Living with Sickle Cell Disease: the struggle to survive

by Judy Gray Johnson
16 May 2014

What is life like for someone who can be struck by excruciating pain anytime, is always tired and can’t keep up with the pace of the world around them? Judy Gray Johnson does not stop at that question. Her concern is how to best deal with a disability both being the disabled person oneself or as their parent, friend or caretaker. Her focus is to pass on important lessons she learned in 71 years of living with sickle cell disease, an illness that tremendously impacts on her everyday activities. Lessons that taught her how to live an independent life, study, work and raise her daughter.

Along with her life story the reader learns about experiencing the symptoms of an unknown illness, the long path to diagnosis growing up in a small town in the US in the 1940ies, and further struggles before receiving adequate treatment although no cure. “People will help you if they see you help yourself.” – Accepting that she is different and taking responsibility for herself allowed her to find suitable ways to approach challenges and reach her goals. She describes walking the fine line between asking for help when necessary without expecting special treatment because of her illness.

Her disease is not visible to the outsider and allowed her to conceal it from others. A mixed blessing that enabled her to live a normal life on the surface, but that was lonely, because it lacked anyone who fully understood her situation. This is where counselling of disabled and their caretakers should come in. Something Judy Gray Johnson did not have, but wants to make available to others in similar situations. Her book is a great inspiration to everyone facing tough challenges or wanting to understand and support people who are.

Diana Mittag

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