A Young Action Online document.  You are welcome to redistribute or reprint this document without seeking our permission provided: 1) you do not abbreviate or change the text in any way; 2) the authorship information is retained; and 3) www.youngactiononline.com is credited as the source.

Have you lost friends since getting ill? Perhaps they're infuriatingly busy doing other things while you're stuck at home doing your impression of Victor Mildew.  Perhaps it's time you made some new friends.

Hmmm... Who else is likely to understand the restrictions made on your social life?  Who else is free for long chats and cheap visits to the cinema during the day, and will understand perfectly if you need to cancel at the last minute five times before you actually make it out?  A fellow ME sufferer, that's who.  You know they're out there somewhere: your sort of age, your sense of humour and that same aversion to aerobics.  Just how do you go about tracking them down?

Here's some ideas you might find useful if you want to start your very own M.E. (Mega-Entertaining) Social Group:

Is anyone out there?

• Stick a notice in the newsletters of your nearest ME support groups, asking other young sufferers to get in touch with you.  It's probably a good idea that they contact your newsletter editor/group leader first, so they can be your middle-man (or woman).
• If there isn't a local group near you or its members are all ancient (eg over 35, haha) try contacting the national youth groups and any others you can think of to tell them that you want to start something up in your area.
• You could also place notices in your local library/supermarket/leisure centre/youth centre, getting your friends to do the same.  If you're feeling especially inspired, you could even send flyers round the schools and colleges in your area asking that they find their way to the nearest notice-board.
• Network!  Tell your friends about your plans and get them to tell their friends.
• A hint: When first replying to enquiries sending a funny postcard is better than phoning up out of the blue in case people are really ill or perhaps a bit shy.

Just kidding.  There are no rules for starting up a Social Group, your only aim is putting young people in contact with one another.  However, you might like to:

• choose your age range (maybe teens, twenties and early thirties?)
• organise different levels of activities so there's something going on for everyone, e.g.  watching a video or vegging out together in someone's garden (very ME friendly). For the more adventurous among you, there's always shopping trips, the cinema or a good lunch out.
• An evening get-together in a friend's house is cheap and not too stressful or tiring, as a bed is never far away if anyone needs to crash out for a bit.

Protecting yourself

From what?  You may ask.  Well, the idea of a Social Group is to have fun, and okay, yes, in time to support one another in times of stress, with chocolate fudge cake and a sympathetic ear.  The problem, however, with a 'friends' group is that the intimacy that this allows for may not always be welcome.  Some people who you don't naturally click with may be quite needy and perhaps want to 'dump on you' with their problems, forgetting that you're ill too, and might not want to be their agony aunt. You also need to accept that it's unlikely that you and the other young ME people in your area are all going to get on great just because you have an illness in common.  You won't.  Life isn't like that - you're bound to form little cliques based on shared interests, energy levels etc.

Be assertive

Don't let what I've just said put you off.  Be aware of the sorts of situations you could encounter and take the measures you feel necessary to try to avoid them.  Tips:

• Screen your calls via an answering machine, so you need only pick up if it's someone you feel like talking to at that moment (v. handy if you're feeling really ill).  Likewise, get your family or flatmates to screen for you "Who's calling, please? Right, I'll just see if he/she's awake".
• Don't feel pressurised in any way.  If you don't feel well enough to talk to someone or to go out, say so.
• Remember you don't have to be the one to make all the arrangements.  Once you've introduced people to each other, start delegating!
• Ask callers to check that you're feeling okay for a chat, to only call at particular times and to let you go if you say you need to rest. If you want people to call before they show up, then be firm about this.  Don't be afraid to make a few rules, people should understand your need, and will hopefully apply the same rules to the rest of the Group.
• Although your Social Group should not have to provide any kind of service it's a good idea to make contact with your local support group co-ordinator so that anyone in need of advice or information can be supported by them.  As with any illness, a small minority of sufferers develop emotional problems or depression.  As sorry as you may be for them, you're not the one who is qualified to help, so don't feel guilty about passing them on to someone who is.

Years ago, I went to a local ME group meeting and was disappointed to be the youngest one there by far, meaning I didn't have much in common with the others.  I asked one of the long-suffering sufferers if she could put me in touch with anyone around my own age, and she asked around.  This led, over time, to more and more people getting in touch with me, (mostly in their twenties, although some have been 29 for an awfully long time).  I needed to assure a few people that we were a great crowd who didn't sit around whinging about ME (well, not all the time) but had a good laugh together.

When one of us goes through a bad patch, the others get to hear of it and up we all pop saying "I know, I know" with our soggy shoulders and pulpy videos.  There have, of course, been some total disasters, such as booking a table for ten to eat and only two of us being well enough to show up.

Here is the good news, though, at least for us: two of our gang are now a couple, five of us are off on holiday together in May, and lots of people say that they've made fantastic friends through the Group.  In fact, the only downside I can come up with is that my phone bill has trebled - but it's worth it.
 

Young Action Online    PO Box 4347    Stock    Ingatestone    CM4 9TE