~”What I’m thankful for is that God has allowed me to live a full life in spite of sickle cell.”
I remember so clearly watching my sisters suffer unspeakable pain as children. They both had sickle cell disease that plagued them in their youth, took a hiatus and then ravaged their bodies as adults. My older sister, T’Irma, succumbed to the disease at the age of thirty-eight. My younger sister has been through hell and back, but has thankfully come out on the other side. For years I thought that I was the lucky sister. Of six kids (3 boys, 3 girls), only two girls inherited the monstrous disease. The rest of us, well we only had the trait. It was this trait that caught the blame for my achy knees and fatigue, but I didn’t complain because I didn’t have the disease.
At the age of twenty-one, I was thrown into an extraordinarily stressful situation. The stress caused illness and the next thing I knew, I was being rushed from one hospital to the next by ambulance. Sirens blaring, no one that cared about me was within a 500 mile radius. I was scared and alone. After two days in the hospital, I asked the doctor when I’d be able to be discharged. He advised me that my blood levels would have to improve before I could go anywhere. I looked at him with confusion written all over my face. “My blood levels?” That’s when he informed me that sickle cell had depleted my red blood cells, was the cause of my other illness as well as my pain. I thought he was playing a cruel joke and he couldn’t believe that I didn’t know I actually had sickle cell. For whatever reason, it had laid dormant in my body for my first twenty-one years of life. Un-freaking believable!
Sickle cell disease is an inherited blood disorder that causes the red blood cells to become misshapen and break down. The crescent-shaped cells tend to block the flow of normal red blood cells which carry oxygen throughout the body. This lack of oxygen causes intense joint pain and can lead to bone deterioration, organ damage and a plethora of other major health issues. The breakdown of blood cells adds its own set of problems to the mix. I have friends with sickle cell that have had multiple joint replacement surgeries, other have had organ transplants. For me, it decided that it wanted to affect my heart function. But with blood exchanges (removing my red blood cells and replacing it with donor blood cells) I’m able to maintain a relatively normal life. But then there are the times when it all gets to be too much. When the pain is unbearable, when my chest is heavy and I can’t seem to get enough air. When I can’t move about my house without having to stop and rest. When all I want is to get in a ball and cry. Those are the times that I end up in the hospital with a PCA pump shooting pain meds into my veins.
Whether it’s sickle cell, lupus, cancer , Crohn’s, or any other disease that can’t necessarily be seen on the outside, those that suffer from them know the pain and the struggle that they cause on the inside. The hardest part is people not truly understanding the difficulty of living with these diseases and disorders. I can’t begin to tell you how many times I’ve heard “Girl, why are you breathing so hard? You need to work out more and get in shape.” The classic is “Girl stop! You know there’s nothing wrong with you.” I get that people don’t understand what they can’t see, but their lack of knowledge doesn’t lessen the pain.
What I’m thankful for is that God has allowed me to live a full life in spite of sickle cell. I’ve been blessed to be a mother, a wife, have a successful corporate career, and live the dream of being a writer. I’m able to attend book events, meet and greet readers and be as creative as I want to be. Hospital visits are inevitable, but not as frequent as they could be. I’m of sound mind, strong spirit and a determined will. I will defy the odds and live a very long and productive life.
If you know someone who is suffering in silence, please take the time to educate yourself on their particular illness. Your show of understanding and compassion (not pity or sympathy) would mean so much to them. If you have a chronic illness, be sure to maintain your health with regular doctor visits, a healthy, balanced diet and whatever type of exercise you can tolerate and that has been approved by your physician. Remember, make yourself and your health your priority.
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As I was reading this I kept screaming YESSS!!! People don’t understand what you go through. From the outside you may look fine but on the inside you are in pain. I have Cerebral Palsy and on the outside I have a slight limp. But on the inside I can barely move. Some days I can’t get out of bed because of pain in my joints or even the lack of pain due to my body being numb. It’s tough because there are days where I want to be outside and physically I just can’t. If I can go six months without a hospital stay, I get excited. I just wish that people would try to understand the tasks that they see as ‘normal’ takes a lot more energy for us to handle.
Thank you for sharing as well, Kimberlee. The struggle and strength are so much more than many will ever realize.