When I was younger, I hated taking medication. It didn’t sit well with me that I had to take it for something I never asked for. Having to do it every day was particularly difficult, and when it came to managing pain, the size of some of the tablets and…
Sickle Sagas
— Dunstan Nicol-Wilson
Dunstan Nicol-Wilson is a clinical project manager from South East London, United Kingdom. Dunstan has his master’s in public health with a global health focus. Dunstan was diagnosed with the “invisible disorder” sickle cell disease from birth in 1993. He hopes that his column will raise awareness for this disease, encourage others to share their stories, and showcase all the ups and downs of living with a rare condition. Dunstan loves anime, cooking, and Manchester United.
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Lately, I’ve been thinking about how my experiences with sickle cell disease influence my decisions when I feel pain, such as how quickly I reach for medication. When I was younger, I might have waited until my pain reached a 7 or 8 on the pain scale before doing…
If you’ve read my columns, you know how much I praise and appreciate my support system. Everyone close to me knows I have sickle cell disease, so I rarely have to explain it or worry that they’ll panic about my health. They see me regularly, and I’ve learned to…
Recently, I’ve been struggling with a departure from my normal routine. I’ve written about how exercise and good nutrition have helped me manage my sickle cell disease, but I’ve been traveling a lot and have found myself thrown off balance in ways I didn’t anticipate. At first, I blamed…
One of the hardest things about growing up with sickle cell disease wasn’t the pain. It was the limitations — not just those imposed by the condition itself, but also from other people’s expectations. Like many patients, I grew up hearing what I couldn’t do. The conversations weren’t always…
Five years ago, I wasn’t sure I could do this. I remember staring at a blank screen and wondering whether I had anything worth saying. I knew what it felt like to live with sickle cell disease — the pain, the hospital admissions, the exhaustion, the grief. But writing…
Last in a series. Read part one. As the sickle cell pain crisis crashed through my body, I started gathering everything I needed before eventually becoming bedbound: water, medication, a heating pad, food. In doing so, I realized I’d become a bit complacent. Because I’d been in such…
First in a series. If you’ve read my recent columns, you’ll know I’ve been in a really good place with my health as someone with sickle cell disease. I credit a lot of that to the work I’ve been putting in at the gym to strengthen my body.
Having a remote job has been a game-changer for me as someone with sickle cell disease. I’m better able to manage my health — no rushed mornings, cold commutes, or physical strain. I can plan my day to suit my body, whether that means resting, going to the gym,…
As the season shifts from winter to spring, I’ve found myself reflecting deeply on what this past winter has meant for me. Historically, winter has been the hardest part of my journey with sickle cell disease, marked by crisis flare-ups, increased pain, and a constant awareness of…
One of my most important takeaways from therapy is the idea of building a body of evidence — proof that things can go well, and that my fears don’t always predict my reality. This applies to many areas of my life, but most recently to my relationship with cold weather,…
I recently had the first-ever MRI scan of my brain, not something I ever expected. Getting an MRI came up during one of my routine sickle cell disease checkups, appointments I usually have every six months. As the doctor reviewed my medical history, she noticed something important. Here…
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