Life in the Lyme-Light Is Far From Glamorous

Is the limelight getting the best of you? How could it? Life in the limelight sounds so glamorous, doesn’t it?

What about life in the Lyme-light – the one that doesn’t consist of glitz and glamour, no beautiful dresses or tuxedos, no makeup or red carpet events, no photoshoots or movie premiers. Is that life getting the best of you?

Maybe, and who could blame you? The Lyme-light I’m talking about consists of anything but glamour. It’s being in pajamas for days, confined to the bed or couch, it’s dirty hair from not being able to shower every day, it’s doctors’ offices and appointments, blood and imaging tests. It’s a daily struggle with no release. Doesn’t sound as much fun, right? That’s because it’s not.


Instead of gazing stares from adoring fans, we get confused looks from doctors, friends and family. Instead of people hanging on our every word, we get tormented by nonbelievers. We’re not looking for much, just someone to understand. Is that so much to ask?

We long to live on the other side of this – maybe not with all the fancy things I’ve mentioned, but we long for our lives back, because anything better than this is a freaking dream. It’s hard being confined to your body when it can’t offer you what you want. So I ask again, is it getting the best of you?

I know I would gladly, in a heartbeat, give up herxing for work, antibiotics for daily vitamins, doctor visits for friendly nights out. Give me sleepless nights from drunken laughter instead of from pain and insomnia.

The Lyme-light we have all been thrown into was never what we wanted, or expected for that matter – but it is what our life is now. This is the time we learn about who we are, who our friends are and who in the medical field is in it to be a doctor for the patients. It’s a learning experience as much as it is a health journey. It’s fighting every day for yourself. It’s advocating every day for the community. It’s spreading awareness so no one else has to go through what you went through. Hmm…so maybe there are some similarities to the glamour side of the Lyme-light: we try and do good with what we can to make it better for others.

So again, is it getting the best of you? There are days where it’s hard to not let this disease and this life get the best of you, but the desire to get better, to be better and to make the process easier for others is sometimes enough to push us forward and not let it get the best of us. Bad days exist, and personally I let myself feel them. I cry, I scream, I write, I feel the feelings – because I deserve to. No one asked for this, but this is life now. This is my life and this is our lives, and we’re too strong to lose.

Our Lyme-light is much different, but like I said: we’re too strong to lose.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Jacob Wackerhausen.

Find this story helpful? Share it with someone you care about.

Related to Lyme Disease

woman sitting in a car and leaning her head on the steering wheel

A Typical Day in My Life With Lyme Disease

My alarm goes off but it wasn’t needed as I have been up for most of the night. My joints are aching as I sit up to get ready for the day. There are storms coming through the area which causes extra joint pain to occur. I take my medicine with my breakfast shake as [...]
woman leaning against a stone wall in the mist

The Lonely Battle of a Lyme Warrior

The alarm wakes me from a deep world of sleep. Dreams still floating on the surface. But instead of moaning about the morning and the tasks that lie ahead, I am immobilized in bed, burning pain fusing my back to the mattress, eyes sealed with stitches of exhaustion. Lyme disease means facing a concoction of [...]
tick sign in a flower meadow

10 Facts to Know During Lyme Disease Awareness Month

May is Lyme Disease Awareness Month. Here are 10 facts you need to know about Lyme disease in order to spread awareness to others. 1. Lyme disease is most known for causing joint pain, swelling and fatigue. However, Lyme disease can affect more than just joints; it can affect every part of the body including the [...]
mother smiling with three children

Living, Loving and Lamenting With Lyme: An Open Letter to the Nasty

Dear Nasty Little Nymph: Don’t let the title of this article fool you. Things have been downright sucky since you picked me. I bet it was in my early 20s during my obsessive hiking phase, where, with no kids and no real responsibilities, I spent the majority of my weekends trudging through your neck of [...]