Tami Stackelhouse and Sharon Waldrop, President of the Fibromyalgia Association, at the 18th Annual Michigan Fibromyalgia Awareness Day event in 2019.
Fibromyalgia is more than just chronic pain, it’s a daily challenge that impacts millions of people worldwide.
The good news? You don’t have to face it alone, and you don’t need to be a doctor or researcher to make a difference. You also don’t have to start big—every action, whether small or large, can help support others and raise awareness.
In this post, we’ll explore different ways to get involved—from spreading awareness and joining support groups to fundraising, advocacy, and even creative projects. Whatever your skills or how much time you have, there’s something here for everyone.
Awareness & Education
1. Share Your Story – Post about your journey on social media, in a blog, or even a local paper to help people understand what life with fibro is like. If you do not feel comfortable sharing your own story; follow and share reliable information from fibromyalgia and medical organizations and groups, such as:
- Fibromyalgia Podcast®
- The Fibro Compass℠
- The Fibro Show
- Fibromyalgia Association
- Fibromyalgia National Health Organization (formerly the International Support Fibromyalgia Network)
2. Host or Speak at Events – Team up with hospitals, libraries, or community groups to give talks about living with fibromyalgia, such as self-care, pacing, or the latest research. Invite leaders in the community to speak to a support group.
Tami at the 5th annual International Support Fibromyalgia Network (now the Fibromyalgia National Health Organization) Fibromyalgia Awareness Day event in Brooklyn Park, MN, May 2019.
Peer Support & Community
Join or Lead Support Groups – Be part of an in-person or online support group like the Fibromyalgia Association (Zoom, Facebook, Meetup) where people can share tips and encouragement.
Become a Certified Fibromyalgia Coach® – Through the International Fibromyalgia Coaching Institute, you can be trained and certified to guide others with fibro, helping them manage symptoms, set goals, and build confidence in daily life.
Start a “Fibro Friends” Meetup – Organize easygoing get-togethers like coffee chats, gentle yoga, or art sessions to fight isolation and build friendships.
Fundraising - Organizing a fundraiser can take a lot of time and energy. If this is too big for you to take on, start simply by donating to organizations funding research, education, and patient support – or team up with others for events. Fibromyalgia Awareness Month in May is a great time for this!
Advocacy & Policy
- Contact Your Representatives – Write letters or emails asking for more funding for chronic pain research and better disability access.
- Sign & Share Petitions – Back efforts for better insurance coverage, workplace accommodations, or fibro recognition.
- Join Advisory Boards – Some research groups and companies look for patient input when planning studies or treatments.
- Participate in IFCI's "Paint the Map Purple" Campaign – Raise awareness with requests for official proclamations declaring May as Fibromyalgia Awareness Month. This encourages governors and local leaders to recognize and support the fibro community in an official capacity. As coordinator of this campaign, I can make this super easy for you and can even serve as your "virtual assistant" to do some of the work. Contact us if you'd like to take part.
Creative & Content Creation
- Produce Educational Videos or Podcasts – Interview experts, share coping strategies, or simply talk about daily life with fibro to raise visibility. The authors on this blog are a great place to start if you need someone to interview.
- Design Awareness Merchandise – Create and sell “Purple for Fibro” T-shirts, pins, stickers—proceeds go to charity and you raise the profile of the cause.
Action Steps
You don’t have to do everything on this list to make a difference. Instead, pick one action that feels right for you. If there is anything we can do to help support or promote your efforts, please let us know!
Share a post to raise awareness.
Attend (or start!) a local or online support group.
Write to your representatives about funding for fibromyalgia research.
Donate to or volunteer with a fibro-focused nonprofit.
Encourage others to wear purple and talk about fibromyalgia awareness in May.
Giving back to the fibromyalgia community isn’t just about helping others—it’s also about finding connection, hope, and empowerment for yourself. Together, we can bring more understanding, compassion, and visibility to fibromyalgia and the people living with it every day.
Whether you choose to share your story, lend your time, or simply listen, your voice matters.
As Tami always says:
“Our stories have power. Power to encourage, educate, and bring hope to those who are feeling lost and alone.”
1. Tami's Photos Courtesy of Tami Stackelhouse
2. Author Photo Courtesy of Melissa Swanson
About Melissa Swanson
Melissa Swanson is a chronic pain patient, advocate, and author. Through her Fibro Warriors ~ Living Life Facebook page and blog, she offers positive encouragement, medical information, resources, and support to 20,000+ fibromyalgia and chronic pain patients. She is a Certified Fibromyalgia Advisor®, the author of Ravyn’s Doll: How to Explain Fibromyalgia To Your Child, and a graduate of the Leaders Against Pain Scholarship Training, sponsored by the National Fibromyalgia & Chronic Pain Association.
Photo by Melissa Swanson
