Returning to sickle cell advocacy after a much-needed break

Prioritizing our well-being is important, even when we're not facing a crisis

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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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 from who I am. Typically I’m annoyingly optimistic and set targets that are crazy by many standards.

However, in the past month, I felt apathy toward many things that usually bring me joy or spark my passion. I was simply a passenger as the days passed.

My sickle cell disease advocacy work took the biggest hit, as speaking about my experiences became extremely tiring. Additionally, my commitment to supporting my community, which once gave me purpose, now felt burdensome.

The metaphorical pen I’d used to encourage, engage, and educate had run dry.

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Continuing My Sickle Cell Disease Advocacy as a Mentor

Taking time to recharge

I felt guilty because, physically, there was nothing wrong with me. It wasn’t the fatigue I get from having sickle cell disease. I hadn’t had any severe crises, and my knees were aching as they usually would. So I continued to wonder, why did I feel so drained and uninspired?

Finally, upon reflection, I realized I needed a break.

I usually only take breaks during holidays or when I have a sickle cell crisis. My mind was telling me I needed a break, but feeling drained without the pain of a crisis was a foreign experience for me.

So many of my crises result from me not knowing when to stop, which causes my body to shut down. These crises are so devastating that they reset my priorities.

A crisis forces me into a place where pain is my sole feeling, and there’s very little room for anything besides my well-being. I realize that everything I believed to be more important than myself can be rescheduled or canceled.

I’ve been learning to say no to avoid a potential crisis, but I still need to work on saying no for my general well-being.

For example, I shouldn’t volunteer to take a meeting in my spare time if it has no real benefit to me. In my mind, I must attend because I’ve given my word and am not in a crisis. But with how I was feeling at the start of the year, it would’ve been more productive and beneficial to both parties for me to reschedule. If I were experiencing a sickle cell crisis, I would’ve been forced to cancel.

This isn’t to say that when I don’t feel like doing something, I should be selfish and not do it. But I should make decisions that protect my mental and physical well-being. I need to assess what is and isn’t a priority. My guilt about taking a break was misplaced; it was OK to spend time recharging, because now I can give my best going forward.

When the ink in my pen dried up, I just needed time to refill it. With more ink, I can pick up where I left off with a clearer perspective and renewed passion.

For me, the new year starts today.

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.


Desiree Queen avatar

Desiree Queen

You have no idea of how your words are exactly my life as well. You describe a life that not too , many people will understand. Living with this disease is like tip toeing around a giant that you don’t want to wake up! If you do, you will definitely pay for it. I’m 42 years old and I’m still learning not to overdo it. I had lots of complications in my younger years and the doctors spoke against me having children. So I had children later in life, one son at 38 and another son at 40. It often sadness me that I don’t have energy to play with them like I want to. My hips both need replacements and it’s hard to care for little ones in pain. However I do it because my boys are my world. Learning our bodies is very important and helps prevent crises. I just want to thank you for your column giving us a voice.

Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hey Desiree. Thank you so much for your message; it really resonated with me. Hearing your story is inspiring and gives me a renewed energy to keep writing. Wishing you and your family all the best! I appreciate you.


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