As a keen (husband says obsessive) user of Facebook, I will often see posts about “invisible disabilities” which attempt to raise awareness of the difficulties people with a range of conditions face and ask for empathy and understanding. These are important messages and, inevitably, MS is always on the list.The nature of a relapsing-remitting condition is that much of the time a person looks totally well but may be struggling with a whole host of challenges that make day to day life tricky. In my case these can include fatigue, pins and needles and the trickly, slow decline in cognitive function that I am trying very hard not to obsess about (it’s entirely usual to forget your friends’ names isn’t it??) But I quite like the fact that I can keep these things invisible, only talking about them to those I want to and revealing things only to those I want to know. Sometimes the people I tell are almost strangers and I wonder afterwards about my own motivation, but the reveal is under my control.
But not always. Sometimes you get worse and people can tell. This week I fell over. It was a proper comedy fall, with legs akimbo and underwear revealed. I hurt myself, although luckily nothing is broken. And I fell because I tripped over my shoe. It is a silly ballet pump type thing that is a bit loose and I tripped. But I also tripped because I couldn’t really feel where my foot was at that moment. The fancy name for this is proprioception and it can be an issue for those of us with MS. You literally don’t know where bits of your body are in space. It can make walking down the stairs a bit of an issue (especially if you are idiotically using your phone at the same time…) It requires the wearing of sensible shoes which seems to be new area of denial.
The upshot of this week’s fall is a wrist splint and a bit of time wearing a sling. Because it happened at work, and because it wasn’t broken, the expectation was that I would stay at work. So I had to pootle around the wards with my sling on while everyone gasped and asked for an explanation. I tried to think up something comedic or dramatic but mainly just mumbled about what an old woman I was obviously becoming and smiled fixedly when a nurse told me “most times, when people fall, it means they are in the last year of life.” And I hated it – I hate the explanation that any physical evidence of illness necessitates. I hate the attention I get when I use my stick or slur my words. It is out of my control. It makes my invisible problem visible; takes the ownership from me and makes it public.
So for the time being I am happy that things stay mostly hidden. I will do my bit to raise awareness and I won’t hide who I am and what I face, but here’s hoping it can stay on my terms for longer.