Reflecting on Why I Became a Sickle Cell Disease Advocate
A columnist remembers why advocacy work — though tiring at times — matters
My ultimate goal as a sickle cell advocate is for advocacy to no longer be necessary. I’m a private and introverted person and usually prefer to keep to myself. However, as an advocate, I must put myself out there and leave my comfort zone to share my journey with sickle cell disease.
In sharing my most vulnerable and authentic moments, I hope to raise awareness and have an impact on people. I don’t advocate against my will, nor do I hate it. Advocacy has benefits, and I know that sharing my experiences can help others with the disease. I simply want to live in a world where everyone knows what sickle cell is, so there isn’t a need to spread awareness.
In recent weeks, some personal issues limited my energy, affecting my ability to do everyday tasks. As a result, I lost some motivation, which made advocacy even harder. It felt easier to retreat and withdraw.
During that period, I took a break to sit back and reflect on what drove me to pursue sickle cell disease advocacy in the first place.
Personal experience
I’ve had bad medical experiences, many of which resulted from a lack of awareness or knowledge about sickle cell. These experiences taught me hard lessons, and I’m grateful to still be alive in spite of them. To break the cycle of poor treatment of sickle cell patients, it’s essential to educate all medical professionals about the disease.
Purpose
I’m a firm believer that everyone has a purpose in life. The hardships I’ve faced with sickle cell contributed to my calling to make a difference. Using my personal experience to help others gives me a sense of purpose. Since childhood, I’ve wanted to support other patients, but I didn’t always know how I could achieve that. Now I can help in so many ways.
Community
It feels nice to give back to my community. So many voices have paved the way for me to be here. Past, present, and future advocates unite as one voice to initiate change. The sickle cell community inspires and encourages me to pick up my banner and continue the fight. I owe them a lot after walking this path alone for so long.
Reflecting on these points renewed my desire to improve conditions for sickle cell patients. However, I also realized that I needed a break to recover from all my work. Pushing myself constantly to do something uncomfortable will have drawbacks, and I need to take the necessary time to rest and heal.
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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