7. What To Do When Your Friend Has An Invisible Illness

The most important things you can do to help a friend who’s got ME.

 

Hello again! I’ve tried to get across that ME can be a really horrible illness, disabling and isolating. And you don’t feel like you get offered much hope either. But the worst thing, is that on top of all of that, you have to face the prejudices of having one of the most misunderstood illnesses there is. Unlike almost any other illness I can think of, with ME you’re often not even “allowed permission” to be ill.

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. They don’t see how ill you look when you’re stuck in bed the rest of the time, feeling awful and exhausted. Maybe only your very closest family see you like that - to them, it’s not invisible. It’s a similar story for people who have fibromyalgia, dysautonomia, Lupus, and so on.

And because there isn’t a recognised test for diagnosing ME - yet -, it means that doctors don’t find anything wrong, so it can be invisible to them too. Of course, if they looked for the right things, they would see all the severe biological abnormalities when people have ME!

But instead, with ME, you often have to wait ages to get a proper diagnosis, you get told by doctors that it’s all in your mind, or you’re not really ill, you get given inappropriate treatments which can make you worse, you’re denied benefits, your work or school try and force you back because they don’t try to understand, even a lot of your family and friends tell you to “snap out of it”, or that you’re not trying hard enough to get well. Perhaps they choose to deny it, because they find it too difficult. Believe me, if we could “just get over it”, we really would!

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.

So if you know someone who’s got ME, and you really want to help them, what can you do? From my personal experience, and what friends with ME have said to me, I think there are basically just two things that are most important.

Firstly, 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? There’s only so much daytime TV you can bear to watch! Seriously, remember what they were like before they were ill. 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. Believe them.

And being that ill is lonely. So, the second thing is: be there for them, when you can. Remember, your friend with ME is still the same person they were before the ME. While they are ill, they might sometimes be a shadow of themselves, and maybe can’t do anything much for any useful length of time, and are probably even more sensitive to everything than they normally are. But they’re still them! So you should still be you, and treat them just the same as you always did! Keep in touch, send them a message, it can really brighten up their week! Don’t be upset if they don’t reply, they might be too tired, or they might even have forgotten. Hopefully, they’ll let you know if they like hearing from you or seeing you. Don’t expect them to sit and chat to you for hours - it’s better to see them for just 10 minutes every week, than a whole day only twice a year.

Try to be there for them if they need to talk. But understand that sometimes they don’t want to, or can’t. And try to include them in things, but consider that they might not be able to do very much, or for very long. So don’t feel upset if you’re trying to involve them, but they say they can’t join in this time. Chances are, they’d still like you to ask them again next time.

Don’t get me wrong, no one I’ve met with ME wants pity - or a fuss, or attention. And sympathy actually gets boring after a while. But they want, just sometimes, to be accepted - reassured that they’re still valued no matter what; to be accommodated - just occasionally having things arranged to let them join in as if they’re still part of the real world; and to be supported - however small that support might seem, but for it to be reliable, and carry on with it, so they won’t feel you’re giving up on them.

The best friends to me when I was really ill, are the ones who made even just a little effort to understand. And who treated me - not as an “ill person” - but, when they could, they tried to treat me as normally as possible - making the sometimes pretty big allowances to help me to be “myself”, within the terrible limits ME put on me. And they did that without making a big issue out of it, and quite often without even mentioning it at all. To all my friends, I thank you.

Next time, I’ll talk more about practical things you could do which might help to support a friend who’s got ME.