Sickle Sagas — Dunstan Nicol-Wilson

For me, stress is one of the biggest triggers of sickle cell crises. As a child, it wasn’t easy to identify when or why I was stressed. Although I try to do this now as an adult, I tend to ignore stressors until it’s too late. Stress can come…

I’ve been reflecting on what it means to have an invisible condition. Sickle cell disease is often called an invisible illness because you can’t immediately see it and it’s poorly understood. Life would be easier if people could tell that I had sickle cell and not make assumptions…

As I write, a familiar chorus plays in the background, followed by the line, “Please swallow your pride.” Aside from the hook, I’ve never really listened to the lyrics of Bill Withers’ “Lean on Me,” but this line struck me. As someone with sickle cell disease, my stance…

February is often known as the month of love. That makes it an interesting time in the sickle cell community, as I often see differing viewpoints on how to approach dating with the disease. This week, I’ll be speaking on Instagram about love and sickle cell. To…

For Rare Disease Day on Feb. 28, I’ll be speaking to medical professionals about sickle cell disease and how they can better support our community. It’s a brilliant opportunity to influence future change and leave a lasting impression on healthcare professionals. In preparation, I have reflected on…

The beginning of this year has been difficult for me because I have felt unmotivated in my sickle cell disease advocacy. At the end of 2022, I didn’t set any concrete goals for the new year and wasn’t excited about what was to come. These feelings are far removed…

A few weeks ago, I spent a weekend with new family members, and it was the most action-packed weekend I’ve had in a while. I was exhausted by little people! I helped set up a 3-year-old’s birthday party. I was a pretend patient for the newest toddler doctors and at…

I recently began training to become a mentor to children with sickle cell disease. As part of the preparation, I’ve reflected on my teenage experiences with sickle cell. What was my mindset during that period? I was fearless and ignorant of my limitations. I thought I was invincible.

Winter has arrived here in the U.K., and the end of the year is fast approaching. During this period, it becomes difficult to avoid things that can trigger a sickle cell pain crisis, including cold weather, stress, exhaustion, and an unbalanced diet. While some things are in my…

In my quest to better manage sickle cell disease, I’ve been thinking recently about the concept of delayed gratification. This involves resisting the impulse to accept an immediate reward in the hope of obtaining something more valuable in the future. I’ve heard this term mentioned a lot in reference…

I can be a slow walker, which is controversial for someone who grew up in the city. The hustle and bustle of city life dictates that somebody, somewhere, is in a rush to get to where they need to be. It’s not that I’m incapable of walking faster, although sometimes…

My ultimate goal as a sickle cell advocate is for advocacy to no longer be necessary. I’m a private and introverted person and usually prefer to keep to myself. However, as an advocate, I must put myself out there and leave my comfort zone to share my journey with…