Q&A: More than lyme
For the past 15 years, Chloe O’Neill has fought the tick-born illness known as Lyme disease. She decided to ditch the status quo and craft a lifestyle that made her feel good, every day. She also founded More Than Lyme, an online community dedicated to enriching the lives of people with Lyme living all around the globe, through outdoor adventure and storytelling.
Words & Photos by Adam McKibben
It took about three years to figure out what was going on with me, and no one wanted to test me for Lyme. My mom was the main instigator, and when she finally got a Lyme test done, it came back positive.
By that time, it had already been in my system for quite a while, so one or two rounds of antibiotics didn’t get rid of it. We finally stabilized it and I could go back to school―I was in middle school at the time and behind in everything. I pushed it aside for the most part and thought, “Whatever, it’s not a big deal.” I thought I could live with it.
I was able to graduate high school, but as soon as I went to college I started having seizures. My vision was really bad, I couldn’t write, and I had a lot of anxiety and panic attacks. I ended up in the emergency room more than five times. I think it was the stress of going from high school to the real world. Lyme can go dormant for awhile if your immune system is doing well. With school and everything, it must have crashed.
After two years of living in the city, I decided that I really didn’t want to live there anymore. So in the span of two weeks, I broke up with my boyfriend, quit my job, bought a car, and moved to Bend.
I had visited a few times and loved it. I wanted to pick a place far enough from Seattle that it felt new and exciting. It’s been one of the best decisions I’ve ever made. I always end up feeling better mentally, and then I can handle what’s happening physically.
About a year after moving to Bend, I came up with the idea for More Than Lyme. I hadn’t told very many people there that I had Lyme, because most people either didn’t know what it was or thought I was crazy. I think I got to a bursting point because of that, so one night I was babysitting and the kid was asleep and I came up with this idea of More Than Lyme.
Solidarity Through Stories
I got the domain name, started the Instagram, and began writing blog posts. It started off as kind of an online diary for me, I wanted to share what was going on in my world and help people like me feel less crazy. I quickly realized that this process, which was helping me cope, was also benefitting other people. So I started sharing their stories and adventures as well.
Most of the More Than Lyme community is based in the U.S., but we have hubs in the Netherlands, Australia, Switzerland, even Iraq and South Africa. There are some from Russia, Thailand, and tons of places I would never think people would be reading it. I’ve had orders for our shirts from places that I have to double-check on the map.
I always feel really small when I’m outside, and that’s humbling because it puts my problems into perspective.
When I can, I’ll go for a hike, either a full day or camping. I always come back feeling like I’ve been reset. I love hiking by rivers, things with a lot of power and movement. I love anywhere that makes you feel small, especially when you’re in huge mountains. I realized that was an essential part of my healing process. Just as medicine was important, I needed time to get outside to reset. So every single day, even if it’s just a walk around the neighborhood, I do it.
I want people to feel comforted by what’s there. They may not have community where they are but they have one on there. More Than Lyme presents the faces of Lyme and their stories as a resource—so if someone who contributes also has a blog and raises awareness, that also becomes accessible and the network expands.
I want to encourage the Lyme community to get out and explore, even if it’s just a little bit. Because that’s something that really helped me. It’s easy to be scared of the outdoors because it’s a tick-borne disease. But it’s essential to get back out there, even in baby steps.
For more stories and adventures, head to www.morethanlyme.org.