When you meet someone new and ME/CFS comes up (which it will do sooner or later) how do you explain it?
There are leaflets now with advice for these situations, but they’re more aimed at family/friends/work situations where you’re having something of a conversation. When someone you don’t really know asks and you know you have a few sentences – if that – to explain, what do you say? How do you compress this condition into a nutshell?
Here’s how it usually happens for me:
For whatever reason, I’ve revealed I have CFS. Almost straight away I add that it’s like ME. At this point either a) understanding dawns and it turns out that their relation/friend/friend of a relation has the same thing and they mostly become sympathetic or b) they look completely blank.
On seeing b) I realise I have to explain ME/CFS to someone who has no clue and may not really be interested, and I probably have little time to accomplish this. It didn’t take me long to realise that going into symptoms or mentioning fatigue wouldn’t get me very far, but what to say instead? One of the suggestions given in the ME Association leaflet ‘Explaining ME to other People’ is to say,
It’s like having flu, only it doesn’t go away.
Short, to the point, and as long as the person has had flu and remembers accurately. . . Well, it will give them an idea anyway. I tried to come up with some different non-medical ‘in a nutshell’ descriptions and it’s pretty difficult. How about,
You know the Duracell bunny? That was me. Then, for no obvious reason, I slowed up and developed all these problems. They checked the battery, the wiring, the mechanics. . . They’ve run all these tests but they can’t pinpoint anything definite.
Which when you think about it comes down to,
I’ve got a fault no-one can quite figure out. It makes it hard to do ordinary things a lot of the time.
I call it rag-doll syndrome because I have no energy: I flop about and have to be carried places. Stick a pin in me and it hurts though.
No, I haven’t actually said the rag-doll one to anyone. To be honest, no matter what I come up with, each time I’m asked I probably say something quite different because I get flustered and my mind goes a bit blank. It happens whenever I plan what to say to someone: I plan, I rehearse, the whole thing vanishes when needed. Anyway, whether you like it or not, if the person is interested they will almost certainly ask more questions so you’ll have another chance to explain.
Side-note: Do you answer questions about ME/CFS? I usually do (as best I can) because I figure, at least they are interested, and it’s not like the information is secret. I’d rather have people curious than dismissive.
Next time you’re in a situation requiring ME/CFS in a nutshell, will you say you have something like perpetual flu? A fault in the system? Rag-doll syndrome? Or do you have a different way of explaining these things?