Clocking In While Your Body Clocks Out:
There is a specific kind of exhaustion that only SCD Warriors know.
It is not the tiredness that comes from a long day at the office, or a hard workout, or a late night. It is the kind of exhaustion that lives in your bones. The kind that shows up uninvited on a Tuesday morning when you had three back-to-back meetings, a deadline, and a body that decided it had other plans. The kind where you are sitting at your desk, answering emails, smiling in the Zoom call, and on the inside you are negotiating in real time with your own blood.
I have had more of those Tuesdays than I can count.
For years, my relationship with work was built on one principle: push through. Show up. Do not let them see the cracks. Do not be the person who uses their condition as an excuse. Be the strongest version of yourself, always, regardless of what was happening underneath. It was exhausting in a way that went far beyond the disease itself.
This post is about unlearning that. About what I have figured out — sometimes the hard way, — about how to build a working life that does not cost you your health to maintain.
Because here is the thing: we already give this disease so much. Our plans, our bodies, our social lives, our relationships. Work does not have to take our sanity too.
Part One: The Myth of Pushing Through
Let me start by saying this plainly: pushing through a Sickle Cell crisis does not make you stronger. It makes you sicker.
There is a deeply rooted cultural narrative — especially for us as Black Africans, and specifically as people who have grown up watching our elders work through everything — that rest is weakness. That if you stop, you have failed. That the disease wins if you take a day off.
I believed this for years. I pushed through crises, turned up to meetings I had no business attending, managed client work while on pain medication, and then wondered why my admissions were getting closer together. My body was not being dramatic. It was keeping score.
Here is what I have come to understand: rest is not giving up. Rest is medicine. And the same discipline that makes you a hard worker can be redirected into being disciplined about your recovery, your hydration, your sleep, your limits. That discipline is not less impressive. It is harder, actually. Anyone can grind themselves into the ground. Very few people have the self-awareness to stop before they get there.
Part Two: Know Your Energy Envelope
One of the most useful frameworks I have encountered is the concept of the energy spoon. The idea is simple: each of us has a limited daily supply of energy, and for those of us with Sickle Cell, that supply is genuinely smaller than average, and far less predictable.
On a good day, your spoon might be full. On a day when the weather changes, when you did not sleep well, when you are mildly dehydrated, or when your body is quietly fighting something off — your spoon might be half empty before you have even opened your laptop.
The mistake most of us make is treating every day like a full-spoon day. We schedule ourselves like healthy people and then feel like failures when our body does not comply.
Here is what working within your energy envelope actually looks like:
1. Do your hardest work in your best hours.
Track yourself for two weeks. Notice when you consistently feel clearer, sharper, more capable. That window is your peak. Protect it fiercely and put your most demanding work there. Guard it from meetings that could be emails.
2. Batch similar tasks.
Context-switching drains energy fast. If you are writing, write for a block. If you are on calls, stack them. The mental cost of switching modes is real and multiplied when your body is already working overtime.
3. Build buffer into your schedule.
A deadline of Monday means prepare to be done by Friday. A commitment for 10am means be ready at 9:30. Buffer is not inefficiency. Buffer is the difference between a manageable flare and a hospitalisation.
4. Learn what depletes you beyond the obvious.
For me, certain social environments are exhausting. Environments with poor air quality or extreme temperature changes. Long periods of sitting without movement. Emotional stress — especially unresolved conflict. These are as real as physical exertion. Know yours.
5. Rest before you need it.
Proactive rest — a short break taken before you feel terrible — is more effective than reactive rest taken after you crash. Schedule it. Put it in your calendar like a meeting.
Part Three: The Conversation You Are Probably Avoiding
Telling your employer, your colleagues, or your clients about Sickle Cell.
I know. I have been there. The fear that you will be seen as unreliable. That opportunities will dry up. That people will treat you differently — not with respect, but with pity, or worse, with impatience. That every time you are unwell, someone will connect it back to that conversation and file it under ‘as expected.’
These fears are not irrational. They come from real experiences — mine and thousands of others’. And I am not going to tell you that disclosing is always safe, because in some workplaces and cultures, it genuinely is not.
What I will say is this: the right disclosure, to the right people, at the right time, done on your terms, can be the thing that transforms your working life. It can mean the difference between managing your condition in secret and white-knuckling through everything, versus having the flexibility, support, and understanding that allow you to actually perform at your best.
How to approach the conversation:
1. Choose your person carefully.
This does not need to be a broadcast. A direct line manager you trust, or HR in a formal capacity if you need documentation, is sufficient. You are not required to announce your health to an entire organisation.
2. Lead with your capabilities, not your limitations.
Open by demonstrating your value and commitment. Then introduce SCD as context, not as apology. You are giving them information that helps them work with you better, not presenting a liability.
3. Come with solutions.
Before the conversation, think about what accommodations would genuinely help you: flexible start times, the ability to work from home during recovery periods, permission to block focus time, access to a quiet space. Having specific asks removes the ambiguity and the discomfort.
4. Document it.
If accommodations are agreed, follow up in writing. Not because you assume bad faith, but because memories fade and managers change.
5. Know your rights.
In most countries, chronic illness qualifies as a disability under employment law, which means employers have a legal obligation to provide reasonable accommodations. Know what the law says in your country before the conversation. It changes the dynamic.
Part Four: The Performance of Wellness
There is a specific kind of exhaustion that comes from performing wellness.
From sitting in a meeting with a pain level of 6 and giving the impression that everything is fine. From answering ‘how are you?’ with ‘good thanks’ when you are very much not good. From showing up to everything at full capacity because the alternative — being seen as someone who sometimes cannot — feels unbearable.
