Control, Chronic Illness and The Great Divide (Again)
- Nneka Uchea Smith
- Feb 13
- 3 min read
If you read my recent posts about simulation training and self-perception, you’ll know I tend to sit in two spaces quite comfortably: the analytical and the reflective. The clinical and the personal. The composed duck on the surface… and the legs going like mad underneath.
This one sits firmly underneath the waterline.
Over the winter I underwent red cell exchange. Clinically, it “worked” – my HbS and HbC levels reduced to 37%. On paper, that’s positive. In reality? Not the relief of symptoms I had hoped for. And when you live with Sickle Cell Disorder (SCD), that gap between numbers and lived experience can feel like yet another version of the great divide.
Layer onto that perimenopause – an area with very little research when it comes to women living with SCD.
We talk a lot about evidence-based care (rightly so), but what happens when the evidence simply isn’t there? When hormonal shifts meet a haemoglobinopathy and nobody can quite tell you what that interaction looks like long term?
Since Crizanlizumab was withdrawn, my health has declined. That’s the blunt truth. Recently, I found myself in A&E with a thunderclap headache. If you don’t live with SCD, that phrase is alarming enough. If you do, your brain immediately runs through stroke, TIA, cerebral sickle crisis.
The clinical knowledge that usually empowers you becomes the thing that terrifies you.
I’ve now made the decision to start hydroxyurea (hydroxycarbamide). A chemotherapy drug. Even writing that feels heavy. The potential side effects are not insignificant, and the decision hasn’t been taken lightly. But it’s also the last realistic attempt to get some control over symptoms that feel random, disruptive and increasingly intrusive – physically and psychologically.
There’s another layer to this decision: without trying hydroxyurea, I wouldn’t be considered for further treatments, including stem cell transplant. So, the choice is not entirely a choice. It’s a gateway.
And here’s the part that doesn’t make for neat professional narratives:
I’m tired.
Disappointed.
At times, hopeless.
You can do all the “right” things.
- Adapt your workload.
- Step back from high-level sport.
- Prioritise sleep.
- Nutrition.
- Self-awareness.
- Self-regulation.
You can redesign your life around staying well.
And still, chronic illness doesn’t negotiate.
One minute you’re feeling well, motivated, ready to take on the world. The next you’re in bed, lethargic, frightened and unable to function. That unpredictability breeds health anxiety. It chips away at mindset. It tests even the most resilient positivity.
It also forces sacrifice:
- Career pacing.
- Social compromises.
- Physical limits.
- The constant recalibration between thriving and merely surviving.
If anything, this reinforces why research in so-called “niche” areas matters. Conditions that don’t attract the same funding, prestige or headlines still represent real lives. Real fear. Real impact. The intersection of SCD and menopause. The long-term effects of newer treatments. The psychological toll of unpredictability. These aren’t academic curiosities – they’re daily realities.
And perhaps the hardest lesson in all of this?
Control is largely an illusion. We like to believe that if we plan well enough, optimise enough, work hard enough, we can manage outcomes.
Sometimes we can.
Sometimes we can’t.
Right now, I’m choosing to try hydroxyurea not because I’m fearless, but because doing nothing feels worse. It’s a measured, evidence-informed step – even if the evidence isn’t as robust as we’d like it to be.
If there’s a thread that links my posts about simulation, self-perception and now this, it’s: what happens beneath the surface matters.
The physiology.
The psychology.
The bias.
The fear.
The paddling.
And sometimes strength isn’t about powering through.
It’s about making the next best decision, even when you’re exhausted.
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