The conversation we avoid: Telling children they have sickle cell disease

“When can I tell my child that they have sickle cell disease?”

As a physician living with the condition, this remains one of the most frequent questions I receive from parents and caregivers. Many parents delay that conversation until their children reach their teenage years or older. Some only reveal the diagnosis after a severe complication forces the conversation.

I was one of those children. I remained unaware of my status until a serious health crisis at age 11 delivered a double shock that changed my life forever.

Throughout my childhood, I sensed that something about my health was different, even though I couldn’t name it. My curiosity grew as I got older. I often asked my parents questions about my health, but I never received clear answers. They would offer brief explanations or change the subject just enough to make me stop asking.

As a child, I noticed several differences between myself and my siblings. The first was that I couldn’t play as freely as they did. Whenever I exerted myself too much, I fell ill. I also became sick more frequently than they did. Another thing that stood out was the daily medications. I took drugs every day, while my siblings did not. My parents also paid unusually close attention to my health. They rarely allowed me to sleep alone, so I slept in their room. They protected me from stress and physical strain, and they handled me with extreme care. In fact, my nickname at home was “Egg.”

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All these experiences made me more inquisitive. By age 6, my questions had become more persistent. I would ask my parents, “Why do I take medications every day?” and sometimes even, “Can’t Jesus heal whatever is wrong with me?” They were difficult questions for any parent to answer, and my parents continued to avoid them. Looking back, I don’t blame them for not telling me earlier. I believe they feared how I might react. Perhaps they wanted to protect my heart and delay the burden of that knowledge for as long as possible.

The truth finally came out after a long and difficult period of illness. I had been sick for nearly six months without a clear diagnosis. Eventually, my mother took me to a teaching hospital, where doctors finally diagnosed me with tuberculosis. After the consultation, my mother sat me down and carefully explained everything. That was when she told me about both diagnoses: tuberculosis and sickle cell disease. She was visibly emotional as she spoke. I listened quietly, and tears rolled down my cheeks for a minute or two.

I grew up in a Christian home, and my faith shaped the way I processed that moment. After wiping my tears, I looked at my mother and reassured her that I would be fine and God would take care of me. I also assured her that I would not die.

In that moment, my strength seemed to give her strength. She stopped crying and began to smile again. Although the realization was heavy for a child my age, I made a personal decision that day: I would face it with courage.

A simple explanation can go a long way

My experience, however, shaped the way I view this issue today. I believe parents should not hide a sickle cell diagnosis from their children for too long. When children receive information about their health in an age-appropriate way, they learn how to care for themselves better. Early understanding also prepares them to face stigma and misconceptions with confidence.

Even a 5- or 6-year-old child can understand a simple explanation. A parent might say, “Your blood is a little different from your siblings’ blood. Because of that, it may cause pain and tiredness. It can even make your eyes look yellow sometimes. That is why you should avoid too much stress, drink plenty of water, and take your medications every day.” Explanations like this help children understand their bodies without frightening them.

Growing up, I knew something was wrong, but no one explained what it was. That uncertainty affected me emotionally, causing me to become withdrawn and quiet. Instead of interacting freely or asking more questions, I often kept to myself.

I urge parents and caregivers to speak honestly with their children as soon as they reach a level of understanding. Avoid transferring your own fears onto them or using language that creates terror. When you explain the condition with clarity and love, you provide them with a foundation of knowledge that will only grow stronger as they mature.

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.