Friends, Relationships and ME

This information about ME/CFS and friendships was collated from AYME members during discussions at the AYME members conference 1998.  It was edited by AYME’s psychologist and summarised for inclusion here.  All the thoughts and guidance mentioned comes from people just like you – young people with ME/CFS.

Should I tell my friends what ME/CFS is really like?
Friendships and relationships can be difficult when you have ME/CFS because your friends or partner can’t know exactly what it’s like to have ME/CFS (unless they have it too).  They need you to explain the truth about your ME/CFS.  This might be hard because your confidence is low or you may not have the energy to explain.  But if you are not honest, problems can occur.  For example, your friend might think you can do more than you can and when you don’t do something they might feel you are avoiding them. 

But I don’t have the energy or confidence to tell my friends
There are various things you can do to help build confidence (see below).  Once you begin building your confidence it will take less energy to tell your friends “I can’t do this today because I don’t feel well enough”.  Of course, not everyone will understand, and this is when you are likely to find out who your real friends are.  It will hurt if you lose friends, but hopefully with your newfound confidence you will see it as their problem not yours.

Confidence builders
You could try having counselling.  This can help you to be more positive about yourself and give you the confidence to talk about your ME/CFS.

You could focus on all the things you’ve achieved in spite of being ill.  Concentrating on your achievements rather than the things ME/CFS prevents you doing can be very uplifting.

You might be able to try something new that you wouldn’t have done before you were ill – a change does us all good.

You could get in touch with other young people who have ME/CFS.  This will remind you that you’re not the only one who feels the way you do and you can share tips on how you all cope with your problems if you want to.

ME/CFS is just another problem!
It’s important to keep your illness in perspective – ME/CFS is an extra problem in your life, it’s not the only problem.  Even if you were perfectly well there would still be times when you felt inhibited, embarrassed, shy, unconfident, humiliated, upset, angry.  Everybody has these feelings at times, whether or not they have ME/CFS.  Not all your problems are caused by your ME/CFS – you may be more normal than you think!

Look at things from your friend’s point of view
Have you ever thought that your friends may be as confused about ME/CFS as you?  THey could be thinking: How do I treat my once active friend who is now too exhausted for conversation?  Will my visit make them more poorly?  Should I talk about my active life or would that just be ‘rubbing it in’?  People can get scared of what they don’t understand and they might stay away.

When you are explaining your illness to your friends, get to the point quickly – they will want to know, but don’t bore them to death!  Explain that even if you can’t see them as much as you used to, you still value their friendship.  Don’t expect too much from your friends – remember that they still have their own problems to deal with.   Give them lots of help and encouragement and if they stick by you then they are worth their weight in gold.

What if my friends let me down?
Friends lead busy lives (like you did), which might mean that they can’t make contact with you for a while.  They might make other new friends or they may forget to phone you.  Try to understand if your friends need to move on.  When circumstances change, friendships often follow.  You might find you need some friends who have ME/CFS; your old friends might need to make new friends who can still go clubbing.  It doesn’t mean you can’t be friends any more, it just means that the friendship will change.

If you do you break up with your friends you are bound to feel upset, let down and angry, but life is too short to hold grudges, especially when you have ME/CFS.  Stress, worry and regret are bad for your health, so forgiving your friends and moving on is hugely important, even though it may be hard on your pride.

I’m a SAM, what about me?
Friendships for people with severe ME/CFS are even more difficult.  Your friends may find it hard to understand that you are too ill for them to visit or talk to.  The severity of your symptoms may scare them.  SAMs often have to rely on family members to help maintain those friendships.

If you are too ill to email or text your friends, or to talk on the phone, you could dictate your messages to a carer who could send them for you.  You could send the same email round to lots of your friends or speak into an audiotape if you can and send that.

It is very hard not to overdo things when your friends do visit.  Using a timer that goes off when the time’s up means that neither of you has to actually say it.  Friends could visit you for a short while, chat with the rest of the family while you take a rest, then visit you again before they leave.  If you can’t hold a conversation, your friend could bring a book with them or something else to do – they need to know that it’s nice them just being there to sit with you, even if you can’t talk to them.

Unfortunately some friends will just be unable to cope with how ill you are and may not want to stay in touch.  This is hard to come to terms with.

AYME runs a buddy scheme for severely affected members where other AYME members write regular cheery letters and cards to SAMs without expecting a reply.  For details of how to become an AYME member click on the ‘join’ section of the AYME web site.

What about when I have to be on my own?
Loneliness and ME/CFS is a mighty combination.  The first tactic is to try to learn to enjoy your own company.  Accepting your situation (for now) is the first step to happiness.  Planning to do activities little and often, rather than all in one go, helps beat boredom and is far better for your health.  If you can do an activity for, say, 15 minutes, then rest for the remainder of the hour, that will spread your activity out all day, and gives you recovery time in between so that you don’t feel ill for days afterwards.  Over time you may find you are able to extend the 15 minutes and feel a real sense of achievement.  There are loads of other suggestions for pacing for SAMs in the AYME book Surviving Severe ME.

I’m a bloke, what about me?
Friendships can be even harder for blokes because they chat less and hide their feelings more.  Male friends care, but don’t know how to show it and don’t make contact.  At times you may feel very isolated; but try to have a bit of confidence and make an effort to continue relationships or speak up-front about your illness.  If you don’t, you may end up feeling stranded.  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.  Friends from school tend to carry on with their own lives and drift away.

