How locking away my sickle cell pain negatively affected me

A columnist learns to embrace his full identity, sickle cell included

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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I have been on a journey since 2018 to share my experiences with sickle cell disease and help others avoid some of the mistakes I’ve made along the way. This journey has exposed me to many different concepts that I reevaluate regularly. For instance, I’ve written previously about the idea that sickle cell is a beast I try to keep locked away in its cage. Recently, though, I made a discovery about how this “cage” has affected my personal development.

Growing up, I did everything I could to keep sickle cell and the pain it caused me trapped and hidden away. But a crisis would sometimes crash down on me, opening the cage and releasing all of my emotions. I battled internally and externally to hide my pain and suppress my feelings. Once the crisis subsided, I locked everything away in the cage again.

As long as the cage was sealed, I could be a normal kid and do the same things as everyone else. My classmates and teachers had no idea about the beast I kept within me. Hiding it from the world was easier than having to explain it or be treated differently. But this secret also meant that nobody really knew me, and I could influence others’ perception of me.

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The importance of self-care in managing sickle cell disease

The excuses for my absences and lack of engagement were plentiful: I was unlucky and had many accidents that resulted in injuries, I had asthma, I was just a sickly child. I told people I had bone fractures, when in reality I was experiencing sickle cell pain. It was my condition that caused my fatigue and weakened immune system.

These excuses were easier for me to accept than sickle cell. The disease was my burden, and I felt I had to keep it shut away to live in this world.

Reconsidering the cage

But as I think about this more, I realize it wasn’t just sickle cell I was putting in a cage. I was also locking away a part of myself, my inner child — and that part of me never had the chance to fully heal from crises.

Each time I had a crisis, my inner child was exposed, and I would assume that identity. I was vulnerable to negative thoughts and disabled by my pain and emotions. During my recovery, I felt I couldn’t talk to anyone while in this state. The life I’d created had no room for sickle cell or this version of me.

As a result, I never gave my inner child time to heal. As soon as the pain of a crisis subsided, I returned to the version of my life that didn’t include sickle cell. I neglected the part of me that was deeply affected by my disease and locked it away in the cage with my pain.

I recognize now that the cage was never truly sealed. It was constantly seeping into my life, even when I tried to ignore or hide it. As an adult, I can see how detrimental it was to try to keep the cage shut. I never allowed myself to heal from my traumatic experiences with sickle cell.

Through therapy, writing, and speaking about my health journey, I’ve been able to explore myself and begin the work of healing. The cage is open a lot more now, which is scary for me. But embracing my complete identity is necessary on my journey of self-discovery. I wish I’d started this a lot earlier in life.

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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