Having sickle cell has somewhat changed my life. It is hard to explain to someone with no idea of the daily struggles we face. It is an everyday haul with the pain, the ailing feeling and the contradiction of feeling awful on the inside whilst look perfectly fine on the outside. Definitely, more needs to be done to help the sufferers cope with these daily struggles especially when it comes to dealing and managing their pain. The society at large, imperatively needs to understand the daily struggles we face and learn to be less judgemental when someone with an invisible illness tells them that they are unwell.
The truth is that the majority of times we feel guilty for being in this position and not being able to fit in. We feel very alone with our limitation of not being able to do all the things our friends and family are doing. We feel depressed and anxious as we are unsure of tomorrow. The truth is that we are in pain during the sickle cell crises, and this makes it difficult for us to get out of bed, make work plans or have a normal life. We never remember our first sickle cell crisis, because there are so many of them. Sickle cell is never predictable. In addition, keeping fit can be a challenge and sometimes with our condition even doctors fail to understand what we are going through, especially when you visit a doctor who doesn’t have an understanding of your condition.
I remember when I first understood the gravity of my struggles of living with sickle cell it was so overwhelming that I had trouble managing them. A lack of understanding of the associated pain meant that I was daily in and out of the hospital. This was because I wanted to fit in and engage in activities similar to what my sisters were doing, which, in turn, caused me great harm. This behaviour also made me quit a job the first day, after hours of being there – as my body was in shock. The manager could not comprehend why I needed my desk area to be at a set temperature. I also noticed that several people avoided me as I couldn’t keep up with their demands.
But, the more we talk about these issues, the less we feel alone. We need to exploit both online and offline avenues to increase this information sharing. Also increasingly this dialogue informs an increased number of people around us of a better understating of how we are feeling. And so, I will never stop believing in the power of talking and sharing information on this rarely-talked about disease.
Invisible illnesses are real and the society needs to understand that although we might be perfect outside, a closer look inside will tell a different story. Albeit, once we find ways to get our loved ones and carers to understand our daily turmoil, our struggles tend to get much better, with a massive improvement in treatment.
The disease has really changed me, and many people just don’t understand it and can’t handle seeing you that way. Thus, this warrants a need of love, hope and motivation for the sickle cell sufferers.
Really, for this is all we need. Love from people, hope for tomorrow and motivation to go through every day.