What To Do When Your Friend Has An Invisible Illness—ME/CFS? (From Get Well From ME)

More from Giles Meehan at Get Well From ME.  This time, Giles talks about “What To Do When Your Friend Has An Invisible Illness – ME/MECFS/CFS.” Here are some of Giles’ words that resonated with me the most:

“The worst thing is that … you have to face the prejudices of having one of the most misunderstood illnesses there is. … ME is an invisible illness. When you do actually feel well enough to go out for a little bit, and people see you, they might say that you look well. But they don’t know that that might be the only thing you can cope with that whole day, or that whole week. …

As if having ME isn’t bad enough, then feeling like you’re on trial all the time, having to justify to people who haven’t been where you are, that you really are so ill, when all you wish is that you weren’t, is just adding a massive insult to injury.

Here is what Giles suggests friends of people with ME/CFS can do to help:

“… believe them. Acknowledge and accept that the illness is real – because it is. You don’t seriously think that someone with ME would choose a life like that, do you? … People with ME are usually the most conscientious and highly motivated people I’ve ever met. We honestly, desperately want to do stuff. It’s not like when your back is turned, we stop “pretending to be ill” and just get on with fun things and enjoy an easy life! No, it’s the complete opposite. When you see us, we are mustering all our energy to be as normal and energetic and look as healthy as we possibly can – and as soon as you’re gone, we collapse, feeling far worse than you could imagine! It’s so easy to really hurt someone who has ME by making little comments or acting in a way that shows that you don’t believe they’re really ill, or that you think they’re exaggerating how bad they feel.

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