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People who are ill with Chronic Fatigue Syndrome are severely taxed in the energy department. Some have about enough energy to breathe and that's about it. Others are in somewhat better fettle than this. But even the most hearty have a small energy package to work with and this must be considered at every turn by the people in their lives.
If you know someone with CFS and want to be there for them, you must be aware of some things if you want to help and not harm. Visits are a double-edged sword for many with Chronic Fatigue Syndrome. We are often a lonely bunch, and long for some company. But social experiments must be carefully designed.
Here are some things to keep in mind if you want to visit a person who has CFS.
1) Be prepared to keep it short.
Really short, like maybe twenty minutes. And even with that in mind, be on the lookout for earlier indications of exhaustion. If their head begins to droop, your time is running out. If they seem dazed, and not comprehending your words, it is time to smile and embrace and say 'bye for now.
2) Avoid numbers.
For some reason, number cogitation creates a mental vacuum in short order for someone with CFS. Even people who used to be great in math may become stumped by things like how much something cost, or how many miles there are from Point A to Point B. You can derail a visit abruptly with no hope for repair if you venture into the world of numbers.
3) Make it count.
Most people can wander into assorted small talk that doesn't really interest the listener, and still be able to have a successful visit. But these CFS folks have a fragile energy stream. Don't talk about people they don't know or places they aren't familiar with. When you've only got a few minutes of real comprehension time, don't waste it.
4) Make it personal.
People in the CFS ghetto are lonely. Big time. They feel invisible to the rest of the world. Your visit should counter, not contribute to, more of the same. If you are going to use up their energy, make it about them. All about them. Or at the very least, about people and things that are important to them. They really can't afford anything more.
5) Make it positive.
This is not the place for even good-natured carping and griping about the traffic or the lousy dessert you had at the restaurant. Or what you'd like to say to your snoopy neighbor. Keep things uplifting.
6) Don't expect much in return.
You can't realistically go in expecting the other party to hold up their end of the conversation. You may need to do all the talking, and don't be hurt if you don't get lots of strokes and compliments no matter what your accomplishments were this week. Remember. They are sick.
7) Don't be a drain.
If you have had a hard day, or a bad week, these are not the people to take it to. Even if they were your rock and pillar before they got sick, they can't do it anymore. Literally. They can't. You be the rock. And tell someone else your problems. If you love your sick friend, you will do this.
8) Keep it simple.
The standard (or perhaps I should say non-standard) CFS brain does not stand up to much. We can get stuck in an eddy, run into a blank wall with our thoughts without warning. Your best outcome will be in response to simple, undemanding conversation.
9) Bring laughter.
Being chronically ill is a discouraging and frustrating way of life. Some days there doesn't seem much to crack a smile about. But laughter triggers endorphins and other good chemicals in our bodies. Bring us funny stories, describe hilarious scenes with your cat. Leave us tired, but with a smile on our lips.
10) Do something.
While you're visiting, maybe you can throw in a load of wash, or fix lunch. Better yet, bring something that can be heated up for dinner. Offer to vacuum or clean the bathroom. This is the sort of visitor that will always be welcomed with gratitude.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca and http://ncubator.ca/blogger
Add a Comment3 Comments
Hi Jac_15,
In a way it's too bad the article hit home for you and your mum. But let's face it, it's something all us chronics have to deal with.
I'm glad it's helping in some way. That message needs to be gotten out.
Jody
October 3, 2011 - 6:39amThis Comment
Hi Jody,
Yes, it is something we chronics, as you call us, have to deal with. My closest friends know when I'm running out of steam, but then they remember me as I was before I got sick! But other than a couple of friends, and my mum, almost no one gets it. Sometimes that makes me so angry I end up in tears, but I try to fight that as best I can. It's just nice to know, in a sad way, that there are others like me, and you, all over the world, who have to deal with this on a day to day basis. We might be invisible to most, but it's good just knowing that we're all fighting the same fight, hoping one day things will improve.
Jac
October 4, 2011 - 12:32amThis Comment
Jody, you've done it again! This has been posted to my facebook page, and mum's shared it on hers too, so we're making sure SOME people get this message! Thank you.
October 3, 2011 - 6:15amThis Comment