They mean well -- mostly. Really, they do. But when you tell someone about your struggles with fibromyalgia, many times they will respond with a saga of their own, criticisms, or recommendations that you “just try this supplement” that, coincidentally, they happen to be selling.
One woman in the WebMD’s fibromyalgia community, who’s had chronic fatigue syndrome for 19 years and fibromyalgia for 11, has had enough. “I have tried many things over the years and I am at the point where I just have no more patience with this and have run out of things to say other than ‘Take a hike!’” she declares. “I have dealt with people I worked with, people from church, my moms, sisters, brothers, friends and the above mentioned strangers.”
She hopes that other people in the community have ideas for managing the not-so-helpful advice pushers. One woman recommends simply thanking them for their interest and suggestion (and then simply ignoring it if it doesn’t fit your needs), noting that many people are sincere.
The problem, says the inundated woman, is people who don’t take no for an answer. She describes a very insistent person who wants her to try a particular remedy and is deluging her email inbox. “Have junk filed the e-mail and throw everything away but I just feel stressed (a major FM trigger for me) just seeing these things in the mail,” she says. “Don't want to lose a friend, since there aren't that many of those around anymore so I'm stuck.”
One woman says that she doesn’t tell many people about her fibromyalgia anymore for this very reason. “The one that really turned my head around was the friend who, when I told her about the fibro, answered, ‘Oh, that's just arthritis. All you have to do is take steroids for three years and you'll be cured,’” she says. “Sure, and I'll have sky-high blood sugar, weigh seventeen hundred pounds and need a double hip replacement from the avascular necrosis.”
These stories have opened the floodgates. It seems that everyone with fibromyalgia has coped with the well-meaning pushers of solutions -- from friends and family members suggesting “super juices,” to a sister recommending special insoles for foot pain.
“My suggestion is to smile in a detached way without investing emotionally in their argument. Tell your friend that you appreciate their concern, but that you'd prefer to remain on your current regimen for now,” says one woman. “Deliver your statement in a firm way and change the subject.”
Many people point out that they don’t mind real help, but that most people just don’t understand fibromyalgia, so what they’re offering isn’t appropriate. “I think some people don't realize that this illness is simply out of their frame of reference. If they have never had it then they shouldn't treat me like an idiot by comparing their minor problems with mine,” one woman says. “While I don't necessarily mind suggestions they could at least realize that simplistic solutions won't work. There is an implication from the suggestions of exercise and sleeping less that somehow I am lazy.”