If you are the only one in your family or circle of friends who has sickle cell, it can be difficult, especially if you don’t have a support system who understands the disease. I believe more than anything, it is important to educate ourselves on what sickle cell is and how it affects those living with sickle cell disease.
I grew up in a family where I was the only child with sickle cell. My other siblings knew from a young age that Tola falls ill and has something called a crisis from time to time. I was loved and cared for by my immediate family and perhaps spoilt too.
As an adult, I am thankful to have a support system who knows me and understands how I operate. Usually, I tend to not complain about little pains, and I know I am not the only one. A lot of people living with sickle cell have daily or constant pains that they don’t mention to anyone. My people know that if I call, asking for something or saying I am unwell, that means it is quite bad. I know it is the same with many people with sickle cell. We tend to internalise our pain and not talk too much about it. My people therefore know that if I say I am weak, or in pain or can’t go somewhere, now they listen.
In the past though, they might try to persuade me to go ahead, and I have had conversations with friends who wanted me to do something that I knew would be detrimental to my health. Like I said, now though, we are all in a good place and more than anything, understanding is key.
Speaking to other friends within the sickle cell community, I have heard how people would not believe when someone with sickle cell says they are unwell or feeling weak etc. I really can’t comprehend how someone who does not have sickle cell will be the one to tell someone who lives with the disease or disorder how they should or should not be feeling.
Sickle cell affects each one who has it in an individual way. I heard of someone with sickle cell who goes jogging every day; that is admirable, but I most certainly cannot do that. However, to read such a story somewhere and then look at someone like me, who says she is tired often for example and say that I am lazy is a not on.
Putting sickle cell aside for a minute, we all have different strengths and weaknesses in life and as such comparison is not necessary. However, compassion is the key. I asked my friend Dunstan Nicol-Wilson to write about what it is like for him living with sickle cell and his support network:
My support network has helped me to get through many difficult times with sickle cell. However, being the only one with sickle cell in my original support network often made me feel isolated. As much as my original support network was educated about the condition, there were still some things that I felt they just didn’t fully understand.
I always struggled with explaining my feelings. I would think to myself, how do I explain the pain of a crisis to someone that has never experienced it? or how can my feelings be validated if they are not understood? I did my best to fill in the gaps, but I still had a sense of wanting more. There was still something missing. Thankfully this gap was filled by connecting with other patients with sickle cell.
Meeting other people with sickle cell has been a truly life-changing experience. Finally, people that understand, people that just get it! But why did I never reach out to others sooner?
The reality was that growing up it felt like I was the only one with the condition. Sickle cell was never taught or spoken about in my school. When I tried to explain to the other kids what was going on, no one knew what I was talking about. This was also compounded in family life, growing up in my community meant that certain topics regarding health were often not shared or spoken about.
As a child, I internalised this mentality, the desire to fit in outweighed my actual need to be understood. The negative viewpoints I had heard, which were rooted in misinformation and lack of understanding, meant I created a shelter to protect myself from the world. As a result, I chose to be silent about the condition and didn’t really speak about it until early adulthood. I didn’t want to be the odd one out.
Gradually in accepting sickle cell as a part of me, I began to break out of this shelter. When I met others with the condition who understood me, the final part of me, I broke out entirely! Sickle cell isn’t a one size fits all condition and it has impacted everyone I have met differently. Yet, there are many commonalities in the experiences we have faced.
We all have at least one negative experience with healthcare or treatment. We have all been labelled or stereotyped one way or the other. Although with all the negatives we have developed a sense of strength, patience, and appreciation of life which allow us to keep going when faced with so much adversity.
These past few weeks I have been able to meet with other patients and it reaffirmed how amazing we all are. In our trials and tribulations as sickle cell patients, we have found a way to continue living fulfilled lives. It gives me confidence and strength to know that I am not alone, that there are other sickle patients out there pushing the boundaries. Making the most of the cards we have been dealt.
If you would like to get in touch with me about this article or about sickle cell, do so, via email: [email protected] and do visit my blog: www.howtolivewithsicklecell.co.uk. The e-copy of my book on Sickle Cell – How To Live With Sickle Cell is available for purchase on www.toladehinde.com and if you want to purchase a paperback version, it is available on Amazon.
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