Living with fibromyalgia is extremely difficult, as millions of patients around the world can attest to. 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 suffer from unbearable pain on the inside. Understanding this fact is important for anyone looking to support a friend or family member of someone 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 someone with fibromyalgia definitely does not mean. We believe that we say nothing at all better than one of these 5 things.
#1 “You don’t look sick”
This comment demonstrates a complete lack of understanding of invisible diseases. Not all serious illnesses are accompanied by overt and apparent symptoms such as being in a wheelchair. People with fibromyalgia have often learned coping mechanisms and may use their limited energy each day to try to appear more normal to others. But the pain is still there. And even referring to someone with fibromyalgia, they claim that they are likely to put their relationship with them at risk.
#2 “Must be nice not having to work”
Uh, no…it’s not. The vast majority of those with fibromyalgia would do anything to regain their independence and the ability to work full time.
The idea that not being able to work was a choice or that they’re just lazy is incredibly insulting.
#3 “I Heard Fibromyalgia Isn’t A Real Disease”
You already heard wrong. The cause of fibromyalgia is still under investigation and the amount of research lags behind other health conditions due to lack of historical understanding. But that doesn’t mean it’s any less real for the nearly 6 million fibromyalgia sufferers 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 received its own diagnostic code and was recognized for years by the administration from the FDA and Social Security.
#4 “You just need to exercise more and be more active”
If only it were that easy. The fact is, many people with fibromyalgia push the limits of their physical ability by getting up and taking a shower every day.
Many find some relief in yoga or other gentle exercises such as water aerobics. But often the kind of exertion that comes with exercise isn’t a possibility.
#5 “It’s all in your head”
We saved the worst for last. Actually no, it’s not all in my head. The pain and fatigue are all over the body and sometimes I feel like even my hair hurts! Yeah it’s so bad and just because you can’t see my pain doesn’t mean it’s not a physical condition. Stress, anxiety, and depression can make all symptoms of chronic pain worse, but usually don’t cause pain.
If you’ve come this far, chances are you’re a person with fibromyalgia or someone who really wants to understand fibromyalgia to support someone they love. Sweet hugs to you if you are the first and thank you very much if you are the last.
