One Year On: Raising Awareness by Documenting Life With Sickle Cell Disease

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by Dunstan Nicol-Wilson |

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As World Sickle Cell Day approaches on June 19, I’ve been thinking about my contribution to raising awareness about sickle cell disease. For those dealing with the condition, sickle cell awareness is more than just a day: It is every day.

However, building consistency when you have a chronic condition is challenging. One sickle cell crisis or hospital admission can destabilize your momentum.

This month is also my first anniversary of documenting life with my disorder for Sickle Cell Disease News. For the last year, I’ve been writing almost weekly about my journey with sickle cell. Looking back, I’m in awe of how much I’ve shared about myself and the consistency I’ve achieved despite my chronic condition.

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When I first applied for a columnist role at BioNews, the parent company of this website, I predicted that I would only last a couple of months. I was overcome with doubt about my abilities and didn’t think much of myself as a writer. I was still learning about my condition and slowly evolving into an advocate role to spread awareness. However, I never felt qualified enough to talk about sickle cell disease through this medium.

Writing about my journey online meant that my flaws and traumas would be put out there for the world to see. Being on an online platform was a massive personal shift because I would expose the façade that sickle cell didn’t affect me much. I was developing to the point of accepting sickle cell as a part of me, but this step would accelerate everything — which was daunting.

Those in my support network challenged my fears and doubts. A straightforward question emerged from this process: Who is more qualified to write about my personal experiences? I realized that I’m the only one who can speak about my experience, and how sickle cell affects how I interact with the world. I had to become a happy version of myself to be honest about the hardships of the disease.

Through writing, I’ve been able to take steps toward this goal. In my personal life, I still struggle with the complexities of the condition. How sickle cell affects my mood, lifestyle, and relationships is something I wrestle with daily. However, writing has given me the ability to pause and be more introspective as I develop as a person.

I don’t always make the right decisions, and sometimes I revert to old habits such as withdrawing to a safe space or pushing myself, risking a crisis. However, I have also shown more than just my traumas and flaws. Through my sagas, I have demonstrated the other parts of me as a manager, traveler, football fan, and lover of anime.

Since my nervous start, I’ve been open and honest about the lessons I’ve learned, and I’ve spread awareness by sharing my experiences. I’ve connected with different people within the community, and through each connection, we’ve somehow found common ground and amplified our voices.

I am proud of the columns I’ve written so far and incredibly grateful to each person who has read, shared, or commented. As I go beyond my anniversary, and as World Sickle Cell Day approaches, I aim to continue to spread awareness in my own unique way, and encourage others to do the same.

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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