I Found Out I Had Lyme, But Then I Lost Myself: A Story By Julie Maio

Photo by Simon Matzinger 

Photo by Simon Matzinger 

Not only does Julie have an incredibly unique way of getting you to put yourself in her shoes, but you can tell, without question, that she's here to not only to share her experiences of Chronic Illness, and how to help those better understand the complications and stigmas behind it, but to stand by you and listen. Really, really listen...

Listen to what might be weighing on you, your (even if small) triumphs through it all, and the way in which you've decided to heal; no judgment, just a presence that reminds you--you're not alone. 

Julie (or as many call her, Yoolie), opens up about the way this disease, amongst other complications, can strip you of your sense of self--what it means to be you.

And she'd like you to join in, no matter the obstacle that brought you here.

What comes to mind when you hear the words “Lyme disease?”

For most people, they conjure up an image of a tick or a tick bite, and if they’re somewhat informed on the topic, they may think about the tell-tale symptoms of Lyme: chronic pain, flu-like symptoms, and a stiff neck.

While any accurate coverage of Lyme is a step in the right direction, considering the disease is still widely ignored by the medical profession in the United States and is misunderstood by the general public, I’d like to address another facet of Lyme that is often left out of the conversation: the social implications and side effects of the disease that affect our self image.

Because Lyme can wreak havoc on everything from what you can eat and your ability to process alcohol to negatively affecting energy levels and creating a war zone in your head by way of anxiety and depression, people with chronic Lyme typically struggle to maintain any semblance of a social life, let alone a robust one.

Even if the person is recovering and is no longer in isolation from being bed/house-ridden, it’s still difficult to fit in with other people on social outings amidst the specific dietary requests, having to make special accommodations for chronic pain, or dipping out early from an event thanks to fatigue.

Considering I’ve experienced both sides of the spectrum (being so sick that I barely left the house outside of going to work to my pre-Lyme days as a binge-drinking, dancing machine who was the life of the party), I can safely say that I struggled to define and understand who I was (and still do) once I became sick.

Here’s a list of what I’ve experienced over the years:

Change of Interests and Hobbies

When I was an undergrad in college, I played rugby, chugged beers, scarfed down on any cafeteria food that was grilled, and was a pretty bombastic person. I lifted heavy weights, boxed, took MMA classes, and loved anything high-intensity. I scoffed at yoga and meditation, clean eating, and being healthy. Obviously, all that changed once I got sick.

What we might not foresee is that once you get sick and make the choice to get better by way of dietary and lifestyle changes, that means the people you roll with might not be along for the ride, at least at this stage in the journey. I quickly realized that a lot of my friendships were held up by the weight of drinking and partying, which is not meant to be taken negatively or as an insult, it’s just a fact.

I also realized that people were quick to make fun of my new dietary changes and desire to do more light exercise because those decisions weren’t in tandem with who I was to those people, or even to myself.

So after over a decade of being the masculine athletic girl who could kick ass and take names, an identity I wore proudly and loudly, I lost that part of myself and was left thinking “who am I?” And I wondered if  I could no longer drink and dance the night away, would I still be considered fun and the life of the party? These things were especially important to me back then, but I’m happy to report I couldn’t care less now.

Body Dysmorphia and Beauty Standards

Even if you don’t have body image distortion issues, Lyme is going to mess with your perception of your outward image. I’ve written this list so many times, but it bears repeating… here is how Lyme has affected my outsides: hair loss, cystic acne, chipping of teeth, muscle atrophy, weight gain, weight loss, inflammation, discoloration of skin, and just all around looking lifeless. And none of these things are necessarily predictable or linear, so each day, you may take a look in the mirror and not have any idea of who’s looking back at you, which is pretty jarring and scary.

I used to be muscular to the point where I was called a man for a large portion of my life. My skin was perfect, my teeth were straight and white, and while my hair started falling out from birth control in 2010, before that I was able to make do with what I had. When my health bottomed out, so did my self-image, which is especially tough on women who are expected to uphold ridiculous beauty standards.

