How Cycling Changed Me

Dec 20, 2023

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“Spinning the wheels and escaping on the open road lets me work through everything, centers me, and is freeing.”

Name: Desireé M PeterkinAge: 44Hometown: Baltimore, MarylandOccupation: Special EducationTime Cycling: 20 yearsReason for Cycling: Before my diagnosis, cycling was primarily to stay in shape. After my diagnosis of Sjögren’s syndrome, cycling was all I wanted to do because I realized how therapeutic it was for me physically, mentally, and socially.

I always had bicycles growing up, and first got into road cycling in the spring of 1996 with my uncle, Nathaniel. He rode a lot and I thought it was so cool seeing him in his gear. After begging him to take me out for a long ride, he finally did and I’ll never forget how excited I was to complete such a challenging ride from the south shore of Long Island to the north shore.

Fast forward 20 some years later to 2011, and a friend re-introduced me to the cycling world. I showed up for a Saturday morning group ride with my mountain bike and went home with a used road bike that someone gifted me that same day. The bug had bit me all over again and I haven’t looked back.

At the beginning of my cycling journey in spring 2011, I rode about twice a week, and participated in regional rides like the Amish Country Bike Tour (my first century), MS 150, and some other local events.

However, a few years later, in 2016, my health drastically changed. It was in March 2016 that I noticed I was struggling on routes occasionally. Then on a group ride in August 2016, I felt terrible—I couldn’t see clearly and was sweating profusely. I knew something was wrong, so I got off my bike, and sat down on the curb exhausted. Shortly thereafter, I was diagnosed with an autoimmune disease, called Sjögren’s syndrome.

My manifestations of the disease are neurological—I have lesions on my brain, neck, and spinal column. I’m slightly weaker on my left side so I have to account for that when I ride and be strategic. As a result of my condition (before medications took effect), I struggled to do life’s basic things like speaking, walking, driving, and even getting basic chores done.

All I wanted was to get well enough to get back on my bike, and it was almost a year later in June 2017 that I was well enough to ride outside again.

My medical treatment plan has significantly helped me and includes infusions every six months. I also take daily medication, which has helped give me my life back.

Today, I’m able to do everything except run. The treatments don’t necessarily prevent as much as quell my symptoms a significant amount. My energy levels are mainly back to normal, but there are times when it drops due to fatigue, and I let it run its course. I also schedule regular appointments with my chiropractor, massage therapist, and acupuncturist to help me feel my best.

I work in special education, and my job is demanding, so cycling has become such an important outlet for me. On a day-to-day basis, I work with students who have social, emotional, and behavioral challenges and I help them manage and de-escalate. So at the end of my work day, I love to ride my bike.

Cycling allows me to release stress and makes me feel happy, even if I had a tough day at work. Spinning the wheels and escaping on the open road lets me work through everything, centers me, and is freeing.

Unfortunately, health struggles are no stranger to my family, as my mom’s younger siblings both had muscular dystrophy. I never saw my aunt walk, and I only saw my uncle walk with assistance here and there when I was younger. I ride because they weren’t able to.

In 2021, I also started riding with Team Artemis, a race team in the Washington D.C. area. The best part is the challenge of the group rides. In the beginning, I was always getting pushed and given tips. I became a better, stronger, faster rider because of the group, and I love the fitness, fun, and fellowship of my group. We spend so much time with each other on and off the bike. Today, I ride anywhere from three to five days a week, sometimes more.

Never in a million years did I think this would be my path but it is. I never said, “Why me?” I just said I need to and want to get better so that I can ride again. When I’m struggling, mainly when I’m climbing, I think of my family with each pedal stroke.

I want other cyclists to know that my cycling journey hasn’t been perfect and has had and still has its challenges. I know I’m not the only person cycling with what’s called an invisible disease—there are a lot of us out there. There are some days when I still struggle, and it’s because I’m just managing the ebbs and flows of living with Sjögrens.

My diagnosis has inspired me to share my journey and support and motivate others to fight through challenges. It doesn’t have to be cycling, but it’s important to just do something that gets you moving, thinking, and processing.

When you ride as much as I do, it’s important to do the little things to your bike for maintenance, because of the amount of time we spend on it. Keep it clean. Keep the maintenance up. A little TLC goes a long way.

You will need a professional mechanic at some point and like my friend/owner of Patapsco Bicycles, Donald Rucker says: Leave it to the professionals.

Journal what is going on with you. I keep track of my health in the notepad of my iPhone. When you talk to your doctor(s), don’t try to use medical terms. Be descriptive and then let them take it from there. Be your own advocate and see your medical care all the way through.

→ Specialized Aethos: This bike is lightweight, and has great handling. Plus, it’s performance driven and has a sleek design.

→ Garmin Edge 1030: The features are endless but what I enjoy the most is when I do solo rides, Garmin has a feature that will search for one-way or roundtrip routes, which takes the ease out finding places to ride.

→ Tifosi Optic Sunglasses: I randomly bought a pair of Tifosi sunglasses because they naturally transitioned, which was key for me because of lesions I have on my brain that affects my eyes and the sensitivity I have to sunlight/daylight. I have since purchased two more pairs of Tifosis and love them.

→ Shokz Headphones: I love listening to music when I ride. These headphones are comfortable, safe, stable and connect easily to my phone. I have two pairs.

We want to hear how cycling changed you! Send your story and submit your photos to us via this web form. We’ll pick one each week to highlight on the site.

Emily Shiffer is a freelance health and wellness writer living in Pennsylvania.

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