There is a parasite living inside of me.
It’s been there since I was 10 years old. I have very few memories before this parasite was a part of my life. And yet, for much of the last 10 years, I didn’t even realize it was still there, burrowing into the tissues of my body, making itself a home in a place it didn’t belong.
I have Post-Lyme Disease Syndrome (PLDS), a disease that, until the last few years, was thought to not be real. Because of this, the last decade of my life has been consumed by trying to figure out & treat whatever was causing so much insufferable pain & fatigue.
I had high moments, of course. There would be times when a treatment would work, & I would have a few great months. But then a flare would rear its ugly head without me realizing what was happening. It was frustrating, knowing that I was seemingly doing everything right to be healthy. The problem was, I was treating the wrong illnesses. Without the correct name for what I had, I was exhausted trying to treat 12 different misdiagnoses that had been given to explain my symptoms.
Lyme Disease is caused by the bacterium Borrelia burgdorferi. It is transmitted to humans through the bite of an infected tick. It is one of the most common vector-borne diseases, & yet, it is under-researched & under-studied, meaning many people go years without realizing they have it. This is troubling, because the more time people have Lyme disease, the harder it is to fight.
This was the case for me. We now believe Lyme disease could have been living inside of me for years without me knowing. This is because Lyme Disease likes to mimic other illnesses, making it difficult to catch. In addition to this, the testing for Lyme Disease is flawed in many ways. Lyme Disease is discovered through antibody testing, which makes it all too common for a patient to have Lyme Disease & still test negative for it because their immune system had not created enough antibodies on its own to fight the infection.
Back when I had Lyme Disease, we knew much less than we do now. Knowing what I know now, I should have received much more antibiotic therapy than I did, but at the time, it was believed the customary two weeks of antibiotics was sufficient. When my pain, fatigue, headaches, & insomnia returned just a short six months later, the doctors insisted i was fine & just wanted attention. It took another year to finally convince them I was truly in pain. It was then that I received my first misdiagnosis of fibromyalgia.
A few years passed, during which I paid little attention to my worsening condition. I became less active, succumbing to my pain, but that gave me an opportunity to thrive in my more artistic passions.
It wasn’t until high school that I noticed the brain fog, although, at the time, I didn’t have a name for it. I simply noticed that my mind was not what it used to be. As an avid reader & writer, it was odd to me that my reading comprehension was not up to par with my classmates. My memory continued to work properly, which meant, in the American education system of memorizing & regurgitating facts, my grades were still exemplary. But anytime I was asked to think abstractly, my famously creative brain failed to think through even simple problems or equations.
In my junior year of high school, my symptoms hit an all-time low. I had developed a number of food allergies, as is common with Lyme patients, & my gut health was suffering tremendously. I was diagnosed with IBS & leaky gut, but none of the treatments ever seemed to work (in fact, they only seemed to make my symptoms worse), so after a while, I refused any prescription pills. In addition to this, my anxiety seemed to heighten, & anything that deviated from my regular schedule sent me into a tight-chested panic attack. I thought it was simply stress-induced, brought on by having to deal with difficult illnesses. Compared to my physical symptoms, I felt it was less important & paid little attention to it.
In college, my symptoms finally found some relief. I cleaned up my diet even more than I had before, & I found a holistic doctor who treated my symptoms in the first way that ever worked. Exercise helped tremendously. I got off every prescription medication I had been taking, & for the first time in years, I felt relaxed & free. My senior year in college was bliss. I felt healthy, carefree & strong. I signed up & trained to run across the country. I met the love of my life. I ate whatever I wanted, went out with friends, & enjoyed every moment of beginning my adult life.
The thing about Lyme disease is you never know when a flare is coming. The unhealthy eating, long training runs, & lack of sleep finally caught up with me, & the flare came at the worst possible time – while running to help those in need. While my teammates were supportive, without the diagnosis or words to describe what was happening to them, I struggled with feelings of loneliness & misunderstanding.
When I returned, I felt beaten & hopeless. I cleaned up my diet again, started taking my supplements, but it just didn’t seem to work. My brain was worse than before – I was stuttering over my words & mispeaking. Once able to capture a room full of people with 20-minute long speeches, all done without notes of any kind, I was now struggling to find words on the tip of my tongue in frequent conversations.
Answers finally came just a few months ago. After years of searching, months of talking to doctors & going to appointments yet again, I received the diagnosis I had been waiting for. I had treatment that finally helped. The right diet, the right supplements, & the recommendation to make self-care & sleep a priority rather than a luxury actually made a difference.
As of now, it doesn’t seem I will ever be symptom-free. At this point, PSLD, at least in my case, can be characterized as an auto-immune disease. When Lyme flares, I can try my best to fight the bug, but Lyme is a spirochete, meaning it has a spiral shape that makes it easy to hide in tissues of the body. When Lyme is hiding, my immune system is depleted, so the best I can actually do is not continue to break down my body by trying to kill the Lyme, but to boost my immune system as much possible. This, in turn, will reduce inflammation, improve my digestion, &, in the end, help me to feel healthy, as if there is nothing wrong. And if Lyme ever does flare, I know what to do to fight it back.
It’s been a long journey getting here, one that I normally don’t like to think about or share. But since learning my diagnosis, I have met so many other people who have struggled with it, & I have realized I am not alone. Which means there must be so many other people out there feeling the same way that I did, & sometimes still do. And I want to let you know that you are not alone, & that this illness does not define you. It is part of your story, but it doesn’t even have to be the worst part.
Like the plot twists & challenges in any story, it’s not what happens in the plot line but how we respond to it that makes us who we are. And we are warriors. Lyme has made me stronger, more resilient, & more patient than I ever would have been. But most importantly, I am more empathetic, more kind, & more compassionate. And that is why I am sharing my story. I want my blog to be a safe space, where people, no matter what it is that has shaped their story, can find a safe & supportive community.
Lyme changed my life, but it doesn’t have to define it. What I do with my life will define it, & all I want to do with my life is to bring a little more love & kindness into this world. I believe that love, truly, is what heals most. I could not be where I am in my journey now without the love I have in my life, from my family, my friends, & from Joseph. Love truly does heal all wounds. The love we extend to others has greater value than we will ever know.
The one thing I felt Lyme took from me was my self-worth. For so many years, I felt shame about my illness. I was embarrassed to share my story. I thought no one would want to hear it, & I didn’t want it to be what I was known for. But now, as I have said, I have learned love is what is most important. So, as much as this blog post is for you, it’s for me, too.
This is a letter to myself. It’s finally remembering my story in every painstaking detail, & it’s telling myself that it’s okay. It’s okay to be me. Its okay what happened to me. I still have value, & I am still worthy of love.
My blog is a safe place, for me & for you. If you need a reminder of your self-worth, of your value, pay this blog a visit.
No matter what your story, you are worthy of love. And I want to share with you what I am just now beginning to learn – the best love you will ever have is the love that you give to yourself.
There is a parasite living inside of me, but I am in charge of my body. And today I am choosing to show my body respect & gratitude for all it has done, & love for the strong & resilient body it is today.
