Why I’m Open About My Experiences With Sickle Cell

Mary Shaniqua avatar

by Mary Shaniqua |

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One of the many stereotypes of British people is that we can be extremely reserved.

In many places in the world, it is common for people to greet one another on the street each morning. This is rare in the U.K., specifically in the southern part of the nation. If you’re ever in London on a busy morning, you’ll likely see many people walking speedily past one another with their heads down, perhaps while looking at their phones, and with no time to wave, smile, or nod to passersby.

Our reserved nature isn’t only evident in the lack of “good mornings,” it also filters into our everyday lives, including an unwillingness to speak about private affairs such as health.

Because I’m of Nigerian descent, I grew up in an environment where it was taboo to tell other people about your health problems. Within my specific ethnic group, Yoruba culture, we have a belief that you should not share your struggles with other people.

Though I can be quite reserved about most things, I do try to be an open book about my health and my experience of living with sickle cell disease.

In my younger years, this would rub my mum the wrong way because it was so countercultural. It directly opposes both of the cultures I grew up around. However, both my mum and I have seen how being open has reaped dividends for me as well as other sickle cell patients.

This encourages me to remain as open as I can about my experiences, but internally, it has still been a battle. It has taken me many years to feel comfortable sharing some of my most vulnerable moments with people. It helps to know that my openness benefits other patients.

In my 30-odd years, I have met many people who have no knowledge of sickle cell. Even when people are aware of the condition, they tend to still lack an understanding of the impact it has on every sphere of a sickle cell patient’s life.

Though it may be countercultural, I have found that being open about my sickle struggles helps raise informed awareness of the condition.

Because many sickle cell patients are ignored or have their opinions disregarded, it is critical that we persevere in articulating our experiences and struggles. Also, people can only improve their behaviors toward sickle patients if they are acutely aware of the condition’s wide-ranging effects and how their behaviors impact our community.

I have never seen sickle cell in mainstream media in the U.K. However, this seems to be shifting as a result of the pandemic and the deaths of 19-year-old Richard Okorogheye and 21-year-old Evan Smith, both of whom had sickle cell.

People appear to be more interested in learning about the disease. They want to help where they can — not just healthcare professionals, but everyday people. This is vital, because it’s everyday people who may go on to encounter sickle cell patients in their professional or private lives, so educating them is important.

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For example, my current line manager knew nothing about sickle cell before meeting me. However, now they are well versed on the condition and the challenges it can bring, and how to navigate them in the workplace. Now, if my manager hires another sickle cell patient or encounters one elsewhere in life, they will be better equipped to support them.

I’d like to encourage sickle cell patients to be as transparent as possible while employing confidentiality when required. I describe myself as an open book. I speak and write frequently about sickle cell and its impact on my life. However, I have boundaries, and some things I won’t share publicly. It is normal to not want to share everything in great detail. Not everything needs to be shared.

It is important to remember that only when society better understands our unique struggles can it provide us with adequate support. People can only understand the condition if those of us who have it are open about it and any limitations we experience as a result.

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Note: Sickle Cell Anemia 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 Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.

Comments

Alvin R Robinson jr avatar

Alvin R Robinson jr

Thx for sharing

Reply
Sarat Adebayo avatar

Sarat Adebayo

Thanks dear for sharing, you inspire me, keep it up. You're right, due to our yoruba culture, it is not encouraged to share our struggles even our happiness has limit of sharing based on our societal belief. As a mom of 2 worriors, am learning to speak up to get help needed. Initially, I was devastated but not anymore life goes on, it is not a death sentence. Tqvm

Reply
Debbie avatar

Debbie

Thanks for sharing your thoughts on this wonderful sets of people. I'm also one
God has been faithful.

Reply
Joshua Cobbinah avatar

Joshua Cobbinah

Very encouraging 👍

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