Learning How to Say No With Sickle Cell

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by Dunstan Nicol-Wilson |

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At this stage in life, I know my body pretty well. I’ve gotten better at avoiding my triggers, which means I have fewer sickle cell crises than I used to. For example, I try not to expose myself to cold weather, exhaustion, or stress, but that alone can be a full-time job.

As winter arrives here in the U.K., it becomes harder to avoid cold weather. So, recently, I’ve been thinking about how to avoid setting off my other triggers. This means saying no to many social events I’d usually attend. Yet, I’m often conflicted about this decision because I don’t like missing out on things because of sickle cell.

Two weeks ago, I was preparing to travel abroad with my family, but I had tickets to a WizKid concert the day before my flight. WizKid is one of my favorite artists, and in fact, he was my top artist this year, according to Spotify Wrapped!

I was caught in a dilemma: Should I risk triggering a crisis by attending the concert, or should I sell my tickets? I was also extremely exhausted from work, and the weather was freezing.

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How I Try to Avoid a Cold Weather Pain Crisis

For most people, this wouldn’t be an issue. They’d simply do both and find the time to rest at some point. But given my health, this never felt like an option. I worried that pushing through my fatigue would trigger a crisis. After an internal debate, I decided to sell my tickets.

It was difficult to feel like sickle cell was getting in the way — not even by causing an actual crisis, but simply by creating the potential for one. I will never know if the concert would have led to a crisis, but I do know that I missed out on a fun experience. I’d be lying if I said I didn’t regret my decision, but I had to prioritize my health.

This was a departure from my usual can-do, push-through-anything attitude. A younger, less battle-hardened version of me probably would have done both. However, I’ve missed out on a lot because of crises. Over time, I’ve learned to say no and listen to my body. But I wish it didn’t have to be at the detriment of fun experiences.

In this scenario, I knew both experiences would be amazing, but I had to decide which one I’d enjoy more. Ultimately, the trip with family was the right choice for me and my body. I have been fortunate to travel often, but almost every trip has involved a pain crisis. With planning and rest, I was able to have a crisis-free trip, and luckily for me, the concert was streamed online!

I would have loved to attend in person, but I have accepted that sometimes doing what is best for my body means giving up things I want. This doesn’t mean giving up on everything — just choosing and planning carefully. There will always be more concerts and fun experiences, even with sickle cell.


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.


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