Allison Johnston’s Story
In the winter of 1992, my family and I moved from the dry landscape of Tucson, Arizona to Upstate New York. I was eight years old and interested in the normal activities of a somewhat introverted eight-year-old: playing make-believe outside, reading, drawing, Barbies, determinedly trying over and over again to “get the hang of” riding my pink bicycle so I could feel like one of the “cool kids” on my block. Over the course of ten years, I spent literally thousands of hours lounging in the grass outside my best friend’s house, investigating wildlife in the many wooded areas of my neighborhood, swimming in the waters of Seneca Lake, and gleefully crashing into leaf piles outside my house during the Autumn months.
I now know that Lyme Disease is prevalent in this part of the country, yet at the time there was very little mention of its dangers. One morning after I headed to school, my mother found a living tick in my bed, full of blood, presumably sated from its recent feast. I had no telltale bulls-eye rash, no noticeable symptoms to speak of. Who knows if this was the moment I contracted Lyme, or whether it was during one of the many other opportunities I had to become infected.
Around this same time, my mother began to suffer from unusual though not unheard of health concerns. What began as arthritis and foot pain slowly grew to include joint pain, stiffness, tingling sensations, numbness, shooting pains, digestive problems, memory loss and severe sensitivity throughout her body. She saw doctors from every specialty. She was diagnosed with rheumatoid arthritis, plantar fasciitis, IBS, fibromyalgia, MS and a host of other medical conditions. But no matter what treatment she adopted, she didn’t seem to be getting any better. She was finally diagnosed with Lyme Disease, as well as a handful of co-infections in April of 2013. I was in my late twenties and I had noticed that I was experiencing similar symptoms.
Something interesting happens when you experience mystery ailments for long enough, and are eventually diagnosed with Lyme: you begin to see it everywhere, hidden in plain view. That neighbor who was always complaining of headaches and numb fingers and toes, that friend who continued to have heart palpitations though her EKG results kept coming back “normal”, that coworker whose mother was diagnosed with Lupus but her symptoms didn’t quite add up. I experienced this firsthand with my mother, and now I find myself making the same comments in response to a list of maladies. “That sounds like Lyme Disease,” “Oh, have you ever been tested for Lyme?” “I hate to say it, but those sound really similar to Lyme symptoms.” For the past three years, I have been denying that what I’m experiencing could be Lyme. Maybe that denial comes from the fact that my symptoms were not nearly as severe as my mother’s. I was never hospitalized with debilitating migraines, I was never so sick that I couldn’t eat or sleep, I never found myself in a hospital bed post-surgery to be told “we didn’t find anything, we don’t know what’s wrong with you.” I was never told by friends and family members (though with well-meaning intentions) “you don’t seem that sick, you seem depressed… you should talk to somebody.” Maybe my denial has been fueled by fear that the road back to health will be long, difficult and isolating, and by the knowledge that testing and treatment will be potentially frustrating and likely very expensive. Or maybe that denial stems from good old-fashioned avoidance. If I don’t admit my symptoms, maybe they’re not there at all.
But the truth is my mother, one of my sisters, and I have all tested positive for Lyme Disease. It’s there in our bodies, whether we like it or not, and my list of symptoms seems to continue to grow. Over the past five years I’ve experienced everything from joint pain to heart palpitations to ringing in my ears to fatigue to depression to anxiety to cognitive issues to insomnia to a particularly alarming episode of such significant neck pain that the doctor prescribed 2 weeks worth of Vicodin, anti-inflammatories and muscle relaxers. Now that I have an answer, I am cautiously beginning my journey toward improved health. I am trying to be optimistic, but it’s incredibly difficult not to feel overwhelmed and ignored, especially while living in a state which officially claims that “Lyme does not exist in this part of the country”. All I can do is keep moving forward, keep leaning on my friends and family when I need to, and keep hoping that there will one day be more extensive research, more effective testing methods, and more successful treatment options for those of us who are suffering. At the root of all of this, is awareness. If we keep talking about Lyme, posting about it on our social media, sharing knowledge and information, I hope we can make some progress. And it’s certainly not a cure-all, but I like to think that a little hope can go a long way.
