Living with fibromyalgia is extremely difficult, since millions of patients throughout the world can attest. The fact that physical and emotional pain is not visible to others can often make it even more difficult. Fibromyalgia is known as an “invisible disease” because its painful and often debilitating side effects are often not apparent to others.
A person with fibromyalgia may look totally fine on the outside, but be suffering from unbearable pain inside. Understanding this fact is important for those who seek to be supportive of a friend or family member of a person with fibromyalgia.
While it is often difficult to find the words to provide support and hope for those who suffer from fibromyalgia, here is a list of 5 things that definitely does not mean someone with fibromyalgia. We believe we are saying nothing at all better than one of these 5 things.
# 1 “You do not seem sick”
This comment demonstrates a complete lack of understanding of invisible diseases. Not all serious illnesses come with obvious, outwardly apparent symptoms, such as being in a wheelchair. Fibromyalgia sufferers have often learned adaptive mechanisms and can use their limited energy every day to try to appear more normal to others. But the pain is still there. And even hinting at someone with fibromyalgia they are pretending that they are likely to put their relationship with them at risk.
# 2 “It must be nice not to have to work”
Uh, no … it’s not. The vast majority of those who suffer from fibromyalgia would do anything to regain their independence and the ability to work full time.
The suggestion that not being able to work was a choice or that they are just lazy is incredibly insulting.
# 3 “I heard that fibromyalgia is not a real disease”
You’ve already heard wrong. The cause of fibromyalgia is still being studied and the amount of research is lagging behind other health conditions due to lack of historical understanding. But that does not mean it’s less real for almost 6 million people with fibromyalgia in the United States alone.
Fibromyalgia was officially recognized as a real disease by the health industry in the United States late last year, when it was granted its own diagnostic code and has been recognized for years by the Administration of the FDA and Safety Social.
# 4 “You just have to get more exercise and be more active”
If only it were that easy. The fact is that many fibromyalgia sufferers push the limits of their physical capacity by getting up and taking a shower every day.
Many do find some relief in yoga or other gentle exercises such as water aerobics. But often the kind of effort that comes with exercise is not a possibility.
# 5 “It’s all in your head”
We saved the worst for last. Actually no, it’s not all in my head. Pain and fatigue is found throughout the body and sometimes I feel that even my hair hurts! Yes, it is so bad and the fact that you can not see my pain does not mean it is not a physical condition. Stress, anxiety and depression can make all symptoms of chronic pain worse, but usually do not cause pain.
If you have come this far, it is likely that you are a fibromyalgia sufferer or someone who really wants to understand fibromyalgia to support someone they love. Soft hugs to you if you are the first and thank you very much if you are the last.