The pressure of ordinary life is enough to cause you to lose your mind, so what causes a person living with a life-threatening blood disorder to take on a huge endeavor like becoming an author and activist for a disease?
To complicate things even more the disease is an invisible one, meaning the damage the disease causes is rarely reflected in the outward appearance.
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My name is Dominique Friend, and I’m 43 years old living with Sickle Cell Disease. My life has truly been interrupted as a result of this dreadful disease. The chief complaint of Sickle Cell is pain. Because of the severe pain, it’s hard for me to function as a normal person.
The pain affects my ability to do simple things like cook dinner on a regular basis or attend football games with my son or other family activities, because I tire easily. I have trouble standing for long periods of time. Every day is a challenge to keep up with my life’s activities. Basic simple activities like going shopping with my daughter or doing a load of laundry can be so draining for me.
I’m sure you all can’t imagine living a life in pain every single day. Consequently, there is a lack of awareness of how severely the disease affects those with SCD and a lack of understanding of the excruciating pain that accompanies a crisis and the overall fatigue and weakness that are the continual companion of those with SCD. Unfortunately, this lack of awareness can extend to health care practitioners as well.
I was once denied pain relief all night long because a nurse ignored my insistence that the medication pump wasn’t working; she thought that I was seeking more medicine because I wanted a high!
After experiencing many more issues like this one, being stigmatized as a drug seeker, often judged by how I looked and made to feel like my pain wasn’t real, in talking with many other SCD patients I found I was not alone in this struggle.
Though my pain, the darkest time of my life, a time I felt like death was literally knocking at my door, my purpose appeared, and my memoir, Sickle, A Personal Story of Pain, Purpose and Perseverance was birthed.