Living with fibromyalgia is extremely difficult as millions of people around 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.
Someone with fibromyalgia may look totally good on the outside but suffer from excruciating pain inside. Understanding this fact is important for those 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 suffering from fibromyalgia, here is a list of 5 things you definitely do not want to tell someone with fibromyalgia. Believe us, you’d better say nothing at all than one of those 5 things.
# 1 “You do not look sick”
This comment demonstrates a complete lack of understanding of invisible diseases. Not all serious illnesses are accompanied by obvious obvious symptoms such as being in a wheelchair. People with fibromyalgia have often learned coping mechanisms and can use their limited energy each day to try to seem more normal to others. But the pain is still there. And even suggesting to someone with Fibromyalgia that they are pretending, this will likely put your relationship with them in danger.
# 2 “It must be nice not to have to work”
Uh, no … it’s not. The vast majority of people with fibromyalgia would do anything to regain their independence and the ability to work full time.
The insinuation that not being able to work was a choice or that they are just lazy is incredibly insulting.
# 3 “I’ve heard that fibromyalgia is not a real disease”
You have not heard correctly. The cause of fibromyalgia is still under study and the number of searches is lagging behind other health issues due to lack of historical understanding. But that does not make it any less real for nearly 6 million people with fibromyalgia in the United States alone.
Fibromyalgia was officially recognized as a true disease by the US health care industry late last year when it received its own diagnostic code and was recognized for years by the FDA and Social Security Administration.
# 4 “You just need to exercise more and be more active”
If only it were easy. The fact is that many people with fibromyalgia are pushing the limits of their physical abilities 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 effort that comes with exercise is just not a possibility.
# 5 “Everything is in your head”
We saved the worst for the end. In fact, no, everything is not in my head. The pain and fatigue are all over my body and sometimes I even feel that my hair hurts! Yes it’s so bad and the fact that you can not see my pain does not mean it’s not a physical condition. Stress, anxiety and depression can aggravate the symptoms of chronic pain, but they usually do not cause pain.
If you have done so far, you are probably a fibromyalgia sufferer or someone who really wants to understand fibromyalgia to support someone they love. Sweet cuddling to you if you are first and thank you so much if you are the last