Story #1: And so it begins (background)
Welcome to the Invisible Stories Project. I’m Liz Allen and this is Story #1: And So It Begins…
I loved college. I went to college in the woods in New Hampshire, with access to tons of outdoor activities. I loved everything about it - I loved the way sunlight became crisp white in the winter and the center quad filled with snow, blinding everyone. I loved crossing the quad to get from my dorm to classes and I especially loved crossing the quad in the wee hours of the morning to get to swim practice.
As a freshman, I was an industrious student and a Division 1 athlete. I swam in the fall and winter, played water polo in the spring. In between practices, classes, and volunteering at the local elementary school, I managed to ski, snowboard, and rock climb. That first summer, I led backpacking trips in Wisconsin and Upper Peninsula of Michigan. I returned for my second year eager to continue living my dream and besting my swimming times.
But for some reason, my second year, I was weaker than the first. Months into training, I was failing to build muscle. My coach was on my ass about it, demanding I eat better and sleep more, insinuating I was being mentally weak. I wasn’t sure what was wrong with me - I had picked up a diagnosis of mono, but when that didn’t clear after months, the doctors changed it to depression. But that didn’t seem right - my physical symptoms were getting worse and worse.
And one Thursday in the winter, in my absolute favorite class - "history of the U.S. healthcare system" - something went very, very wrong.
That particular day, I was tired from my morning weight training session. I was scribbling notes as fast as I could, but "fast" got slower and slower. My arms felt weak. My whole body started to get heavy.
My throat begin to catch as I tried to breathe, so I craned my neck toward the ceiling and glided my fingers from chin to clavicle, as if trying to draw breath down into my lungs. Suddenly, I could feel my heart in my chest, like it was shaking the entire cavity, growing louder until it was pounding so loudly that I couldn't hear what the professor was saying – it was like he was underwater or behind a car motor.
For a minute, I thought perhaps there was some disturbance in the classroom. I looked around, but everyone else acted like things were normal. That meant whatever was going wrong was happening inside me. I started to panic. I placed my head in my hands and then – I started to see little black dots in my eyes, and I knew I was in trouble.
I had to leave – I stumbled down the stairs, out the door, and into the bathroom, where I collapsed on the floor. The stone felt cool against my bare cheeks and arms.
The world was silent, except for the heartbeat in my ears. Tears leaked from my eyes onto the grey floor. I couldn’t breath on the floor - my heart still felt like it was going to burst.
I strained under the realization that the change of venue didn’t change my physical experience.I propped myself up on my left elbow, heaving into the silence, my head cocked back, eyes to the ceiling trying to get a full breath. What was happening to me?
I waited, hoping someone would come find me and help me Did my classmates see? Did the person next to me notice I still wasn’t back from the bathroom? Were they worried?
But nobody came.
I was going to have to get myself home.
I eventually called safety and security - abandoning my notebook and pen and backpack in the classroom - and they gave me a ride to my dorm.
I didn't die in that moment. But I realized that I had become a different person. A sick person. I went from being a two-sport division I athlete and outdoor instructor to a girl who couldn't walk up the stairs without fainting. I went from swimming four hours a day to barely making it to 2 classes a day. I went from sleeping 6 hours a night to sleeping 14.
Over the next two years, I had more doctors' appointments than I had dates, and spent more hours in hospitals than I did in the classroom. I had a variety of symptoms that no one could seem to explain: dull pain, night sweats, racing heart, brain fog, fevers, a radiating pain in my right hip that had no clear origin. They diagnosed me with anything and everything: depression, mono, heart arrhythmia, lead poisoning, adrenal failure, and on and on – 13 diagnoses in the first two years.
And then, finally, my parents dragged me to an infectious disease specialist who figured it out. It wasn’t a heart problem - it wasn’t something caused from working out too hard or not getting enough sleep. It was Lyme Disease, with a co-infection of Babesia, and it was probably from a tiny tick I'd encountered in Wisconsin.
I wish I could say that the diagnosis meant that I found treatment and was able to recover or go back to a normal life. But that's not how it works for people with chronic autoimmune diseases. I had it for a long time before it was diagnosed and treated - it seems to have broken something in my system on a more permanent basis. Chronic Lyme is one of these diseases that hasn't had much research and that some people still don't believe is real. Most treatments are experimental, and rely on the patient to make an incredible number of lifestyle changes.
Over the last 15 years, I’ve been to over 45 doctors, going to over 600 doctors appointments, and have spent well over $150,000 out of pocket on medical care. My diet is extremely restrictive. I take 22 pills a day – a combination of antibiotics, antivirals, antimalarials, antiinflammatories, and vitamins and other supplements.
I have learned more about the U.S. healthcare system than any class could have taught me. I learned it from the inside out – how it works, how it doesn't, and how it feels to be at its mercy for your daily survival.
The most essential thing I learned, though, is what it takes to be a strong patient in a system that isn't designed for you. I often think about my young 20 year old self, sitting in that lecture hall, convinced that she just wasn’t mentally tough. And I want to tell her so many things… like how to advocate for herself. How to trust her own experience above the sloppy interpretations of people who aren't in her body. How to teach her friends to be better supporters.
Over the next 10 stories, I will share with you what it's like to live with chronic illness – the bad and the beautiful, the pain and the extremely delightful moments.
And, I know stories about sickness are hard - but I hope you stick with me because living with chronic illness isn't just about being sick. It's about learning what true friendship looks like. It's about figuring out who you are when you can no longer be the person you've always been. It's about navigating systems that weren't built for you and learning to ask for what you need.
And, of course, it’s about how resilient humans are - we all learn to grow and change 1000 times over. So, join me in making my invisible story visible and hear the stories of others along the way.