Sickle Cell Realities: The Pain We Don’t Always See

At a recent Mirror Mi event focused on sickle cell, I witnessed a moment that has stayed with me. Catherine Ajefu, a passionate advocate, stood with quiet strength as she shared a painful reality: in her community, nearly every family is touched by sickle cell. One or two people in a single household. One or two stories of silent suffering. One or two lives shaped each day by pain, uncertainty, and the relentless struggle to survive.

.That statement was more than just an anecdote . It was a powerful reflection of the quiet epidemic that sickle cell remains in countless Nigerian homes. What’s even more haunting is that many of these stories are never told. Not because they lack significance, but because, as a society, we have yet to make space for their truth , for their pain, their resilience, and their voices.

The Everyday Burden Of Sickle Cell

Sickle cell disorder is more than a genetic condition , it is a daily negotiation with pain. It’s a missed school day, a sudden hospital admission, a cancelled plan. It’s a night of fevers, bone aches, or silent anxiety attacks hidden behind a brave smile. It’s the burden of being mislabeled  as “lazy,” “possessed,” or “difficult.” Sickle cell is not just a blood disorder. It is a lived experience. A life story

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Nigeria accounts for 100,000-150,000 newborns living with SCD annually (33% of the global burden of SCD) Centers for Disease Control and Prevention’s Global Health reports. Nigeria, Centers for Disease Control and Prevention. And yet, the awareness, policies, and empathy to match this statistic are still not enough. Too many children are still being born into pain that could have been prevented with proper screening. Too many young adults are still stigmatized for having an inherited condition they did not choose.

The Mental Health Connection We Don’t Talk About

What we often fail to talk about is how chronic illnesses like sickle cell silently erode a person’s mental and emotional well-being. The physical pain is one part, but the mental toll? Equally devastating.

Living with sickle cell often means growing up with anxiety about your health, fear of crises, and guilt over how much your condition affects those around you. It means managing depression from frequent isolation, especially when flare-ups separate you from school, work, or social circles. For many, it also means silently enduring stigma, feeling less-than, or being told you are a burden. All of these, over time, chip away at one’s self-worth and emotional stability.

When we talk about mental health, we must begin to talk about it in the context of chronic illness. We must also recognise that supporting people with sickle cell requires emotional intelligence, empathy, and the willingness to listen without judgment. Therapy, support groups, and community check-ins should not be luxuries; they should be integrated into sickle cell care.

Why We Must Keep Talking

If we are serious about building a healthy nation, then we must start with conversations that are consistent, informed, and compassionate. Not just during awareness months. Not just when someone dies. Not just when an NGO organises a medical outreach. We must talk about sickle cell at our dinner tables. In our churches and mosques. At naming ceremonies. In our secondary schools. At community centres. In premarital counselling sessions.

We must normalise sickle cell education and screening. Let it be part of our school curricula. Let it be part of our marriage preparation. Let it be part of our health insurance conversations Because silence does not protect us. It only deepens the crisis.

Let’s Lead With Empathy

Every person living with sickle cell deserves to be seen, not just as a medical case, but as a full human being navigating a difficult journey. They deserve dignity, support, and access to both physical and mental healthcare. They deserve safe spaces to share their pain and platforms to celebrate their courage.

Empathy starts from acknowledging that sickle cell isn’t just “their problem.” It’s a community problem. It’s a national health problem.

It’s an economic problem. And yes, it’s a mental health problem.

So, as we go forward, whether as family members, employers, healthcare workers, or neighbours, let us ask ourselves: How are we making room for those silently fighting this battle? Because sometimes, the loudest pain is the one we refuse to hear.