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How might M.E. affect my relationship with my friends?

There's a good chance that your friends will be wondering how to treat you. How do they react to their once-active friend who is now too exhausted even to talk for very long? They could be scared their visit will make you feel worse. They could be 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.

People can get 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 your M.E., how you are and how you feel.

To help them understand how M.E. affects you, you could give an example. 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. You might find you need some friends who have M.E.; your old friends might need to make new friends who can still go clubbing or play sport.

When you think back, you may well have gained and lost friends in the past for other reasons, perhaps changing schools or moving house. Really good friends will still be in your life despite those changes (although maybe in a different way from before); others will have faded more into the background.

Be open-minded about who to have as friends. It can help to have friends outside school or college. You can dip in and out of these and just pick up where you left off, whereas friends from school can tend to carry on with their own lives and drift away.Your parents' friends could turn out to be good company during the day when your own friends are at school or college. Your parents' friends' children might also be worth checking out. Even your brother or sister might be worth a look!

If friendships end, it's normal to feel upset, let down and angry. It might help to talk to another friend or family member about this, because bottling it up can be stressful - which is bad for your health.


How can my family help?

Your relationship with your family is important and it is hard to cope with the difficult times if you feel they are unsupportive. Remember though, that parents and brothers and sisters are human too. 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. If your family members are facing difficulties in their own lives they might seem insensitive to the hurt you are feeling. They will need your understanding as much as you need theirs.

On the other hand, your family may be very supportive and help you maintain your friendships. However, they shouldn't be over-protective. You could explain that you take your friendships seriously and that you need their help.

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. Try explaining that you take your friendships seriously and that you need their help. 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.


Tips for making and keeping friends

  • If you're up to it, try to phone or text someone at least once a week – make it part of your activity diary.
  • If you can get online, use the Action for M.E. forum (coming soon), where you can make friends with other forum users.
  • Try to make sure you have a few friends with M.E. That way you'll have friends you know you don't have to explain M.E. to, because they already know all about it.
  • If you feel able to, become your own social secretary. Healthy friends may be unsure of your limitations so, by making arrangements yourself, you know the visit will be within what you can manage. Don't forget to make planning the activity, as well as the activity itself, part of your plan for managing energy and rest.
  • Plan the visit. Let your friend know beforehand how long they can visit for. You could also mention some stuff that you'd like to talk or hear about – your friend won't worry then about what they're going to say.
  • Have the family pet, if you have one, in the room when your friend comes round. It gives an alternative focus and something to talk about.
  • Arrange a DVD night at your house, if you feel well enough. You can lie on the sofa and watch the film, and so can your friends.
  • If you're well enough, see if there is an evening course or workshop that you can go to. You will meet new people who have the same interest as you.
  • When you're well enough to go back to school or college or to join a social club, think about going somewhere new, rather than returning to a place where people already know you. This might feel a bit scary, but new experiences mean opportunities to learn new things and meet new people.