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Lyme Awareness Month, Day Six: The Stigma of Mental Illness and Lyme Disease

May is Lyme Awareness Month--a month dedicated to educating the public on all facets of Lyme disease and other tick-borne illnesses. We thank all of the patients, advocates, and Lyme organizations for their dedication in helping to spread the word and save lives. Here at LymeBrave Foundation, we're taking an unfiltered look at what it's like living with this chronic illness by opening up our journals and sharing the highs and lows of life with Lyme. Join us for our 2018 awareness campaign by helping to #shareyourstory. Contact us to find out how!

Editor's Note: The following appeared as a blog post on Susan's personal website, dated December 17, 2012--nine months after she was officially diagnosed with late-stage, chronic Lyme disease.

Here’s where I get personal: I have Lyme disease and a co-infection of Babesiosis, a malaria-like disease. So what, you say. What does that have to do with mental illness? According to the CDC and WebMD, Lyme means you get fevers and headaches and it feels like you have the flu, no big deal.

Except, no. Lyme disease is an infectious disease, and when it’s misdiagnosed and left untreated, as it so often is because of a lack of knowledge and an increase in its political controversy, the microbes begin to spread throughout the body, filtering into every organ, including our most fragile: the brain.

What does this mean, exactly? When diseases enter the brain, it causes what’s known as encephalopathy, which can severely alter a mental state. When Lyme disease enters the brain in its late-stage (which can be classified in as little as a few months to decades after the initial infection), it rewires the brain, wreaking havoc on the neurotransmitters — the natural chemicals that carry out everyday function, that “balance” us mentally, that play a part in the stability of our personality.

Lyme disease is a disease of extremes, where every symptom becomes intensified. Pain becomes excruciating, fatigue becomes debilitating, dreams become vivid nightmares…So, too, do emotions and mental fragility become heightened. Depression, anxiety, paranoia, obsessive-compulsive behavior, cognitive dysfunction, and, yes, even rage are hallmarks of Lyme disease.

I’ve experienced these changes, though I didn’t know it until I was diagnosed. When I was in middle school, I had mild OCD. When I was in high school, I was diagnosed with a panic disorder. Last summer, I asked my mom if it was possible I could be bi-polar, so rapid were my mood swings from euphoria to a plummeting depression (we’ve recently discovered it’s Lyme-induced bi-polar disorder). Right before my diagnosis, I had episodes where I felt myself becoming detached from reality, like nothing was real.

When I began treatment, due to the Jarisch-Herxheimer reactions wherein the bacterial germs release a toxin that intensifies symptoms as they die, even more neurological symptoms began to manifest themselves:

My startle-reaction was heightened. I had difficulty with word-recall and sometimes it took full minutes to read a single paragraph because I was unable to focus and understand the words. On one afternoon, I didn’t recognize one of my best friends when she was standing right in front of me. Dreams became so vivid that it took an entire morning to separate the dream from reality. When the nightmares set in, I would wake up believing someone was in the house — I walked through every room, turning on every light, Riley following me curiously and sleepily before I finally stood in the dining room between the the front and back doors, too afraid to move.

Riley went back to sleep.

And, yes, there was rage. Those with Lyme disease call it Lyme Rage — an unexplainable, uncontrollable anger that fills every part of you. For years before my diagnosis, whenever frustration was heightened, I wanted to act out. I would envision myself going through the house breaking every glass object, throwing plates just to watch them shatter as if, somehow, that would ease my aggression and make it better.

I never did. I was always able to control myself physically, instead lashing out with words at the people closest to me until I burst into tears, not understanding why I was so angry, feeling such guilt for hurting the ones I love.

After treatment began and the symptoms intensified, so did the rage, though I was able to recognize it now, though I was able to tell myself it was just this disease, knowing that I was barely in control of myself, that these germs had taken over my body and my mind as I fought for control. Oh, I wanted to lash out. I wanted to yell at those whose ignorance was blinding; I wanted to punch the guy who followed me around the Dollar Tree singing Spanish songs.

Instead, I walked away.

It almost became a joke in my family: Susan, the most passive, non-confrontational person imaginable, and her Lyme Rage. My brother even gave me his punching bag when I felt overcome with this alien aggression. I think I used it twice.

I never would have hurt anyone, though I know I did hurt people with my words. Instead, I internalized everything…Everything. And in the deepest throes of depression, when guilt became all-consuming, when I thought about what my illness was doing to the people I love most dearly and when whispers that I was undeserving and unworthy of this life and their love filled my heart, when I became so tired of fighting and that need for a break, for some escape from this suffering, turned desperate…

I wanted to harm myself.

I wanted it to be over; I was too weary of fighting, of not being in control of my own body, of hurting. I didn’t want my family and friends to suffer as they watched me suffer. I didn’t want them to worry anymore.

They would be OK, I said to myself one October night when that desperation held a firm grasp on my heart and my mind spun with possibilities. They would be better off…Then, I turned to Riley, who slept peacefully on the floor in front of me, and began crying: he’ll be OK without me.

It was that thought that pulled me from the darkest depths this depression has ever reached. I made myself go to bed, repeating that things are always clearer in the daylight, promising myself another tomorrow. The next day, I drove to see my parents and broke down as I told them what happened.

I needed help.

I like to think I’ve always been self-aware enough to know when I’m acting out of character, when something feels off, when something feels wrong. I was able to recognize the depression and knew I was at risk for suicide, and I made myself get help because of it. I can’t help but wonder, though, what would have happened if I wasn’t aware of who I am, at my core: if I weren’t strong enough or empathetic enough, if I didn’t constantly wonder how my actions will affect others and think of consequences, if I didn’t believe in taking care of each other.

I wonder, what if I wasn’t aware of what was happening as it was happening, if I didn’t know how this disease doesn’t kill you itself, but it kills just the same.

When I think about the bi-polar and how, before I started seeing a psychiatrist who specializes in Lyme and before I started taking medicine to stabilize these moods, any little thing could trigger a swing into either mania or depression, I wonder. Because just like you’re not in control of your mood swings when the brain is altered, neither are you in control with many other mental health disorders when the disease changes your brain, changes you.

Those of you who know me and who have gotten to know me over the course of five years of blogging and social media are probably surprised, though I’ve always been candid about my illnesses — both physical and mental health alike. The thing is, that person who you’ve gotten to know is me. The real me. But illness, specifically one that alters your state of mind, can change you.

It’s why I fought so hard to hold onto who I was. It’s why I’m fighting, still, for the person I am.

I know that others aren’t so lucky. I know that others don’t have that support system. I know that others are so scared because they don’t understand what’s happening to them or why; maybe they’re even unaware of it happening as it’s happening.

I can’t help but wonder…

I am in no way, shape, or form excusing violence here. And in no way am I saying that all mental illnesses are related to Lyme. But I know the damage that these germs do, I know from research and patient stories and talking to doctors and from my own experience how it affects the brain and changes you.

I know how serious mental health can be, and how out-of-control it makes you feel.

I know that band-aids and prescription refills aren’t cutting it, especially as so many new cases of mental illness are reported each year; I know that dismissing someone as having a mental illness and “just needing treatment” is a cop-out.

I know that we have to have this conversation about mental health.

Let’s begin with “why.”

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