23 Truths People With Fibromyalgia Wish Others Understood

Fibromyalgia is a chronic pain disorder that affects an estimated 10 million people in the United States, according to the National Fibromyalgia Association. It’s unpredictable and symptoms vary, but it’s generally characterized by chronic widespread pain, fatigue, abnormal pain processing, sleep disorders, fatigue, problems with cognitive functioning, migraines, anxiety, and depression.

Symptoms come and go, and no cure exists, but experts have found a number of treatments that may help improve functionality. Fibromyalgia is more prevalent in women, and research indicates there could be a genetic component as well. But despite the large number of people who live with it, the average person knows very little about fibromyalgia.

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The Mighty teamed up with the National Fibromyalgia Association and asked their community what they wish others understood about the disease. Here’s what they had to say:

1. “It is real.” — Janie Fisher

2. “I wish we could wear a traffic light device that would allow others to know what kind of day we’re having.” — Linda Mortensen

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3. “It’s always there. Even though I may act ‘normal,’ I still hurt.” — DeJarnett Sharon

4. “It’s unpredictable, unexplainable, and invisible and most often not caused ‘by something you did’ as though it can be avoided or is your fault. It can be all-consuming or it can be liveable, it just depends on the day or week or month or year.” — Kathy Johnson

5. “It’s not fun ‘getting’ to stay home instead of going to work.” — Wendy Wilson

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6. “You think I’m faking being sick, but really I’m faking being well.” — Becky Buice

7. “The ‘fog’… I get frustrated with myself when someone questions, belittles or criticizes… I’m sorry I’ve asked you the same thing three times now. I remember thinking it, but don’t remember asking.” — Sue Cook

8. “Everyday activities are utterly exhausting.” — Kae Romeril

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9. “We are not drug seekers.” — Tammy Bobb

10. “Chronic illnesses are not one size fits all. What works for your cousin’s best friend may not work for me.” — Patricia Bianca

11. “I have to change my plans last minute because I’m really not feeling well. Or I don’t make plans because people get upset when I have to cancel.” — Donna Holbrook

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12. “It’s a chronic condition. I’m not going to ‘feel better soon.’ I’m fighting this ‘invisible illness and I’m losing big time.” — Kristin Sciarappa

13. “We’re not making this up, and it’s not ‘all in our heads.’” — Lisa Hogan

14. “I wish all doctors were more educated and took this disease seriously.” — Donna Brown

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15. “It changes from day to day! One day you’re able to get up and do the normal things, housework, shopping, lunch with a friend, gardening, cooking, then wham the fibro fairy slaps you on the head. It’s all you can do to make it to your kitchen to get your meds and breakfast, everything in your body feels as if you run hundreds of miles, [there’s] burning, stinging pain, even your hair hurts.” — Teresa Hawkins Wilson

16. “Because it’s not something that will kill us, no one really cares.” — Dezaray Smith

17. “Getting a diagnosis of fibromyalgia does not have to mean your life is ‘over.’ It took a good while for me, but I have fought back and I have my life back, most of the time.” — Debra Jean Kelly Greene

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18. “Some days I am just too tired and have too much pain to get anything done.” — Pat Davis

19. “We’re not lazy; we never know how much is too much activity.” — Cindi Halone

20. “Just because I look healthy doesn’t mean I am.” — Heather Lea Berg

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21. “The fatigue is at times paralyzing and we can’t just push past it.” — Tina Wegner

22. “It will not disappear if I lie down and have a rest!” — Joyce Mitchell

23. “We are real, strong people, with real, incredible pain. We did not ask for this and it is not an excuse to be lazy or stay home. No matter how good we look, it is every second battle to live a life.” — Shannon Dawley