Painting the Map Purple for Fibromyalgia Awareness 

Every May, fibromyalgia awareness shows up in familiar ways — purple ribbons, social posts, personal stories, and conversations that say, “This is real. This matters.”

In 2025, our community added another layer to that work.

We set out to paint the map purple — with advocates and organizations working to secure official governor proclamations across the United States recognizing May as Fibromyalgia Awareness Month and/or May 12 as Fibromyalgia Awareness Day.

Not because a proclamation fixes fibromyalgia.
Not because awareness alone is enough.

But because visibility creates leverage.

And because people with fibromyalgia deserve to be seen — not just socially, but officially.

How This Started — and How It Grew

I first started requesting governor proclamations in 2015, in Oregon, where I was living at the time.

It wasn’t part of a national strategy. It was simply the next right step I could take — using my voice, my residency, and a little persistence to help fibromyalgia be seen and taken seriously.

When I moved to Washington State in the fall of 2018, that work didn’t stop. Beginning in 2019, I started requesting proclamations in Washington instead — they can only be requested by someone who is a resident of that state.

For several years, this kind of advocacy happened quietly and locally — one state at a time, led by individuals and organizations doing their best within the limits of what was possible.

There’s a practical reason for that: governor proclamations can only be requested by someone who is a resident of that state.

No single organization — and no single person — can request proclamations everywhere. In many cases, there's also no way of knowing who or which organization requested a proclamation.

And yet, our community is encouraged and inspired to see governors across the country all declaring that our needs are important — and granting those proclamations.

This led us to create the map you see showing which states had governor proclamations issued for Fibromyalgia Awareness Day (May 12th) or Fibromyalgia Awareness Month.

What “Painting the Map Purple” Actually Means

When you see a state turn purple on the map, it means the governor has issued an official proclamation recognizing fibromyalgia.

Since a proclamation becomes part of the state’s public record, we go through each state's records to see which governors have issued a proclamation, then update the map.

A proclamation says:

• Fibromyalgia exists
• It affects a meaningful number of people
• It deserves awareness, education, and attention

This isn’t about a symbolic gesture.

It’s about placing fibromyalgia on the record — where advocates, educators, healthcare professionals, and policymakers can point and say:

This matters. Our governor said so.

Why Proclamations Matter (Even If They Look Small)

I know some people hear “governor proclamation” and think, That’s just a piece of paper.

But here’s what that piece of paper actually does.

It adds credibility in rooms where credibility matters.

When advocates go to their legislators asking for better education, better funding, or better care, they can point to an official recognition from their state.

When patients are trying to explain fibromyalgia to employers, schools, or even family members, that recognition helps counter the idea that this is “rare,” “exaggerated,” or “not serious.”

Fibromyalgia affects about 1 in 16 people — yet it remains dramatically under‑researched and widely misunderstood.

Awareness leads to funding.
Funding leads to research.
Research leads to education.
Education leads to better prepared providers — and better care.

Proclamations don’t finish that work — but they help move it forward.

This Only Works Because People Showed Up

This will never be a one‑person or one organization project. It can't be. Remember, a governor proclamation can only be requested by someone living in the state.

This beautiful purple map only happens because people across the country raised their hands and said:
I can help with my state.

Each state has its own rules, deadlines, and requirements. Proclamation requests must always be submitted by a resident of that state — and in most cases, they must be submitted months in advance.

Many of the people who helped did so while managing pain, fatigue, brain fog, full lives, and limited energy.

Some had fibromyalgia.
Some were caregivers.
Some simply believed that this community deserves better.

Every single submission mattered — whether or not it was approved.

With Gratitude: The People Who Helped Turn States Purple

Whether your state received a proclamation this year or not — thank you for showing up.

One of the core beliefs behind this campaign is simple:

We don’t control whether a governor ultimately says yes. But we do control whether we ask.

And choosing to ask — to submit the request, to take that step — is how change begins.

I want to take a moment to recognize the individuals who helped make the 2025 campaign possible.

Here are the names and states I'm aware of — and I know others contributed behind the scenes. If I missed you, please reach out so we can say thank you.

Louder Together Than We Ever Are Alone

Fibromyalgia advocacy has too often happened in silos — people working hard, but separately.

When we coordinate — across organizations, coaches, advocates, patients, and caregivers — our voices carry further.

Painting the map purple isn’t about credit.

It’s about coordinated momentum towards a common cause.

If you want help in your area, please reach out.

Additional Coverage

This advocacy effort has also been covered and discussed in the following places:

Media Coverage

• "Raising Fibromyalgia Awareness: Tami Stackelhouse’s Efforts to Paint the Map Purple" — US Insider
• "Fibromyalgia Awareness Day: Tami Stackelhouse’s Advocacy for National Recognition" — US Reporter

Conversations and Interviews

• "Painting The Country Purple with Fibromyalgia Awareness!" — The Fibro Show
• "Official Proclamations for Fibromyalgia Awareness with Melissa Swanson" — Fibromyalgia Podcast^®

Action Steps

Even though the 2025 campaign has ended, this work doesn’t stop.
It continues, every year and in every state.

Once we receive a proclamation, it's only good for that year and that state.
This means we begin again — each year, from zero.

People move. Governors change.
States that are purple one year may need new advocates the next.

If you live in the United States and are willing to help — now or in the future — I would love to hear from you. You can contact us here. 

You don’t need advocacy experience.
You don't need to do this alone.

We can guide you every step of the way. In fact, we can even act as your "virtual assistant" to submit the proclamation request.

Sometimes the most meaningful change really does start with five minutes and a willingness to raise your hand.

Together, we’ll keep painting the map purple — and building a future where fibromyalgia is recognized, understood, and taken seriously.