Sickle Cell Pain Is Made Worse by Stigmas and Bias
Living with sickle cell disease means dealing with constant fatigue and painful vaso-occlusive crises. These symptoms can impede on a normal life with wide-reaching implications, such as limiting social or work capabilities. Unfortunately, sickle cell also carries a stigma, both in life and within healthcare communities. Getting some healthcare professionals to understand how their actions affect sickle cell patients is a hard task.
I’ve written about how a prolonged wait for pain relief caused me irreversible avascular necrosis damage to my hips. As a result, I’ve gone from someone who used to frequent the gym, dance, box, and go to carnival parades to having very limited (and extremely painful) mobility. I am only 32 years old.
Health-related stigma occurs when people with a particular condition are subject to negative stereotypes within a healthcare setting. It’s often stated that the stigma attached to sickle cell is compounded by racism. I’m not sure there’s a foolproof way to test this belief, but I will say that many sickle cell patients I know believe it to be the case.
I also think there’s an underlying belief that Black people don’t feel pain in the same way white people do, and this belief is heavily steeped in racism that dates back to slavery and colonialism. I think this belief has crept into healthcare, and many healthcare professionals who perpetuate this belief, even unknowingly, aren’t aware of its roots in the history of racism.
Because one of the only effective treatments for sickle cell pain is to administer strong opioids, the belief that Black people don’t feel pain in the same way that white people do can be extremely harmful. This can result in the sickle patient not receiving adequate pain relief and therefore having to endure excruciating pain that is unreasonable for anyone.
Many pain relief and numbing options are available to women in labor, for example. Almost every sickle cell patient I know who is a mother has said the pain of labor is quite minimal compared with that of a sickle cell crisis. In modern society, there’d be zero acceptance of healthcare staff withholding medication to alleviate labor pains. Now if sickle cell crises can be worse than that, why is it accepted practice for sickle cell patients to be treated in this manner?
Moreover, there’s an erroneous belief that sickle cell patients lie about pain to secure drugs. This stigma grinds my gears more than any other. Have you ever stayed in a hospital? It’s a horrible experience that to me feels like prison. There’s no rational reason to believe that people, en masse, would lie about pain to stay in a hospital just for access to drugs. After all, these drugs make us feel horrible. It’s not pleasant or enjoyable; it’s awful.
If there are sickle cell patients seeking drugs, I’m certain they’re the exception, not the rule. Most of us want to be free and in charge of our faculties to enjoy our personal lives — not cooped up in a hospital high on opioids, screaming in agony with limitations on our movement!
The consequence of this stigma is that sickle cell patients are more inclined to mistrust health professionals. At a time when their bodies are in deep distress and require care and relaxation, they’re forced to remain on high alert.
The thought of falling ill somewhere and ending up in a hospital where my consultant isn’t present terrifies me. I don’t trust other doctors. My natural inclination is that any other doctor will cause me harm instead of helping me feel better.
I have my pain protocol in e-format on my phone and have even asked my consultant/specialist nurses to call wards I’m at to ensure I get adequate care. But this hasn’t helped me in the past.
I’d encourage all healthcare professionals, particularly those who work in emergency medicine, intensive care, and general practice, to be well informed about sickle cell disease. I’d ask that they also consider the stigmas I’ve mentioned here and try to end them.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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Tyrone Hodge
Mary, as someone married to someone with full-blown sickle cell disease, I can identify with everything you've said. I was surprised to find out that there are some doctors out there who, despite years of knowledge, are ill-advised regarding sickle cell disease. I find myself telling that a lot of the time what they can and can't do. My spouse is 72 years old and has had two complete hip replacement surgeries in the last four years. Luckily, we've had the same doctors over the previous fifty years, but when we go to an emergency room, they must be brought up to speed. If sickle cell affected the general population, it would garner research like nobody's business.
Conversely, it affects minorities. It amazes me that there isn't more interest. I've got a. friend who told me that while in medical school, he wanted to pursue sickle cell as a specialty, but the funds just weren't there, so he went in a different direction. Ironically, he's lost family members very young from the same disease. So the sixty-four thousand dollar question becomes, how do we as a minority educate these people?