From the Kitchen Floor to a National Fibromyalgia Nonprofit

One year after my fibromyalgia diagnosis, I founded what was then called the Fibromyalgia Support & Education Group at St. John Macomb Hospital — a small community meeting that eventually grew into what is now the Fibromyalgia Association, a national nonprofit serving people across the country.

I never planned to start an organization. I was simply looking for answers.

After my diagnosis, I quickly realized how difficult it was to find credible information, knowledgeable healthcare providers, or even other people who truly understood what I was going through. Instead of finding guidance, I found confusion, skepticism, and very little support. So I traveled across the country to attend a national conference, where I met researchers, physicians, and patients who were all searching for the same thing — understanding, validation, and better care.

I wanted to bring that information back to my community, and I hoped there were others nearby who needed it as much as I did.

I received training from the Arthritis Foundation to become a support group leader and decided to start my own group. I prayed we would have enough people for the first meeting — maybe five or ten.

Seventy people showed up.

I was shocked. Some were in tears, thanking me for creating a place where they finally felt understood. I had no idea that night in November 1997 would become the seed that started my nearly 30-year career in fibromyalgia education, advocacy, and community building.

Over the years, the group continued to grow. More than 2,000 people have attended our events over the past three decades, and we are proud that physicians regularly refer patients to our group — something that is not always common. Many doctors hesitate to recommend support groups because some can become discouraging or overly negative.

I understand that concern.

The first support group I attended after my diagnosis left me crying all the way home. I was only 24 years old, and most of the people there were much older and using walkers or wheelchairs. I remember thinking, Is this what my future will look like? Is my life over?

But when I attended educational conferences, I felt something completely different — hope.

I realized that if I could combine accurate information, positive support, and a sense of community, we could create something that truly helped people move forward. That vision became the foundation of our Support & Education Group, which now turns 29 years old and has met monthly since that very first meeting — well over 300 meetings and counting.

At the time, starting the group just felt like the only thing that made sense.

I remember lying on the floor in my kitchen after walking there from my bedroom because I was too exhausted to make it back. I had painful and confusing experiences with healthcare providers. One doctor told me I should go on disability, only to criticize me at the next visit for bringing in the paperwork. I was told I would have to “learn to live with it,” but no one could tell me how.

And this was not my first experience being dismissed.

As a teenager, I struggled for years with severe pelvic pain caused by vulvodynia and endometriosis, beginning around age sixteen. I was repeatedly told nothing was wrong. Eventually, an ultrasound revealed a growth the size of a tennis ball that required surgery. Only then did I finally receive treatment.

Unfortunately, stories like this are not uncommon. Research shows that women’s pain is more likely to be dismissed, minimized, or attributed to emotional causes, and women often experience longer delays before receiving an accurate diagnosis compared to men. These disparities are especially well documented in chronic pain, autoimmune conditions, and gynecologic disorders — including fibromyalgia.

Those experiences shaped my determination to make sure others would not have to navigate this journey alone. As the work grew, other women — and men — joined me as volunteers, turning one small support group into a community effort dedicated to education, support, and advocacy for people living with fibromyalgia.

As the support group grew, I began connecting with national organizations, researchers, and clinicians. It became clear that there was a need for a stronger, more formal structure to support education, advocacy, and awareness. In 2003, we incorporated as a nonprofit, becoming the Fibromyalgia Association of Michigan. Over time, our programs continued to expand, and during the COVID pandemic our support groups, education programs, and conference moved to a virtual format. As a result, people began joining us from across the United States and beyond. Because our reach was no longer limited to one state, we shortened our name to simply the Fibromyalgia Association, reflecting the national community we now serve while staying true to our Michigan roots.

Over the past three decades, our organization has been involved in patient education, support programs, research collaboration, and advocacy at both the state and national level. We continue to raise awareness because, even today, many people still do not understand what fibromyalgia is or how profoundly it affects quality of life.

This year also marks the 25th Annual Fibromyalgia Awareness Day Conference, which will be held on May 16, 2026 — another milestone that grew from that very first meeting.

Looking back, what began as a search for answers became a lifelong mission. What started with one small meeting grew into a community that has supported thousands of people living with fibromyalgia and chronic pain. That journey is exactly what this year’s International Women’s Day theme, Give to Gain, means to me. When we give our time, our knowledge, and our compassion to help others, we often gain purpose, strength, and connection in return.

While this article reflects my experience as a woman and is written in honor of International Women’s Day, fibromyalgia does not affect women alone. Research suggests that as many as 30% of people living with fibromyalgia are men, and our organization is committed to supporting anyone affected by this condition. From the beginning, both women and men have volunteered, attended our programs, and helped grow this community, united by the shared goal of making sure no one has to face fibromyalgia alone.

Over the years, my life has taken turns I never could have imagined when I was lying on the kitchen floor, too exhausted to stand. I have gone from bedridden to hiking, zip lining, and even rock climbing. I am married, have children, and what began as a search for answers became an unexpected career dedicated to helping others. Today I am a National Board Certified Health & Wellness Coach, and I continue this work through our Support & Education Group and in my private coaching practice. My journey has taught me that while fibromyalgia can be life-changing, improvement is possible, especially when people have the right information, support, and guidance.

I didn’t start the Fibromyalgia Association because I felt strong. I started it because I needed help — and I knew other women did too.

If this story speaks to you, consider helping us continue the work that began with one small support group in 1997.

This International Women’s Day, honor the spirit of Give to Gain by supporting the Fibromyalgia Association so we can continue providing education, community, and hope to those who are still searching for answers — just like I was.

Learn more, get involved, or donate. Because when we give support to others, we all gain strength.

Rep. Lori Stone presents FA President Sharon Waldrop with a tribute for the Association's years of service.