Living with Sickle Cell Disease: A journey from hospital bed to author
ESSAY - 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...
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.
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.
I wrote Sickle to be an encouragement to other SCD patients as well as a tool to educate the medical community from the patient’s perspective. Learning to advocate for myself taught me to teach others that they are their own best advocates, because we know our bodies better than anyone. As I began my journey to support other SCD patients, and educating the medical community from the patient’s perspective, I become more aware of the different protocols that states follow while caring for us. There is no uniformity regarding treatment and care.
For an example, if I was a heart patient and I was visiting family in Florida and I experienced a heart attack, there is a specific protocol the medical professionals will follow. Once I returned home to North Carolina and I experienced another heart attack, the medical professionals will follow the same protocol. There is no consistency for SCD. This has caused major issues for SCD patients and, as a result of the lack of education and understanding for this disease, thousands of patients die prematurely.
Dr. Martin Luther King stated, that “of all the forms of inequality, injustice in health care is the most shocking and inhumane.” I am determined to change the state of Sickle Cell Disease.
My journey from a grassroots movement to a meeting at the White House to brief Kareem Dale, special assistant to President Obama continues. As of today, World Sickle Cell Awareness Day, we will make history. We have planned a very huge campaign that will bring Sickle Cell Disease out of the shadows to a trendy topic on social media. We have many celebrities that have over 500,000 followers ready to tweet a message to raise awareness for Sickle Cell Disease.
Vashawn Mitchell, a six-time Stella Award winner and Grammy Award-nominated recording artist, with many other artists have recorded a song just for Sickle Cell! This song is a launch of our “Seed of Hope Campaign” to raise funds to eradicate the disparities that surround this disease national and internationally. This is truly amazing for this disease.
I almost forgot to mention that Ryan Clark from the Pittsburgh Steelers has agreed to be our World Sickle Cell Day Champion!
This all did not happen overnight, my journey has been filled with many ditches, potholes and unexpected curves, like being diagnosed with Lupus and Celiac disease, as if Sickle Cell was not enough. It takes the strength that’s only given by God to help me to put on my cape of Superwoman to continue to fulfill my purpose that He has given me. We all want to live a life of purpose, so I continue to try as hard as possible to achieve as much as possible for Sickle Cell Disease.
To participate in our campaign please log onto to www.gosickle.com. You can help us to give Sickle Cell a voice!
Dominique Friend is an advocate for Sickle Cell Disease and author of Sickle, A Personal Story of Pain, Purpose and Perseverance. Follow her on twitter at @sickle1000.