Being a mentor allows me to share what I’ve learned about sickle cell

I feel a responsibility to help empower younger generations of patients

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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One thing I enjoy doing in my life is mentoring young people with sickle cell disease. I decided to become a mentor a few years ago in order to share my experiences and help others avoid the same mistakes I made while managing the disease.

Interacting with each mentee has taught me a lot. One thing that stands out to me is that the younger generation seems more outspoken about their experiences with sickle cell disease than we were at that age. My mentees prevent sickle cell from getting in the way of their lives, and they’re open about their condition.

When I was growing up, I refrained from physical education because my mother thought it would be better for my health. But I’d lie about it and say I couldn’t participate because of a stomach issue or a breathing condition. I couldn’t openly admit that I had sickle cell disease, because it seemed like no one understood what it was.

The fact that my mentees are willing to seek out a mentor shows their willingness to find someone who understands and can relate to them.

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Guidance during the transition

Being a mentor is rewarding, but it also comes with the responsibility of helping to empower them on their journey with sickle cell. One area in which I encourage my mentees to feel empowered is at their doctor appointments and during trips to the hospital.

My mentees are beginning to transition from pediatric to adult care. This can be difficult because it involves several changes to their care. The healthcare teams they’ve spent their formative years with are replaced with new ones that aren’t as familiar with their needs.

During my pediatric appointments, I was always passive. I never had questions or concerns; I just went with the flow because it was easier. My mum asked all the questions, so I just followed her instructions. But when I transitioned from pediatric care to adult care, suddenly I was responsible for making my own appointments. It was a bit shocking at first.

Initially, my appointments after the transition were brief. I’d show up, answer yes or no to some questions, and quickly leave in order to get back to my everyday life. During my first hospitalization, I was treated very differently in the adult ward than in the pediatric ward. I don’t believe my pain was taken as seriously as it was when I was a child. Plus, my care team wasn’t quite familiar with my needs as a patient.

To improve my care during future hospitalizations, I needed to learn how to work with my care team in a way I wasn’t familiar with. I needed an up-to-date care plan. I also had to develop a better understanding of outpatient services and the support that was available to me when I had a crisis.

With this new knowledge, along with the new relationships I built with my adult care team, I was empowered to discuss my care. I’d discuss my treatment plan and lifestyle choices and address any other concerns I had. These discussions helped me build a solid foundation that allowed me to refine my care plan and lifestyle since then.

Sickle cell disease is a genetic condition, and every person’s experiences with it are different. Treatment plans and lifestyle changes don’t always work for everyone in the same manner. Given these nuances, I want my mentees to feel a similar sense of responsibility for managing their health. With their willingness to be open about it, I’m confident this added sense of responsibility will make transitioning to adult care a lot smoother than what I experienced.

When it comes to your own body, you are the expert. Of course, it’s important to listen to your doctors, but there should always be space for patients to discuss their symptoms and care and offer opinions. I want my mentees to be confident and knowledgeable about their healthcare needs.

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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