Lilly Stairs Conquered Disease Like A Boss. Now She’ll Help Others Do It Too.

In the United States, six in 10 people are living with a chronic disease. In the summer after her first year at Northeastern University, Lilly Stairs became one of them. The 19-year-old was diagnosed with two chronic illnesses in a six-month timespan—events that would lead her to become a staunch advocate for herself and others facing similar diagnoses.  

For Stairs, it began as knee pain. But it progressed quickly and spread throughout her body—until one morning she simply couldn’t get up, Stairs recalls. Her mother helped her get dressed and eat, and after a number of different doctors appointments, Stairs was diagnosed with psoriatic arthritis. 

“I was devastated and confused,” Stairs remembers of those first few weeks. “It was really a shock—I had come off my freshman year at Northeastern on cloud nine, now here I was bedridden with total-body arthritis. I had to fight just to get back to school.” 

Six months later, Stairs was hospitalized again, this time with new symptoms. Doctors found bleeding ulcers in her small intestine, and soon, she had another diagnosis: Crohn’s disease. 

“Within six months, I was given diagnoses of two chronic illnesses that I would live with for the rest of my life,” Stairs says. So, she did what anyone would do, when presented with a mysterious challenge and an internet connection: She Googled it. 

Stairs found that millions of Americans are living with autoimmune disorders. The National Institute of Environmental Health Sciences puts the figure at 24 million, while the American Autoimmune Related Diseases Association (for which Stairs currently chairs the Board of Directors) estimates that it’s closer to 50 million. 

“Autoimmune disorder” is an umbrella term for more than 100 diseases, many of which occur in clusters. The list includes relatively well-known disorders such as Stairs’s diagnoses of psoriatic arthritis and Crohn’s disease, as well as lupus, fibromyalgia, and chronic lyme disease, in addition to many disorders that only affect a small percentage of people. In each case, immune cells, designed to attack invading viruses or bacteria, instead mistakenly attack the body—damaging the very cells they’re meant to protect.

“Most people know someone who has an autoimmune disorder,” Stairs says she realized from her hospital bed. “At that moment, I became an advocate.”

Now 31, Stairs has been in medically controlled remission for eight years, a fact which only means more time to advocate for others. Chief among these efforts is a new organization, the Chronic Boss Collective, that Stairs created to bring together other ambitious, driven women living with chronic illnesses. 

“Having been in this advocacy space for a decade now, I’ve always felt like there wasn’t a space for me. I’m an ambitious career woman who is also living with multiple chronic conditions, and there’s never been a space that holds both of those things to be true,” Stairs says. 

The Chronic Boss Collective is designed to fill that space. The group, which will launch in early 2024, is emphatically not a support group, Stairs says. Rather, it’s a membership-based networking organization for business-minded women with chronic conditions. 

“There’s this magic when you take somebody who has been diagnosed with a chronic condition or many chronic conditions and let them lead. These are women who have gone through hell, but they’re choosing ambition; they want to make an impact, and they’re driven in their career. It’s a special type of person,” Stairs says. “It’s my belief that, if I can create a space for these women to connect, collaborate, and grow together, we can really move mountains.”

For this innovative work, Stairs was recognized with one of the 2023 Women Who Empower Innovator Awards.

This year, organizers behind Northeastern’s Women Who Empower recognized 28 innovators with financial and entrepreneurial support. The winners received a portion of the organization’s largest total prize ever—$500,000—as well as companionship with a global network of women who are creating, running, and iterating on ventures across myriad disciplines and business sectors. To date, Women Who Empower has recognized 69 entrepreneurs with Innovator Awards over the course of three years, and has dispersed more than $820,000 to three cohorts of incisive, creative entrepreneurs.

Long before Northeastern and Stairs network of like-minded women, and before she became a sought-after speaker and advocate, she was just a teenager who had to radically reorganize her life. Stairs fought for her own care, and, as she slowly regained her strength, fought just as hard for others. 

She returned to campus and, in 2014, organized a campaign called “50 Cents for 50 Million” to raise money for the American Autoimmune Related Diseases Association. Within two years—while finishing up her studies—Stairs raised $20,000 for the organization. She graduated in 2015 with a bachelor’s degree in communications, and the following year joined the board of the autoimmune association. She served as its interim CEO for a period in 2021, and eventually rose to chair of the board, a position she’s held since early 2022. Around that time, Stairs also created a thriving patient advocacy consultancy business called Patient Authentic.

That Stairs’s advocacy work has been so impactful is no surprise to Greg Goodale, a former lawyer, lobbyist, and Congressional aide who taught Stairs while she was at Northeastern. 

“I used to work in Washington, D.C., and I was a lawyer, so I know advocacy. Lilly just has the talent for it,” says Goodale, who retired in 2022 from his position as associate professor in communication studies at Northeastern. “She understands when something’s not right, and she fights like the dickens to make sure it is right.”

Stairs took, aced, and in short order was hired as a teaching assistant for an advocacy writing class Goodale taught. “She’s still, to this day, the youngest TA I ever had—and the only person to TA for me twice—because she’s just that good,” he says. 

Stairs sees her work as all the more necessary now, as thousands of people with long-haul COVID-19 symptoms join the growing community of people with chronic conditions. 

“These are people who are experiencing living with a chronic condition for the first time in their lives,” she says. “They’re going to need support, and they’re going to need people to advocate for them.” 

For those people, many of whom will likely follow in her footsteps and turn to Google for answers, Stairs’s goal is that the Chronic Boss Collective becomes one of the many results that come up. 

“I want as many women as possible to feel empowered and confident that they can have an incredible career while living with their chronic condition,” she says. “You go through so many questions in those first days, and when women are diagnosed, I want them to see other women who are thriving, making money, and crushing it, in addition to everything else they’ll find.”