I've Lived with Lyme for Decades, and This Is What It's Like

Editor's note: May is Lyme Awareness Month. To build awareness about the disease, which is always a threat when adventuring in tick territory, we asked Gretchen Bayless of ROAMERICA to share her experience. For more information about Lyme disease, treatment, and prevention, check out A Guide to Preventing Lyme Disease in the Great Outdoors and the LymeLight Foundation.

My childhood was seemingly defined by periods of wellness and illness. After having bouts of sickness in my early years, I was diagnosed with juvenile rheumatoid arthritis at 10 years old. Years of medications and treatments followed, all with little success or improvement. Periods of illness that left me bedridden were followed by days of freedom as I pursued high school sports and other outdoor activities.

It took 25 years, countless doctors and medications, and a determined partner to finally arrive at a diagnosis: Lyme disease. Lyme disease is an infection caused by bacteria transmitted through the bite of an infected tick. Though I wasn’t aware of it at the time (and neither were the majority of medical doctors), Lyme and tick-borne diseases are prevalent across the United States with reported cases in each of the 50 states. The infection is powerful and can spread to the joints, heart, and nervous system if left untreated.

The symptoms of the undiagnosed disease left me pretty much sedentary and unsociable for a good part of two decades. The soreness would come and go without rhyme or reason, so I was always on the lookout for the next bout of illness. It was very isolating, and when I met my partner, Taylor Hood, in 2010, I decided that I’d rather feel unwell and do something anyway than feel unwell and be in bed.

In the hospital for treatment during a particularly harsh bout of symptoms, including joint inflammation. Gretchen Bayless.

Activity was never the cause of my soreness. We leaned into the “dirtbag” lifestyle that Taylor was already into. We camped in the wilderness, doing all of the things that we both loved to do. It quickly became apparent, however, that when I wasn’t feeling well, our camping trips, surfing adventures, and hikes were more arduous and less fun.

A van was an easy fix. We wanted to be off the grid, but we needed that combo of mobility and comfort that only a van could provide. That first van changed our lives in more ways than one. On sick days, I could relax in comfort while Taylor explored the surrounding landscape. We were able to continue to enjoy the outdoor activities we both loved while adding a level of comfort that wasn’t possible when our only adventure vehicle was a Toyota Tacoma.

It was in this moment of our lives that we came up with the idea for ROAMERICA, helping people access the outdoors with the added comfort that a van brings to an outdoor adventure.

Ignorance is really important when you’re starting a business. All you see is the silver lining, not your struggles. Taylor and I moved into the city of Portland, Oregon, and quickly ramped up to 60- to 70-hour weeks to handle the demands of launching ROAMERICA while juggling my ongoing graphic design work.

This ROAMERICA journey has been unbelievably rewarding. During our second year of business, we rented a van to our first customer in a wheelchair. She and her partner said it was the best vacation because they saw and did so much, and the van made it so easy. We’ve had many customers with limitations since, and the van makes it much easier on them. Our labor of love has blossomed into a way for everyone to enjoy the outdoors.

But it didn’t solve my illness. I truly credit meeting Taylor as a turning point in my journey to diagnosis. Taylor found my courses of treatment—the myriad of diagnoses I was given and series of medications I took over the years—confusing and illogical. He believes that there’s an answer for everything if you look deep enough. So he started to dig.

Taylor stumbled on Lyme disease during a series of internet searches about 4 years ago, and recently, I was officially diagnosed with Lyme. After years of being misdiagnosed, of being told that my illness was in my head, I was officially given an explanation of my lifelong symptoms.

While dealing with symptoms of Lyme disease, I’ve had two children. The impact of the disease really hit home when Taylor and I were trying for our first. A round of antibiotics prepared my body for a pregnancy, and they wreaked havoc—my brain felt like it was going to explode with craziness, as Lyme can affect the central nervous system in long-term, untreated cases. But they worked, and by December of 2016, I was pregnant with our oldest daughter, Piper.

My symptoms subsided during the pregnancy, and it was the best I had felt in years, but Piper’s birth brought the symptoms back in full force. I tried a new IV stem cell treatment that seemed to be working, but the physical, mental, and emotional side effects were too much. I stopped breastfeeding and started again on antibiotics and Prednisone, a steroid to control inflammation.

A healthy Bayless family with its newest addition. Gretchen Bayless.

After the birth of our second child in May, Taylor asked me if natural childbirth was the worst pain I’ve ever felt. I responded without hesitation: absolutely not. The Herxheimer reaction to treating the Lyme disease—a reaction that happens when the Lyme bacteria are actively being attacked and causes a worsening of Lyme symptoms, including fatigue, brain fog, muscle and nerve pain, and chills and sweats—was without a doubt the worst pain that I’ve ever felt.

But I’ve learned that it’s okay to hurt, and it’s necessary to process that in a healthy way. My outlet is the outdoors and work. Meeting customers, learning about their stories, and hearing about their adventures motivates and inspires me to persevere. We all have a story, and so far, mine has had a pretty good arc.

A diagnosis doesn’t mean a cure. Lyme is a chronic illness and something that I will likely manage for the rest of my life. Therefore, in addition to opening up outdoor access, we are also committed to getting people out there safely and passing on knowledge and Lyme disease prevention techniques to help others avoid the pain of Lyme.