How my sickle cell disease advocacy has evolved over time

My sickle cell disease advocacy journey began more than a decade ago, but it has changed shape many times. I have lived through a silent phase, an angry phase, a loud phase, a tired phase, and, finally, a more understanding phase.

In my early teens, after learning about my sickle cell diagnosis, it didn’t affect my life enough to dominate my thoughts. I was neither ashamed nor afraid to discuss it; it simply didn’t seem significant enough to define me. No one knew I had sickle cell disease. Classmates and friends noticed I sometimes missed school, but they never knew why. That was my silent phase.

By my late teens, the disease became far more serious than I expected. Initially, I was only dealing with pain crises, but later, complications began to appear. Some were so confusing that I didn’t even realize they were linked to sickle cell. When these physical issues began to affect how I walked, I experienced anger and depression.

I struggled to accept that my body could no longer do what it once did with ease. I hated hearing people discuss sickle cell disease. I avoided movies about chronic illness or physical disability. I did not want to look in the mirror because I did not want to face what I saw. During that phase, I felt angry with sickle cell disease and wanted nothing to do with it.

Eventually, I fought my way through depression. I poured my energy into education and graduated. That victory marked the beginning of my loud phase.

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I became confident enough to speak openly about my condition. I wanted people to learn. I embraced myself, my health journey, and the opportunity to educate others.

My voice grew even stronger after another serious complication left me bedridden for more than a year. That season launched my best years in advocacy. I felt more motivated than ever. I looked at everything I had endured and believed children should not have to experience a preventable disease. I saw widespread ignorance in the sickle cell community and wanted to challenge it.

I spoke firmly and directly. Some people thought I was too blunt, but my passion came from pain and urgency. I didn’t want another generation to suffer the same complications I did. I believed that if I advocated hard enough and joined forces with others, we could end sickle cell disease.

Over time, however, advocacy forced me to face reality. People do not share the same priorities. What matters deeply to one person may matter far less to another.

Learning to lead with empathy

For example, I have sacrificed good romantic relationships because of genotype incompatibility and do not regret it. Some people prioritize immediate happiness because they do not understand the consequences. Others understand the risks and still prioritize their happiness.

At first, I judged those decisions strongly, especially when they came from people living with sickle cell disease who knew the pain firsthand. I was angry that people would risk having children with the disease and viewed these choices as selfish. I felt tired, wondering if my efforts were fruitless.

Later on, I began to understand their perspectives, even if I still do not agree with them. There was a time I experienced loneliness and learned how isolation can push people toward desperate decisions. I also saw how little many people know about the disease, especially its lifelong complications. Most importantly, I understood that we all have different priorities in life, and that’s OK.

That understanding did not weaken my resolve to advocate. It refined it. Scientists have developed more options for people living with sickle cell, and that progress matters. Still, no treatment option matches the power of prevention.

Over the years, I have learned to approach advocacy with empathy rather than judgment. I have grown, evolved, and changed in many ways. Yet one belief remains constant: Preventing sickle cell disease is the best strategy.

However, I have also accepted that we may never fully eradicate the disease. Even so, I remain hopeful for a true cure that will be affordable and accessible to the majority of people living with sickle cell globally.

Many current treatments and curative options remain out of reach for most patients because of cost, limited access, or complex requirements. They benefit only a small minority who can afford them. Real progress will come when an effective cure both reduces prevalence and improves quality of life for people across every income level and continent, not just the privileged few. What has changed is not my message, but the grace with which I deliver it.

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 about sickle cell disease.