Many who contract chronic Lyme disease develop Post-Traumatic Stress Disorder (PTSD) as a result of the stress, pain, and suffering.
For many years after my April 2007 relapse of Lyme and other tick-borne illnesses, I experienced symptoms of Post-Traumatic Stress Disorder each spring. As the weather blossomed with new possibility, my body went into “fight or flight” mode, the stress response we have when we encounter danger. For animals, this is the natural protective reaction of prey when a predator swoops in. Humans have the same reaction when they are in immediate danger—say, in combat—or when they are confronted with trauma, like a shocking loss or a catastrophic medical event.
Once we are out of danger, the “fight or flight” response usually abates, but for some, it can hang on for months or years, triggered when someone is reminded of the trauma. Even though I wasn’t consciously worried about relapsing again, my body would remember that time and prepare each spring as if it were going to happen. I’d suffer from anxiety, flashbacks, and nightmares. As Bessel Van der Kolk, M.D. writes in The Body Keeps the Score: Brain, Mind and Body in the Healing of Trauma, “While we all want to move beyond trauma, the part of our brain that is devoted to ensuring our survival (deep below our rational brain) is not very good at denial. Long after a traumatic experience is over, it may be reactivated at the slightest hint of danger and mobilize disturbed brain circuits and secrete massive amounts of hormones.”[i]
Ironically, though my body was trying to protect me from experiencing relapse, it is precisely this stress response that can trigger a flare for Lyme disease patients. My doctor equates a high release of the stress hormone cortisol to “walking into a minefield of ticks.” This news, of course, only made me more stressed; was my subconscious worry about relapse going to cause a relapse?
Thankfully it didn’t, but I had to work hard to fight both the possibility of relapse and my innate response to that possibility. This required boosting my immune system, engaging in talk therapy (including cognitive behavioral therapy), increasing adjunct therapies, and grounding myself with mindfulness and fun. Through my work, I learned that I was not alone. I had always associated PTSD with veterans, who do understandably suffer high rates of this ongoing stress response. But PTSD can happen to anyone who experiences trauma, and there are so many aspects of tick-borne illness that are traumatic.
In addition to the devastating physical toll of tick-borne diseases, especially when they are undiagnosed for months or years, prolonged serious illness can take a toll on finances, relationships, and self-worth. The diagnosis process itself can be traumatizing. “It’s important to understand that many of these undiagnosed patients have suffered not only the debilitating physical symptoms of tick-borne disease, but also the indignity of being humiliated and demeaned by many of the specialists they have visited,” writes psychiatrist Bernard Raxlen, M.D. in his book Lyme Disease: Medical Myopia and the Hidden Global Pandemic. “A negative process, sustained by a punishing medical system, has traumatized these patients.”[ii]
Visiting a doctor, worrying about relapse, or experiencing the tiniest flare of symptoms can trigger a PTSD response in patients of tick-borne illness. As we head into summer and the height of tick season, many of us also experience PTSD as we worry about being reinfected. I’m now feeling healthier than I have in years, and celebrate summer with swimming, kayaking and paddleboarding. But as I head out for these activities, I’m bathing myself in repellent. When I return, I’m fastidiously doing tick checks and taking other precautionary measures. My joyful days are often followed by nightmare-ridden sleep. (For more on this delicate balance, see my post “Managing Fear of Ticks During the Summer”).
PTSD is a natural response for Lyme patients. The first step in coping with it is normalizing this reaction. There’s no shame in experiencing PTSD, and having anxiety-related symptoms does not mean “you’re crazy” or “it’s all in your head.” It may mean that you have a diagnosable and treatable disorder. Talk to your Lyme Literate Medical Doctor (LLMD) about ways to manage your PTSD. Eventually, with the right support, you just may be able to rewire your response, and could even find your PTSD turning into PTG: Post-Traumatic Growth.
[i] Van der Kolk, Bessel, M.D. The Body Keeps the Score: Brain, Mind and Body in the Healing of Trauma. New York: Penguin Books, 2015 (2).
[ii] Raxlen, Bernard, M.D. with Cashel, Allie. Lyme Disease: Medical Myopia and the Hidden Global Pandemic. London, UK: Hammersmith Health Books, 2019 (20).
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.