Living with M.E.
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Family and friends

If you are a family member or friend of someone with M.E., check out our Support others section

M.E. is a “non-visible” condition, so other people won’t necessarily be able to tell how you are feeling, or what you can manage.

Your friends and family might be wondering how to treat you. They could be scared their visit will make you feel worse, or worried about whether or not to talk about what they've been up to recently, in case you get upset about things you aren't able to do at the moment. Sometimes you might feel that, although seeing friends wears you out, you feel it's worth it. At other times, you might know that you feel too ill to do something that has been planned. In either case, they won't know unless you tell them. Give your family members a chance – be honest and let them know how you are feeling and how much you appreciate their love and care.

Your family may be very supportive and help you maintain your friendships. Or they might find your illness distressing, pretend that it isn't happening, or be unable to face up to the effect it is having on your life. People facing difficulties in their own lives they might seem insensitive to the hurt you are feeling.

All this means that good communication skills are a very important part of living with M.E. There are three important areas of communication, set out below, and it can help to keep them separate, so that any messages you are trying to communicate are as clear as possible.


Explaining M.E.

It can be simpler to offer a quick explanation of what M.E. is, rather than trying to get into the complexity of the research findings. Having a simple, one-line answer ready for when people ask you what it is can he helpful. For example, some people say:

  • “It’s like having terrible flu that doesn’t go away.”
  • “It’s a neurological condition that causes extreme fatigue and pain.”

What it feels like to live with M.E.

Some people also want to know how you feel, and what your symptoms are. However, the symptoms can be difficult for other people to understand, particularly because there can be so many. People can feel scared of what they don't understand, and when they're scared they may try to avoid the issue altogether and stay away. That's why it's important to let them know about how M.E. affects you.

The Spoon Theory is very popular – you may have seen references to “spoonies” on social media. Shared by Christine Miserandino, an American woman living with lupus, it’s a great way of conveying what it’s like to live with a chronic health condition.

To help them understand how M.E. affects you, you could also give personal examples. So you might explain that if you have to turn down invitations, or don't answer their messages straight away, it's not because you are avoiding them, but because you don't have enough energy. Tell them that, even if you can't see them as much as you used to, you still value their friendship.

Remember that everyone has their own problems to deal with, so what you expect from your friends needs to be realistic. Give them lots of encouragement and, if they stick by you, they are worth their weight in gold. It's also a good idea to not to become dependent on just one friend, whether they have M.E. or not. Doing this puts a lot of pressure on one relationship, and it can be upsetting if that friendship ends.

Friends lead busy lives (like you did), so they might not make contact with you for a while, or make other new friends. It's helpful to remember that friendships change because circumstances and the things you have in common change – but it doesn't mean you can't be friends any more, though you may need to adapt the things you enjoy together.

Some people may still be unable – or unwilling – to understand what it’s like to have M.E. Remember that there are those that DO understand, and can offer support, be it Action for M.E., your local M.E. support group, or a forum such as M.E. Friends Online.


How you manage M.E. and its symptoms

This kind of conversation can sometimes be more straightforward, as it is practical, and matter-of-fact. For example, if somebody doesn’t understand the medical explanation of M.E., or how you are feeling today, they may understand it if you explain how long you might be able to walk for before needing to rest.

You may find being more assertive helpful. Assertiveness is a clear style of communication, which expresses your own needs, while acknowledging the needs of others. It is a midway between being passive (just giving in, for an easy life) and being aggressive (being pushy, to get your own way at all costs). There are many books and online resources about assertiveness. Writing in Action for M.E.’s membership magazine InterAction, counselling psychologist Joan Crawford says: “

"Being assertive is about being able to communicate how we are feeling confidently and non-aggressively, and reasserting the boundaries with those around us – boundaries which may have been violated by someone else’s disbelief or misunderstanding. It may well be necessary to express ourselves assertively because not doing so may lead to increased anxiety due to our own needs not being met.”