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.
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.
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.
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:
It is well
Hmm
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