Other people have M.E/CFS! That might seem like an obvious thing to say – and I’m not saying I’m delighted by that sad fact (!) – but it can really help you.
I found a Facebook group of people in my local area with M.E and, after joining and building myself up to going along to a meet-up, I realised the power of people. Great people. It seems odd to say, but even up to that moment, it hadn’t really dawned on me that others actually had this thing… felt similar to me… knew what I was talking about.
Then I met more truly brilliant, like-minded, like-bodied people at the NHS M.E Service. Sources of encouragement, people to share a tricky journey with. Then by talking about it, I found out that two people at my work and a neighbour also have M.E. We don’t even talk about it all the time, but just knowing they are there if we need to, and they understand, makes such a difference.
At one group, someone was telling a story which at one point caused them to use the phrase “…I have M.E…” and it hit me like a tonne of bricks! That was just a sentence that only I said, and I’d never heard anyone else say it before. It was almost surreal. It shouldn’t have been, it sounds silly, but it was. It was also brilliant.
Not brilliant that the person has it of course! But brilliant that, here we are, a group of strangers who know each other’s language, empathise with each other’s experiences and challenges. It’s strangely comforting. We say things which were effectively “in-jokes”. We share. If someone can’t make it, can’t find their words or can’t last beca
use they are jiggered, that is fine because everyone totally gets it. We also talk a lot about normal stuff, nothing to do with M.E, because we’re also normal human beings!
Once you get chatting, no matter what different stages of your journeys you’re at, I will guarantee you something: Every single one of you in the room, whether there’s 4 or 24 of you, will have one piece of advice, one nugget of knowledge, one experience or one tip which at least one of the others hasn’t heard and could benefit from.
Crucially, make sure there is laughter and positivity too, as well as empathy. It shouldn’t be a place to go where you magnify your feelings and leave more negative. Such groups can be a source of information and inspiration to help you improve!
The photo is me with one of my groups; sometimes we go to each other’s houses with absolutely no expectation of the host to tire themselves out cleaning up first! Sometimes we meet at a convenient pub or cafe and I often offer to pick anyone up who is struggling – both in the car and metaphorically speaking!
It does take a bit of courage to go along to such a meet-up and I’d definitely recommend starting the chats online first. You have nothing to lose there. Go for a national or non-geographical one to begin with if you’re concerned about people nearby knowing, such as Chronic Fatigue Syndrome Support UK on Facebook. But definitely go for it.
Here’s a way in – have a look here for UK groups by local areas and here for lots of other countries. There are both online and physical meet-up ones. Also search on Facebook or Google to see what comes up for you.
For a group all devoid of energy, there’s somehow plenty of it in the room and in the chat pages. A different kind of energy. Supportive energy. People power.
What do you think? Have you had similar experiences? What are your support networks like? Or does something put you off? Please comment below and sign up in the footer to receive alerts of new blogs.