Q. What is the best way to describe severe fibromyalgia pain to people who have never had it? When I describe my condition to friends and family members, they often respond with a wrinkled brow as if to say “So what’s really wrong with you?”
A: Before I answer this question directly, allow me to say that you are not alone in your distress. Many people with fibromyalgia have experienced doubting looks or comments from family members and friends about the pain and symptoms of this disorder.
There are even a few doctors who continue to question the “realness” of fibromyalgia pain. This skepticism arises from the fact that the health-care community is not yet able to fully explain what causes or perpetuates the pain. Of course, that doesn’t make the pain and other symptoms of fibromyalgia less real for you.
In general, your explanation to others about fibromyalgia should be straightforward and uncomplicated. You might say something like, “Fibromyalgia is a rheumatic disorder that causes muscle tenderness, pain and fatigue.” If the other person doesn’t understand, you might make your explanation simpler, such as “Fibromyalgia is like arthritis in the muscles.” Of course, this explanation is not entirely accurate, but it should be readily understood.
You may also direct people to the fibromyalgia section of this web site where they can learn more about the condition and its treatments, as well as how it affects your everyday life.
Additionally, you might help others understand fibromyalgia better by explaining in clear language how it affects you. Be careful to avoid complaining, but be honest and open about the symptoms and how they affect your daily function. If friends or family members offer, you can then tell them how they may be able to help you (or not help you). In the end, honesty is the best approach.
Kristofer Hagglund, PhD