What I Wish You Knew About Lyme: Real Voices from the People Who Live It
- samantha sloves
- May 27
- 6 min read
From patients to parents, founders to advocates—this is what they want the world to know.
Introduction
Every May, we shine a light on Lyme disease, hoping to convey the reality of living with it. It's more than just fatigue or joint pain; it's the isolation of being misunderstood, the frustration of misdiagnoses, and the resilience required to keep going.
This year, I reached out to fellow warriors—patients, advocates, and professionals—asking:
“What’s something you wish people without Lyme understood?”
Their responses are raw, heartfelt, and illuminating. I invite you to read their words, feel their experiences, and share in our collective truth.
What We Wish You Knew
Real words. Real pain. Real strength.
These are the voices of Lyme.
Each one a glimpse into the truth that so often goes unseen, unheard, or dismissed.
Full Responses
Below are the full responses from each contributor—unfiltered and in their own words.
These are not just quotes. These are truths.
Words from people who’ve lived it, fought it, and still show up.
You may not be able to feel what they’ve felt—but you can listen.
Matt Sabatello & Rich Johannesen – Tick Boot Camp
When Lyme becomes your life—not just a phase of it.
"We wish people understood that Lyme disease isn’t always short-lived or easily treated. For many, it becomes a complex, long-term illness that persists well beyond the initial infection. It can affect every aspect of life—physically, mentally, and emotionally—requiring years of medical care, lifestyle changes, and resilience to navigate a path toward healing."
Nicole Bell – Chief Executive Officer, Galaxy Diagnostics
A diagnostic failure that changed everything for her family.
"I wish that everybody understood that the test you're going to get from your doctor when you go to your primary care for Lyme disease is only 40–60% accurate.
Because in my husband’s case, we went to the doctor, I had a high suspicion of Lyme disease, and that test led us down a whole other journey because it came back negative. If I had known at the time that a positive means you are likely infected—but a negative is just a sign you should keep digging—I would have handled his care very differently.
There are all sorts of things that need to happen with Lyme. But until we have an accurate diagnostic—and until people understand and push harder to get that diagnostic—people are going to suffer."
Lisa-Jae Eggert – Founder of 3 Moms Organics
When Lyme takes down your entire family—and you’re the one left to rebuild.
"Tick-borne diseases nearly destroyed my life.
What started as fatigue, mysterious pain, and brain fog, spiraled into more than 20 years of misdiagnoses. I saw over 50 doctors and was told I had early-onset Alzheimer’s, MS, fibromyalgia, and lupus among many other things. Each misdiagnosis brought more confusion, suffering, and hopelessness. But the worst part? It wasn’t just me.
My daughter was born with Lyme. Did you know it can be passed in utero? I didn’t—and neither did my doctors. She came into this world battling heart and bladder issues along with three autoimmune diseases. Watching her struggle was even harder than my own battle. My husband was also bitten, spending eight weeks in the hospital with no concrete diagnosis, but he had to relearn how to walk and talk all over again. Tick-borne diseases had attacked my entire family.
Lyme disease doesn't just attack your body—it can devastate your mind as well. Lyme can cause a range of mental health issues, including memory loss, mood disorders, and myriad psychiatric conditions, highlighting an urgent need for comprehensive care and far better testing.
I was finally diagnosed with neuro-Lyme, babesiosis, and Ehrlichia at Columbia’s Lyme & Tick-Borne Disease Research Center—only to be told, “We diagnose, but we do not treat.”Eventually, I found a Lyme-literate doctor in Mt. Kisco, NY, who saved my life but at a steep cost: We had to pay out-of-pocket for years of treatment for my entire family. I personally endured over a year on oral antibiotics and malaria medications including a surgically implanted PICC line for my life-saving Rocephin.
Through it all, I learned that traditional repellents—full of neurotoxins—only made my symptoms worse. That’s why I created TickWise... What started as a personal fight for my family's survival has grown into a mission to protect others from the nightmare my family endured."
