8. Helping A Friend With ME

Seven ideas how you could help a friend who has ME


Hello! In my last video, I explained the most important ways you can help a friend with ME are: to believe them; and to be there for them, because they’re still the same person they used to be, they might just be feeling really ill and not able to do very much. Today I’ve got ideas for seven things you could do.

1. Firstly, find out a bit about ME. The more you understand their illness, the better you can support them. Ask them questions - remember they’re the expert, they’re the one who has got it.

2. Secondly, look into help that’s available - like treatments, or support groups, or transport or care services, - but only when your friend wants you to! Showing them articles from magazines or websites about the latest “miracle cure” is meant with the best of intentions - but bear in mind, they’ve probably already heard about it, there’s a pretty good chance they’ve already tried it, or a dozen things like it, it’s probably given them terrible side effects, and it’s not the “miracle cure” that it claims anyway - or they can’t afford to try it. So to them, it might sound as if you’re suggesting that they’re not trying everything they can do to get better - even when you’re hopefully not saying that at all! But if they do ask you if you could read up on a particular subject, because they haven’t got the energy to research it themselves, or to make contact with other people for them, then that can help!

3. Third, talk to each other! Don’t be afraid to ask how they feel. But don’t overdo it, checking all the time if they’re OK - it could get annoying! Most of all, make sure that if they do start to feel too ill or exhausted, that they feel comfortable to tell you - make it easy for them. If they suddenly need to go and lie down, or stop talking to you, or need help doing something, then make it clear that they can tell you any time, and that it’s not a big issue and you’re not going to judge them or make them feel bad for it.

4. Fourth, arrange things now and again that they can do. It obviously depends how ill they are - so ask them, they know what they can and can’t do. Don’t keep trying to pressure them to do something that they just can’t at the moment because of the ME - they’re not trying to be controlling or difficult, or worrying too much or anything, they just know when they have to protect their very limited energy. When they do join in a “normal” activity, even for a short while, that might have taken a lot of planning and rest, and they might still be feeling ill but just not mentioning it. Go and visit them, if they find it easier than having to travel to see you. Make short visits - someone with ME can easily become exhausted if you stay too long. Offer to make them a cup of tea, or even their lunch, if they’d like you to. But then again they might be glad of a chance to get out of the house, if they are able to. Remember, they might only be able to walk a short distance. Maybe they can’t travel very far in a car, and maybe not at all on a bus or train. If you do go out, consider how much energy they’ve got, and think if there’d be somewhere they could sit or lie down and “flake out” if they need to. Remember, ME isn’t just about exhaustion, it’s about feeling ill, being in pain, not being able to think straight, and other symptoms. They might need other help too, at home or out and about. If they’ve told you they can’t cope with strong smells, or loud noise, or whatever - then please try to take that into account when you invite them out, or to your home. And you know, my very best friends in all the years I’ve been ill, are the ones who have coped with my food allergies and actually cooked me meals at their homes.

5. Fifth, try and understand that the illness changes from day to day, even hour to hour, and the exhaustion and sickness can come on really suddenly, for all sorts of reasons. At those times, even saying “let’s just stay another 15 minutes” can be far too much, and could mean them being stuck in bed for another 2 days afterwards. In the same way, don’t be insulted if they suddenly can’t make it to an event or something - it’s simply because of the way the ME fluctuates, often without much warning. Sometimes it might take them longer than usual to do something, you might end up doing things at short notice, or just have to take things as they come, your friend might not always remember things you’ve said to them, and there might be times when they haven’t got the energy to spend with you.

6. But the sixth thing is, do still keep in touch. They might not like to be the first one to make contact, because they might know that you’re busier than them - and they might feel like every time you talk, they’re just going on about how lousy they feel, or that they haven’t got anything to say because they haven’t done anything. Help them to keep in touch with what’s happening at work, or college or school, and with your group of friends, and hobbies. You don’t need to remind them how much they’re missing out on - never pity them or say you couldn’t possibly cope without all the things they’re losing out on - they’re already perfectly aware of all of that, and are just trying to cope with it the best they can. But do help them to feel that they’ve still got a life outside of ME.

7. And lastly, try and offer some little bits of practical support - unconditional support. Whatever you can, however small, just knowing the offer is there means so much. Ask them how you can help. A lift to medical appointments, help with shopping, a bit of cleaning or cooking or gardening, filling in forms, or someone who they know they can phone in the middle of the night.

Thanks to leaflets from the TYMES trust for some of this advice. Next time, I’ll talk about some other issues for supporting or caring for someone with ME.