Top 10 Things NOT to Say to a Fibromyalgia Patientby Karen Lee Richards Patient Advocate
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. Following are 10 examples of things not to say to a fibromyalgia patient.
We all get more aches and pains as we get older
The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things (like a handshake or a hug) 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.
I think I have that, too — I'm always tired
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 off your source of power. It’s kind of like taking the batteries out of the Energizer bunny.
Maybe you need a job to take your mind off the pain
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.
My doctor says fibromyalgia isn't a real disease
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.
If you got more sleep, you'd feel better
While getting more and better-quality sleep would undoubtedly help, one of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when it naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're still most likely not going to awaken feeling refreshed.
I read about this new product that cures fibromyalgia
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. Although to date there is no cure for fibromyalgia, there are natural options that may indeed help to improve one or more symptoms. However, trying every product suggested would be extremely expensive. Read “Let the Buyer Beware” for tips to help you evaluate product claims.
At least it's not fatal
Of course, you're glad it's not fatal. But Instead of being comforting, being reminded that it's not fatal can feel more like being sentenced to a lifetime of pain. It's also much more difficult to raise research funding and garner support for someone living with a chronic but non-fatal disease. Understandably, people tend to be more interested in preventing death than in improving the quality of life.
You just need to exercise more
Although exercise is an important component of any comprehensive fibromyalgia treatment plan, it's only one part, and it must be approached slowly and carefully to avoid triggering a flare. Read “Fibromyalgia and Exercise” for more information on how to safely incorporate exercise into your fibromyalgia treatment plan.
But you don't look sick
When it comes to outward appearance, a person with fibromyalgia can't win for losing. If you let yourself go and show how you actually feel, people become uncomfortable and don't want to be around you. On the other hand, if you manage to fix yourself up and put on a brave face, people don't believe you're sick because you look so “normal.”
It's all in your head
Insinuating that fibromyalgia is merely a psychological problem may be one of the most hurtful things that can be said. However, instead of being defensive and launching into an explanation of how fibromyalgia is a very real physical illness, try simply saying: “You're right, it is in my head. Research shows that inflammation and abnormal blood flow in my brain affects how it processes pain signals.” Enough said.