Why I refused to stay silent about my sickle cell disease
Sharing my experiences has benefited me and countless others
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“Why do you have to write about your health on social media?”
My brother asked me that question many years ago in our family WhatsApp group after I started openly discussing my sickle cell disease (SCD) online.
At the time, I understood his concern. Many families still associate SCD with stigma, silence, and shame. Public conversations about chronic illness often make people uncomfortable, especially in African communities where privacy around health conditions is deeply rooted. Still, I could not remain silent.
Around 2010, my health declined significantly. I battled chronic pain, severe fatigue, avascular necrosis, and several sickle cell complications. The emotional burden became overwhelming. I constantly searched for answers about what was happening to my body.
Although I had access to various hematologists as a medical professional, many of my questions remained unanswered. My doctors helped manage my symptoms, but I needed deeper explanations for the complications I experienced daily, because some issues were not responding to treatment. My doctors weren’t even sure if these complications were associated with SCD.
One of my professors advised me to dive into research, so I did. That decision changed my life.
I immersed myself in scientific literature. PubMed, ScienceDirect, Google Scholar, and medical journals became my friends. I spent countless hours reading about SCD and its association with various health issues. That journey later inspired me to co-author sickle cell research projects focused on patient issues and overlooked complications.
Speaking up
As I learned more, I became more vocal online to educate both patients and healthcare professionals. I started sharing my experiences, struggles, lessons, and discoveries through social media. I didn’t want patients and caregivers to feel lost when they sought answers to their questions.
My mother initially struggled with my decision to speak publicly about my condition. She never openly opposed me, but I could sense her discomfort. At one point, I temporarily blocked her from my social media pages because I knew she needed time to process it, and her mental health is important to me. Over time, she gradually came to understand my purpose.
My brother expressed his concerns more directly. Some of my other siblings remained silent, although I suspected they felt similarly.
Outside my family, I frequently saw the same pattern among the sickle cell community. Many warriors in my support groups shared painful stories about being criticized for speaking openly about their illness. People told them to stop talking about SCD because of the stigma.
Refusing to listen to such criticism, I continued speaking about my experiences and advocating publicly for the community. Eventually, my family began to appreciate the impact of my work.
They saw lives changing as patients found hope, help, and solutions. They saw my nongovernmental organization, SickleLive Foundation, and my online support group, Sickle Cell Celebs, grow into platforms that educate, empower, and support thousands of people globally.
What many people didn’t understand was that talking about SCD also helped me heal emotionally. Sharing my story reduced my emotional burden and connected me with people who understood my struggles. It gave meaning to my pain and transformed difficult experiences into tools for education and support.
Over the years, I have mentored many people living with sickle cell disease and have become a source of encouragement for patients and caregivers. I built an online sickle cell community of more than 11,500 members focused on advocacy, education, psychosocial support, empowerment, and research.
Through SickleLive Foundation, I have also designed and executed multiple health, advocacy, and empowerment projects for the sickle cell community.
In addition, becoming a sickle cell health writer gave me career diversification and personal fulfillment. Writing allows me to combine medicine, storytelling, advocacy, and public health communication in meaningful ways.
To every patient or caregiver being pressured into silence, I want you to know this: Do not allow stigma to silence your voice.
Your story can educate people, inspire hope, support patients, or even save lives. For some people living with severe sickle cell disease, speaking about painful experiences is also a form of emotional survival. Sometimes, sharing our stories prevents emotional collapse.
Of course, privacy remains a personal choice. No one should feel forced to discuss their health publicly. However, we should never discourage those who choose to speak up, advocate, educate, and make a difference through their experiences.
Our voices matter! And sometimes, our healing begins when we finally decide to use them.
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.
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