Growing Up With Sickle Cell Taught Me to Stand Up to Adversity

With a chronic condition like sickle cell disease, I sometimes find it difficult to look far into the future. What exactly will my future be like? Will there be more hospital trips? More pain? More sadness?

Reflecting on my origin story in a previous column prompted me to question whether the story of my life was predefined or limited to a set path.

In my early teens, I continued to have feelings of loneliness and self-isolation because of sickle cell, which not many people understood. This didn’t change until I met someone in the community who said she was shocked because she thought I looked so “healthy.” I’m paraphrasing, but she said something like, “Wow, are you sure you have sickle cell? You look so well!”

That sounds crazy, right? It sounded even crazier in my head as I thought about all of those hospital visits and lonely days when I was a child. I tried to understand what she meant by that. How did she expect me to look? Was I supposed to look sicker? Was I doing better than I thought? Was my story not even “normal” for sickle cell disease?

In a heart-to-heart chat with my mum, she told me that some people didn’t expect me to do as well as I have. I felt a gush of emotion when I heard this, and I was determined to prove everyone wrong. My origin story is what it is, but my future is defined by what I make of it.

Just like in my favorite stories, this was where the flip switched for me. I pushed myself academically and graduated summa cum laude in college, with a bioscience degree. I worked full time and was promoted while completing a master’s degree in public health. I traveled with friends to other countries, and even started my sickle cell advocacy, along with this column, “Sickle Sagas.”

If I wanted to do something, I was determined to get it done. I started writing my story in the narrative of those characters I was inspired by.

Of course, these moments weren’t without adversity. I had many crises due to stress and overworking. But each time, I got up and came back stronger.

I had heard some people refer to sickle cell as a type of power or gift, but I never understood that. To me, the pain never seemed worth it. At the same time, however, these experiences have made me even more determined to keep going and to stand in the face of adversity. Without my experiences, I can’t say with confidence that I’d be standing here today.

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As my story develops, my origins continue to define my future. I now speak more confidently and passionately about sickle cell. I am no longer ashamed to embrace it or hide a part of myself from the world. One day, this world will know what sickle cell is, and maybe it will be because of people like me.

If great stories have taught me anything, it’s that protagonists don’t always get the power they want, but they do always find a way to make the most of it.

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Note: Sickle Cell Anemia 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 Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.