My best mate and I both developed M.E. in our early twenties and have been largely housebound for our entire adult lives. In the last few years we’ve both taken the huge step to join social groups, my mate for botany and me for photography. I say “huge step” deliberately. Not only is taking part in a social group with healthy people physically demanding it’s also mentally demanding and a social minefield.
We were having a coffee the other day when my friend told me she was struggling with the social aspects of being in a group and she couldn’t understand why she was finding it so difficult. “I fucking hate small talk” she said, “and I get frustrated and irritated when they all piss about and take ages, when all I want to do is crack on”. I knew exactly where she was coming from.
When I joined my camera club 6 years ago I was all at sea. I go to bed every single day at 3.30pm, so to have to get up again at 6pm, get dressed and get myself into town, not to mention sitting upright on a hard chair without my feet elevated for 2 whole hours, was a monumental physical feat every single week. Then I had to concentrate on what was being said, and concentration is something I struggle with during the day let alone in the evenings. But on top of all that I had to interact with other people, which I found hugely challenging. I had the social skills of a 25 year old, not a 45 year old. The last time I’d been around other people I’d still really been a kid, and I’d missed out on 20 years of learning the art of being in a social group. Because of my brain injury I also don’t pick up on non-verbal clues like body language or nuances in tone of voice – I do well to just follow a conversation for crying out loud, especially in an evening when I’m knackered and am feeling dizzy and faint due to being upright!
Then there’s the getting to know people issue and the dreaded “so, what do you do?” question. My personal life, and my personal health, is not the business of some stranger I’ve just met but on the other hand this person may become a friend in the future, so how much do you actually say about your situation? I’m a very open person in general and don’t have huge issues talking about my health. My friend, OTOH, is much more reserved and struggles to talk about herself. Then, of course, there’s the whole issue of how M.E. presents itself. Even my own family initially found it hard to understand payback and Post Exertional Malaise, particularly when I look so well, and I know members of the public often can’t get their heads around our lives and the fact we can do an activity one day but not the next, or we can do one type of activity but not another.
Occasionally, both myself and my mate go on trips out with our respective social groups. We both find them frustrating experiences. People like to faff. They take ages getting their kit out of the car boot, putting their anoraks on, deciding which route to take and generally just arsing about, and we don’t have that luxury. Every second that ticks by our precious energy is disappearing, so we need to get going with the task at hand. Then there’s the fact we can’t concentrate and talk at the same time. So while other people are wanting to chat to us while we’re taking pictures, or collecting plant samples, we find that annoying as all hell and can end up snapping at people without meaning to.
Then there’s having to accommodate other people’s wishes. The rest of the group might want to spend 30 minutes photographing a boat I’m not the slightest bit interested in. Do I use up half an hour of my energy photographing the boat, or do I go off on my own and photograph what I am interested in? Both my friend and I agreed we often end up leaving the group, going off and doing our own thing in peace and quiet which makes us look anti-social and like we’re not interested in making friends. Which isn’t the case at all, but M.E. is a very selfish disease – you barely have the energy to do your own thing, let alone accommodate other people’s things, and both my friend and I do everything at break-neck speed because we’re so conscious that our energy is finite and we need to get stuff done before it runs out.
After we’ve finished our botany or photography our group wants to go to the pub for a beer and a natter…………only we’ve used up every ounce of energy we possess. So, we either go along, sit quietly in a corner white as a sheet and don’t join in because we’ve conked, or we say “no thanks” and the rest of the group think we’re not interested in spending time with them. It’s a huge dilemma and one I simply don’t have the answer to.
My friend and I both agreed that if we had, for example, a broken leg the group would happily accommodate that. We wouldn’t be expected to climb stiles, or stand around for ages and they’d accept that at the end of the evening our leg would be hurting so we’d want to go home rather than to the pub. But when we look completely fine and our health problems are invisible being in a social group becomes a minefield and despite our best efforts there can be misunderstandings and we can end up feeling excluded.
I think my friend and I both came to the conclusion that initially we have to give more information out about ourselves than we are comfortable with, and having done that we have to accept that not everyone will be understanding. We do have to be more selfish than we’d like – after all, we’re there for our enjoyment and if that means going off and doing our own thing on our own then so be it. As long as, when we are with the group, we make an effort to be chatty and join in that’s all we can do. If we’re struggling or feeling unwell, we should say something and when we next meet up we should fess up about PEM and how we’d felt in the days following our outing. No-one wants to feel vulnerable or pitied, but unless we tell the people we are with about our situation they’re not going to know.
Having a chronic illness in a group situation is never going to be the same as being healthy in a group situation, and it’s normal to feel upset about that. I think we are often way too hard on ourselves – we can only do what we can do, and other people will either accept that or they won’t.