Continuing My Sickle Cell Disease Advocacy as a Mentor

Columnist Dunstan Nicol-Wilson is helping teenagers navigate sickle cell disease

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by Dunstan Nicol-Wilson |

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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. I did whatever I wanted to do and suffered the consequences later.

Hospital admissions and intolerable pain were the consequences of my actions. Yet I didn’t regret overdoing it because I felt that I hadn’t missed out on what I wanted to do. During hospital admissions, I would will my body to hurry up and heal. To my detriment, I would leave the hospital earlier than I should have, because I wanted to return to being a “normal” teenager.

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When a Crisis Occurs, I Must Be Honest About the Pain

One of the challenges I will probably deal with as a mentor is managing the expectations of my mentees. I’ll need to give reasoned advice based on what’s best for their well-being. My advantage is that I’ve been in their shoes. I can understand what it means to have a chronic condition you can barely comprehend while trying to define your identity.

At that age, I didn’t listen to adults who didn’t have sickle cell disease when they told me to prioritize my well-being. At the time, missing out on things because of sickle cell wasn’t an option for me. So I had to make up for the missed days.

It’s still challenging for me to miss out on activities to protect my well-being. But I’m not as young as I used to be. With age come random aches and pains from activities I could previously do without a fuss.

I’m learning to embrace these changes because my aches and pains aren’t always related to sickle cell crises anymore. The consequences of some of my actions as a teenager have probably caught up with me. However, this isn’t exclusive to patients with chronic diseases. It’s part of life and the aging process, another adjustment to get used to.

Forgetting my limitations has dire consequences for my body. Unfortunately, as a teenager, I lacked the knowledge or experience to care about any of this. I hope to use my experiences to encourage my mentees to make better choices.

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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