When invisible illness becomes visible

It is generally pretty easy, with an invisible chronic illness, to look well. Healthy. Thriving even. A decent blow dry and some artfully applied make up can hide any amount of pain and fatigue and I can go about my day looking perfectly healthy, if somewhat slow moving. Sometimes it’s not a total lie. Sometimes I do feel close to OK (although my new normal for ‘OK’ is probably far removed from my pre illness OK). The thing is, when I am out and about, by default I am in a decent place. Still battling with pain and fatigue, but at a manageable level. People tell me fairly often how ‘well’ I am looking. So I have to assume I am going a good job of hiding the symptoms I am battling that day, which works for me. I don’t want to bore everyone I meet with a list of ailments and explain what I am going through over and over. For the most part, unless there is a specific reason, they don’t need to know. And it’s nice to kid myself sometimes that I am just a ‘normal’, healthy person going about their day, not someone who’s day is somewhat consumed with forcing themselves to ignore pain and fatigue, or making sure I don’t walk too far or stand too long.

Enjoying a night out with friends, the best I’d felt in a long time

Of course there is then the flip side, the side of chronic illness that most people don’t see. The hours and days spent on the couch or in bed, the moments when you need to find a quiet corner to calm yourself down from the sensory overload. The time spent in a dark room, eye mask on, ear buds in.

Occasionally this side will become impossible to hide. I had an ‘episode’ this week on a train, just as I was pulling into my station. My body suddenly started shutting down on me. I thought I was going to throw up and was v close to passing out, although thankfully I managed to do neither. I got myself off the train and into a bench on the platform but was in a pretty bad way, slumped over and unable to move or talk. A few lovely guards came over to try and help but I couldn’t really form words and didn’t know how to explain what was happening. Thankfully, I had chosen that day to wear my new sunflower lanyard. I have no idea how widely recognised these are yet but they are designed to indicate the wearer has an invisible disability and I was hoping that by wearing this the guards wouldn’t either panic and call an ambulance or alternatively think I’d just had too much to drink. More information on the scheme can be found here https://www.rnib.org.uk/rnibconnect/hidden-disabilities-lanyard
After 10 minutes or so I managed to pull myself together enough to let the (now crowd of guards) know I was ok and just needed a bit of time and I got hold of my husband who came to half carry me back to the car. I found myself thinking, though, that had I not been able to get hold of my husband and I’d therefore needed the guards to get me a wheelchair so I could get to a taxi, wearing the lanyard weirdly gave me more confidence to do this.

Its been a while since I’ve had an episode that bad in public and hopefully it won’t happen again for the foreseeable future but I’m definitely going to carry on wearing my lanyard just in case.

I also urge you all to be on the lookout for anyone wearing one of these, maybe offer them a seat if you are on public transport and are physically capable of standing for a while – as someone who looks perfectly healthy (most of the time) but can’t stand for more than a few minutes at a time, I find it incredibly difficult to ask for a seat so being offered one is always amazing!

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