Never Judge A Book By It's Cover - My Fight Against My Body
At first glance, I look just like your average 20-something-year-old woman, you probably think I have a job, a busy social life, and do all of the things a woman in her 20’s does. But you couldn’t be more wrong.
If you look harder, just that little bit deeper, you’ll see that I’m a chronically sick, disabled young woman. You’ll more than likely notice my permanent Suprapubic catheter - and, more than likely again, you’ll also notice that I need mobility aids to get around. When I’m able to walk at all, I use a mixture of walking sticks, crutches and a wheelchair.
I have been chronically ill for as long as I can remember. I first became unwell at the age of 7, when I started getting symptoms of ‘Post Viral Syndrome’ which developed into ‘Myalgic Encephalitis’ - also known as ‘Chronic Fatigue Syndrome’. As the years went by, I collected a vast array of chronic illnesses and health issues - definitely not as fun as collecting stamps in my passport from travelling around the world, having fun adventures with my friends and family.
I’m now 26, I’ve been chronically sick for 19 years … You’d think it gets easier as you get older and the longer you have to live with being unwell all the time, but it really doesn’t. New challenges pop up all the time and new diagnosis’s spring up out of nowhere; there are countless infections (which mean countless courses of antibiotics and, in my case, infections often mean hospitalisation for IV antibiotics and emergency suprapubic catheter changes); trying out new/different medications - then trying to decide whether they work and are worth the side effects that come with taking them; numerous hospital and doctors appointments (which are all extremely overwhelming and use up an insane amount of energy).
I wanted to share what life is like with chronic illness(es) because people who aren’t sick don’t quite understand what it’s like. It is honestly impossible to describe what it is like to live with a chronic illness, not just because every single person’s journey with chronic illness is unique to them, but because unless you yourself live with chronic illness it is something that you just won’t understand completely - no matter how hard you may try.
The pandemic and not being able to socialise, not being able to go to school or work, being stuck at home due to isolation, is very much how a lot of those who are chronically ill have lived their lives for years and will continue to do long after the pandemic has calmed down. This is probably the closest that anyone who doesn’t have a chronic illness, which completely changes their life, will get to knowing how it can impact on our lives.
For me currently, an average day consists of being stuck in bed, unable to move my lower limbs, having multiple seizures a day (sometimes over 100 seizures in a single day alone), needing a suprapubic catheter because my bladder has stopped functioning as it should and only being able to do activities for short bursts of time before needing to sleep as said activity has exhausted me. But even though my days aren’t very exciting, I am so grateful and thankful for what I am able to do and for the support that I have around me. I have an incredible family, fiancé, fur babies and friends - without social media, I wouldn’t have met my fiancé or my closest of friends.
What I’m trying to say is don’t judge a book by its cover. If you saw me on a rare day when I was able to get out of the house, with my catheter covered up, just using my crutches, you would think I was your average 26 year old who had an ankle or leg injury. You wouldn’t think I was chronically ill with a multitude of chronic illnesses.
This is your reminder to always treat everyone with kindness, whether you know them or not. It costs nothing to be kind to one another. Also remember that, just because someone tells you of their struggles, it doesn’t mean that you understand it. Don’t be judgemental, be supportive and kind.
Written by Sophie Smith
@myfightagainstmybody on Instagram.
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