“So how do you feel right now?”
My answers:
Not too bad.
A bit worn out.
Awesome.
Okay.
Alright.
The truth:
Like I’ve been poisoned.
As if my body has been pumped full of concrete.
Like something is crushing my skull.
As if my muscles are being scraped off my bones.
Like I’m so exhausted I fear my heart may suddenly stop beating because it’s taking up too much energy.
We’ve all been there. Where we’re asked a question about our health and then we’re left wishing we’d explained ourselves better. I get this nearly every time I meet someone new and the topic of M.E. comes up. And I need to remind myself that people cannot read my mind and won’t automatically look for the subtext in my answers.Its such a fine line between coming across as brutally honest and down right depressive though.
I’ve found that 99% of people will ask “So what do you do for a living?” or something along those lines. The best response I could come up with once was that I watch a lot of CSI… I hope that I learn to ask people whether they’re having a nice day, rather than asking how they are. And maybe asking “Do you work?” rather than “Where do you work?”
I rarely give out the name of my illness. Instead I’ll say that my health is a bit dodgy or that my body doesn’t produce energy properly anymore. Or that I have a neurological illness that has had a huge impact on my life. Alas, because of the nature of this illness I can rarely think quickly on my feet and sometimes I could kick myself for not expressing myself better when it comes to the topic of my health. I get a bit tongue-tied and am never sure how much to say. I think that’s largely down to the stigma that is still attached to this health condition, and some days I just don’t feel brave enough or feisty enough to digest and respond to people’s (inaccurate) remarks.
I’ve mentioned it before but The Spoon Theory really has helped to explain to a lot of people what it is I’m experiencing when I say I have a chronic illness.
It’s a bit bleak but I have tried to explain myself this way before: “Imagine your car is running low on petrol. The petrol light has already come on and so you need to do everything you can to conserve that petrol and make it last until you get to the petrol station. That’s what it’s like. My body has run out of ‘petrol’ only there is no way to refill it or save it or make it last. Other than to not drive…”
Do you have any useful ways of explaining things?
M.E. myself and I 