My Sickle Cell Advocacy at Church Brings Unexpected Healing

Growing up in my African household, religion was a core element of my upbringing. As a family and community, we would thank God for all aspects of life and pray diligently for healing and blessings. But as a child, I struggled with this because I felt ungrateful, constantly asking God to heal my sickle cell disease.

At the peak of some of my pain crises, I vividly remember begging for the pain to stop, desperate to have some relief. I would spend nights crying and wondering why I was given this burden. Each crisis led to an internal battle of my spiritual beliefs, a constant flux between spiritual apathy and passion.

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My spiritual apathy stemmed from my perceived lack of results; nothing was working, and it felt like I was constantly sick. Sometimes being honest about my struggles with sickle cell while at church would lead to church members questioning me about the strength of my faith. I heard comments such as “If you pray more, God will heal you,” or, “You need to pray harder.” That caused resentment toward the church environment.

This perception of the church continued to grow, and as a result, I kept my condition a secret in this environment. That way, I wouldn’t be questioned or judged about my spiritual journey. I no longer felt like I could be vulnerable or honest in this space, and it felt safer and less damaging to withdraw. This thought process would permeate all aspects of my life.

Sealing myself away spiritually meant I did the same in other spaces, such as in relationships and work life. However, my journey to becoming a sickle cell advocate would eventually have me campaigning in the community and encouraging people to donate blood. And my advocacy brought me right back to the church, in front of a community I’d not been comfortable with previously.

Fate would have it that I would stand in front of a large church congregation to encourage them to give blood. The whole situation was extremely nerve-wracking because I was unsure of the reception I’d receive, especially because my work as an advocate for sickle cell requires me to be open and honest about my own journey.

When I stated at church that I had sickle cell and described what it meant to give blood, I was overcome with emotions. At first, I could not get to the end of the speech because I thought about how many patients like me had been silently suffering from sickle cell. This thought gave me courage. I needed to stand in this environment and be proud without fear of rejection or shame.

I eventually recovered to finish the speech, and after the talk, there were so many sign-ups to give blood and words of encouragement that I was elated. Being open, honest, and vulnerable allowed me to connect again with a community I felt had rejected me. To be brought up in this community and not feel part of it meant I’d felt disconnected from my culture for a long time. At that moment, I felt the healing I’d been asking for.

It wasn’t the conventional way I’d imagined it, but my pain and suffering eventually allowed me to be transparent and honest — which in the end, now gives me a platform to make a difference. And for that, I am grateful.

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.