Over the year I've spent fighting chronic Lyme disease, I've learned that if I want sympathy from others, I should talk about pain. "I'm in pain" seems to be the universal code for "I'm going through something terrible." But the pain, I can handle. The pain doesn't turn me into a different person, or make me go against what I believe in. The pain doesn't make me forget who I am. No, the worst part of Lyme isn't what it's done to my body. It's what it's done to my brain.
Borrelia Burgdorferi, the bacteria associated with Lyme, can invade any part of the body, as can the Lyme co-infections like Bartonella and Babesia. But one of their favorite hangout spots is the nervous system. That's why Lyme can cause such debilitating and terrifying symptoms as brain fog, facial paralysis, and involuntary movements. It's also why many Lyme patients experience mental health struggles ranging from anxiety and depression to psychosis and derealization. Lucky for me, the primary psychological symptom it chose to grace me with is rage.
Some patients and clinicians use the term "Lyme rage" to refer to the overwhelming, unprovoked bursts of fury that people with Lyme can get. For many of us, Lyme rage gets extremely dark, leading us to concoct violent fantasies and behave in ways we otherwise never would. One study in Neuropsychiatric Disease and Treatment found that 11% of Lyme patients were homicidal, and 68% total were homicidal, suicidal, and/or suffering from explosive anger.
Some describe bursts of Lyme rage as rage attacks due to the way they hit you out of nowhere and completely seize you for that hellish period of time. During my rage attacks, I have blown up at people I loved over literally nothing, fantasized about just about every violent act possible, and punched a wall so hard I bruised my hand.
For years before my diagnosis, I didn't know where my rage came from, so I told almost nobody. I knew most people would probably deem me a bad person or diagnose me with a mental illness I didn't have. The few understanding people I did tell always assumed there was something I was mad about. And I, too, spent hours analyzing what events in my life could have provoked this repressed anger. Yet none of these theories felt right, because at the end of the day, the rage felt physical. Sometimes, I'd make things up to get mad about, but the feelings of rage always came before their target.
I knew good old healthy anger — it had a cause and a potential resolution. And I didn't experience it often; I was not an angry person. Lyme rage was far more sinister than that. It was like a voracious monster, whipping up violent thoughts and impulsive actions to devour, creating increasingly sadistic fantasies as its appetite grew, yet never becoming fully satisfied.
Though I was merely the food, I felt like the monster. I suspected I was genetically wired to want to cause others pain. Deep down, I wondered if I was a sociopath.
Lyme rage "makes people feel out of control and helpless, and you're deeply self-loathing," Kristin Reihman, MD, family medicine doctor and author of Life After Lyme, tells Bustle. "When they start to lose control on the train of their emotions and can't seem to get off, that can lead to feelings of helplessness and remorse and deep shame." Common behaviors of people with Lyme include outbursts at family members and inconsolable crying fits, she says.
"After something sparks my anger, I tend to instantly clench my jaw, my muscles tighten, I raise my voice, my mind starts to race — racing and bouncing thoughts — and I can’t catch it to slow back down," Peter, a 25-year-old Lyme patient, tells Bustle. "I say things I don’t think are true but I know will provoke things. I will sometimes yell at others. When I’m alone, I break things, hit walls. Its onset is always so fast, I come out of it sometimes totally blacked out, or sometimes I can remember bits and pieces, but it’s always shocking to hear how far I can take things when I get that angry."
"My worst incident was when another driver verbally attacked me and almost hit me with her car while I was getting into mine, so I chased her in my car for almost a mile," Shannon, 37, who also has Lyme, tells Bustle. "I saw red. I literally heard a buzzing when I got that angry. It's a bit scary."
"People with Lyme rage can often feel to blame for intrusive or dark thoughts," Ruschelle Khanna, LCSW, a psychotherapist who specializes in counseling people with Lyme disease, tells Bustle. "If negative, hostile or intrusive thoughts persist, some clients report feeling as if they are somehow responsible personally."
In chronic cases of Lyme, where people struggle with these symptoms for much of their lives, you can forget who you are behind Lyme rage. In fact, it was not until undergoing Lyme treatment that I realized how truly not myself I had been. Lyme rage had colored every human interaction I'd had. As the rage evaporated, every single situation in my life looked different. People I'd held grudges against for years, I realized I was never even mad at. It was Lyme rage tricking me into thinking they were the enemy. Lyme had framed them. And it had isolated me from the world in the process.
But my greatest epiphany was that I was actually the opposite of a sociopath. I deeply longed to love and give and share with others. On top of all the rage and the bitterness I'd accumulated over years of physical discomfort, my nervous system was so inflamed and overtaxed that the whole world felt like an assault on it. This made me feel separate from the rest of humanity. It's only through healing from Lyme that I've begun to feel like part of it again — or to believe I am a good person at heart.
It's important for people to know that Lyme rage "has to do not with the person but with the inflammation in the brain and the impact of Lyme and co-infections on the nervous system and the body," says Reihman. "I try to reassure people that this isn't them. It's more like a wave of feelings passing through them. I encourage people not to beat themselves up about episodes of getting out of control."
"This is the the brain signaling that it is under extreme stress," Khanna agrees. "This has nothing to do with the moral character of the person experiencing it."
To cope with Lyme rage as the infection is healing, a few tools Reihman teaches her patients are tapping and WHEE. Khanna recommends finding a Lyme-literate mental health professional and says cognitive behavioral therapy is particularly effective. "People might not be so readily interested in telling someone they're having intrusive, violent thoughts, and that's why going to see a mental health provider is so important," Khanna says. "They need to know that's normal with an infection, and they need somebody to help them take care of it and stay on top of it rather than being ashamed of it or afraid of it."
My healing journey hasn't ended, so my rage attacks still come back, but they're not quite as debilitating as before — because I know that they will pass and I know that they're not me. And I know that, despite the monsters that masquerade as us, we will one day recover ourselves.