LIFE WITH SICKLE CELL
Chantelle Pierre is a Sickle Cell Sufferer who writes a blog for the Sickle Cell Society called 'My Invisible Life'. Recently we interviewed Chantelle, and you can hear her share her experiences of the disease in our podcast 'Is Sickle Cell Anaemia a Black disease' on our microsite for the BLOOD season.
Sickle Cell is a life-long blood disorder. It means that some of my red blood cells are sickle shaped and can cause blockages in my blood vessels. This causes excruciating pain which is called a crisis and usually results in a hospital admission. In the last 3 years, I have been hospitalised 22 times, each for 5 nights on average. Being in a crisis can be both physically and mentally traumatic for me. Not only is the pain crippling and agonising, but I also regularly get complications which lengthen my recovery time. During this period I often get frustrated and depressed.
What makes having Sickle Cell difficult to live with is that there aren’t any obvious physical signs, so people find it difficult to relate to. When I was younger, I kept it to myself, mainly because most people had never heard of it. My parents, along with the Sickle Cell counsellors in my local area explained my situation and needs to my schools in case I had a crisis and needed urgent medical attention. I didn’t tell my school friends because I didn’t want to be the odd one out and at the time I wasn’t even suffering from crises. It was during university that I had my first one but even then I kept the condition to myself as much as I could.
A lot of the time I am able to be “normal”, however it is very frustrating when Sickle Cell makes itself known and stops me from leading a life similar to people my own age. I rarely go on nights out now because I find that they usually result in a crisis. I avoided holidaying with friends because I didn’t want to have a crisis and become a burden. The thought of having a one is always in the back of my mind. For example, I always ensure I have my hospital paperwork if I’m travelling far so if the worst was to happen, doctors would know how to treat me. This has proved useful in the past when the doctors have not experienced Sickle Cell before.
I’m learning to accept the fact that I have Sickle Cell. I’ve become aware of my triggers (cold and stress), so I try to avoid them as much as possible. I’ve also come to the realisation that Sickle Cell is what makes me different – it has allowed me to go places, meet people, and do things that I wouldn’t have otherwise been able to. I refuse to allow Sickle Cell to dictate my life and I am learning my limits and trying to live my life to the fullest.
Read more of Chantelles blog 'My Invisible Life' to find out more about her experiences. And don't forget to search for the podcast BLOOD: Life Uncut on iTunes and subscribe to hear more blood stories from Chantelle and many more.
July 5, 2017