As a teenager, my chronic illness made me so exhausted that I couldn’t function. I didn’t have the energy to do anything, and slept half my life away. I felt awful for not being able to keep up with my peers – why did they all seem to find everything so easy when all I did was struggle?
People saw me as lazy, unmotivated, not trying hard enough, and definitely not living up to my “potential”. As a previously bright kid, my grades dropped off considerably and I felt that I was falling behind in everything. My illness also crushed my self-esteem, leaving me feeling worthless and completely alone. The worst part was I didn’t even know why.
My diagnosis, years later at age 17, was a mixed blessing. I was so relieved to find out that my inability to keep up wasn’t simply a personal failure, but my condition does not have a cure, and the lifelong sentence of a malfunctioning body is tough to come to terms with. I felt some vindication, but also a lot of hopelessness and loss – the future I’d always dreamed of now seemed permanently out of reach.
It wasn’t until years later that I finally found some hope, through a Facebook group where I could connect with others who had the same chronic illness. It gave me a new lease on life. Seeing that so many others were having similar experiences and emotions allowed me to differentiate myself from my condition. I gained a new perspective, even using what I’d learned over years living with chronic illness to help others who were only at the beginning of their journey.
Working within my chronic illness community has continued to be a big part of my life in the years since, and I’ve helped to build up our community on social media. Getting involved gives me a sense of fulfilment and motivation in life that I don’t imagine I’d have otherwise. It has also put me in contact with many others across the globe who have become good friends. Being able to share my struggles makes me feel like they at least had some purpose, as I can now use them to help others.