Turning Pain into Purpose: How Project Lyme’s Emerging Leaders Fight for Survival and Hope

Lyme disease is a condition that often comes with a heavy burden—both physically and emotionally. For many survivors, the journey is marked by disbelief from those around them, struggles with the medical community, and an unrelenting fight for proper care and recognition.

In a recent episode of the Love, Hope, Lyme podcast, I spoke with Ashley Baker and Maria Johnson, members of the Emerging Leaders Board for Project Lyme, to discuss their personal battles with Lyme disease and their roles in advocacy. Their stories not only highlight the harsh realities of living with Lyme but also offer hope and guidance for others on similar paths.

From Patients to Advocates: The Stories of Ashley and Maria

Ashley Baker, a Lyme patient, advocate, and musician, has been with Project Lyme for several years and currently serves as the chair of the Emerging Leaders Board. Her Lyme journey began unexpectedly in 2018—not from a tick bite or the classic bullseye rash but following a knee injury that triggered severe symptoms. After nearly a year of misdiagnoses, Ashley finally received confirmation of Lyme infection. However, the battle had just begun. “I ended up losing both of my jobs at the age of 23 and had to completely start over,” she shared. The most devastating part, however, was the disbelief she encountered from family, friends, and even medical professionals.

The skepticism surrounding her illness was so pervasive that it pushed Ashley to advocate more fiercely for herself and others. Her journey was documented in the film I’m Not Crazy, I’m Sick, released in 2023. While the documentary brought some awareness, Ashley admits that many in her life still refuse to acknowledge the reality of her illness. “Not everybody has watched the film… I still have those people who look at me a little sideways,” she revealed.

Maria Johnson, a graphic designer from Philadelphia, found herself in a similar struggle. Symptoms started when she was 16, but it wasn’t until nearly a decade later that she was diagnosed with Lyme disease. Even then, Maria couldn’t believe it. “I actually did not believe it for two years,” she said, reflecting on the shock of discovering that her chronic cough and gastrointestinal issues were symptoms of Lyme. As antibiotics failed to deliver results, Maria explored alternative treatments and eventually joined Project Lyme’s Emerging Leaders Board in 2021.

Both women’s stories emphasize a harsh truth: even as patients battle debilitating symptoms, they often face an equally exhausting fight for validation. Many Lyme survivors are met with skepticism, even from loved ones, making advocacy not just a choice but a necessity.

The Relentless Fight for Recognition and Treatment

A recurring theme in the conversation was the profound impact of not being believed. As Ashley explained, “It causes a lot of self-doubt in your own mind, especially having friends and family who don’t believe that you’re really sick.” Maria echoed this sentiment, recounting her experience of being dismissed by colleagues at a medical company who suggested that a simple change in diet could solve her issues. Disbelief can be as damaging as the disease itself, leading many patients to question their reality.

This struggle for recognition is part of what drives Ashley and Maria in their advocacy work with Project Lyme. Founded with the mission to eradicate Lyme disease, Project Lyme also focuses on spreading awareness and providing resources for patients. For Ashley, becoming the chair of the Emerging Leaders Board was a natural extension of her advocacy efforts. “Once you see the truth of chronic Lyme… you can’t unsee it,” she said, describing her work as her life’s passion.

Finding Strength in Advocacy: Advice for Lyme Survivors

Despite the overwhelming challenges, both women have found purpose and strength in advocacy. Maria’s advice to other Lyme survivors is to build a support team that genuinely listens. “Find a team that supports you and your needs and listens to you, and don’t take no for an answer,” she urged. For her, a combination of treatments, including low-dose naltrexone, sauna therapy, and herbs, made a significant difference. The key, she believes, is a holistic approach—treating Lyme from multiple angles rather than relying on a single solution.

Ashley, meanwhile, emphasized the importance of setting boundaries. For Lyme patients, she explained, the temptation to maintain a pre-Lyme lifestyle can lead to severe flare-ups. Learning to say no and prioritizing health is vital. “When you’re a chronic Lyme patient, you try to keep up with your old life and stay busy… but you have to learn sometimes you have to say no,” she advised.

Ashley also highlighted the impact of IVIG (intravenous immunoglobulin) on her treatment journey. Often referred to as “liquid gold,” IVIG was a turning point in her recovery, allowing her to regain some semblance of normalcy. However, insurance complications forced her to stop the treatment—a reminder of the bureaucratic battles Lyme patients face in addition to their health struggles.

The Mental Health Toll of Lyme Disease

The emotional toll of Lyme disease was another significant point of discussion. Ashley spoke candidly about the isolation and depression that many Lyme patients endure. “Suicide is a big problem in the Lyme disease community,” she stated, emphasizing the need for community support and advocacy. Maria concurred, highlighting the mental health challenges that often accompany the physical symptoms of Lyme.

Both women stressed the importance of community—whether through organizations like Project Lyme or online support groups. As Fred Diamond pointed out, the sheer number of Lyme support groups on platforms like Facebook is a testament to the scale of the crisis. The support and solidarity these groups provide can be lifesaving, offering a sense of belonging to those battling an often-invisible disease.

A Call to Action: The Future of Lyme Advocacy

Looking ahead, Ashley and Maria are determined to continue their advocacy. Ashley hinted at plans for a large-scale music festival at Capitol Hill in collaboration with the Center for Lyme Action, scheduled for 2025. For her, advocacy is about reaching people in any way possible—whether through art, politics, or community events. “There’s really a niche for everyone in the advocacy space,” she said.

Maria’s focus, meanwhile, is on using her design skills to spread awareness. By creating engaging social media content, she aims to educate the public about Lyme disease’s complexities and the urgent need for better diagnosis and treatment options.

Both women’s journeys serve as powerful reminders that advocacy is not just about awareness—it’s about survival. For Lyme survivors, being believed, finding the right treatment, and connecting with others who understand can mean the difference between despair and hope.
The conversation closed with a message of resilience and community. “Don’t be afraid to try something new in terms of advocating,” Ashley urged. For Maria, the key takeaway was the importance of education and persistence. “Always educate yourself… and always just keep fighting,” she advised.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. PM Fred on Facebook or LinkedIn for your copy.