After a stressful time away, a return to my version of normal is on the horizon

It has been quite some time since I was last here. For that, I owe you an apology. The silence, though sudden, was necessary. The past few months have been among the most difficult of my life, and navigating them while living with sickle cell disease has been, quite frankly, a minefield.

Stress is one of the major triggers for a sickle cell crisis. And yet, life doesn’t pause because you have a chronic illness. The responsibilities don’t soften. The hardships don’t politely step aside. Life still brings the good, the bad, and the downright ugly, and people like me are still expected to function through it all. That, in itself, is a reality that often feels painfully unfair.

Ideally, patients want to live a life where these inevitable stressors don’t immediately translate into physical collapse. We want to experience life without bracing for a crisis every single time something goes wrong. That balance is what I’ve been trying desperately to achieve throughout the first four months of this year. And I won’t sugarcoat it; it’s been hard.

For a long while, functioning normally felt out of reach. I stopped working. I withdrew socially. Most days, the only place I went was the hospital. Even stepping outside felt like too much. Slowly, though, I feel a shift happening. I hesitate to celebrate it too loudly, but I believe I may be turning a corner.

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Turning a corner

So what has getting through this season actually looked like?

I started with the basics. Medication compliance has always been a cornerstone of my preventive care, but when your mind is preoccupied with emotional and mental battles, even the simplest things can slip.

For the first time in my adult life, I began using daily alarms to remind me to take my medication. It felt excessive at first, but I realized something important: When your body is already fighting on multiple fronts, it deserves consistency and care, not forgetfulness.

Sleep and nutrition — two other pillars of managing sickle cell — proved much harder to manage. When I’m going through a difficult period, my appetite often disappears entirely. And on the days it doesn’t, my energy and love for cooking certainly do. The result? Endless snacking and an overreliance on takeaway food — the complete opposite of a balanced diet! Sleep was no better. Stress crept into my nights, leaving me staring at the ceiling for hours, only to spend my days exhausted and reliant on naps just to get by. Extreme fatigue was crippling me.

Eventually, I reached a breaking point. Lying awake night after night became unbearable. So I stopped fighting my body. If I needed to sleep at an unusual hour, I slept. If I was awake through the night, I stopped tossing and turning, and instead tried to use that time gently and productively. Surprisingly, that surrender helped more than resistance ever had.

The downside? My already fragile social life took another hit. But if I’m being honest, I didn’t have the desire or capacity to be social anyway. The first time I went out this year, besides hospital visits, was a quiet outing with my husband last Sunday. Apart from that, I’ve been mostly confined to my flat. That might sound concerning, but for me, it felt necessary. Where I could, I stayed in touch with friends by phone or message. I wasn’t always consistent, but I was transparent. I’m lucky to have friends who try to understand the realities of living with sickle cell, and who respect my need to retreat when things become overwhelming.

Even with all these measures, they haven’t been enough to fully shield me. I’ve still battled crises, chronic pain, and hospital admissions. That’s the uncomfortable truth of sickle cell: Sometimes you do everything “right,” and still suffer. Sometimes the disease decides to wreak havoc regardless of your best efforts.

But despite it all, I feel hopeful. Cautiously, quietly hopeful. I sense a return to my version of normal on the horizon, and for now, that’s enough to hold on to.

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.