For most illnesses, you rarely hear the word “mentor.” When you get a broken ankle, you don’t require a mentor. But for Lyme survivors and their families, mentorship can be life-changing.
When I was writing my book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I was unaware of how difficult it was for Lyme survivors to get what they needed such as support, proper medical treatment, and even empathy from loved ones.
On this week’s Love, Hope, Lyme podcast, I was thrilled to have Global Lyme Alliance (GLA), Education and Grants Manager Kristen Harris discuss how they help Lyme survivors solve those problems.
She leads the organization’s Peer-to-Peer Mentorship Program, connecting patients and caregivers with others who have walked the same winding road. Her own story, which spans more than two decades of symptoms, misdiagnosis, and perseverance, explains why this work matters so deeply.
A Lifetime Shaped by Lyme
Kristen traces her illness back to a tick bite when she was just eight years old in Westchester County, New York. Her mother, aware of the growing concerns about Lyme disease in nearby Connecticut, pushed for testing and early treatment.
“Unfortunately, back in the ’90s, there was very little knowledge,” Kristen recalled. “I was fortunate enough to get some antibiotics at the time, but not long enough to prevent long-term consequences.”
Symptoms didn’t surface until high school, when she began to struggle with neurological issues and fatigue. “I started doing poorly in school and had joint pain, aches and pains that a normal teenager doesn’t experience, crushing fatigue, couldn’t get out of bed kind of stuff,” she said.
A chiropractor treating her for aches and pains suggested she might have Lyme. That conversation set her on a new path.
“Later I saw a Lyme-literate doctor and was diagnosed with Lyme and Babesiosis, probably around 1998.”
Treatment brought a long period of remission, lasting from 2000 until 2014. But the illness returned with vengeance. By 2017, Kristen was virtually bedridden and on disability.
“It hit me really hard,” she said. “Neurological symptoms, chronic pain, fatigue, joint swelling, migraines, weird rashes, reactions to food. I was disabled from 2017 to 2020 and have been going through the healing journey ever since.”
Her experience mirrors that of countless Lyme survivors: early misdiagnosis, temporary remission, relapse, and the exhausting cycle of searching for answers.
Why Mentorship Matters
Kristen’s professional life now centers on giving others what she once desperately needed: support, understanding, and hope. Through GLA’s mentorship program, patients and caregivers are paired with mentors who have personal experience with Lyme.
“The program’s meant to inspire people in the Lyme and tick-borne illness community,” Kristen explained. “It’s more of an emotional support, because we are not doctors. We can’t diagnose or treat anyone. But our team of mentors are all people that were patients at one point or currently are suffering with Lyme, but they’re in a place where they’ve had the experience.”
For many patients, talking to someone who understands the confusing, isolating nature of the illness is profoundly validating. “People say they can’t believe they’re talking to someone who knows what I’ve been through. That is why this program is so important,” Kristen said.
Importantly, the program is not only for patients but also for caregivers and family members. “Being the primary support for patients is very, very difficult,” Kristen noted. “Being able to connect with other spouses, parents, family members that are supporting someone struggling with the illness is a great outlet for sharing emotions and helping those people find their way and lighten the load.”
Boundaries, Flexibility, and Training
One of the program’s strengths is its structure. Mentors go through interviews, background checks, and orientation to ensure they’re prepared. “We want to vet the correct people and make sure people are in a good head space to be a mentor,” Kristen said. “It can be a very heavy time to bring up an illness and to walk someone through it.”
The program also uses a database to match mentors with mentees based on diagnosis, symptoms, and co-infections. “We want our mentors to match with mentees that they have things in common with,” Kristen explained.
Flexibility is key. While some patients prefer weekly phone calls, others simply want the reassurance of a quick text. “Sometimes we have peers that are very, very sick and they don’t want an hour phone call once a week,” Kristen said. “They just want to check in or shoot someone a text or say, ‘I’m not feeling good,’ and have a quick interaction.”
Also, the program is free. “As we know, a lot of Lyme treatments are expensive,” Kristen said. “People may not have extra money to seek that kind of mentorship, but everything is no charge.”
The Unique Burden of Lyme
Why does Lyme disease in particular call for a mentorship model? Kristen believes it comes down to misdiagnosis, stigma, and the long, uncertain road to healing.
“It’s very difficult for Lyme patients because we are often misdiagnosed or medically gaslit or just not understood by medical professionals,” she said. “Also, lack of education and inaccurate testing. Sometimes people may go to their provider and explain all these symptoms and it’s so hard to diagnose them.”
Unlike other conditions that follow a predictable treatment path, Lyme often leaves patients in limbo, fighting to be heard and struggling to navigate conflicting medical advice. “It’s not 1, 2, 3, and you’re cured,” Kristen said. “It can often be a long process and a long treatment. It’s important to have a mentor or support for those individuals, someone that’s been there.”
“Lyme can be so isolating and debilitating,” Kristen added. “Someone being in your corner is very important.”
Lessons Learned
Leading the mentorship program has given Kristen new insight into the scale of the Lyme crisis. “Personally, I thought I knew a lot about Lyme because of my entire life,” she said. “But now working in this space, seeing the amount of people that reach out daily is really eye-opening, very difficult to see.”
What she’s learned is that the demand for support is growing, not shrinking.
“Unfortunately, Lyme is not going away anytime soon, and people are still getting sick all around the world,” Kristen reflected. “We really need more mentors, more support, the community to stick together as well.”
When asked about her hopes for the Lyme community, Kristen pointed to two critical areas: diagnostics and funding. “The biggest challenges are what the patients face. That starts with accurate diagnostics so people can get tested and treated early,” she said. “Lots of diagnostics aren’t accurate and may not catch an older infection or give negative test results when someone actually does have a tick-borne illness.”
“We need to understand these complex illnesses, and that starts with the science and the research.”
A Message of Hope
Despite the difficulties, Kristen emphasized the hope that mentorship provides. The program not only supports patients but also creates lasting human connections.
Her final message is simple: no one should face Lyme alone.
“If anybody’s listening and they are seeking support, please visit our website, gla.org. Under the patient tab is where you’ll find our patient resources. We have our peer-to-peer program, we also have a tool to find a healthcare provider, and wonderful other resources on our website.”
For Lyme survivors, caregivers, and families, the GLA’s mentorship program is more than a service, it’s a lifeline. As Kristen’s own journey proves, healing is not only about treatment protocols and medications. It’s also about the power of being heard, believed, and guided by someone who has walked the same path.
Click here to listen to all episodes of the Love, Hope, Lyme Podcast.
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