I can’t always identify the causes of a sickle cell crisis, despite my efforts

I was recently discharged from the hospital after experiencing a severe sickle cell crisis. It was one of those episodes that lingers. The kind that leaves you grappling not only with physical pain, but with the discomfort of uncertainty.

Perhaps it’s due to my professional background, but I have always tried to make evidence-based decisions. That inclination has shaped the way I approach my life with sickle cell disease. Over time, I’ve become meticulous about data collection. I log everything: pain levels, hydration, sleep patterns, stress, diet, exercise, medications, even my menstrual cycle. I track trends, note anomalies, and search for patterns.

This approach has, for the most part, been extremely helpful. It’s allowed me to uncover personal triggers others might miss. It was how I discovered that my menstrual cycle often precipitates a crisis, and it’s helped me identify a host of other contributing factors. In a world where sickle cell can feel so random and unforgiving, this data-centric strategy has offered me a sense of control — a sense that I can anticipate, mitigate, and sometimes even prevent what’s coming.

But what happens when the data fall flat?

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A difficult pill to swallow

This most recent crisis was a tough one. The pain was widespread and prolonged. Yet, when I combed through my logs and lifestyle in the days and weeks prior, I couldn’t find a single trigger. No missed medication, no dehydration, no overexertion. Nothing! It wasn’t a reaction to something I did or failed to do. And that can leave me feeling stuck.

Here’s the biological reality: My bone marrow continuously produces sickle-shaped red blood cells. That isn’t something that happens only in response to specific triggers; it’s constant. And so, while I might be able to avoid certain factors that increase my risk of a crisis, the disease itself is always present, always active in the background. Theoretically, I understand this. But emotionally, it’s hard to accept.

In this case, the crisis came seemingly out of nowhere. My hemoglobin levels dropped suddenly. Then, while I was still bedbound in the hospital, they plummeted again over the course of just three days. There was no identifiable external cause. It was simply my body doing what it does when sickle cell decides to assert itself.

Sickle cell disease cannot always be managed with diligent patient behavior. It’s not like managing a broken leg, where rest and time lead to a predictable recovery. Nor is it like managing certain lifestyle-related conditions, where strict adherence to a regimen can prevent flare-ups. Sickle cell often has a mind of its own.

That’s a difficult pill to swallow — especially for someone like me who finds comfort in data, in logic, in patterns. When the condition doesn’t respond to these strategies, when all the metrics are right, but the outcome is still adverse, it can feel like a betrayal. I was angry and frustrated to find myself in so much pain for “no reason.” I use those quotation marks intentionally — because of course there was a reason, just not one I could see, influence, or understand.

This is one of the less visible burdens of sickle cell disease. It’s not just the pain, the fatigue, the hospital stays — it’s the mental toll of living with unpredictability.

Sometimes, all you can do is accept. Accept that the disease will act without warning. Accept that no amount of vigilance can offer immunity. Accept that, on any given day, you might go from a normal life to absolute turmoil. And in that acceptance, perhaps, lies a different kind of power — one rooted not in control, but in resilience.

Living with sickle cell means constantly walking a line between strategy and surrender. It means preparing meticulously, even while knowing that preparation may not be enough. And it means forgiving yourself when the disease outpaces your efforts.

When I left the hospital, I was still experiencing harsh bone pain in my shoulder, wrist, and fingers. This scared me deeply. The last time I left the hospital with the same sort of pain — though then it was in my hips — was in 2019, and that damage turned out to be permanent. What was new pain back then has since become my daily reality. Nothing has been the same since. I can no longer walk the same distances. I don’t move with the same ease. I even require adaptive equipment to manage my personal care needs.

So, this time around, I was absolutely terrified. Scared I might lose functional use of my shoulder. Scared I wouldn’t be able to hold a book, type freely, or use my phone without pain. The thought of further loss was overwhelming. Thankfully, the bone pain in my shoulder, wrist, and fingers has begun to decrease, albeit slowly — and for that, I am beyond relieved.

I am learning, gradually, that healing isn’t always about having answers. Sometimes, it’s about making peace with the unknown — and continuing anyway.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.