John Donnally suffers from Lyme Disease. Despite his illness, John is an active cyclist and will be cycling across the country on the Bite Back for a Cure National Tour.
How does encouraging and connecting with others in the Lyme community help you deal with the disease in yourself and/or your loved ones?
I think it’s helpful to connect with others in the Lyme community who can identify with what you’re going through. Almost everything about Lyme and tick-borne diseases (TBDs) is ambiguous and controversial—everything from the diagnostic tests to the wide-variety of symptoms to the various treatment options—which can make dealing with this illness frustrating, confusing, and seriously lonely. Middle-of-the-ocean lonely. Not so surprisingly, both of my parents and my younger sister also have had Lyme, so we’ve all supported each other, which has been crucial to our personal recoveries. In my opinion, unless you’ve also suffered with a TBD—even if you’re the best-intentioned relative or close friend of a patient—you probably wouldn’t completely understand what it’s like. I think it’s important to speak with others who understand where you’re coming from.
Probably the last thing that I and those I’ve connected with in the Lyme community want is sympathy. I started reaching out to patients outside of my family because I wanted constructive conversations that would lead to new insights into our illnesses. I was both comforted and disturbed by the stories I listened to; comforted because it was good to know I wasn’t alone but seriously disturbed because the symptoms people described and the pain they suffered were eerily similar to what my family faced. Over the past year, after recognizing just how prevalent and pernicious TBDs are, I decided to speak out about my illness to encourage fellow patients. I hope I can give credence to what others are going through and raise awareness about the severity of these diseases through my speaking out. While I can’t say I’m entirely thrilled I got Lyme, it has connected me with some incredibly brave and wonderful people whom I otherwise would have never met.
What has been the most difficult challenge for you in coping with this disease? How do you rise above it?
After getting properly diagnosed, which is a significant challenge in and of itself, some of the most disabling and challenging symptoms patients deal with are the neurological ones and frequently the ones that are hardest to talk about. I’ve suffered with a wide-variety of symptoms, many of which were physically uncomfortable and easily recognizable (Bell’s palsy, for example), but the brain fog has been, for me and many others, the most frustrating symptom. Brain fog sounds like something impossibly vague and seems like just another way of saying you “feel out of it,” but it’s not, it’s more than that. It’s tough to describe but it’s like a constant hanging veil that makes you feel a vague detachment from what’s happening around you. Everything has kind of a gray and murky cast over it, things don’t feel real anymore; you feel numb and catatonic, sort of like being underwater; and you experience a mental slowness, an epidemic lack of clarity, an inability to organize your thoughts or even to remember what you said ten seconds ago; and what makes this all particularly insidious is that while you’re suffering with this paralyzing mental confusion, you look normal, perfectly healthy on the outside. Brain fog, though it can be a disabling symptom for many patients, is easy to dismiss precisely because of its vagueness and because it often doesn’t express itself in a tangible, visible way. Unfortunately, we’ve also seen in more severe cases that this brain fog can accelerate and cause permanent brain damage.
As for rising above it, dealing with Lyme disease has forced me to make certain lifestyle adjustments, and these adjustments are admittedly trivial and minor and nothing compared to what other sufferers give up and endure, but as a 24-year-old who values his social life, giving up partying with alcohol was, at first, difficult. But, my body didn’t respond well to alcohol anymore: I got internal ringing in my ears, lockjaw, facial twitching, eye floaters, and other unpleasant side-effects that I’d like to avoid talking about here and just avoid altogether. At first, I felt this would limit my opportunities, and when going out with friends I sometimes felt separate and alone and there’s still a part of me that feels like I’m missing out, but this social limitation has been, interestingly, somewhat liberating. I’ve become passionate about other things, things I may never have discovered if I didn’t have Lyme, like: advocacy, cycling, teaching, coaching, and reading a lot. Coupled with my alcohol sensitivity is Celiac Disease, an intolerance to gluten (not sure if it was triggered by the Lyme) that has made me more mindful of the things I eat. While I still deal with some persisting symptoms, I consider myself incredibly lucky to be back at almost full health. I’ve definitely become interested in how TBDs shape people, and just last week I was speaking with a TBD sufferer who said, “Life gives you things, and life handed me Lyme.” I think that attitude rocks.
This is the first part of a two part interview with John, be sure to read the second part.