Although doctors often warn of patients diagnosing themselves online, as Benita Barden writes, when you are a young Black women accessing healthcare, inequality can mean that is the only option
It was a rainy Tuesday the day I received what I can describe as a formal diagnosis from my GP. The printer in the tiny room spluttered and pattered to produce a single sheet of printed A4 paper, which my doctor handed to me with a look of conviction. She held my gaze for a second; the way doctors do to convince you everything’s going to be fine, and said carefully “I think you have this condition, it’s called Hidradenitis Suppravtiva”.
Hidradenitis Suppravtiva is a chronic condition that cause boils, abscesses and scarring to occur in areas with hair follicles, such as the underarms, groin, or inner thighs. I had been suffering with mild to moderate symptoms this condition for almost seven years.
The whole interaction struck me as foreign, but a sense of relief rained over me. I had come to an agreement with my doctor, my experiences and my medical treatment finally began to meet paths. The whole appointment was booked because I had finally gathered the courage to sit down, describe and sternly address my symptoms in detail. But only slightly sternly, because no matter how much information I had, I was still a patient, a black female patient and I could not have full agency over what treatment would be decided for me.
The NHS as invaluable as it is, struggles greatly to deal with or diagnose chronic conditions .GP care especially is generalised, which is likely a direct result of their increasing workloads and responsibilities. As a result, there is almost a shared responsibility between the patient and the doctor to get a grasp of what treatment you need, or to know what your symptoms mean before you turn up.
“This was highlighted last year in a viral A 52-second viral clip last year that showed doctors are less likely to believe black women when they express concern with their symptoms. There is a racial bias in the medical community which is rooted in dehumanising, false beliefs”
Within this, there also persists a need to stay in your lane as a patient, to not be too insistent or burdensome. This is because the standard of treatment you receive under the current medical system is not only contingent on pain and severity but also your race/ethnicity, gender identity and weight. As objective as healthcare tries to be, it still exists within an oppressive system where racial and gender stereotyping can persist.
This was highlighted last year in a viral A 52-second viral clip last year that showed doctors are less likely to believe black women when they express concern with their symptoms. There is a racial bias in the medical community which is rooted in dehumanising, false beliefs in the biological differences between black people and white people.
A study found that white medical students who held such false beliefs gave inadequate pain treatment recommendations. These false beliefs included things such as as ‘black people have thicker skin than white people’ and ‘black people’s nerve endings aren’t as sensitive as whites’. Racial bias is insidious and subtle in our medical system. Doctors can simply overlook, downplay, or fail to acknowledge black women’s pain as indicative of a larger problem.
The initial hesitation I felt towards demanding correct care for my condition came as a result of my prior treatments, and what I had internalised as a result of them. I had received care without the acknowledgment I was suffering with a long-term ‘condition’. My treatments were always in respect to finding a resolution to a short-term problem, or my ‘infections’. But HS is not an infection and cannot necessary be treated as such. It is noted in medical literature that Hidradenitis suppurativa is a chronic relapsing disorder with ‘flare ups’.
My first appointment for a ‘lump’ forming under my arm I remember deeply. The area was tender, raw, and pulsating with pain. After pressing deep into the tissue, my doctor assured me it was a swollen lymph node, some Ibuprofen would help. After a few days the lump had burst open, it produced a small opening which poured out a thick, gooey pus, the tension disappeared. After this, almost monthly under the same armpit a tender, swollen ball would appear, growing greater and redder with time. I was cautioned about my hygiene, my shaving habits and weight, all things that were probably contributory factors but not the causes.
As a black woman, I faced a lose-lose situation. If I was theatrical and dramatised my pain in a bid to get medical attention, it would not increase my likelihood to treatment. I was likely to be shooed and my pain was to be postponed until I met the correct standards of severity. But then if I was stern and inquisitive about my doctors’ advice, I could be rendered the difficult, uncooperative black girl with an attitude.
With each incision and drainage, on the surface of the healing skin a new abscess appeared. My underarms were sore, blistered and scarred. My treatment was circular and not getting anywhere.
With every lack of response to my treatment, I internalised the negative reaction to my lack of progress. I viewed myself as a burden and began to place the onus of responsibility on myself. Perhaps I was failing to do as I was told, or I was incompetent and failed to give a cohesive explanation of my symptoms.
At the time, it was hard to understand what I was supposed to be doing. It became clear to me that I did not know what I needed, my doctor wasn’t fully aware of what I needed or capable of giving me anything beyond I was getting. And with the subtlety of my doctor’s lack of concern, the burden to prove any discrimination was on me.
Through this I began my bid to understand what was happening to my body, I did what most neurotic people do, and I began to internet search my symptoms. At the time, there existed no NHS page for Hidradenitis Suppravtiva, but somehow my cumulative searches of “armpit boils” and “abscesses in arms” led me to the name of the condition. Without ‘official’ medical sources to navigate around, I found myself drawn to personal Tumblr posts, Reddit forums and YouTube videos.
These pages were filled with like-minded individuals, people who had failed to get recognition under the healthcare services and found themselves drawn to holistic treatment, guesswork, and suggestions of how to advance one’s treatment. The community of people with HS was large and filled with many individuals of different backgrounds and health levels. It was utopian, and non-judgemental, there existed a unity between everyone as a result of this unfortunate condition and the pain it caused.
“From my experience, I believe as a black woman, it is necessary to demand that you get the care you need as soon as possible. The US Institute of Medicine Report in 2002 found that compared to white people, ethnic minorities are less likely to receive preventive health services”
All the fallacies and poor suggestions were debunked just by an individual’s presence in these forums, as each story drew in a diversity to the conditions you could suffer with the disease in. There were people who had lost weight, people who had stopped smoking, People who had moulded their diet in the belief their condition was a result of food sensitivities, all with HS still present in their lives. The focus was on ‘living’ rather than resolving.
It was this almost nonsensical unity that had given me the confidence to assert my needs, and to accept my HS as manageable part of my existence. It was this newfound confidence built by faces I would never see, that had empowered me to book the appointment which brought me the day of my formal diagnosis, a step which would push me towards the treatment I needed.
From my experience, I believe as a black woman, it is necessary to demand that you get the care you need as soon as possible. The US Institute of Medicine Report in 2002 found that compared to white people, ethnic minorities are less likely to receive preventive health services. Preventative care requires that the earlier onset of symptoms is recognised and acknowledged. And, statistically, the dismissal of black women’s earlier symptoms is visible, as late-stage symptoms disproportionately affect them.
In breast cancer for example, the percentage of late stage disease found in black African women is 25% compared to 13% in white women in the UK. Unfortunately, the only way we can resist this discrimination is to place further burden on ourselves. To be more assertive, more demanding, and proactive. It requires that we ask for a second opinion and third opinion, more tests or even a specialist. It means we come armed with research and resources that is accessible to us online. Or an ally, to work in our interests when the pain is too much. Until the complex systems of racism and sexism that prevail are untangled, it is imperative that we do all we can to access the basic right to adequate healthcare under the NHS.
Benita is a recent Media Graduate and writer from West London. She writes about music, current affairs and culture.