I just saw this excellent post by @LUBOttom on performing disability when you have an invisible illness and it made me think of a blog post I’ve had in Draft form on the blog for almost a year now, one that I keep putting off actually finishing and posting. The reason I put it off is because I hate that I felt the need to write it.
That day I’d been for a day out, it had been a wonderful day, surrounded by friends and family. It was my 30th birthday and I’d been dreading it, I don’t have much luck with birthdays so was expecting a disaster! But it was a lovely day, and I thoroughly enjoyed myself. So at 10pm I sat down to write a blog post about it, was it a post about how happy I was and how much fun I’d had? Was it going to be full of joy and laughter? Not even slightly.
At 10pm on my 30th birthday I suddenly became so wracked with guilt because I’d enjoyed myself, and I was worried it made me look like I’d been lying about my chronic pain. I was so torn up by it I wrote an almost apologetic post on how I was going to suffer for my sins of being happy.
Here’s the thing, I did suffer, and I suffered hard. As I always do when I do something out of the ordinary. My days are normally very similar because that is how I manage my pain, I suggest reading up Spoon Theory if you haven’t already. Most days I manage to ration my spoons and so can live a mostly normal life, this means that on the days when I need to push my body further I can borrow spoons to get me through it. I then deal with the fallout afterwards. This also happens on a smaller scale day to day, eg. if I know I need to do a food shop then I will skip other activities, maybe something like washing my hair. It even affects how and where I shop. If I have a few spoons to spare then I’ll go to the cheaper supermarket which involves more walking around, if I have less spoons I go to the more expensive one which involves less walking around. If I have a few spoons to spare I’ll get multipacks, if I have less then single items (easier to lift). And so on.
And you’d think that a day with more spoons in it would be great, but then I worry that people are looking at me and thinking, “she’s not ill, she’s a scrounger”.
Seems silly to care what others think, but when you have mainstream newspapers encouraging people to “shop a scrounger” and a culture where so many are being left without any income at all thanks to benefit sanctions, it is scary to think I could be wrongly accused by a well meaning neighbour/acquaintance. It could leave me financially disabled as well as physically.
And so I feel the need to perform my disability. Sometimes it means talking very loudly and clearly about what hurts, how much and that I will be “TAKING MY PAINKILLERS AS SOON AS I GET HOME”. Sometimes it’s making “ouch” noises – don’t get me wrong, a fair few of those noises are for real, but I am likely to enunciate them a little more clearly. Sometimes it’s exaggerating the pained facial expressions, same as the noises, often for real, but also often emphasised.
And of course the issue with these things is then it can feel like you look like more of a fake.
Those things though are fairly harmless in comparison to some others. When it was early days with my back and I was still learning my limits and learning to manage my spoons I used to walk with a stick. I didn’t need it to help me move forward, but it meant if I misjudged and walked too much I had something to stop and lean on – rather than collapsing on the pavement in pain, which I have done. Over time I learnt to manage spoons better and was much less likely to find myself in desperate need of a support, plus I started to get pain in my wrists and elbows. So the stick became not just unnecessary but actually exacerbated my pain. I still walked with it though, because while I had the stick I looked disabled.
Without the stick I was just a young, overweight woman who was sitting rather than offering her seat on public transport, who was driving short distances instead of walking, who was refusing to lift items, etc. I looked lazy, not like I had an invisible disability.
On the other hand I hate appearing weak and pathetic, so will walk like everything is fine and I’m not in agony right up until I make it through my front door and then I’ll collapse.
I do worry what my neighbours think. I worry what a lot of people think. Even those that know me better, I am aware that I still have no diagnosis.
I live in hope that I get a diagnosis soon, I’m meant to be seeing a specialist (finally), and if I do get a diagnosis I can’t promise that I won’t want to wear a t-shirt with the name of my disability on it. Maybe if I did that I’d stop feeling like I had to perform my disability – maybe..