I remember learning that most people tend to react to situations by measuring them from their own experience. That is, you apply what you’ve experienced yourself to the matter in hand.
I have tried really hard from that day forward to not limit my understanding to my own experiences and I am the richer for it. But it’s terribly difficult not to do it because often we can only call on what we know to make sense of things. Often we want to be able to help, to offer kind words and it’s easiest to do that from what we already know.
It’s much easier to say what some of the little that you know than to say ‘I don’t know about this but I’ll come on the journey with you’. Much easier than to admit to ourselves that we don’t know all that much in the grand scheme of things.
Especially so because often our contact with people and situations is casual, or we aren’t able to invest that much in it so and we don’t want to have a silence – so we fill it with advice or the knowledge we have ourselves.
What this post is really about is the plumber. A very nice, very talkative man.
He came to give us a quote on some little but urgent jobs and on his way out was asking what we did. He vaguely remembered from last time (wrongly) that I was a student. So I was brave and said no I was sick and didn’t work. Was I signed off? No I’d not worked for 4 years from being sick – I have M.E. “Oh never!” says the plumber, “My wife had that”.
My heart always sinks when people say “had that” in the past tense. The first was a hairdresser who said they had it for a couple of months. Groan. It usually indicates people who’ve had an illness that doesn’t seem to sound much like what I have wrong with me.
To be fair to the plumber he was really, super nice about it all. Told me his wife had it when she was a teenager back when people laughed at you for having it. Told me she had to take time out and go back to do her education over a series of years. Told me they have 2 young children and she’s a lot better now. Told me she still gets tired and gets monster migraines from the M.E. Told me he’d pass on that I have it and that I can call her anytime to chat about it if I want to talk to someone who knows all about it.
He also told me I’ll get better. In fact he told me I can’t get any worse – I can only get better. “Honestly”, he said.
“Ummm. Yer … but … I have actually just relasped a bit …”
“Ah” he says “do you get it where you’re fine for a bit and then you’re in bed for a week?” he nods to encourage my yes.
Actually this is the kind of ME that mystifies me. This periods of ok, periods of very ill is an alien concept to me. I expected in the early days that this is what my illness would like if it persisted. Maybe I’d get a lot better and then crash for a week, pick myself up and get back to it.
When that patch of “ok” didn’t come I thought perhaps I was just on a wider arc than most. Perhaps I was in a crash for a year and soon I’d be ok for a year, then maybe crash a bit and get better – but on a longer timescale.
Nope. I’ve been “on a consistent level of crap” (as I said to the plumber) for nearly 3 years. I improved very, very slightly over that time it’s true – but nothing to write to the DLA people about. Not enough to go to the corner shop on my own, let alone get a job or have much of a normal life.
So the plumber telling me I can only get better, I can’t get worse has made me pretty upset. With myself. For not being successful at recovering, for not ‘only getting better’. For failing.
Him telling me the key was a positive outlook didn’t exactly cheer me either. I know I’m a bit sad and down at the moment but I do have a pretty positive outlook generally and indeed even at the moment despite being utterly fed up in the face of a set back with my illness. All these years I have focused on the can do not the can’t. I’ve laughed nearly every day. I sought out joy.
My rational, logical brain knows this conversation is nothing to get upset over. I know for a fact that I can get worse and get worse very easily just by pushing beyond my physical limits.
Maybe his words of wisdom took that knowledge as a given or maybe his wife’s experience of ME is different to mine. But I know, from my own experience, that I can be more ill than I am. I also know that a positive outlook is very important because it’s a lot easier to be this ill with a positive attitude than with a negative one – mainly because I’d probably do myself in if I had a negative attitude.
I also note that he was insistent that something (relevant to UK tenancies) was law when I know it is not. I told him I thought he was wrong and he said no, definately it’s the law. So I double checked a couple of sources and I’m right. So let’s just say as well as being nice and talkative he’s also pretty sure he’s right about everything.
Plus the plumber was only reacting to my revealing I have M.E. from his own experience, as most of us do. He measured my illness, my life, my ability to recover – from what he’s been through with his wife. And in turn I measure this myself largely by my own experience – although there are large doses of others experiences mixed in here too.
He told me I want to get to see some proper experts. Sigh. I wonder still who those might be. A referral to a specialist will get me CBT and GET and maybe pacing and lifestyle management classes. I continue to resist these because I’ve kind of been through all of that in the first year or two on my own and I’m certain they will be counter productive. Which in itself makes me question myself yet again. I resist the professional NHS help because I want to keep myself ill? But I know I resist it because I don’t trust those delivering the therapy to keep me well or to not risk the little ability and function I do have.
The plumber was being kind. He was being encouraging. It’s just that it didn’t quite have that effect on me because my experience and knowledge are different. Can I be angry with him for that? Actually I’m upset (or is it angry?) for the unsolicited advice and pep talk.
But also I remind myself that without people sharing I wouldn’t have access to the tools that have helped me with ME – that includes loose pacing, D-Ribose and LDN. So what do I do with the hurt and the upset and the anger?
I guess I can blame the ME for making my reactions, my emotions a bit too senstive and unchecked due to this flare. And remind myself when I am in the plumbers shoes to try and not just measure it by my own experience but to try and look outside of what I know (because I always learn and it always helps).
Not forgetting that sometimes listening and saying “I don’t know what to say” is very valuable too.