Every person living with sickle cell disease will tell a different story about how the condition has affected them, and I’ve learned over the years that sickle cell disease impacts everyone differently.
Sickle cell disease is a hereditary disorder that is inherited from both parents who have the sickle cell trait. It is a blood disorder that causes the red blood cells to become misshapen and break down. This change in the shape of the red blood cells causes the red blood cells to clog up and obstruct the flow of oxygen, which then causes pain or other complications to the affected area of the body. Many people associate sickle cell disease with this pain, but there is more to sickle cell disease than that.
My first sickle cell crisis
In 2016, I was preparing for my first exam at my university, and I was excited and nervous. The pain started as a minor ache in my lower back, which I ignored because I thought it would get better if I just rested.
I took a nap, which was interrupted when the minor ache had become more intense. It became a hammering pain in my lower back which gradually moved up my spine. I could barely walk; I could only make it into the hospital by leaning on my parents for support.
It was around midnight, so everywhere was silent and calm, but I could feel and almost hear the pain slamming against my ribs. When I was seen, the nurse decided to give me a medication that calmed my nerves and sent us back home so that I could relax and sleep.
But then later that night, the pain came back worse than ever. I was in tears, and returned to the hospital where I was admitted to get better care. My red blood cells had become so clogged up they had stopped blood flow from reaching the muscles in my black. This is an incredibly painful medical emergency called a sickle cell pain episode or crisis. I am grateful that I have a good relationship with my doctor who is also a sickle cell disease advocate. That way, if I ever do go to the hospital, I know I have someone who’s on my side. Fortunately, they are rare for me, and I haven’t experienced one since. However, even though I don’t have these pain episodes often, I have dealt with other complications of sickle cell disease.
Self-denial and sickle cell
Growing up as a child with sickle cell, I lived in self-denial. A lot of things contributed to this, and one of them was the information I got as a child with sickle cell disease. As a child, I was led to believe that people living with sickle cell are always in the hospital, and there weren’t many options for help. However, I later found that scenario wasn’t true for me. In fact, I didn’t miss school because I was admitted and I didn’t have much pain so it was difficult to accept that I was living with the disease. This self-denial attitude made it difficult for me to find where I belonged. I found it difficult to advocate for myself and tell people how sickle cell was affecting me or how I wanted to be treated.
It took me a lot of years and connecting with the right people and information to become educated about the different ways sickle cell impacts those who live with it and the different ways that the condition can progress. It was only after I increased my knowledge of sickle cell disease that I began to come to terms with the fact I was going to have to break out of my denial and deal with the fact that I was living with this condition.
How sickle cell has impacted my body and my life
The first sickle cell complication that I had from sickle cell disease was delayed growth and anemia. Because my red blood cells aren’t made like typical red blood cells — they are sticky, inflexible, and the wrong shape — they get tired quickly and die sooner than normal. The normal red blood cells die within 120 days but in those with sickle cell disease, red blood cells die within 10-20 days. This means that there is a shortage of red blood cells. The shortage causes anemia and delayed growth.
I was the smallest kid among my peers, which caused me to feel insecure about my body and become socially withdrawn. It was difficult building a relationship with others because I thought people would think of me, and I always felt like I was being judged because of my size. So, I avoided socializing with others. The bullies in my school didn’t make it any better for me. I felt powerless to stand up against them because I knew I couldn’t physically protect myself. In addition to the impacts on my stature and mental health due to bullying isolation, sickle cell also caused me to have anemia because my red blood cells can’t carry enough oxygen to the tissues in my body. Due to anemia, the whites of my eyes have a yellowish-tinge, my skin looks pale or gray, and I experience a lot of fatigue. I could not partake in many school activities because of the fatigue. I used to play football in the compound with my neighbor and my older brother and I always get tired first and fast. Some days, it gets so worse that I can’t even find the strength to get out of bed.
Despite the challenges I faced as a younger kid, I met some great friends as a teenager who helped me better understand myself and feel more accepted despite a sickle cell disease diagnosis. Today, I’m 24 years old and although I still struggle with sickle cell disease, I have found that the experience has taught me empathy and compassion. I never hesitate to help others because I understand what it’s like to struggle and experience pain.
If you’re reading this and feeling overwhelmed by the diagnosis, know that you’re not alone. It took me a long time to realize for myself that sickle cell disease does not have to define you – get to know yourself, what you love and what your passions are. There’s more to you than sickle cell disease.
I love talking and sharing my story about my illness (sickle cell disorder), and I want to help other people living with chronic illness become comfortable sharing their stories.
abayomi