Navigating fear and uncertainty after a sickle cell pain crisis

Whew! I’ve been on a rough ride recently. Regular readers of my column may have noticed that I’ve been absent for a while.

Living with sickle cell disease has taught me resilience, patience, and the importance of listening to my body. It’s also reminded me how unpredictable and overwhelming this illness can be. While I’ve faced many sickle cell crises before, this most recent one brought its own set of challenges and forced me to slow down.

A few weeks ago, I was hospitalized after a crisis began in my chest and spread throughout my entire left side. At the time, I thought I’d been managing my stress well enough, but it became clear that any stress — whether it’s work-related, personal, or just life’s pressures — can set off a chain reaction in my body. In my case, this stress meant a sudden and painful sickle cell crisis.

After weeks in the hospital, I was discharged, but I’m not back to my usual routine. Although I’m at home, I’m still struggling with the aftermath of the crisis. My left shoulder, which was heavily affected, remains severely injured. I can’t lift my arm, and basic tasks that I once did without thinking — such as dressing, showering, or even preparing a meal — now require assistance. I’ve had to rely on others for help with everyday activities, which has been humbling and frustrating. It’s a reminder of just how vulnerable I can be when this disease takes hold, and it’s left me deeply concerned that the damage to my shoulder might be permanent.

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I can’t help but worry about the long-term impact of this crisis. I’ve faced many challenges before, but this one feels different. The uncertainty of whether I’ll ever regain full mobility in my shoulder weighs heavily on me. The last time something like this injury happened was in 2019, to my hip. That joint still doesn’t function fully, and it continues to hurt. I hope the story with my shoulder won’t be the same.

Since the crisis began, I’ve been off from work. I’m grateful for the space to heal, but I also feel the strain. Being unable to contribute in the way I’m used to has been tough. As much as I wish I could push past it, I’ve had to come to terms with feeling stuck.

The hardest part of this experience has been the fear that my body might not return to its baseline. There are so many questions I don’t yet have answers to.

But amid this uncertainty, there’s also a sense of clarity. I’ve realized that healing isn’t just physical; it’s mental and emotional, too. The mental strain of living with a chronic illness is often underestimated. There’s the constant worry, the pressure to keep pushing despite the pain, and the need to manage expectations, both from others and myself. It’s a lot to handle. But through this process, I’ve learned the importance of accepting help, leaning on my support network, and, most importantly, being gentle with myself.

I’m now taking things one step at a time. While my body recovers, I’m focusing on what I can control — whether that’s asking for help when needed, staying connected with friends and family, or taking small steps to regain my independence. I’m working with doctors to understand the extent of my shoulder injury and to make sure I’m doing everything I can to support my body’s recovery.

In closing, I want to thank everyone who’s supported me during this time, from the medical team that’s been caring for me to the friends and family who have checked in and sent messages of encouragement. Your support means the world to me. Though this chapter is difficult, I know it’s just one part of a much larger story.

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.