This article was first published on the Global Lyme Alliance blog on January 30th, 2018. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
In college, I was in the concert choir and during my sophomore year, I lost my singing voice. For an entire semester whenever I opened my mouth to sing, nothing came out. I could speak normally, but my singing voice was gone. It was completely out of the blue and I thought it was because I was staying up too late and doing the things college students tend to do. Then just as strangely as it left, my singing voice came back.
Flash forward to 2017 when country singer Shania Twain was diagnosed with Lyme disease. Years prior she suffered from "dysphonia," or hoarseness, which brought her singing career to a screeching halt. After she was diagnosed, she attributed her temporary vocal loss to Lyme disease. When I heard about Shania, the vocal loss I suffered over 15 years ago finally made sense.
By the time I was diagnosed with Lyme disease in 2016, I'd experienced almost 20 years of these odd, seemingly unrelated, symptoms. It's like each symptom was a piece of a puzzle. The pieces were scattered throughout my life and I didn't know if they were all pieces of the same picture or not. It wasn't until I got a diagnosis that everything seemed to fit and the picture became clear.
My college friends used to joke that I was never able to get off the couch. I was constantly asking my roommates to bring me glasses of water. I thought I was lazy, but later I realized I had chronic fatigue syndrome even back then. It's hard to understand because I was active and involved in countless clubs, but when I crashed, I crashed hard. No matter how hard I tried, I literally couldn't drag myself off the couch. It wasn't normal for a 20-year-old to feel this way, but I never thought to question it.
In my mid-twenties I started waking up in the middle of the night drenched in sweat. I thought it was from nightmares (which were probably also related to Lyme), but it turns out it was the multiple co-infections that often come along with Lyme. I also noticed bumps on my neck and behind my ears. Doctors weren't overly concerned, but when I asked other people, no one had experienced anything similar. Later I learned these were swollen lymph nodes, constantly inflamed from years of battling Lyme spirochetes that were slowly multiplying in my body.
Around this same time, muscle and joint pain started in my shoulder and migrated to my hips. It was difficult to describe to doctors because it was there one week and gone the next. I remember getting a lot of shrugs and referrals to the next doctor or the next physical therapist, who also shrugged it off. There were days I could barely walk and had to shuffle across the floor, but I learned to live with it because there was no easy explanation for what was happening.
Now when I look back at these symptoms, I wonder why I didn't fit the puzzle pieces together sooner. People in their twenties shouldn't be waking up covered in sweat or shuffling across the floor like an octogenarian. Maybe it was because the symptoms disappeared and reappeared or maybe it was because they flew just below the threshold of what I considered serious. Maybe if I had just asked the doctors, "Could all these seemingly random symptoms be related?" they would've dug deeper. Unfortunately, that is not how our fragmented healthcare system works.
My story is not unique. Many people with Lyme disease and co-infections spend years putting band-aids on symptoms only to get an accurate diagnosis decades later. I marvel at the astounding amount of patience and persistence it takes one to finally be diagnosed with Lyme.
The symptoms of Lyme disease are as varied as the people who contract it. Each one of us has different puzzle pieces that make up the picture of our illness. These symptoms match those of many other diseases, which is why diagnosis is often so difficult. Lyme disease can even trigger autoimmune diseases making this puzzle one of the hardest to solve in medicine.
Let's hope someday soon these strange symptoms will not longer baffle doctors and other health professionals, and instead be recognized as classic Lyme disease symptoms. When that day comes treatment will not be delayed, outcomes will improve, and all the efforts to provide awareness and education will have been worth it.
"It's never too late to be what you might have been." - George Eliot
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.