Often people desperately want to help their loved ones as they grapple with this illness, but feel useless to do so.  Here are some ‘hints’ if you like, at simple things that can often make a huge difference.

Be punctual and reliable

If you say you’re going to see / pick up your friend or loved one, make an effort to get there at the agreed time.  Waiting for people is tiring for anyone, but particularly for those struggling with extra tiredness caused by an energy limiting illness such as CFS/ME.  They may have had to make an effort to get themselves ready, especially if they’re in a bad patch, and the longer they’re waiting for you, the more of their precious energy slips away.  Try not to be ridiculously early, either – they’ll appreciate some notice and knowing they can get themselves together at their own pace.

Be a cheerful giver

If you choose to help out, don’t grumble while doing so or make a big deal about the effort and sacrifice you’re making.  This will make them feel bad about themselves and less likely to ask people for help.

Be discerning

At a party or an social event with lots of people chattering and mingling?  Do you see your friend flagging or struggling?  Make sure they know you’re happy to take them home as soon as they need to – again, don’t make them feel guilty for it, otherwise they may suffer in silence and exacerbate the tiredness.  Don’t embarrass them.  Just let them know the offer is there.

Be sensitive

You may think saying ‘You look so well!’ is an encouraging remark, but if they’re feeling appalling, it’s a painful experience for them.  Someone beaming and saying ‘you’re looking so much better – are you feeling better?’ sets the conversation so that the person feels as if they’re going to disappoint you if they say ‘no’.  Remember, appearances can be deceiving and  makeup can hide a lot of things!  If you feel yourself about to say something like this, change it to ‘you look nice today,’ which is a compliment, not a judgement.  Then ask how they are feeling without linking it to the previous statement!

Be gentle

People with ME/CFS often have potential treatments and cures thrust into their hands.  Diets, supplements, exercises, new blood tests and wonder therapies abound. You may feel incredibly pleased and enthusiastic about having found something, but be wary about waving it in their face as the solution to all their problems.  Plus, giving an exhausted person something they’d need to research, or can’t actually afford, is very disheartening.  If you find something of genuine interest, research it yourself so that they don’t need to find out about it.  Then give them all the information they need without placing it on them as a burden.  Say – “I found this information on such and such and wondered if you knew about it. If you want to have it so you can look at it at some point, please do so.”  Then leave it, and do not nag or chase it up.

Be unconditional

Don’t get grumpy because they haven’t replied to your email.  Tiredness often induces forgetfulness and they may well have intended to respond, but tiredness stole their intentions.  Don’t withdraw your support because they can’t take up all your offers of help – however well-meaning they are.  Just ensure they know you’re there, without pushing yourself on them.

Don’t be bossy

Allow them to make their own mistakes.  Don’t bully or boss them, telling them all you think they shouldn’t do or should do.  They need to have the freedom to find their own way, and they need to be allowed to try and fail without someone folding their arms and tapping their feet. They need to be able to grow and learn.  This may mean they have to learn some hard lessons.  But they need to be able to choose for themselves sometimes, otherwise they will feel stifled and distressed, and not want your help at all.

Be decisive

However, there will be times you do need to make decisions for them. They’ll need someone else to do the thinking and the guiding.  Ask them ‘do you want me to make this decision?’ – and if they say yes, go ahead.  You’ve given them the option, and they’ve given it back.  You’ve preserved their sense of freedom while still carrying their burden.