This piece was written by Jenn Vesperman, adapted with permission by Ricky Buchanan, 2004.
First, you want to help.
This is great. It's wonderful that you see a friend who's sick, and want to help. Let me tell you what is likely to be helpful - and what isn't.
You want to make them better. You want to find a miracle cure - after all, when you have a flu you 'soldier on with Codral'. And your sister's asthma is much better since the doctor put her on the new inhaler. Surely your friend's illness will get better too.
Most people in this society have little experience with long-term illness. It's frightening. It's almost unreal. It challenges your faith in medicine - worse, it challenges your faith in your own body. It, too, might fail you like this.
But people with Chronic Fatigue Syndrome (and some other illnesses) stay ill for years or decades. Trapped in bodies which are failing them.
Help them in practical, physical ways. Drive them to their doctor. Do their grocery shopping. Make the arrangements for subsidised home help to come in every week and clean their house. Book Meals-on-Wheels. All of these are real help.
Help build their morale. Be there. Be understanding. Accept that their body is weak, that their mind may be fogged up, but that it's still them inside that weakened body and foggy brain. Accept that they will have days when all they can do is cry, that the pain and fear are defeating them. Accept that they will have days when they feel great emotionally, even if they're too sick to sit up.
Try to understand that they can sound happy, but be having an especially sick day. It can knock you right out of a happy mood to hear 'you sound cheerful, you must be feeling well' .. because it reminds you that you're NOT.
Sometimes a five-minute visit is too long. Accept that - but make the effort for that brief visit. It really does make a difference to know that someone cares enough to stop by.
Send them things. A small note. A flower. A teddy bear. Don't necessarily expect much response - it can take days to build up the energy to call someone. Just living can be a hell of an effort. But your presents - especially small ones - say 'I'm thinking about you'.
So many friends and family are intimidated by this illness, and just stop making contact. So many who still make contact are upset by the slow and brief responses. It's depressing. Avoid being among them.
When you have CFS for a long time, you start to accept it. It's a part of your life, it becomes part of who you are and how you live. Oh, you still get depressed about it - often very depressed (the leading cause of death for CFS is suicide). But you recognise that there isn't a miracle cure - and more importantly, that looking for a miracle cure is degrading what quality of life you do have.
So resist the temptation to get involved in their treatment, unless they specifically ask. Don't go looking for a cure. Don't tell them about the latest newspaper report about the guy who had cold baths every morning, or the story on This Day Tonight about the woman who drank nothing but herbal teas.
Better, spend the time you would otherwise spend looking for cures yourself on raising money for the illness and donating that money to the local society, earmarked for research. That will definately help your friend - if only helping her morale. (You did THAT? For ME? Wow!)
But the most important thing you can do to help is simply to stay in touch - in a way which forgives their illness.
