Last week, I had the privilege of attending the St. Jude Global Sub-Saharan Africa Regional Meeting in Nairobi, representing Raremark Foundation. It was a week of intense learning—strategies, systems, science—but also one that demanded more from me physically and emotionally than I had anticipated.

The altitude difference hit harder than expected. Nairobi sits nearly 1,800 meters above sea level, and my body, already juggling the demands of Sickle Cell Disease (SCD), didn’t adjust gracefully. I experienced persistent fatigue and the kind of mental fog that makes even basic conversations feel like hiking uphill.

The truth is, off the back of April, May has been heavy. Emotionally draining. Financially tight. I’ve been working on advocacy projects and staying visible—but behind the scenes, I’ve had at least two minor crashouts. Not full-blown crises, but those moments where my body says “enough” and I’m forced to listen.

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The Invisible Struggle: Presenteeism and SCD

In the professional world, we hear a lot about “presenteeism”—showing up to work when you’re not well enough to function. For people with chronic illnesses like SCD, it’s not a rare event. It’s often the baseline. You’re there, physically present, but mentally counting the spoons you have left to survive the day.

A 2020 study in Value in Health emphasized how the indirect costs of SCD—lost productivity, reduced workplace participation—are often overlooked. But beyond statistics, this is personal. It’s the daily calculation of, “Can I push through this meeting without triggering a crisis?”

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Reflections from Nairobi

At the Nairobi conference, I found myself in conversations with healthcare leaders from across the world. Everyone was talking systems: early detection, medication access, policy frameworks. But quietly, on the sidelines, a different truth kept surfacing.

How many of us—patients, advocates, even some professionals—are barely holding it together at work? One Warrior was rushed to hospital on the first day of the conference.

One session touched on the need for psychosocial support. It resonated deeply. We need more than meds—we need safe spaces to say: “I’m not okay today. And I shouldn’t have to prove my worth by hiding that.”

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Strategies for Working While Chronically Ill

Here’s what I’ve learned—sometimes the hard way—about balancing work and chronic illness:

1. Honor your body. Pushing through every day like nothing’s wrong only leads to burnout. Rest isn’t a reward—it’s survival.
   
2. Be honest (when you can). I know disclosure isn’t always safe, but if you can find one person at work who gets it, who’ll check in without judgment, that’s gold.
   
3. Flexible structure helps. Rigid 9–5 routines are brutal on our bodies. Negotiate hybrid options if you can. Build in recovery time.
   
4. Track your energy. I’ve started using a simple journal to log when I feel good, when I crash, and what preceded it. It’s helping me understand my limits more clearly.
   
5. Educate others. Sometimes the hardest part is being invisible. If you feel strong enough, start conversations. A 5-minute talk about SCD might change how someone sees your silence or absence.

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Moving Forward

There’s no perfect way to do this. Living with SCD is a daily act of adaptation—and surviving May has reminded me of that.

But I also know that vulnerability is a form of advocacy. Sharing the reality of what this disease does—physically, mentally, economically—is part of breaking the silence.

I’m learning to hold space for both ambition and exhaustion. For impact and rest. For being the co-founder of an organization, a freelance graphic designer and someone who sometimes just needs to lie still, breathe, and begin again.

If you’re living with SCD or any chronic condition, and working through it—literally and figuratively—I see you. What helps you get through? What doesn’t?

Let’s talk about it.