For Friends and Family


Caring about someone that has M.E must be a bit shitty. You want to help, but you can’t. You want to take it away, but you can’t. And instead you just have to watch. I recognise that that is difficult. I wouldn’t want to be you.

If someone has shown you this, sent it to you, linked it to you – it means that in here somewhere is something they want to tell you. Maybe they’re scared to themselves, maybe they couldn’t find the right words, or maybe it hadn’t occurred to them until they read this post. So I’ll say it for them.

You are very much appreciated. If in any way you are trying to understand – you are very much appreciated. We know you’ll never really “get it”, but you’re trying to, and that is what matters.

Believe us when we say we’re trying. This has nothing to do with laziness, you cannot push through it. And in fact you absolutely shouldn’t try to.

Please do not mention Graded Exercise Therapy.

Believe us when we say not to take it personally. I know I’m being quiet, I know I’m acting odd, I know I’m giving you short answers. The truth is right now that is me trying my best. That’s all I can give you. And I’m sorry about that.

If I say I’m not depressed, I’m not depressed.

Please try not to ask on a daily basis when you walk in the door “How are you?”. I know it’s just a thing that people say to each other, you would say it to anyone. But to me it only emphasises that I’m not well. I’m going to give you the same answer every day. That will probably be “fine”. I don’t want to give you an honest answer because it only brings it to the forefront of my mind. That may be selfish, I don’t know. I understand that you want to help, and that you want to ask something, so how about you ask “Can I get you anything?” instead (my mum finds this helpful).

M.E is a bit of a minefield. There is so much conflicting information out there that it’s hard to wrap your brain around. Don’t worry if you can’t work it all out, I can’t either.

You can talk to me about this condition if you would like to. I don’t like to bring it up, because to be honest I don’t like to really think about it all that much, but I’ll happily answer your questions if you have any.

I understand that M.E affects everyone around me. I wish it didn’t, but I know that it does. I know that it isn’t just me fighting this, you are too. Just from a different perspective.

If you haven’t already, please google the “spoon theory”. If you have, thank you.

M.E has skewed my perspective of myself. I feel like a watered down version of who I actually am and that is frustrating as hell. Thank you for sticking around regardless.

Do not think if I’m having a day where I’m sad about my situation that means I’m giving in to it. I’m just taking a wee moment and then I’ll get right back to fighting. Don’t you worry.

Like I said, caring about someone with M.E must be a bit shitty. But I am grateful you are here. You mean a lot to me.

#mecfs #cfs #myalgicencephalomyelitis #chronicillness #chronicpain #chronicfatigue #invisibleillness

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