I lost another part of myself and questioned who I was if I couldn’t fit into all of my old clothes, if I couldn’t wear my hair down without it looking like I was balding, if my skin started to erupt in painful cysts. I’m the first to admit that I was vain, but the seemingly overnight changes to my outward appearance really shocked me to my core and left me wanting to hide in my room with a paper bag over my head. While I never thought I was a beauty queen, you can bet that looking like a balding, swollen tomato with pimples turned me into a self-conscious individual.

My Healing Isn’t Linear, So Who Am I Today?

To be honest, this facet of Lyme is probably one of the most difficult aspects for me to accept. There are some days or weeks where I can exercise it up and start to feel like the “athletic” me again. Sometimes I can go out dancing all night and take a few tequila shots here and there. Or my mind is on fire (in a good way lol) and I can get through everything on my checklist.

During these moments, my brain starts to go down the slippery slope of thinking I’m fully healed and can get back to the “old” me, whatever that means. I get overly confident, my extroverted side comes out in full force, and I start shifting it into high gear until… you guessed it (or maybe you didn’t, that’s okay), I wake up and the “sick” me is now in control.

What does sick me look like you ask? Instead of exercising I’m in chronic pain from head to toe and hopefully taking an epsom salt bath. Instead of being out on the town in my snazziest outfit dancing I’m in my room in sweats with Netflix on queue until the foreseeable future. Instead of getting through everything on my checklist, I’m lucky to get anything done on my outside-of-work checklist.

Sometimes I don’t even have the energy to make food for myself or shower or take care of even the most rudimentary of tasks. Naturally, this juxtaposition of being health and then not takes some getting used to. It used to be a slap in the face every time I had a flare or a set back. I would cry and get frustrated. I couldn’t figure out if I should label myself as “healthy” or “sick.” I didn’t know what to tell people when they asked if I was getting better. But I learned to just accept that this is how things are right now, and I don’t need to slap labels on myself. I’m just me, as cheesy as that may sound.

My Head Is A Warzone That Can’t Be Won

One of the most troubling symptoms of Lyme are the mental disturbances that come with it: anxiety, depression, OCD, suicidal ideation, PTSD, panic and anxiety attacks, hearing things, etc. You name it, I’ve most likely experienced it. And when you couple all of the aforementioned issues with not being able to have a high-functioning brain from time to time, it really takes a toll on you and how you see yourself.

How can I have paralyzing anxiety yet be an adventurous go-getter? How can I be depressed yet so full of life? Should I listen to what my brain tells me when I’m anxious and depressed? Are all the horrible things it’s saying true? No, they can’t be true. Wait, yes, I think they are true. WHO AM I? This is a tiny snippet of what goes on during my head most days.

Sometimes, it gets to the point where it all is too overwhelming and painful to deal with so I dissociate - that’s my last-ditch effort at protecting myself from my worst enemy: Lyme brain, as I like to call it. But coming back from a hours or a day or two going through the motions and disconnecting yourself from the world around you can be jarring and difficult. It’s kind of like when you don’t start your car for a really long time and have to jump it to get it going - it takes awhile to get it running like it was before you left it in the garage to collect dust.

To close, I could really write a whole book on this topic, which is why this post is longer than my others, but I think it’s important to shine a light on how people with Lyme can lose their identities and sense of self. Not knowing who you are in this crazy and mad world can make you feel scared and alone, when most of us with Lyme already feel that way to begin with, especially on our worst days.

Do you feel like Lyme has made you lose your sense of self? Feel free to reach out if you need someone to talk to! I’m always here to listen.

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Stay in touch with Julie (or rather, Yoolie!)

By way of her instagram, where she touches on all things mental health, Lyme Disease, healing holistically, and other such topics, all while tossing in a few humorous remarks to keep things as conversational and relatable as possible. 

Ah yes, and if you enjoyed her Instagram, do hop on over to her blog Chronicles Of Yoolie, where she dives even deeper into the world of chronic illness. 


Interested in sharing your story?

We would love to hear from you, and if you have questions beforehand, do either send me an email (chloe@morethanlyme.org), or fill out the forum found by clicking the link below. 

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