When Eden’s mother, Kelly, needed a quick change of clothing while at dialysis, Eden’s husband, Markus, bought this dress for her. Knowing that Markus had simply grabbed the first thing he found at the store, Kelly later joked to Eden that her son-in-law must hate her—but in truth, she loved the outfit so much that Eden bought one to match.
Patient, Caregiver, Participant, Researcher: A Multidimensional Existence
By Grayson Schultz
When Eden Buell speaks about chronic pain, health and research equity, or recovery, she doesn’t just speak as a researcher. She speaks as someone who has lived it.
Eden, 36, is a project coordinator at the Lighthouse Institute, the research division of Chestnut Health Systems—a nonprofit provider offering integrated substance use, mental health, and primary care services. She’s a Bloomberg Fellow pursuing her master of public health at Johns Hopkins University. And she’s an outspoken advocate for dignity and justice in pain care. Her path to this convergence has been shaped by intense personal trials and driven by a fierce determination to build a better future for others.
She was a child when she first experienced chronic pain—and medical gaslighting.
Her severe, unexplained abdominal pain was eventually diagnosed as a bicornuate uterus, a congenital condition resulting in an irregularly shaped uterus, and endometriosis, a painful condition that causes tissue similar to uterine lining to grow outside the uterus. But before being diagnosed, she was labeled as “drug-seeking”—as an 11-year-old in excruciating pain.
Even after her initial diagnosis and the first of several surgeries, physicians hesitated to act after she reported continued pain; it was her mother, Kelly Rivera, who pushed them to take Eden’s pain seriously.
In her 20s, she was also diagnosed with systemic lupus erythematosus—the most common form of lupus, causing joint and muscle pain, skin rashes, arthritis, inflammation, fatigue, and more—but not before her escalating full-body pain and fatigue had been brushed aside multiple times.
“There’s so many different times that I’ve had folks just kind of dismiss my pain,” she recalls.
HER TURN TO ADVOCATE
Eden, who lives in Northville, Michigan, but grew up in the Bronx, never forgot how Kelly’s advocacy made all the difference for her as a child whose doctors dismissed her pain. Years later, when her mom needed someone to speak up for her, Eden didn’t hesitate.
Kelly—who had kidney disease, heart disease, and diabetes, went through the amputations of both legs, and was on dialysis—struggled financially and faced daily challenges accessing care and assistance. After her second amputation, she came to live with Eden and her now-husband, Markus.
During her five years as Kelly’s caregiver until she died, surrounded by family, in 2021, Eden managed medications, navigated inaccessible transportation, performed wound care, and confronted endless systemic failures.
“I watched what real health disparities looked like in real time,” Eden reflects. “It wasn’t just about access. It was about dignity.”
INCREASING EQUITY IN RESEARCH
While personally experiencing the realities of health disparities, Eden was also learning about them through an academic lens. After having dropped out of school in ninth grade amidst challenges faced by those around her with substance use disorder and homelessness, she worked to earn her GED at 20 and continued her academic journey in public health.
Her experiences as a person living with pain have deeply shaped her role as a researcher. In 2018, desperate for relief, she enrolled in a clinical trial for an endometriosis medication—and the treatment helped. But then a staff member called her “Subject number [X]”—adding, “Well, that’s how we refer to the patients here.”
After having spent a year contributing to the trial, she felt dehumanized. “I’m Eden,” she recalls saying. “I’m an individual, and I would like to leave the study.”
That moment could have turned her away from research entirely. Instead, combined with her caregiving experiences, it fueled a new mission: taking a stand for more equitable pain research.
She has been involved with several projects through the National Institutes of Health (NIH) Helping to End Addiction Long-term (HEAL) Initiative—driving research priorities, connecting researchers to everyday individuals, mentoring pain researchers as a lived experience expert, and being invited to share her lived pain experience and research training at a pain symposium and health equity workshop.
“It’s very new, having people with lived experience at the table considered experts, and it’s not something that a lot of folks are used to,” she says.
At the Lighthouse Institute, Eden serves as a project coordinator whose work is profoundly guided by community board members with lived experience. Her work bridges the pain and substance use disorder fields, two systems that have significant overlap yet are often siloed. She sees both worlds trying to improve, and believes pain research can learn much from the community engagement practices in addiction science.
Regarding the importance of research partnerships with people with lived experience, “I never call it top-down, and I never call it bottom-up—it’s expanding from the middle,” Eden explains. “These people aren’t just at the bottom. They’re living it; they’re experts in their own right.”
PAVING A BETTER PATH
Today, Eden’s chronic pain continues to affect every area of her life. Her husband, Markus, has been her best friend and her rock—supporting her through flares and helping her “unstiffen like the Tin Man” when her lupus causes her to wake up with painful immobility.
She has tried countless medications; while some of them have helped, many have had harsh side effects, including putting her through early menopause twice and causing her to lose her hair.
Yet she keeps showing up—waking up each day, managing her own pain, pushing for health equity, and taking individuals’ insights to heart as experts of their lived experiences.
“My pain conditions are always with me,” Eden says. “Although they have negatively altered my life, they’ve also given me a voice and allowed me to advocate for those who need it.”
She dreams of earning a PhD in public health to improve outcomes in addiction science, and to change national policy around the inclusion of lived experience in pain research and the dissemination of research findings to those affected by them.
Though her story includes hardship, it is also full of love—for her community, for science, and most especially for her mother. Before her death from calciphylaxis—a rare and painful complication of kidney disease and dialysis—Kelly wrote a poem titled “Unreliable” that Eden carries with her, fueling her work. In it, Kelly challenges health care professionals to see her not as a case or diagnosis, but as a whole person whose experience is real.
Eden has made that call to action her mission. And every step she takes—through pain, through research, through memory—brings us all closer to a more humane, equitable future in health care.