When I was much younger, I didn’t mind being ill. It was never ideal, but the odd cold and a smattering of bladder infections didn’t seem so bad. I got attention, maybe got to stay home from school and lay on the sofa with a duvet, watch TV I never usually saw- hardly the dream but still not that bad.
Fast forward 15 years and all I want is to not be ill, it’s the top of my wish list above everything else, but sometimes it feels like ill is all I am. I blame a big part of that feeling on other people. Don’t get me wrong, I’m okay and I go to work all week long and lead a normal life, but in the background there’s always a symptom. Something always hurts. There’s always something I’m worried about or feel like I need to get checked. I hate it, I try my hardest to overcome it and work on being well and making my body stronger, so there’s nothing worse than someone coming along and announcing “Oh you’re always so ill, you sick note!” Thanks so much for your wisdom pal, please go away indefinitely.
The older I get, the more I cannot stand to be asked how I manage to be sick so often. The more I find it jaw-clenchingly frustrating to hear people suggest I should try harder to not be unwell, or ask how it’s possible I’m not feeling good again.
Being chronically ill is hard enough without trying to make others understand. If you know someone who’s fighting a long-term condition, chances are the last thing they need is reminding about it, or to have people asking how it can be that they’re spending another day missing out.
I choose not to tell people, even close friends, about a lot of my symptoms or consequences of having Ehlers Danlos. On the whole it doesn’t stop me having a life. I have a job, I socialise, I travel a bit and I exercise when I can. It’s the days I have to limp, the evenings I spend aching all over, the hours I lose at night to worrying about why I’m bleeding into my skin on my legs that have an impact. When my physical symptoms were worse a few years ago I did miss out more and it drove me round the bend to be told I should eat more fruit, try getting early nights more often or the very worst: “You could just come for a bit, you might enjoy it.” YES THANKS I WOULD LOVE NOTHING MORE THAN TO ENJOY MYSELF BUT MY WHOLE BODY HURTS AND MOVING IS HARD.
I know I’m ill, I know I might seem lazy sometimes at weekends, or be against going out, but it’s because I’m sick and the absolute last thing I want to hear is a dig, a comment or even a throwaway remark about it. I would trade many things to be normal and have good health and be living in the average body of a 26 year old, as would so many others.
It’s really difficult to explain chronic or invisible illnesses to people. It’s hard to understand them too, so I get why people see it as a flippant thing, but it’s frustrating and grinds you down, which is the opposite of the support that’s needed. Be kind to that ‘sick note’ you know, because believe me they would much rather be out living life than stuck inside the limits of feeling unwell.