December 1, 2017

How Chronic Lyme Disease Changed My Life

December 1, 2017

How Chronic Lyme Disease Changed My Life

by Skye Cowie

How a professional athlete at the start of her career was sidelined by chronic Lyme disease

People always say that life can change in a blink of an eye, but I never truly understood that quote until it happened to me. One year ago today, December 1, 2016—after six years of searching for a diagnosis—I was diagnosed with chronic Lyme disease. I had been bitten by a black-legged deer tick when I was 12. For those reading this who don’t know me, I’m a 19-year-old professional athlete from North Carolina. I started playing soccer when I was 5 years old and loved every minute of it. Unfortunately, by age 13, I had to give it up due to chronic pain.

The diagnosis was a pivotal turning point for me, since I was lucky enough to discover a new sport called freestyle soccer. This was something I was able to practice on my own time, when I was physically able, without feeling pressure from others. My career in freestyle soccer has since presented me with amazing opportunities and I now have over 70,000 Instagram followers.

I’ve had amazing experiences working with brands like Adidas, Samsung, Canon, Puma, and even former First Lady Michelle Obama.  Due to my social media presence, I came to feel a certain obligation to speak out about my seemingly invisible illness, and to shed some light on what has, in fact, become a global pandemic.

When I was 12 I found a tick on my hand and was assured repeatedly that I was fine because I lacked the typical Lyme disease symptoms, a fever or bulls-eye rash. Gradually, my health deteriorated. I started with debilitating knee and back pain. Later symptoms included migraines, memory fog, chronic fatigue, and dizzy spells. I kept telling my parents that something was wrong with me, and they could see it for themselves. My light went out. My mom was adamant at every medical appointment that I had Lyme disease, but she was consistently ignored by the doctors.

Until I was 18 I seemed to spend all my time visiting every kind of specialist trying to discover the cause of my chronic symptoms. It became an exhausting, not to say hopeless, routine. Starting with my pediatrician, I was given brain and spinal MRI’s, multiple spinal X-rays and ultrasounds. I moved on to an orthopedic surgeon who injected steroids in my my knee. Then there was my primary care doctor who told me I was just a typical tired teenager, and then the acupuncturist, a chiropractor, endocrinologist, optometrist, immunologist, gynecologist, rheumatoid specialist—all with nothing meaningful to report— and, finally, a neurologist who told me that there was nothing I could do. I would just have to live with daily migraines.

I felt worse and worse. My days consisted of school—when my friend would have to carry my book-bag—then coming home and sleeping for hours, waking up to do as much homework as my fogged brain could handle, eating dinner and going back to bed again.

My only relief was in sleep. I had no social life. Worse, perhaps, was that I had no friends who understood what I was going through. It got so bad I decided during my junior year that I would graduate high school early, halfway through my senior year. By that time, I would have enough credit hours to do so. Getting up for school and faking a smile to hide my suffering had become impossible.

My mom started spending every waking moment looking for doctors who would take us seriously. Finally, her persistence paid off. We went to an out-of-network functional medicine doctor who ran full body tests on me. Although it wasn’t the news I wanted to hear, I finally got a diagnosis: chronic Lyme disease. I was also diagnosed with intestinal impermeability and celiac disease, but those ailments will have to wait for another blog post.

The days and weeks after my diagnosis were the hardest. I had never felt so isolated and alone. The lack of empathy from those closest to me was the hardest part. Most doctors don’t think Lyme disease exists, never mind trying to educate my egocentric teenage peers that it does. Last December not one of my friends would sympathize with the news I had just been given. They brushed it off and treated me as if I would be okay again in a few weeks. Nobody believed I was sick. Those closest to me didn’t know about half of the things I went through daily. Social media is a mask; it’s easy to live a beautiful life online. But it doesn’t give visibility to one’s real life behind the scenes. I have never posted a picture or list of all the pills I have to take every day. I have never mentioned losing my best friend over the disease. Nor the days and nights I’ve spent crying out of hopelessness.

Life is never what you think it will be. This truth is hard for all of us to accept, especially if you’re a teenager. Four months after my diagnosis I got accepted into my dream university. My celebration was short-lived, though, when I came to understand that I wouldn’t be healthy enough to attend. When August rolled around I made a compromise. Currently, I’m enrolled in two online classes that I can attend from my bedroom. This is my reality. The past year I have found out not only a lot about myself but a lot about the lives of those around me. Although most of my friends still don’t understand, I stopped letting that bother me. Now I focus on the few friends who check up on me and take time to understand chronic Lyme disease.

Although I am only starting my battle with Lyme, I feel as if I’ve been fighting it my whole life. It’s hard to remember days where I have not felt pain. Not a second goes by when I don’t feel Lyme’s debilitating effects. Some days I’m anchored to my bed with sadness. But on other days I feel more alive than ever. Before my diagnosis, I felt as if I was living my life on the sidelines while everyone else enjoyed the game. I have a long journey ahead, yet I’m thankful for this second chance to get well and play again.

I appreciate every moment I am fortunate enough be alive. I believe that you can get through the worst in life if you’re surrounded by the right people and have hope that things will get better. I refuse to let Lyme disease take control my life. I am going to fight it with everything I have.


Skye Cowie is a 19-year-old professional freestyle soccer player living in North Carolina. Follow her @skycowie on Instagram.

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