As an 18-year-old Black woman with one less ovary and fallopian tube than the average female reproductive system, I’ve had to learn the hard way why advocating for myself at the GP, hospital or indeed, any medical setting is so important.
Let’s start with some background. A study by Hoffman et al. (2016) investigating the racial bias in the assessment and treatment of pain, based on false beliefs about biological differences between Black and White people, found that residents who endorsed the view that “Black people have thicker skin” minimised Black patients’ pain and made less accurate treatment recommendations compared to their White counterparts, even when they reported the same intensity of pain.
If this isn’t enough to convince you of the racial disparities in healthcare, then let’s touch on one of the atrocities that Black bodies have been subjected to, affirming the history of abuse in the context of healthcare. From 1932-1972, the “Tuskegee Syphilis Experiment” saw African-American men infected with syphilis. Following the institute’s lack of funding, the “free healthcare” the men were promised for study participation was withdrawn and despite Penicillin being identified as a cure for the disease in 1947, it was withheld from them as treatment. Human rights violation, countless ethical implications. If this isn’t discrimination based on ethnicity and targeted low socioeconomic status, enlighten me on what is.
Another account, just to make it really sink in; Serena Williams recently revealed the postpartum complications she suffered following the birth of her baby girl. When new motherhood is expected to be one of the greatest gifts that life can bring, hers saw her bedridden for 6weeks. Why? Because her medical history was overlooked. It becomes a point of question how we are meant to place our lives in the hands of medical professionals when Williams was left to diagnose her own pulmonary embolism. Though I can’t say I suffered as great an ordeal as Williams, I too have my own story to tell of my experience of serial misdiagnosis and subpar standard of care.
For 3 years, I was in and out of appointments complaining of chronic abdominal pain. With that you’d expect to have some routine checks run; blood work, perhaps an ultrasound, just to rule things out by process of elimination. Now, I do understand these things are expensive, what with the NHS being under enough pressure as it is but, you can understand the frustration in having my affliction dismissed. With every appointment, I’d report that things were getting progressively worse yet, all I was prescribed was analgesics when clearly, the pain was a symptom of something much greater.
Nobody likes an “I know it all” expert, so frankly, I would’ve much preferred my doctor say, “I don’t know what’s wrong with you” than jump from diagnosis to diagnosis. Spoken with some misplaced certainty, first, I was just experiencing “menstrual cramps” then, I was simply “constipated,” or what has grown to be my favourite deflection, I should “lose some weight”. Years of medical school, and for what? Apparently to insult me.
After years of turmoil, enough was enough. A few years wiser and WebMD clued up, I suspected I had an ovarian cyst and took it upon myself to request an ultrasound to preserve my own sanity – I had truly started to believe that the pain was in my head. But lo and behold, they discovered a 12cm borderline ovarian tumour, responsible for the years of persistent headaches, backaches, nausea, heavy and irregular periods; the list goes on.
Unfortunately, the tumour was suspected as cancerous, (later found to be of low-malignant potential i.e., borderline) so, cost me my right ovary and fallopian tube.
With the diagnosis I’d been waiting for, you’d think my trauma would dissipate, but then came the postoperative complications.
There’s a 66% greater chance that you won’t receive painkillers in the ED if you’re Black compared to if you’re White (Todd et al., 2000). In spite of this statistic, I was lucky enough to be given an epidural numbing me from the waist, down. Barely 12hrs post-op, my epidural catheter disconnected, and I was left writhing in discomfort. When I tell this story, I always make the point that “they might as well have done the surgery with me wide awake”. That’s the only way I can explain the pain.
The nurse assigned to my bed did not rest that night, and I’m not even sorry. I was told I shouldn’t be able to feel anything, so why does it feel like people are sword fighting in my abdomen? Nobody checked that the epidural was administering as it should, and in my delirium, I hadn’t noticed that the feeling of sweat on my back was actually the painkillers I so needed, spilling out onto my sheets. It wasn’t until the morning that a different nurse, (I will never forget her), peeled me away from my now, soaked sheets, to discover why tears were streaming so relentlessly from my face, having now allowed myself to breakdown in the presence of a fellow Black woman with whom I knew was more likely to acknowledge my feelings.
I am by no means slating the NHS nor, any healthcare professional as they can only know and do so much and I wholeheartedly appreciate the access to free healthcare.
Nonetheless, I discharged myself 4 days later.
The lesson to be learnt here is, don’t let anybody convince you that your pain is fictitious. Become your own doctor if need be, and by that, I mean do yourself and your doctor a favour by coming prepared to any appointment with a list of your symptoms and any questions, both to help paint a clearer picture of your condition and grant yourself some peace of mind.
The quality of care you receive should not be contingent upon the colour of your skin. Be proactive in the maintenance of good health and perhaps, unlike me, you’ll be able to keep most, if not, all your organs intact!
Written by Anita Nkadi
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