Top 10 Things NOT to Say to a Fibromyalgia Patient
Fibromyalgia awareness has come a long way. But that doesn't stop people from making insensitive comments. There's still a lot of misinformation and misunderstanding about this painful illness. Patient Expert Karen Lee Richards gives 10 examples of things NOT to say to a fibromyalgia patient.
The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop fibromyalgia long before they should be experiencing age-related aches and pains.
The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are drained of energy – like someone pulled your plug, cutting of your source of power. It's kind of like taking the batteries out of the Energizer bunny.
While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies fibromyalgia.
First of all, this doctor obviously hasn't kept up with the latest research, which clearly demonstrates that fibromyalgia is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses.
One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're most likely not going to awaken feeling refreshed.
This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. Read Let the Buyer Beware for tips on how to evaluate product claims.
Of course I'm glad it's not fatal. But that doesn't help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of fibromyalgia patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life.
If more exercise were the answer, I'd be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it's only one part and it has to be approached slowly and carefully to avoid triggering a flare.
If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick.
I used to launch into an explanation of how fibromyalgia is a very real physical illness, complete with symptoms, etc. Now I simply say, “You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said.