It’s OK Not to Be OK With Sickle Cell Disease

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by Dunstan Nicol-Wilson |

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Representation of different people in all areas of society is key to empowering the next generation. Having a role model that looks or talks like you validates your own experience.

But as a Black man with a chronic condition, role models in my community were few and far between.

For a long time, my journey with sickle cell disease felt lonely. I kept my condition a secret and navigated life pretending like I was OK. As I didn’t have a role model with sickle cell, I struggled in my teens to find a place in society. However, building my support network of other sickle cell patients has given me the courage to find my voice.

My personal experience and the experiences of those in my support network tie together. We are all trying to exist in a world that doesn’t truly accept us yet.

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An example is a short film I watched last week. “Why Me?” stars Nikki Fagbemi, a sickle cell patient who also wrote the film. It exceptionally portrays what it is like to have the disease. Fagbemi captures that experience through her character, Naima, in a way that is funny and sad while informing audiences about sickle cell.

I was so happy to see this on mainstream TV here in England, because I realized how much it would validate the experiences of younger sickle cell patients. In fact, a younger version of myself would have appreciated seeing a short film like this — a showcase of a small portion of my everyday struggles with my disease.

On the surface, Naima battles with pretending to be OK while the chaos in her life puts significant pressure on her, detrimentally affecting her health. Witnessing this segment reminded me of a phrase I used to say as a teenager: “Be true to yourself.” I used to say this phrase without fully conceptualizing what it meant.

Being true to myself meant embracing and exposing the big secret I kept. The decision to keep sickle cell secret stemmed from the fear of society not understanding me, or even rejecting me. That choice, however, made life so lonely and challenging that I had to fake a smile through the pain. I could empathize with the external and internal chaos that unfolds in Naima’s stressful life, leading to a crisis.

Naima displays a range of emotions during her hospitalization. One sentence from a monologue resonated with me: “I’m sick, and I’m sick and tired of acting like I’m not.” In this world, sickle cell patients pretend they are OK just to fit in, to be seen, while internally struggling with unbelievable pain.

During early adulthood, I realized that pretending to be OK when I wasn’t was more damaging than helpful. I continually undersold how devastating the impact of having sickle cell was to everyone, myself included. The wounds left behind from crises aren’t just physical wounds from needles or cannulas, but the emotional and mental wounds from pretending to be OK.

In facing my fears, I’ve been able to be unapologetically me and find my validation in the path I’m currently on. If I had seen this short film and witnessed others who resonated with my experiences while growing up, I would have started this journey sooner. So to Nikki Fagbemi, my fellow columnists, and advocates doing amazing things, continue to project your voice.

Representation matters, and it can unearth so much hidden talent. One day, those growing up with sickle cell won’t need to pretend to be OK anymore.


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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