We do this because the world rewards it. Because workplaces are not designed for variability. Because there is still a stigma, a judgement, a quiet assumption that illness means incompetence.
But the performance itself has a cost. It keeps you from asking for help. It prevents people from understanding your actual needs. And it reinforces the idea, inside yourself, that your worth is conditional on never being ill.
It is not. Your worth is not a function of your output on a bad pain day. You are not less valuable when your body is fighting.
You are not less valuable when your body is fighting.
Releasing the performance does not mean oversharing or making your illness the centre of every interaction. It means giving yourself permission to sometimes say: I am not at my best today, but I am still here, and I will catch up when I am. It means not apologising for having a chronic illness, because you have nothing to apologise for.
Part Five: Managing Flares at Work
Crises do not check your calendar. I have had pain episodes start in the middle of a client presentation, on the day of a launch, in the taxi on the way to a meeting I absolutely could not miss. The unpredictability is one of the cruelest aspects of this disease.
But there are things you can do to reduce the vulnerability.
1. Hydration is non-negotiable.
I know we all know this. I know we hear it constantly. I am saying it again because it is genuinely one of the most effective and accessible tools we have, and most of us are still not doing it consistently at work. Keep water at your desk. Set reminders if you need to. Make it automatic.
2. Temperature management.
Cold environments are a serious trigger. If your office is cold, you have the right to dress warmly, request a space heater, or wear layers regardless of the dress code. Your body temperature is not a style choice. Communicate your needs.
3. Stress reduction is medical, not optional.
Emotional and psychological stress is a documented trigger for VOC episodes. If a particular project, client, or working relationship is a consistent source of acute stress, that is not just a management challenge — it is a health issue. Treat it as one.
4. Have an emergency plan ready.
What happens if you need to leave suddenly? Who covers your responsibilities? What are your most urgent open items and where are they? Having a written ‘if I am out’ document that someone trusted can access is not pessimistic. It is professional and protective.
5. Keep your medication accessible.
This sounds obvious, but how many of us leave our medication at home on a day we think we will be fine? Keep a small supply at your workplace if you can. Do not rely on the assumption that a crisis will always start at home.
6. Recovery is part of the work.
After a hospitalisation or a significant flare, your body needs time to fully restore. Coming back to full capacity too quickly extends the overall recovery time. If you can negotiate a phased return — fewer hours, reduced responsibilities, remote work — use it.
Part Six: Mental Health Is Not a Side Issue
Work stress, the pressure to perform, the guilt of sick days, the anxiety of an unpredictable condition, the grief of missed opportunities — these all accumulate. And for SCD Warriors who are also managing depression, which research estimates affects between 35% and 50% of patients, the weight of that accumulation can become unbearable.
I have written about depression and Sickle Cell before, and I will say it again here in the context of work: you cannot perform sustainably, long-term, in a career you care about, if your mental health is not being tended to.
Therapy is not a luxury. A support system is not a weakness. Saying ‘I am not okay’ to someone you trust is not giving up. These are tools. The same way you take your medication, manage your hydration, and monitor your body — mental health care is part of the protocol.
If your workplace does not support your mental health needs, that is information about the workplace, not about your ability to do the job.
Part Seven: Building the Life Around the Condition
This is the longer game.
Not just surviving week to week, but intentionally building a working life, a career, a income structure, a daily rhythm that is compatible with your actual body. Not the body you wish you had. Not the body you had before your last hospitalisation. Your actual, real, current body.
For some of us, that means moving away from environments or career paths that are fundamentally incompatible with our health — jobs with no flexibility, high physical demands, toxic environments, or cultures that penalise rest.
For others, it means advocating loudly within existing structures until those structures change.
For others still, it means building something of your own — a freelance practice, a business, a foundation — where you are the one setting the terms.
None of these paths is easy. All of them are valid. What matters is that the structure you build is built with your health in mind from the beginning, not bolted on as an afterthought when you are already in crisis.
1. Design your week before the week designs itself.
Sunday evenings or Monday mornings, spend 15 minutes mapping what you are taking on, what your body has been telling you recently, and where the risk points are. Then adjust.
2. Build a financial cushion where possible.
I know this is harder for some than others. But even a small emergency fund changes the calculus entirely. It means that when you need to rest, you can rest without the additional terror of financial collapse. This is not a luxury. For us, it is survival infrastructure.
3. Find the community that understands.
Having even one person in your professional network who knows your situation — another SCD warrior, a trusted colleague, a mentor who gets it — changes things. You should not be navigating this entirely alone.
4. Celebrate what you achieve despite the condition.
I mean this genuinely. When you close a deal, finish a project, show up for a client on a day your body was fighting you — that is extraordinary. It counts more, not less. Do not let the relentlessness of the condition make you forget to acknowledge what you have done.
The Work Continues
I am still figuring this out. I do not have a perfect relationship with work and my health. Some weeks I get the balance right. Some weeks I overcommit, ignore the signs, and pay for it. Some weeks the balance is not mine to control at all.
But what I know now, that I did not know when I was younger, is that the goal is not to hide the disease from your career. The goal is to build a career that is honest about the disease. One that has space for the whole of you — the capable, driven, ambitious, creative person that you are, and the person who sometimes needs to stop, lie down, and let the body do its work.
We are not a machines. We are not a productivity metric. We are a Sickle Cell Warriors who have already survived things that most people cannot imagine.
The fact that we are still here, still working, still building something — that is not a small thing. That is everything.
As always: this fight continues. And I am in it with you.
Shame & Sickle Cell 