The question was simple, casual:
“Would you like to join us for a drink at the bar?”
I’d been to one of my regular jaunts into the Highland capital for a literary meeting, and the kindly folk were being, well, kindly.
The answer however, was not simple. The answer was complex. It was at that moment I realised how far from normal my life has become.
I didn’t give the complicated answer, of course not. Who wants to know that I can’t drink alcohol, or caffeine, or in fact anything at all after 7pm; that I have to be in bed before 10pm to stand any chance of getting anywhere near enough rest; that the effort involved in getting a train into town and walking to the meeting saps my energy and renders me good for nothing for at least 24 hours, and often longer; that my poor long-suffering fiancé has to drive into town to pick me up – an hour each way – because it’s too much for me to get a train back home?
So I smiled. Declined politely. Wondered if they thought I was rude, or weird. Or both. They didn’t need the in-depth explanation. It’s neither warranted nor helpful. It doesn’t make either of us feel better.
But sometimes I’d like to explain. Sometimes I’d like to clarify – that my constant leaving of the room is to go to the loo. I’m not sneaking out for a fag or a drink; I’m not being rude and I’m not bored. My bladder disorder means that I am unable to retain urine in my bladder without being in extreme pain.
I’d also like to point out, that however offensive it might be, my sweating is not something I can help. The pain causes the sweating. It’s autonomic. I don’t like it any more than you do.
I might also stress that my lack of sociability is down to exhaustion. I can’t volunteer to do things because I would not be reliable. I can never guarantee from one day to the next what my energy levels are like; when I’ll have a good day or a bad day. And my good day might be a very bad by your standards.
So, I will continue to smile and answer the question simply. For your benefit. For my benefit. I will continue to live my nowhere- near- normal, normal-for-me life. And when I see people who look sad or troubled, or in pain; when I see people giving the simple answer – although you can see the complication in their eyes – I will not judge. I will wonder what trials and tribulations they are going through. I will signal my solidarity to fellow sufferers of invisible chronic illness, who look so very normal but whose lives are anything but.
Photo by Debbie Mathews. Installation by Sophie Cave, Kelvingrove Museum Glasgow.