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Sickle Cell and Living in Denial

Last updated: May 2022

I think being in denial that you live with sickle cell is something many warriors can relate to, especially if you live in Africa.

In Nigeria (where I'm from), despite the high number of people living with sickle cell, society is not encouraging enough for warriors to come out boldly. The sickle cell topic seems taboo; you shouldn't talk about it or give it any attention.

Speaking up is better now with my generation. The older generation had it worse. Sickle cell was a topic to avoid and people living with sickle cell were treated more like outcasts.

The stigma of sickle cell in my family and community

I grew up in a family of 3 children, two of which have sickle cell disease. As a teenager, I noticed that some topics felt awkward talking about because we were not supposed to talk about them. One of them was sickle cell disease.

My mom would frantically deny that I have sickle cell whenever anyone asked if I was a "sickler", despite the obvious features like my yellow eyes, small stature, and skinny figure. She would even say to me that I was not one.

In her generation and those before hers, the words "sickler" or "sickle cell" had been synonymous with really derogatory terms that no one wanted to associate themselves with. People living with sickle cell have been belittled so much.

For most of my childhood, I was in the same denial she was. Unfortunately, that affected me in so many ways. I do not blame my mom though. As a young adult, I now understand her standpoint.

I am grateful for the internet that has opened my eyes to a much better perspective on sickle cell. I am also grateful for meeting the people who redefined how I see myself as someone living with sickle cell.

How denial affected me as a child

I wasn't confident in myself

I don't think I ever hide the fact that low self-confidence is something I struggle with. Growing up, I felt like I was the least confident person in the country.

People who knew me thought that I was just shy and didn't speak a lot. But deep down, I know it was just my insecurities telling me that no one wanted to hear a small, skinny child talk or stand up or be brave.

It was difficult to make friends and feel like I belonged

Looking back now, I see how being in denial made me so lonely. Although, being lonely had its positive effects on my life.

One of the recipes for living well with sickle cell is to build a strong network, whether that is a network of friends or family. It is important to have strong relationships with people so that when you are down, you can reach out to them.

It was obvious that I wasn't like other kids. I would get tired easily, I couldn't play as hard, and I was also treated differently by the teachers in my school. No other child in school was like that, so I did not feel like others. It was like I was isolated even when people were around me.

I struggled to advocate for myself

It is not abnormal for some people to not know about sickle cell disease, but as someone living with the condition, it should be my responsibility to educate them and tell them how it affects me. This will help them know how to treat me and what to do.

Unfortunately, growing up in denial made that difficult. I do not even know myself so there's no way I can advocate for myself. There is no way I can tell people what I want and what I do not want. This also goes into setting boundaries in my relationship with others and making sure that they respect those boundaries.

Growth and acceptance

I grew up living in denial that I had sickle cell. However, thanks to all of the positive things and people I was exposed to, I have grown to understand that sickle cell is nothing to be ashamed of.

It has taken me many years to build the confidence to tell others that I live with sickle cell, and every day I am getting more confident and comfortable with that fact.

At the end of the day, everyone has a cross that they have to bear and sickle cell is one of mine. I am going to carry it with so much pride.

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