Royale Scuderi – Executive Director, CNY Lyme & Tick-Borne Disease Alliance
The pain you can’t see is often the pain that needs the most compassion.
"I wish people without Lyme understood that the suffering is most often invisible. We may look healthy and well, but have intense pain and constant fatigue. We may need to miss social functions to go to bed or we may need extra time to think and respond, because of brain fog or neurological complications. What we need most is compassion, understanding and patience, because we are indeed suffering."
Kevin Williams – Co-Founder, Ravel Health
Lyme doesn’t just hurt—it demands a level of strength no one talks about.
"The term Lyme Warrior is used a lot in our community. But the thing people without Lyme typically don't understand is just how tough these patients are. A recent NIH survey reported that Lyme patients' quality of life was worse than almost any other chronic disease, including congestive heart failure, stroke, heart attack, diabetes, and MS. I wish people knew how truly strong and badass this community is!"
Jaime Intile – Co-Founder, Ravel Health
It’s not just a tick bite. It’s years of being dismissed and fighting to be believed.
"Lyme is not just about the tick bite or the initial infection. For many, it’s years of misdiagnosis, isolation and invisible suffering. These patients are navigating a broken system while fighting to regain their health—and they deserve empathy, respect, and real support. That’s what we’re working toward every day at Ravel."
Payton Bradsky – Co-Founder, LymeLess Health
The hardest part isn’t the illness—it’s protecting your energy while staying silent.
"Managing Lyme+ can be as much a battle with yourself as a battle with the disease. Most of the time, you can't do as much as you used to be able to do because overdoing it can really set you back, so you're responsible for putting limits on yourself and deciding how much you want to share with other people about what you're going through. For me, I struggled with setting those limits and sharing my diagnosis with other people because I didn't want to 'give it power', so to speak. It's very hard to navigate and can be really discouraging at times."
Carter Bradsky – Co-Founder, LymeLess Health
Healing feels like a race with no finish line.
"Treating Lyme+ is like being told to sprint when the distance is unknown."
Kris Newby – Award-Winning Medical Science Writer & Author of Bitten
500,000 new cases a year—and still no new treatments in decades.
"With 500K new cases per year and no new treatment studies in 20+ years, it's time for tick disease researchers with new ideas and more funding."
Olivia Abrams – CEO of TiCK MiTT
When protection is the only tool we have left.
"I wish more people knew how difficult Lyme is to diagnose—so tick protection is the most important thing you can do."
Kathryn McGinnis – Wholesome Roots Occupational Therapy
Lyme hides, mimics, deceives—and often takes everything before you know it.
"Lyme attacks every system and hides, mimics, deceives… making it hard to treat until it renders you completely debilitated. And even though the disease may impact every aspect of life, individuals with Lyme Disease are the strongest people I have ever met in my life."
Jesse Ruben – Co-Founder of GenerationLyme
Lyme doesn’t just hurt—it steals the joy from what you love most.
"Lyme disease is a systematic illness, not a symptomatic one. At any given time it could attack any system of your body, seemingly randomly. It has the ability to take ANYTHING in your life that brings you joy—and rob you of that thing."
From Samantha, Founder of MyLymeCoach
I didn’t get to ease into adulthood—I was thrust into survival mode. Lyme took so much from me: milestones, independence, a sense of safety. But it also ignited a fire within me to fight, to advocate, and to support others on this arduous journey.
Creating MyLymeCoach was my way of turning pain into purpose. If this compilation helps even one person feel seen, heard, and understood, then it's a step toward healing—not just for individuals, but for our entire community.
If someone shared this with you, it's because they trust you to listen with an open heart. Please, take a moment to read, reflect, and understand.
You don't need to have Lyme to be part of this movement.
You just need to believe us.
And if you're reading this with tears in your eyes because it's your story too—
I see you. I believe you. And you're not alone.
Share this with others. Let’s break the silence and build a world where those with Lyme are met with empathy, not skepticism.
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