Monica Cipriani shares a powerful Lyme Hack from a caregiver’s perspective: trust your instincts and never ignore what your body is telling you—even when tests say otherwise.
- Trust Your Gut
- If something feels wrong, listen to that instinct.
- You know your body better than anyone else.
- Trusting yourself is a key part of advocating for your health.
- Don’t Rely Solely on Test Results
- A negative test does not always mean you are healthy.
- Lyme disease testing can be complex and sometimes inaccurate.
- Symptoms and lived experience matter just as much as lab results.
- Listen and Support Others
- For caregivers, listening is one of the most powerful tools.
- Validation and understanding can make a huge difference.
- Supporting someone through chronic illness requires empathy and patience.
Monica’s message is a reminder that healing starts with being heard—by yourself and by others—and that trusting your instincts can help guide you toward the care you need.
“A negative result is just a negative result—it doesn’t mean you don’t have an illness.” – Monica Cipriani
Watch Video:
This 2026 Lyme Hack was recorded during Tick Boot Camp’s coverage of the inaugural Stories That Heal: Author Series, where leaders, patients, caregivers, researchers, and advocates came together to advance awareness, education, and hope for the Lyme disease community.
Video Transcript:
Matt Sabatello, Co-Founder of Tick Boot Camp: Thank you again for joining us. For Lyme Disease Awareness Month, we do our annual Lyme Hackathon, where we ask people to provide tips and tricks to overcome chronic Lyme disease. Now, you’re a little bit different because you are what I’d call a caretaker for your mother who had Lyme disease, Carolann, who is in the book with me. I want to ask you, as an outsider who hasn’t suffered from Lyme directly, what would be your recommendation for Lyme patients or your “Lyme hack” to help our community?
Monica Cipriani: For people who are caregivers, my hack would be to listen. For people who are in the Lyme community—like you and my mother—it’s always going to be to trust your instincts and trust your gut. The biggest thing to remember is that a negative result—and these doctors love negative results—does not mean you don’t have an illness. It doesn’t mean anything. So, if you’re feeling something, if you’re struggling, and if you have that gut instinct, listen to it. A negative result is just a negative result.
Matt: Powerful advice. Thank you so much for sharing that perspective.
Monica: Thank you.
Explore more expert insights from our Lyme Hackathon series and discover how healing is possible with the right knowledge, support, and approach on our Lyme Hackathon page.
