Celebrating 3 years of documenting my sickle cell disease advocacy
Writing about my journey with my condition has helped me heal and grow
This month is special for me. On June 14, I celebrated my third anniversary of writing this column for Sickle Cell Disease News, and June 19 will mark both World Sickle Cell Day and Juneteenth.
The past three years have been quite a journey, and I’m proud of my commitment to raising awareness about sickle cell disease. Before I joined Bionews, the parent company of this site, I never imagined that my advocacy would turn me into a writer.
Nothing great comes from being comfortable. Writing about my most vulnerable moments with this condition hasn’t been easy. At first, it exposed my traumas that hadn’t healed, and I had difficulty sharing my condition, my mental health challenges, and my fears about life expectancy. It was uncomfortable to lay myself bare before the world.
Being so transparent, however, has allowed my confidence and strength to grow. In the past, sickle cell isolated me; it was easier to hide or withdraw from things that made me uncomfortable. With this platform, there’s nowhere to hide, and my readers have become my accountability partners.
Banding together with my community
When I write about maintaining a healthy diet or trying new sports or exercises, I’m sharing my actions and achievements. When I write about a bad day with sickle cell, it serves as a valuable reminder that there will be good days, too. I’ve experienced healing through sharing my story.
Sickle cell affects everyone differently. Reading about my fellow columnists’ experiences reminds me to consider different perspectives. We may have different approaches to living with sickle cell, but we’re all managing the condition as best we can. My support network has grown beyond just my trusted confidants.
It’s a beautiful thing to see patients, caregivers, and advocates band together to amplify one another’s voices. It’s been a privilege to work with my community over the past three years to improve the outcomes for people with sickle cell.
In that time, I’ve spoken with leading pharmaceutical companies, worked on some fantastic community projects, and confidently shared my experiences with young people. Writing has transformed my advocacy into something much bigger than I ever imagined, and plenty of ink remains in my pen.
I’ve enjoyed pouring out to my community through writing, mentoring, and speaking, and I’m excited to see what’s next on the horizon. Despite the challenges I’ve faced, I’m still an optimist. I know that one day we will achieve widespread awareness about sickle cell disease.
I’ve always said my biggest goal is that I’ll no longer need to spread awareness. I don’t know when that might happen, but each year I grow more optimistic that the day will come.
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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Comments
Michelle
Thank you Dunstan, you have truly been an inspiration, and I value your openness and honesty. You have really opened my eyes and helped me understand this condition in detail. I have a daughter with SCD who really does not like to talk about how this affects her, so I’ve been struggling how best to support her. I wish you all the best and thank you once again.