“Tell the story of the mountain you climbed. Your words could become a page in someone else’s survival guide”

Morgan Harper Nichols

Hello readers, my name is Lauren Michelle. I’m a 23-year-old former ballerina, sometimes Chemistry major, and full-time medical zebra. And this is my blog for all things about being chronically ill as a young adult. I started showing signs of medical problems as a teenager, but had chronic illness take over my life as an 18-year-old during my first semester of college.

I have wanted to share my story and journey about being chronically ill for a while now, but I would be lying to say this task of starting a blog has been an easy feat. The difficulty has never come from inability to articulate what has happened in my life. If nothing else, I sometimes have the problem of oversharing. More so, I wasn’t sure if what I had to say on the subject would be received in an informative yet personal way. I have a lot of rare diseases that even doctors sometimes never see. What could I possibly share about this that my friends, family, peers, old co-workers and possible strangers find worth 15 minutes of their day to read?

I am a “medical zebra”

What exactly is a medical zebra though?

The term comes from the idea that when making a medical diagnosis, 9.99 out of 10 times if you hear hooves, the diagnosis is a horse. I’m that 0.01 out of 10 times that hooves actually mean a zebra. I have stuff going on in my body that a doctor may see once in his or her career, if ever. Most of the time I go to the ER the physician has to google my own condition. I actually have to tell the physician what works best for my body in some scenarios. It took us a long time to track this down as well. I’ve been misdiagnosed, written off, had almost every test done, re-diagnosed, and still baffle some specialists and professionals with my diseases. Which is why I have come to realize that I need to talk about this.

I stumbled upon the Morgan Harper Nichols quote at the beginning of this blog post while writing down doctor’s appointments in my monthly planner. (Yes, I am also that nerd who lives in her planner. Just because I am chronically ill does not mean I lost my type A personality.) The quote truly jumped off the page for me.

“Tell the story of the mountain you climbed. Your words could become a page in someone else’s survival guide”

Morgan Harper Nichols

Could my climb be a survival guide?

I wish I had a survival guide on becoming chronically ill as a young adult. Since I became chronically ill my life has been full of never-ending questions. When do I need to see a doctor? Is this a new chronic symptom or am I “normal person” sick? Can I do my classes with this?  How do you register for disability resources? When do I use an EpiPen? Do I need to tell people I am chronically ill? What’s a medic alert bracelet? Do I need one? This medication is supposed to help with what? Will I ever get better? How much Benadryl are you supposed to take in a day? Is this pain normal? What specialist do I need to see next?   

Spoiler alert, there may be obvious answers to some of these questions, but many are still open ended. There is no “one-size fits all” survival guide to being chronically ill as a young adult. But you can learn from other people who have gone through similar things. The mountains I have climbed I mostly have navigated on my own. It’s terrifying, full of a lot of twists and turns, and never linear. If nothing else I am an advocate for rare disease, and another voice to hear for those struggling to grapple with their own chronic illness. 

It’s been 5 years of chronically ill Lauren Michelle at this point, and I am finally ready to talk about it.

Welcome to The Sleepy Chemist.