A lot of information comes up when you Google “fibromyalgia” — associated symptoms, treatment options and the like. It’s probably similar to what a doctor might tell someone recently diagnosed. But a lot goes unmentioned — things you might not know unless you have fibromyalgia or love someone who does. And even then, as is true with many chronic illnesses, there are things people who have it just don’t talk about.

We asked people with fibromyalgia in our community to share one thing not often talked about when it comes to having this disease. Every answer offers more insight into this misunderstood illness — and hopefully increases awareness and advocacy in the process.

1. “There’s a lack of knowledge about fibromyalgia in the medical community.” — Kayleigh May Meek

Blurred photo of stethoscope with the text: "There is a lack of knowledge about fibromyalgia in the medical community."

2. “It can negatively effect a person’s sex life and relationship issues may arise because of this. I have found this to be the most isolating part of the diagnosis.” — Alison Taylor

3. “It is so much more than having to accept not feeling good or having to take medication. Regardless of interest or motivation, it cuts down on your life and what you can do, and what goals you can set and ultimately changes how you see yourself.” — Mary Lynne Mountjoy

4. “It is a real chronic illness. It is not something doctors tell patients just because they do not know what the true problem is.” — Lexi Potter

Hands holding clouds with the text: “It is a real chronic illness. It is not something doctors tell patients just because they do not know what the true problem is."

5. “There will be pain even after treatment and lifestyle changes. It is chronic pain. It can be managed but not cured. Flare-ups will occur like a surprise smack in the face.” — Nikki Albert

6. “It impacts your ability to follow your career dreams, to interact the way you want to with your children.” — Stacy Schofield Adkins

7. “Fibromyalgia doesn’t play fair. The physically stronger people don’t overcome, unfortunately. You have to become smarter and learn your limits.” — Julie Garver

8. “It is a progressive illness and seems to get worse every year for me. Plus so much gets blamed on it once you get a diagnosis that other problems that actually aren’t the fibromyalgia get missed.” — Janet Secord

9. “Fibromyalgia is different for different people. My fibro means my feet often feel like they’re burning and I have to use ice-packs on them, but my friend with fibro always has freezing cold feet and has to wear thick, warm socks and use warm foot baths. The only similarity is that neither of us regulate or own body temperature very well. This isn’t a one-size-fits-all diagnosis, and there isn’t a one-size-fits-all treatment.” — Joanne Purewal

Four figs on a wooden table with the text: "This isn't a one-size-fits-all diagnosis, and there isn't a one-size-fits-all treatment."

10. “No one talks about the stress it puts on relationships. The inability to be able to do the things you love, as well as keeping the house clean.” — Echo Shifley

11. “The fear. It is incredibly scary to be diagnosed with a disease that half the medical profession doesn’t believe in, doesn’t know what causes it and doesn’t know how to fix it. It’s really scary not to be in control of your own body. I have no idea why it does half the things it does. The scariest thing is I never know if my symptoms are fibro or something more sinister. I’m very scared that one day they will discover something terrible that has been explained away by fibro.” — Kathleen Hughes

12. “Pain and fatigue is just the tip of the iceberg. It affects literally everything!” — Winifred Kakouris

13. “It is so unpredictable. One day I can be feeling pretty OK and actually get a few things done, and the next day I’ll wake up feeling like I got hit by a truck. Some days I need a cane, some days I need a walker, some days I can’t even get out of bed.” — Vanessa Blevins

14. “Family and friends don’t seem to understand the emotional impact fibro has on my life… how much depression and anxiety being in constant pain brings. I can’t just snap out of it. I literally mourn the loss of my former self.” — Terri Brown-Watson

15. “It takes energy to move through the pain and fog to be productive. So many compromises all through the day. If I shovel the walk will I be able to prepare dinner? Will my children manage if a play with them for two hours then need to sleep four hours?” — Judith Brain

16. “It can be isolating and utterly devastating to have everyone not believe you. It’s soul crushing to be told, ‘It’s all in your head’ and that your pain is not valid. — Katie Andersen

17. “Having fibro is a roller coaster ride. I don’t ever know what’s coming next, and the emotions that come with it — well, that’s just overwhelming at times.” — Amy Reilly

18. “You may have guilt over not being able to do all the things you need and want to do every day. It’s crushing and one of the main reasons I feel so depressed.” — Jennifer Leigh Brown

19. “No matter how hard you try to relax, sometimes your muscles just won’t.” — Brandy Bowie Fallon

Feet hanging over the side of a couch with the text: “No matter how hard you try to relax, sometimes your muscles just won’t.” — Brandy Bowie Fallon

20. “Of those living with fibro, approximately 90 percent are women. There absolutely should be the deliberate and scientific presence of a gender bias that brings new insight into women’s health and treatment, while confronting this disease. Instead, there is often a sexist cultural gender bias at work in confronting, and undermining, the women who live with it.” — Arria Deepwater

21. “No one talks about how often we force ourselves to do things we really don’t want to do, only because we get tired of seeing the look of disappointment in the eyes of others.” — Lin WallBonn

22. “It’s hard to balance earning a living, what friends expect of you, your own expectations, and your family responsibilities without triggering a flare.” — Karen Glorsky Epstein

23. “No one talks about how many times you’ll hear that ‘it’s all in your head.’ That ‘no one can be that sick.’ No one tells you how people will leave your life because they can’t handle it.” — Katherine Herrmann

24. “It affects your family. My mom suffers from fibro. I can recall many instances when I was younger thinking to myself, ‘Why can’t my mom just be like other moms and do cool, fun stuff.’ Now 12 years later I’m married and have kids, and I am just now realizing she did everything she could to store up energy for one good day out of every 15 to 20 days just for her kids. I can’t sit back and say I didn’t notice a difference in my childhood because of fibro because I did. What I can say is I’ve learned the meaning of loving sacrifice from it.” — Ana Tomson

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