone disorder for a decade.
It all began when I was thirteen and started experiencing sharp, terrible pain in my lower spine. At that time, I was a competitive swimmer, training six days a week. Everyone around me attributed my pain to growing pains. My coaches thought I just needed more protein and a stronger core. Dry land practices became more intense, and while I seemed to be getting stronger, the pain only worsened. By the time I turned fifteen, I had quit swimming because I couldn’t handle the pain anymore. By sixteen, I experienced my first of many long-term hospital stays.
I still remember every detail leading up to that stay. It was my senior year in high school, and I was at a prom committee meeting at the front of the school. My back had been hurting unbearably that day, and suddenly, I fainted in the middle of the meeting. My best friend panicked, and while I knew something was wrong, I wasn’t sure what it was. She wanted to call an ambulance, but I didn’t think all that drama was necessary.
I should mention that I also suffer from sickle cell disease, which is typically found among Black and Brown people. Because of this, my mom, who also suffers from it, always told me to insist on being treated at SickKids Hospital in Toronto, where all my specialists were and where she felt I would receive the best care. With this in mind, I asked my best friend, who had just gotten her G2 a month before and had her parents’ car, to drive me to the nearest GO train station so I could take myself to the hospital.
Once I arrived, that visit was the only time I was treated immediately. Sometimes I wonder if it was because I was a minor, or because my pain was so severe that I threw up in the ER waiting room, or because my pediatric hematologist, a Black woman, was on call and demanded that I be admitted immediately. Either way, it was the only time in my life that emergency medical staff treated me with urgency. That hospital stay lasted two weeks.
By the time I was 19, I had been in the hospital on average every 6 months, always for the same back pain. Every time I ended up at the hospital the visits always went the same. They would leave me in empty waiting rooms for hours on end while I cried and begged for help. When I finally got admitted they would just give me a bunch of pain meds, maybe do an x-ray if I was lucky and then they would tell me that they can’t find anything wrong and that it is mostly just anxiety induced pain, and that all they can do is manage my pain and let me go. I always wondered how it was that this extreme, debilitating pain could be boiled down to something so simple as anxiety. It never made sense to me. And I now know that it was never my anxiety. Hospital staff saw me as a Black woman making up her pain for attention, for drugs, or simply to waste hospital resources.
The lack of care only escalated from there. One hospital ignored the fact that I was a sickle cell patient experiencing what my mom and I at the time believed was a crisis. I remember being in so much pain that I collapsed on the floor. I was crying, screaming, and begging for help. The triage nurse, who’s name I will never forget, told me to stop making a scene and sit down on the chair until they called my name. The only problem was that I physically could not move. My mom ended up coming to the hospital and finding me on the ground. She asked the nurse why I hadn’t been provided with oxygen, or hooked up to an IV, given my sickle cell. To which the nurse replied that she had told me to get off the floor, take a seat and wait for my turn. My mother grabbed me, called a cab, and had me transported to another hospital that would hopefully take better care of me. We filed a formal complaint about the triage nurse, received verbal apologies from the head nurse, and that was the last of it.
Another hospital denied my care all together. Just like all of the other instances, I went to emerge with the same debilitating back pain. I waited for hours, was finally seen, given pain meds, had blood work done, and an x-ray, all of which came back fairly normal. I remember the doctor, a middle-aged white woman, coming back into the room I was in and telling me that I was fine, there seems to be nothing wrong with me, and that I “had received a million dollar work-up”, and there was nothing more for them to do for me. I will never forget sitting there hysterically crying in front of this woman, because I couldn’t bare to imagine having to live any longer with this pain. I’ll never forget that her immediate response to me crying was to tell me if I really needed it they could send me home with some prescription tylenol, to which I just blankly stared at her. She missed the entire point. I could care less about the medication, I wanted the pain to stop. I needed it to stop.
I left that hospital and went home feeling so discouraged. I felt like these doctors couldn’t be bothered to try and help me. All that they could see was a Black woman who was seemingly healthy, presenting with pain that they couldn’t physically see an explanation for, so I must be making it up, or seeking drugs. It was like these doctors couldn’t be bothered to actually try and find out what was wrong with me. Providing me with that much care, went above and beyond what I was allowed as a Black person. And they insisted on reminding me that I should be grateful for what I received, stop bothering them and go home.
By the time I was 21, I was hospitalized every 3-6 months. I’ll never forget one of my last hospital visits, where I refused to be discharged. The doctor eventually came to speak with me about my refusal. I emotionally explained that I was exhausted from the pain and needed it to stop. The doctor accused me of seeking drugs and suggested my symptoms were likely due to anxiety since they couldn’t find anything wrong with me. I remember asking him which 21-year-old would choose to spend their young adulthood in and out of hospitals. I explained that missing out on life’s major milestones due to a mystery illness was far from enjoyable. I asked him why he became a doctor if he was going to be dismissive of “invisible” pain, rather than working to advance medicine by figuring out what was wrong with me.
The look on his face when I broke down crying from exhaustion and frustration is something I’ll never forget. It was clear that the medical system saw me as nothing more than a drug-seeking young Black woman.
It wasn’t until I was 23 that I finally found a doctor who believed me. This doctor worked tirelessly to uncover my condition, and eventually, he did. After ten long, painful years, I finally received a diagnosis. I was seen, heard, and believed. The sense of validation I felt when I received that diagnosis is beyond words. But the irreparable harm and trauma inflicted by the Canadian medical system, due to the inherent biases related to the colour of my skin, is something I can never fully articulate. This trauma fuels my passion for advocating for Black women because, ultimately, if we don’t advocate for ourselves, no one else will.
And with that I say, that the struggle for Black women will persist until the world evolves, recognizes us as the full and complex humans we are, and eradicates its deep-seated biases. Our experiences are a testament to the systemic inequalities that continue to shape our lives, particularly in healthcare. Until society makes a concerted effort to understand and address these biases, the pain and challenges we face will remain. It is only through collective empathy, systemic change, and unwavering advocacy that we can hope to create a world where every individual is treated with the dignity and respect they deserve. For now, the fight for recognition and justice continues, fueled by the resilience and determination of those who refuse to be ignored.
