Culturally Influenced Stigma and Sickle Cell: A Harmful Combination

Health-related stigma, as I discussed in my last column, is not the only stigma that afflicts those with sickle cell disease. There’s another stigma attached to it, one more localized, that can still have a detrimental effect on the patient. I’ll refer to this as culturally influenced stigma because I’ve not been able to find a term to describe it that everyone agrees with across the board.

As a localized stigma, it’s not as well known as the health-related stigma, and it doesn’t affect all sickle cell patients. But it’s been prominent in my life and the lives of many sickle cell patients I know due to similarities in our cultural backgrounds.

For context, sickle cell is an inherited disease with minimal options for a cure. It’s not a blessing — in fact, it’s a massive pain in the backside and a big inconvenience — but it’s not a curse, either. There’s a very simple scientific explanation as to why we have the disease. Put briefly, we inherit a sickle gene from each parent.

Those of us who have sickle cell aren’t cursed by some spiritual being for some ancestral wrongdoing — which is a train of thought peddled in some communities. I’ve experienced this in both religious communities and my West African community. I know other sickle cell patients from Central Africa who have reported similar experiences.

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This belief is fueled by the perception that those with sickle cell are guaranteed a low quality of life. This, together with the fact that it’s a condition from birth, seems to cause communities to “over-spiritualize” the matter. And thus, some label the illness a curse.

I believe sickle cell is part of what makes my identity. The notion that parts of my identity are products of a curse challenges my very personhood. It’s not rational because it suggests I’m somehow “less than.”

Such beliefs can cause the sickle cell patient much distress, and even make them outcasts from their local communities.

I remember that growing up, I would watch Nollywood, or Nigerian, films, where it was frequently indicated that marrying someone with sickle cell is terrible because the disease is seen as a curse. This same belief was manifest in one of my previous relationships, when I’d dated someone from my own cultural background. This relationship came to an end in part because this person wanted to hide my condition from his family, who wouldn’t have approved of the relationship had they known I was plagued with sickle cell.

I grew up in the U.K., where education is free until a certain age. This, however, isn’t the reality for many people around the globe. When I was born, my parents were told of the low life expectancy of children with sickle cell at the time. If I’d been raised elsewhere, my condition would’ve constrained my access to an education.

In West Africa, for instance, in a family with many children and in a country where parents have to pay school fees, the child with sickle cell will likely not get the same investment as a child without sickle cell. The sickle cell child, those parents believe, will not provide a return on the investment due to their shorter life span, or because they can’t undertake the levels of work that others can do.

My parents heard comments to this effect when I was an extremely unwell child. Thank God they didn’t succumb to the peer pressure.

Growing up in church, meanwhile, I commonly had people suggest to me that I was cursed with poor health due to my own sin, or the sin of my parents, or even my own lack of faith. Thankfully, I always had someone in my life counteracting these untruths, and as a result, my faith remains intact. This isn’t the experience of everyone, however.

I’ve heard stories from other sickle cell patients who’d been deserted as children by parents who believed in the curse theory and not in the science of inherited genes. Can you imagine the emotional toll this puts on the sickle cell patient?

So in the same way we need to dispel the health-related stigma of sickle cell, I’d argue we equally need communities to unlearn the harmful theories they’ve been taught about the disease. Remember, all people are equal, no matter the perceived differences. And to my fellow sickle cell patients, please know you’re not the victim of a curse — instead, you’re worthy of love.

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.