Lyme Rage

“The sun raped my eyes leading to an anger that would boil up inside me”

I want to share this example without preamble, because it’s the best example of Lyme rage that I have. I’ll explain more on the topic later. Suffice it to say that Lyme rage is nonsensical. It is not an emotion, it’s a symptom of Lyme disease.

“The best example I remember of experiencing Lyme rage was when I napped. I took naps every day until they became a source of pure frustration. I would lay down, only to be assaulted by outer stimuli. I experienced a hypersensitivity to noises and lights that rudely interrupted my attempts at rest that I so desperately needed. The sun beaming through the windows, dancing off the aspen leaves, infuriated me. As those rays from the midday sun reflected off the corrugated steel paneling of our condo, heat caused it to expand with a cacophony of crackles and pops. The din assaulted my ears with a resonation that echoed and bounced around in my brain. The sun raped my eyes leading to an anger that would boil up inside me.”  ~The Battle Within: My Lyme Story

I would erupt like a volcano

Years before I was diagnosed with Lyme disease I recall an argument between my husband and me. I couldn’t begin to remember how the argument began. I do know that it ended with me throwing a bottle at him. A bottle which thankfully shattered onto the ground instead of his head, where I was aiming. I am not the type of person who throws bottles at people’s heads. The shocking part is that I felt no remorse. I was completely justified in my ire towards this man I loved so deeply.

During my battle, rage was an everyday part of my life. It wrapped itself around me like the choking coil of a boa constrictor, enslaving me with an insistent pressure from which there was no escape. When I awoke in the morning, if my husband had deigned to leave a slit in the curtains, allowing light to escape through, my head would explode with an anger that erupted with the pressure of a volcano. “Goddammit, why can’t you close the fucking blinds!!!!” I took it as a personal assault, as though he was intentionally provoking me. As though I was a sleeping bear that he dared to disturb.

What is Lyme rage?

Lyme rage is a seldom talked about symptom of Lyme disease. In fact, if you hit the internet for clues about Lyme rage they’re few and far between. In general, I think we ignore the psychological symptoms of Lyme disease, largely because the physical symptoms are so overwhelming. But, that doesn’t mean we should neglect their importance, as they can have lasting effects.

One article I found defines Lyme rage as “acute episodes of rage”… “with a very abrupt onset” that are “extremely intense” in which a person experiences “minimal cognitive control.” When I think back to my Lyme battle it is the abrupt onset and extreme intensity of the emotion that continues to resonate.

Lyme Rage is not an emotion

Another resource I looked to for help in defining Lyme rage was Brene´ Brown’s Atlas of the Heart. This book, and her series on Netflix with the same title, is an inspiring deep-dive into emotions and the words we use to describe them. I was surprised to find that rage wasn’t included in her book. It is organized as a subset of anger. She defines anger as “an emotion we feel when something gets in the way of a desired outcome or when we believe there’s a violation of the way things should be.” If you’ve ever experienced Lyme rage, I think you’ll agree that it carries zero of the rational thought that defines anger.

The truth is, Lyme rage isn’t an emotion, which makes using resources like Atlas of the Heart moot. It is a neurological symptom of Lyme disease. There is no rhyme or reason to it.

For several years leading up to my diagnosis, and the majority of the time I was in treatment, I didn’t even realize I was suffering from Lyme rage. It wasn’t until I was nearing the end of my battle, when the symptom dissipated, that I was able to call my episodes of rage what they were, a symptom. And I can’t begin to tell you what a relief it was to be freed from the uncontrollable fire that had nearly consumed me for so many years.

Obsessive Compulsive Disorder

My Lyme rage was combined with obsessive compulsive disorder. I hadn’t exhibited OCD tendencies as a child. It wasn’t until my late-twenties, early-thirties that the little monsters that had burrowed into my body, took up residence in my brain.

Unfortunately for my husband, he took the brunt of my Lyme rage which was often triggered by my OCD. Cabinets had to be closed. The remote control had to sit on the corner of the end table so it lined up perfectly with the edges of the top. When turning the volume up or down on the TV, it had to be turned to an even number. I also hated a change in plans. If we said we were going to the store to pick up milk and eggs and my husband started browsing for other grocery items, I would become inflamed with fury.

Try your best not to poke the bear

I can only imagine how difficult and frustrating it must have been for my husband to put up with this unrelenting symptom. When I had more lucid, sensical days I feared constantly that he would leave me. Unfortunately, not every couple survives the torment of Lyme disease. On those especially difficult days remember that it will get better. This person, who doesn’t seem like the person you fell in love with, will go away and your loved one will return.

As a caregiver I encourage you to remind yourself, constantly, that your loved ones anger towards you is not personal. Likely, they’re unaware of what’s happening as the rage boils up inside them. It may help to imagine them as a bear you’ve accidentally startled in the woods. If you startle a bear, and it’s roaring at you, you don’t argue with it. You make yourself small, speak in soothing tones and slowly back away.

This rage won’t consume you forever

Lyme warriors, if you’re experiencing Lyme rage, just know that you aren’t insane. This is yet another symptom of the disease that’s attacking your body. Be patient with yourself and know that it will get better. It will likely take longer than you want it to, but with love for yourself and determination, you’ll get your mind back. Don’t lose hope, keep battling and remember to give yourself a hug from time to time. You deserve it!