Having a blog would not be complete without documenting some aspects of living with sickle cell disease. My experiences as a child living with sickle cell disease contributed in many ways to my growth as an adult. I gained so much resilience and strength from the setbacks. So much that I was more determined than ever to live life on my own terms. With the full intention of blooming despite the limitations.
Albeit difficult to give an account of everything in a single post and is still an ongoing journey, I’ll do my best.
My Sickle Cell Disease experience
For those who don’t already know, Sickle Cell Disease (SCD) is an inherited genetic disorder. It causes red blood cells to become crescent or ‘sickle’ shaped. The sickle shaped blood cells obstructs blood vessels, thereby depriving the body tissue of oxygen. This haemoglobin defect can lead to painful episodes and a host of other complications. You can find more information on sickle cell disease here: Sickle cell disease – NHS (www.nhs.uk)
To my personal experience. The actual fact is that I can’t imagine a life without pain. Yes, you read that right! I was born with sickle cell disease and have experienced physical pain all my life. I must admit, I really don’t know what it’s like to not feel any pain for an extended period of time.
The mental pain is there too, although no one talks about that. It’s important to mention the psychological effect of being in constant pain. It clouds the mind and takes over your very existence, for that moment in time. When talking about ‘time’, I’m sure any SCD sufferer can relate to how slowly time moves when in severe pain. The countdown to the pain relief medications kicking in has to be the longest minutes of my life.
Having SCD as a child
Growing up in Nigeria, I didn’t really get to hear about experiences of other people living with sickle cell disease. I hope to use my platform to change that. SCD warriors were often silent about their experiences and it was on a need-to-know basis. Most likely as a result of the stigma that came with suffering from this life long health condition.
SCD complications meant I was in hospital a lot and had many sick days from school. It was common to be labelled a ‘sickler’. The term was used to lay emphasis on the many sick episodes and how frequent the hospital stays were.
I remember a time in junior secondary school. Brisk walking through the corridors of the school hall, when one of my teachers stopped me in my tracks. In a piteous tone, the dreaded question was uttered…
“Are you a sickler?”
Oh how I detest this question. This label. This tone.
To me, the word took away from my entire being and debased my identity to an illness. This illness didn’t define me and I refused to be labelled in such a way. I loved Art, dancing and fashion as a child, and always dreamt of travelling the world. The constant and severe episodes of pain never broke my aspirations. It made me even more determined to define my own path however I could.
Any SCD Limitations?
Oh yes, loads!
I have vivid recollections of school inter- house sports day when I would be desperate to run for my team but just didn’t have the strength or stamina.
How much I wanted to learn swimming or play at the beach. But I couldn’t. The fact was if the water temperature wasn’t properly regulated, it could trigger a sickle cell crisis.
It’s heart breaking how poor the healthcare system is in Nigeria. There were no specialized care available and I was often at the mercy of General practitioners with basic knowledge of SCD. My mother had to tirelessly scrutinize and demand for better quality of care.
Thankfully, I had the support and strength of my mother every single step of the way. She protected me and was my voice in times when I couldn’t stand up for myself. I, in turn, continuously strive to be the best version of myself everyday.
It would have been easy to lose myself in the midst of all the health setbacks. Coupled with the loss of a loved one and the psychological trauma that came with SCD. Seeing people that I knew, and loved, pass away from SCD made me question my very own mortality. However, I soon discovered that death is inevitable. What is within my control is how I chose to live my life, each and everyday.