Rare

February 2026 Chronic Pain Project updates, writings and tidbits

Feb 18, 2026

February Musings

Did you know February is Rare Disease Month? In this issue, we’re diving into rare diseases and their relation to chronic pain. Read on for ideas, stories and resources for the chronic pain community.

Not So Rare After All

“When you hear hoofbeats, think of horses, not zebras.”

A couple of zebra standing next to each other — Photo by Xiangkun ZHU on Unsplash

This well-known medical maxim, coined by Dr. Theodore Woodward in the 1940s, advises doctors to look for common, expected diagnoses (horses) before considering rare ones (zebras).

According to the National Organization for Rare Disorders (NORD), a disease, disorder, illness or condition is considered rare if it affects fewer than 200,000 Americans. Rare disease patients face numerous hardships, from symptoms mimicking other conditions, to taking years to get a diagnosis, to lacking effective treatments.

But what is it like to be told your pain has a rare cause, only to have the true diagnosis be more common?

I experienced that type of medical whiplash a few years ago, and it shaped how I view my chronic pain. After ongoing joint pain, I had two foot surgeries in 2014 and 2015 that kicked off new foot swelling, pain, redness, and extreme reactions to heat and cold. A podiatrist told me it was erythromelalgia, a rare condition characterized by burning pain, severe redness (erythema) and increased skin temperature. Having a name for my new reality felt like a relief!

I spent almost a week at the Mayo Clinic in Minnesota enduring multiple tests. They seemed to point to the same rare diagnosis, but I felt condescended to by specialists who understood what was happening but didn’t offer helpful pain management. Once home, I explained the rare diagnosis again and again to others, receiving puzzled looks.

It took more than 5 years until a different podiatrist clarified that my problem was Complex Regional Pain Syndrome (CRPS), a misunderstood but more common ailment. Erythromelalgia affects 1.3 people per 100,000 in the United States, while there are nearly 200,000 people in the U.S. dealing with CRPS, putting the syndrome right at the edge of the rare disorder cutoff.

Experiencing the back and forth of a wrong diagnosis was disorienting. Still, I’d go through it again to get to the correct outcome. Now I feel more understood and have a clearer path to treat my chronic pain. I’ve learned that it doesn’t matter if the hoofbeats are horses or zebras, as long as I have the right support as I follow the tracks.

Are you living with chronic pain and a rare disease? Did you go through a wrong diagnosis on your path to the right one? We’d love to hear your experience in the comments below.

Hear from Our Artists

Not only do our artists create moving pieces, they also have fascinating life stories. In a 3-4 minute video, each artist shares more about their chronic pain story and talks in depth about the piece(s) they’ve created for our exhibits.

This month, we focus on Maggie Zenn, who shares how scoliosis, rheumatoid arthritis and neuropathy inform her artwork.

“My art, it’s really about freedom. I don’t feel trapped in a broken body when I am creating.”

Click to watch the video on YouTube.

Did you know you can support artists with chronic pain? Your donation removes barriers like shipping costs for artwork, provides art supplies to participants who face financial limitations, and allows artists to share their stories through sliding scale and free programming.

Donate Today

News & Resources

Rare Disease Day: February 28 is Rare Disease Day, a time to raise awareness and effect change for the 300 million people worldwide living with a rare disease. The initiative builds community for rare disease patients, caregivers and supporters. Click through to share your support using social media assets, which are available in 21 world languages.

Rare Disease Support: NORD compiles an Organizational Database (ODB) that lists organizations and resources that can provide patients and families with free information, support, and services. This includes a number of organizations focused on chronic pain.

Show Your Love: With Valentine’s Day this past weekend, love is in the air. That includes love for partners, friends and yourself! Head to our Instagram for ideas of small acts of love that can make a meaningful difference for someone with chronic pain.