Every year on May 12, thousands upon thousands of people and organizations honor National Fibromyalgia Awareness Day. We wear purple, and we write blog posts about what it’s like to experience the condition, and we talk about advocacy efforts.
And every year I feel like that effort falls flat. It’s nice to have awareness, but often, it’s just a blip on the radar. Sure, now you’re reminded fibromyalgia exists. But what’s next? It’s just one of hundreds of national health observances that seem to come and go without much impact.
This year, I’m trying something different. Something simple.
Fibromyalgia impacts an estimated 10 million people in the U.S., and about 3%-5% of the world’s population. Odds are very, very good that you know someone with fibromyalgia, whether they’re vocal about it or not.
I am one of those people.
If you think you don’t know someone with fibromyalgia, hold up—you know me, right? Even just a little bit? Well, I have fibromyalgia.
So let all your preconceptions about the condition and about those of us who have it fall away… now’s your chance to REALLY understand what it means to live with all the symptoms we endure.
Ask me anything.
Ask any other person you know with fibromyalgia what their experience is like. Ask how you can help. Ask where you can learn more. Ask how you can join the movement for more research. Ask how you can help remove the stigma.
Seriously: Ask. Post a question in the comments below, send me an email, text me, post a question on Instagram… anything. Just ask.
The more we know about the experience, the more normalized it becomes… and the easier it is for those of us living with fibromyalgia to ask for—and receive—the accommodations we need and deserve. And when we get that understanding, compassion and accommodation, we’re able to be more active, productive members of society. We thrive. We give back. I am living proof of that, y’all.
Today’s the day: Ask. Heck, ask me ANY day and I’ll tell you what you want to know.
And those of you with fibro? Tell.
Today’s your day! (Heck, any day is your day!) Share your experience. Offer to answer questions. Post links to helpful organizations like Fibro Center, U.S. Pain Foundation, the National Fibromyalgia Association and the National Fibromyalgia & Chronic Pain Association. Ask folks to sign the petition for a cure. Be a resource.
That’s it… super simple. And let’s make awareness of fibromyalgia and its impacts a year-round thing, OK?
Jenni, I just wanted to say THANK YOU!!!!!! You’re an amazing young woman with such an amazing attitude! Even though I am not a young chronicbabe I am a young at heart chronicbabe! I love everything thing to do and stand for. Don’t ever stop being you! Don’t ever stop spreading your message! You do make a difference! I cannot wait for your book to come out. Bless you for all you do! Mary Dean a slightly older Chronicbabe!
oh hugs, mary dean! you rock! XO
I also have had it for many many years. Today, I had a neurologist say to my face, Does fibromyalgia really exist??? Where has he been the last twenty years????? That is still being questioned when over five million people have the same symptoms, is just beyond my understanding!! I just fired him as my doctor for sure!!!!
grrrrrrrrr good for you for firing him!
I had someone say thier doctor said we (Americans) were spoiled. She fired him also.
ugh. good for her for firing him!
You are spot on! Thank you!
thanks tina! hugs!
Thanks Jenni. I’ve just started seeing a pain specialist (who charges $400 an hour) who flat out told me he doesn’t believe that fibro exists. Well here I am and I disagree! In the end though, I don’t care what he calls it if he can help me with it.
but if he doesn’t believe in it, sounds like a wrong fit, IMHO. but is he helping with the symptoms? hope so!
He’ll keep taking the money though!
I was diagnosed back in 2003 after a motorcycle accident. Back then it was nearly impossible to find a doctor who believed in it and treated it. It’s better now since the advertising for Lyrica started but there are still LOTS of health care providers who brush it off as being “all in your head”. Hope things continue to change for the better and awareness becomes much more widespread.
ah, me too. hugs!
You seem like an intelligent, beautiful woman, but you are behind on science. Studies are showing that Fibro is caused by Lyme disease possibly 100% of the time. Most of my thousands of friends with Lyme were misdiagnosed with Fibro and actually have a treatment now to help with the pain.
According to the CDC there are over 300k cases of Lyme disease a year in the US and only 10% are being diagnosed. Recently China did a study and found that 3% of their population were infected with Lyme or another tick-borne illness.
Those who have looked into the connection fibro has with Lyme disease are tankful. I hope you will.
ah marie, thank you for your kind words. but i respectfully disagree. the most recent research shows that fibromyalgia is connected to a central nervous system disorder, and is not connected to Lyme disease; this comes from the ACR, AMA and other respected medical organizations.
it is true that many people have them both; it is also true that many with Lyme are incorrectly diagnosed with fibromyalgia first. That is a terrible situation, and we could really benefit from a medical system that is more up to speed on both conditions.