Finding a Balance Between Supporting Others and Protecting My Health

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by Dunstan Nicol-Wilson |

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As an adult, I’ve been privileged to have a small community of sickle cell patients that I can connect and share experiences with. As winter approaches here in the U.K., I’ve noticed on social media that many sickle cell patients are in the hospital. I empathize with them, because it could easily be me in that hospital bed suffering from a sickle cell crisis.

I try my best to reach out and offer support whenever other sickle cell patients are hospitalized. However, sometimes I feel overwhelmed and block out all social media posts to avoid triggering my trauma. I have often felt guilty about doing this, because it’s a privileged position to be in. I want to support everyone with sickle cell, but not to the detriment of my mental well-being.

I’ve been reflecting on whether it’s a good idea to be involved in the lives of other sickle cell patients, which often reminds me of my past struggles. Would it be easier to isolate myself from the community and remain ignorant of others’ struggles? Out of sight, out of mind?

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Give me shelter

Growing up, my mother sheltered me from other patients and the negative perceptions of their lives. She didn’t want me to think that having sickle cell meant always being in the hospital, unable to do anything. This allowed me to grow up without any mental obstacles regarding my future with sickle cell.

However, it also inhibited my ability to connect with people who shared my condition. I often felt like I was the only one with sickle cell. I couldn’t comprehend why doing the same activities as other kids could mean ending up in the hospital.

Reaching out

Googling my disease was terrifying, as it exposed me to the reality of complications my mother had tried to shield me from, such as early mortality, bone replacements, and loss of sight. Thankfully, I was raised to believe that anything is possible, and I didn’t absorb these potential outcomes as my own.

This exposure fueled my desire to meet others with sickle cell, both in the U.K. and across the world, and learn more about their reality. As I became more vocal about my disease and its impact on me, I met many other patients. As fellow Sickle Cell Disease News columnist Tito Oye wrote in a recent column, meeting other patients allows us to find people who truly understand what we’re going through.

I have been so inspired by the community’s stories. Everyone is doing amazing things despite sickle cell. The negative stigma is false for many patients.

I don’t regret being so close to the traumatic events other people face. Seeing other sickle cell patients in the hospital reminds me to do my best to avoid my triggers and maintain my health, but also to support my fellow patients and share their stories. As one of the few who understand sickle cell, I need to help when I can.

I will not go back to being isolated from the community. I will find a balance between offering support and protecting my well-being. As sickle cell patients, we are not alone. It’s important to be connected, especially during difficult times.

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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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