I don’t know if I like the term “invisible illness”. It is often used to describe Interstitial Cystitis and other conditions that lurk inside bodies, secretly attacking them, unbeknown to the outside world. My issue is that whilst my condition is undoubtedly invisible, I am not and I fear the more I use the word invisible, the more I will feel it.
One of my biggest worries with IC is people thinking I am faking, exaggerating or imagining it. From the outside, I look the same as I did before IC hit. The only small signs I am ill is losing some weight and spending most my time in pajamas and a fluffy dressing gown. My washing machine rarely contains clothes suitable for the outside world (why in 2016 is it still not acceptable to wear Disney pajamas to the shops?) and my shopping addiction now consists of supplements and organic food. How times change!
No matter how ill I am, I always go into work with a smile and face of make up. So, when I try to explain to colleagues and managers that actually I am struggling and need to sit down or take time off, I always wonder what they think. To them and everyone else, I look perfectly healthy. A couple of months ago, I had to refuse overtime because the longer shift would have killed me. By rights, I should have been volunteering to stay and I kept worrying about people thinking I’m lazy. What they couldn’t see was my bladder feeling like it was being repeatedly kicked by a Premiership football team. As usual, I downed painkillers, flashed a smile and pretended everything was okay so as far as they knew, there was nothing wrong with me.
I sometimes wonder if I should ditch my make up and clean hair because then my illness wouldn’t be so invisible. You could look at me, think I look like shit and that would resonate with being ill. I wouldn’t feel like a fraud. The problem with that is looking like shit would make me feel like shit. I often recoil in horror at what awaits me looking in the mirror first thing in the morning so I wouldn’t want to spend all day, every day, looking like that. Of course, I don’t always cross my front door looking preened and polished but I always try to look somewhat presentable because it helps me feel better about myself. You are also guaranteed that the one day you look horrendous, is the one day you will meet everyone you’ve ever known since Primary School. We’ve all got that “thing” that makes us feel better be it make up, a certain hairstyle or those fancy shoes.
I will admit, I make a conscious effort to tone down my appearance for hospital appointments. Just in case that layer of Estée Lauder Double Wear is enough to convince the medical profession I’m making it all up. Absolutely crazy isn’t it!? As if I don’t have enough crap going on right now, I worrying about looking too well.
Ultimately, I shouldn’t give a shit about my condition being invisible. I shouldn’t feel the need to look ill in order to feel accepted by others. If anyone feels the need to doubt me, that shows more about their character than mine. If I was choosing to create an elaborate lie about myself, I would definitely choose something more glamorous than a chronic, incurable bladder condition. I reckon being scouted by a top model agency would make for brighter reading.
Whether you can see it or not, my illness is real. I don’t need to prove that to anyone. I am a classic over worrier / over thinker and have been all my life. I am going to make an effort to delete this particular worry from my brain. There are lots more important things to think about like why after drinking only water for three months straight, do I still get spots?! How unfair is that!