How can my family help?
Your relationship with your parents is important and it is hard to cope with the difficult times if you feel they are unsupportive.  Remember though, that parents 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 there are other problems in the family your parents might appear insensitive to the hurt you are feeling.  They will need your understanding as much as you need theirs. On the other hand, your parents may be very supportive and help you maintain your friendships.  However, they shouldn’t be over-protective and should realise that although seeing friends sometimes wears you out, it’s worth it.  You need to explain that you take your friendships seriously and that you need their help.  You need to know they believe you when you say that you are too ill to do something that has been planned.  Give them a chance – be honest and let them know how you are feeling and how much you appreciate their love and care.

New ME/CFS friends – are they ‘proper’ friends?
Having friends that understand what it’s like to live with ME/CFS can keep you from going completely round the bend.  Becoming friends because you’ve got ME/CFS doesn’t mean that you aren’t proper friends – it’s the same as making friends because you’ve joined a new social club or taken up a new hobby.  The important thing to remember is that you are friends because you get on with each other.  A friendship is something to treasure, whether the friend has ME/CFS or not.  Relax and enjoy it!

What about if my ME/CFS friends are only online and I don’t actually see them?
In 2005 University College London reviewed 24 research studies into interactive web sites and found that using interactive web sites (those with chat rooms or message boards) can help people with long-term health conditions.  The review found that web sites that linked patients to people with the same condition helped them to feel the most supported.  Interactive sites were found to be of greater benefit to people than those with information alone, or not using web sites at all.  The researchers found that interactive sites have positive effects on users, making them feel better informed and more socially supported.  Overall, people who used such sites perceived improvements in the way they looked after their health and in their clinical condition. They also had improved belief in their ability to carry out potentially beneficial actions.  So online friends are definitely worth having! 

The AYME web site has a members-only message board for young people with ME/CFS plus a message board for parents on its sister site www.aymelink.org.uk.  

Are any friendships bad for me?
No, but try not to become dependent on just one friend – either a healthy one, or one with ME/CFS.  There is a danger that you will exclude everyone else at the expense of that friend, or that you will be devastated if the friendship ends.

Be open-minded about whom to have as friends.  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!

Tips for making and keeping friends

• If you’re up to it, try to phone someone at least once a week – make it part of your activity diary.
• If you can get online, use the AYME message board or chat room, use email, or get in touch with other ME/CFS sufferers and give them some support – they may need it too.
• Try to make sure that you have a few ME/CFS friends. That way you’ll have friends whom you don’t have to talk ME/CFS with, because you know they know all about it.
• Become your own social secretary. Healthy friends may be unsure of your limitations, so if you make all the arrangements they know that you want to see them and you know the visit will be within your personal boundaries (be aware of how tiring the planning can be).
• 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 your family pet in the room when your friend comes round. It gives them an alternative focus so they don’t stare at you all the time!
• Arrange a video night round your house. 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 the place where everyone expects you to be exactly the same person you were before you got ill (memories can be quite upsetting).

What if I’m the friend of someone with ME/CFS?
Be yourself!  Act normally – your friend is the same person underneath their exhaustion and weakness.  They are still interested in the same things, still thinking about their other friends and still want to be your friend. 

Don’t pretend the ME/CFS isn’t there.  Consider your friend’s new needs – if you don’t know what they are don’t guess or assume – ask them!  Make a pact to be open and honest with each other so that you both know where you stand.  If you’re unsure about something you must be able to ask, and if your friend feels unwell they must be able to tell you.

Don’t desert your friend just because they can’t take part in things like they used to.  A quick phone call to say hello will be appreciated.  Even if your friend can’t use the phone, knowing someone called can make a huge difference.

Don’t be scared to visit your friend.  Don’t force yourself upon them, but offer to pop round for a short while in the evening if your friend can take it.  If not, try again another time.  Try not to take offence if your friend can’t see you.

Don’t feel guilty about not staying for hours and hours; your friend will be glad of your company but might also tire quickly.  Don’t rely on your friend letting you know when they’ve had enough – they’re likely to put on a brave face for your benefit.

Don’t feel guilty talking about things you’ve done because your friend can’t do them any more.  Your friend will want to hear what’s going on in your life.  Even if you think you’ve been doing nothing it’s likely to be more than your friend with ME/CFS has done, so they will be interested to hear about it.  You can talk about everyday things such as school and shopping, cinema, other friends, holidays, etc. 

Take photos of people at school, outings your friend couldn’t go on, etc. and take them with you when you visit.  Your friend will enjoy being included in these things even though they can’t actually be there.

If your friend is well enough, plan an evening in with friends at the home of your ME/CFS friend.  Host the evening yourself so that you do all the work and your friend doesn’t have to.  You can choose different themes to keep it interesting.

If you’ve got a problem, ask your friend for their advice.  They may have ME/CFS, but they haven’t stopped caring.  (Just don’t rattle on about it for hours!)

Try to listen to your friend, understand their limitations and learn from it.  If you are out with your friend and you ask them if they’re alright, they might say they are ‘fine’ because they don’t want to be a nuisance to you.  So rather than asking them how they are, try to be more specific and ask things such as whether it’s too crowded or too noisy for them, or do they need to take a rest.  They might say ‘yes’, which you wouldn’t have known if you'd just asked if they were alright.

The lack of understanding and communication between people with ME/CFS and those close to them can be a major cause of conflict, but it is one which can be resolved with talking, listening, learning and understanding.  All it takes is someone to make the first move and everyone will begin to follow.

Article last edited on Wednesday 29th July 2009                          Printable Version