This post has been sitting in my drafts for months. For so long that the last time I posted it I was freelancing and working completely remotely. but we still need to speak on this topic.

I recently got employed at this great marketing and advertising agency — shout-out to my brother for the lob. A conversation took place one day, which was “Have you ever taken sick leave?” A few colleagues said no, never and me, in my head, all I could think about were the days and moths I have worked from my hospital bed. Does that count as sick leave?

And honestly — the shift from remote work to full-time in-office work has been a bigger mountain than I expected. Remote work had given me the cushion of managing flare-ups quietly, of working lying down if I needed to, of hiding the worst days behind a screen. Now, commuting, dressing up, showing up — no matter what my body is doing — is a different kind of stamina test. It’s been challenging, exhausting at times, and I’ve had moments where my body begged me to stop. But at the same time, it’s been deeply rewarding to feel like I’m fully part of a team, to share in the energy of the office, and to see my work and ideas land in real time. The cost is real. But so is the joy.

Especially when you’ve co-founding something like Raremark Foundation, something I am so passionate about, and recently working full-time as a graphic designer. People look to you for strength, strategy, and clarity. But what they don’t see is the bone-deep exhaustion, the budget holes you’re trying to fill quietly because May, June, and July didn’t just test my body — they tested my spirit and my account.

After sharing Part 1 a few months ago, a few readers reached out. Some asked if I was okay (I appreciate you). Others said, “I didn’t know you were going through all that.” Others said, “Please share more!” A recent partner hospital in America invited me to write for their blog, so I guess revealing my personal battles and struggles is making an impact. That’s all I wanted to do, and I thank you, Josey (I’ll miss you forever), for the encouragement — for helping me find my tribe and grow it on your behalf.

But most said this: “I wish our employers in our workplace understood.” Nationally and internationally.

So let’s talk about it.

Because as much as sickle cell disease (SCD) affects our bodies, what crushes us sometimes is how ill-equipped workplaces are to meet us with understanding.

“You don’t look sick.” And other casual violences

I showed up on s Monday s few months ago for a Sickle Cell Screening and blood drive we had organized with a great partner organization. The first thing I was asked was, “Are you okay?” When I show up on the hard days — with pain tucked behind my eyes, breathing shallow, limbs heavy — I’m still expected to deliver. I thought I was The Great Pretender. Clearly not.

The invisibility of SCD makes it easier for people to downplay it. And in work culture — especially in Uganda, where the hustle is glorified and rest is a luxury — that invisibility is weaponized.

Sickle Cell is not just pain.
It’s fatigue, brain fog, dehydration, silent anxiety, depression, and delayed recovery. We need flexible systems, not sympathy once we’re in crisis.

Productivity ≠ Presence.
Just because someone is at work doesn’t mean they’re okay. Presenteeism kills productivity — but with the right accommodations, we can thrive.

Disclosure should feel safe.
People with chronic conditions hide because of fear — of being judged, replaced, or pitied. Build a culture where disclosure leads to support, not sidelining.

Sick leave policies need revisiting.
Most systems aren’t built for chronic illness. We need leave that reflects flare-ups, hospital visits, and the slow days in between.

Train your leadership.
Awareness starts at the top. HR managers and team leads must understand what SCD is — and more importantly, what it isn’t.

You don’t need to fix us. You need to believe in us.

When you live in survival mode, rest feels like guilt. Anxiety-provoking guilt.

One of the hardest things about being chronically ill in a professional space is the guilt — the guilt of resting, of saying no, of asking for time off, of admitting, “I’m not okay.”

Still, we show up. We are Warriors. But that doesn’t mean we’re fine.

And we shouldn’t have to suffer to be seen as valuable.

What I hope for

I hope for a future where young people with SCD don’t have to prove they’re sick enough to deserve accommodations. Where bosses don’t ask invasive questions. Where work adapts to people, not the other way around.

I hope for a future where rest is respected. Where leadership can look like softness, not just endurance.

And I hope this post helps employers rethink their policies, one employee feels seen, and one employee with SCD feels less alone.

Advocacy doesn’t end at awareness. It begins with action.

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