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By Beth (she/her), 20
Listen to it here: https://open.spotify.com/episode/3ewwYrpaxo9hN2AuL0U1Zj?si=f6fa584744af435a
Having a long term chronic illness can result in feeling like you are ‘ losing’ lots of things. Being diagnosed at a young age perhaps lessens these feelings; growing up you only pick the things which you are capable of. For instance, I never really have engaged in sport, apart from climbing from time to
time so this is not something that I ‘ lose’ when my condition flares up.
However, this doesn’t mean that you don’t feel acutely aware of ‘missing out’ on things. There have been numerous times I’ve missed out on going out on nights out, day trips and even trips abroad or work opportunities simply because my health isn’t up to it. On a more day to day basis the more acute thing I have lost is, for fear of sounding direct, is my peace of mind. I feel guilty about the stress that my health puts on those close to me and an already struggling health system. I worry about the future. About the unpredictable nature of my health. I worry about using a wheelchair again, having repeatedly experienced the accessibility of the world. I have lost numerous night’s sleep following traumatic doctors’ appointments and difficult days, working myself up unnecessarily, yet unable to calm myself down. I overthink everything, and I love the idea of being spontaneous, I love the idea of being free from pain, not being tied down to a place because of infusions or doctors appointments, and, on a lighter note I have most definitely lost the ability to wear high heels!
However, there are things that you can ‘gain’ by having a chronic condition. For one I have gained relationships with my friends that are so strong they have become my family. Going through challenging things together shows you who your real friends are, and, I have always been humbled by the things that my friends will do for one another. I am beyond proud to call them my friends. The same applies for my real family, the love and support I have had from them cannot be expressed in words, and neither can my gratitude. I have gained numerous opportunities to work with people from across the world to improve research and services for young people, their perspectives expanding the lens through which I look at the world. Last of all
I feel like I have gained qualities within myself. I have learnt how to deal with adversity, I feel like my determination has grown and, though it has taken me a very long time, my confidence, my respect for others has rocketed, being able to know the value of a helping hand, an appreciation for the hurdles life can throw at you has greatly increased the lengths I’d go for others. An appreciation of the little things such as being able to use a tote bag because you are not using your crutches, or walk along a beach with your family.
There's also the things that I have neither lost nor gained, but simply been able to do in spite of my health condition. From interrailing, to university, to still being able to see my friends and family. I haven't lost my hobbies, my dislikes, the things that make me me, and I am forever grateful for that.
(originally published 24/03/20)