Using Butterflies and Community Support to Navigate Challenging Pain

By Grayson Schultz

Thousands of people who follow Dawn Gibson and her popular #SpoonieChat on Twitter know about her love for butterflies, both as an insect and as a metaphor for growth. But a different creature better helps explain the day-to-day effect of her ankylosing spondylitis (AS): leeches. Dawn chuckles as she visualizes the exhaustion the condition causes, explaining that it’s as if her body is covered in leeches that slowly drain her of energy.

When Dawn began experiencing chronic pain in 2001 at the age of 24, her diagnosis of AS was a fraught one.

The conventional wisdom at the time, Dawn explains, was that only white men could develop AS, a type of immune-mediated arthritis capable of striking any part of the body, but best known for attacking the hips and spine. It can cause fusions of the vertebrae and intense pain.

A DEARTH OF EFFECTIVE TREATMENT OPTIONS

A year after her pain began, scans showed there was “virtually no doubt that I had [AS],” Dawn says. She began treatments that were “mainly [rheumatoid arthritis] hand-me-downs. They didn’t work, and they made me pretty sick.”

In addition to AS, Dawn, 46, also lives with uterine fibroids and cold sensitivity. She recently experienced iron deficiency anemia that was so severe it was life-threatening. Stepping back to practice self-care was, and continues to be, crucial to her recovery.

“Put yourself first,” Dawn encourages. “It might just save your life.”

Today, her pain comes and goes. It varies in intensity, but dealing with it always depletes her energy.

Dawn draws support from her closest friends, family, and community. She finds strength in the work she does with organizations such as Creaky Joints, the Spondylitis Association of America, HealtheVoices, and the National Pain Advocacy Center (NPAC).

Dawn is on the board of directors for NPAC, serving as the chair of the Community Leadership Council. NPAC is a national legislative and policy advocacy organization focused on equitable pain care.

“Working with NPAC helps me feel more hopeful about the long-term pain care environment for myself and the patients we’re all trying to help,” Dawn shares. “We have a long way to go, but I believe that if we keep working together on humanizing pain patients and pain care accessibility, things will change.”

Dawn, who lives in suburban Detroit, says that because she is on Medicaid, accessing specialists can be difficult due to out-of-date directories, incorrect listings, and often needing to travel to major universities to find specialists who will take her insurance.

Dawn offers this guidance to individuals living with pain: “Instead [of asking for pills], talk about how the pain is impacting your role, activity, ability to sleep, and mood,” she says—this makes patients’ experience more relatable to providers.

She says it’s vital that those with disabilities avoid stereotypes and prejudice toward others with disabilities—something she has seen in pain communities. “We can’t throw patients with substance use disorder or any other unpopular patients under the bus to improve our own legitimacy,” she says.

“The way we treat people matters.”

CREATING A COMMUNITY

Dawn never has a pain-free day. She has tried opioids, a variety of topicals, a transcutaneous electrical nerve stimulation (TENS) unit, and non-steroidal anti-inflammatory drugs (NSAIDs). “The NSAIDs almost killed me,” she says, “and severely damaged my stomach.”

She adds, “When I had access to low-dose opioids and other pain treatments, my life was completely different. I could work full-time.” These medications helped turn down the volume on her pain, but policy-related limitations, which created barriers for individuals living with pain such as forced tapering, have blocked Dawn from accessing the medications. “The policy environment we’re in doesn’t embrace the idea of making patients pain-free,” she says.

Her pain management method right now involves pacing herself and planning around predictable pain. Setting boundaries is a key tool.

Dawn always envisioned children in her future, and having to give up on that dream has been one of the most difficult aspects of her chronic pain journey.

“I believe that without chronic pain, I’d be a mother of two who works full time,” Dawn says. “I am a very warm and affectionate person. For me, being a good mother would mean kids sitting on my lap, riding on my hip, and staying close, but I can’t always have someone touching me. And I wouldn’t want my kids to ever wonder if I love them.”

She notes that earlier, better treatments for her AS and better access to care may have changed this decision, but adds, “It doesn’t matter now. I don’t trust my body to allow me to be the mother I want to be.”

Instead, she regularly serves as the auntie, sister, and guardian angel for thousands who attend her popular Twitter chat, #SpoonieChat. Dawn created this gathering space in 2013 for “Spoonies”—those who relate to Christine Miserandino’s Spoon Theory, a metaphor illustrating the difference in energy levels and limitations when living with a chronic illness or disability. The idea is that each person has a certain number of spoons, which represent the amount of physical and mental effort they can expend on the activities of the day. People with chronic conditions start the day off with far fewer spoons than everyone else.

Dawn sees her role as helping folks learn how to thrive with disability. Given the amount of incorrect information on health-focused social media, she pays extra attention to newer patients who may feel desperate or not understand how to critically evaluate online information.

Now, #SpoonieChat participants come from all backgrounds, including global patients seeking a diagnosis. Some chats are check-ins about how everyone is doing. Others are intentionally focused on specific topics, such as pacing yourself during the holidays.

Dawn also writes articles for AxialSpondyloarthritis.net, a Health Union website, sharing tips and tricks for managing life with chronic illness, from how to shop more easily to self-care strategies.

INEQUITIES IN CARE

Dawn has seen and experienced disparities throughout American health care, noting the sad reality that “those [who are members of marginalized or underserved communities] will have less quality in their care. And some of them will experience hostility, isolation, denial, unnecessary harm, and even death.”

Dawn says that even when her pain is severe, she wouldn’t go to the emergency room, often a fraught visit for those living with chronic pain: “I wouldn’t bother going unless I thought I was literally going to die.”

Over the past several years, more people have accepted that women can get AS. But the support for Black women specifically isn’t there, Dawn says.

As a tenacious activist and advocate, Dawn regularly calls attention to these issues, raising awareness of racial disparities in AS and helping reporters understand what patients face daily.

“What they desperately need is access to health care right now,” she shares.

FINDING MEANING IN BUTTERFLIES

Whether through her articles or on social media, one topic Dawn is known for addressing regularly is butterflies.

Dawn began to hand-raise butterflies in 2016, while she was trying to cope with the stress of caring for an uncle with dementia. She went outside one day to pick fennel and found a few caterpillars. “I brought them in to care for them, and it was magical,” she recalls. She began to research how to raise butterflies from eggs.

It isn’t an easy process. “Butterflies are just like the rest of us—they have very specific needs for food, shelter, and raising their young,” Dawn shares.

Despite her fatigue making tasks feel impossible at times, Dawn keeps doing what she always does—persisting. “Releasing each butterfly [I raise] lightens my heart and fills me with the hope that only watching nature continue can bring,” she says. 

She does this not only for her own joy, but also in tribute to both the #SpoonieChat and disability communities.

The butterflies carry deep meaning, she says: “Creating this beauty just for them is my resistance to what we’re all going through and a reminder that we all deserve some beauty in our lives.”