Living with fibromyalgia can be more complex than the general population tends to believe. There can be misconceptions. There can be friends and family members who claim that there are easy fixes. There can be doctors who don’t take your symptoms seriously. Due to all this white noise, you might feel like you aren’t truly being seen.
There are so many misconceptions about fibromyalgia. If you have fibromyalgia, you might be worn out and exhausted by the constant assumptions the world makes of you. Please know it’s completely OK to be exhausted by the presumptions people have about your chronic illness. It’s not fair to you if you have to regularly explain yourself and your diagnosis.
To help bust some common misconceptions about fibromyalgia and explain what the condition is really like, we asked our Mighty community to tell us what fibromyalgia is not. Check out how they finished the statement below, and let us know what you believe fibromyalgia is not in the comments.
Here’s what our community had to say:
Fibromyalgia is not…
1. …the same for every person.
“Fibromyalgia is not the same for every person. It’s not even the same every day!” – Becky T.
“Fibromyalgia is not the same for everyone. Just because your sister who has it can exercise and be active does not invalidate my pain.” – Danielle P.
“Fibromyalgia is not a one-fits-all diagnosis. There are so many symptoms which vary from person to person. It’s a lifelong, life-changing condition and it’s not visible to others which makes it so difficult to be recognized and accepted by those who don’t suffer from this debilitating condition.” – Marie C.
2. …something that can be “fixed.”
“Fibromyalgia is not solved by sleep and yoga. It is not laziness, it is not just an excuse to stay home from work, and it doesn’t feel the same as when you stayed up too late partying and feel like crap the next day.” – Kitty P.
“Fibromyalgia is not going to get better by fresh air and a positive attitude!” – Emily V.
“Fibromyalgia is not preventable. There wasn’t something I could’ve done to keep it from happening. With that it’s also not age specific. I may be ‘only 33,’ but there are others who are younger, older, we are all in pain. Period.” – Amanda M.
4. …determined by your weight.
“Fibromyalgia is not something I got because of my weight. In fact, I gained most of my weight after being diagnosed and prescribed medications.” – Shelby C.
5. …easy to deal with.
“Fibromyalgia is not easy. It’s the hardest thing I’ve ever dealt with and there’s no end, no cure, no simple answers.” – Shonna K.
“Fibromyalgia is not forgiving. You can’t just push through it. You will pay dearly on the other end.” – Dawn D.
6. …”just” pain.
“Fibromyalgia is not just pain. There are endless symptoms: debilitating fatigue, temperature dysregulation, sensory overload and so many more.” – Alexandria P.
“[It’s not] just pain. A lot of people don’t seem to understand that the illness has so many symptoms, not just pain.” – Joanne R.
“Fibromyalgia isn’t simple pain. It isn’t feeling tired. It isn’t chosen by the sufferer, and it is not preventable. Fibromyalgia is all over, inside out burning, aching, stabbing, shooting, and crushing pain. It is bone deep exhaustion that never gets better. It is brain fog that feels like dementia. And it is not curable.” – Jason P.
“Fibromyalgia is not in our heads. It’s not imaginary pain. It’s real and it’s excruciating. Just because you can’t see my pain doesn’t mean it doesn’t exist!” – Jenny S.
“Fibromyalgia is not something that is made up in your head. It is real.” – Cassie G.
“Fibromyalgia is not all in my head. It can be affected and worsened by many factors, such as the time of year, weather, personal stress, menses, it can be felt in joints, muscles, through headaches and migraines, extreme fatigue, sciatica, stomach pain, IBS, brain fog, it can cause trouble regulating body temperature, and flare-ups can cause sensitivity to light, sound and sudden movements.” – Zoe P.
8. …taken seriously.
“Fibromyalgia is not taken seriously. In my opinion it’s very dismissed and misunderstood especially by health practitioners.” – Capricia D.
9. …determined by your age.
“Fibromyalgia is not age restrictive, you can get it at any age.” – Amy S.
“Fibromyalgia isn’t just for people 40+. I was diagnosed at 22 in 1997, the start of my senior year in college. At the time it was considered a menopausal woman’s psychosomatic disorder. But I was just starting my life, and told ‘Don’t make any major life changes.’ Hello!? I was graduating from college. The older women in my support group told me I would have kids and a life, it would just be harder. A lot harder. And they were right.” – Tracy S.
“Fibromyalgia is not catching! People sometimes don’t want to touch you, and they think it’s like a disease. Fibromyalgia is pain, headaches, brain fog, many things and many different symptoms for lots of people. It’s real… and not in our heads.” – Victoria C.
“Fibromyalgia is not contagious.” – Laura C.
“Fibromyalgia isn’t just two or three bad days a week, I’ve had several doctors ask me how many days a week I feel like I’m in pain and I tried to explain to them it’s not like that. I have to explain that the pain shows up whenever it feels like it and sometimes it could last a few days or sometimes it can last over a month.” – Esther E.
12. …easy to explain.
“Fibromyalgia isn’t easy to explain to someone that doesn’t suffer with it. Every day is different living with this awful illness. It also puts your life on hold and all planning goes out of the window. You learn to know who your real friends are, that’s for sure.” – Emma R.
“Fibromyalgia is not like anything or any other disease people/doctors can imagine unless they have it. It’s life-altering!” – Angie M.
13. …a choice.
“Fibromyalgia is not something I made up to get attention. It is not something that is gone on my good days. I’m not faking anything on my bad days.” – Marsha H.
“Fibromyalgia is not a choice. We never asked for this condition. We just wanted to be treated with dignity and not put down if we don’t live up to healthy people’s expectations.” – Letia N.