Lindsay’s Story: What It’s Like to Live with Myositis
Journalist Lindsay Guentzel offers an inside look at life with the rare muscular condition.
By Lindsay Guentzel
I joke that I always wanted to be special, but all this? It’s a little much.
When I first got sick, my symptoms showed up in such dramatic fashion that it was hard for anyone to ignore what was going on. Every morning, I’d get out of bed like a kid on Christmas, just waiting to see what Santa had brought me. Except this wasn’t a gift and instead of beelining for the tree, I was running straight for the bathroom mirror to see what had popped up overnight.
It wasn’t pretty.
May just so happens to be Myositis Awareness Month and if you didn’t know that, or if you’re looking around worried that you’re the only one who doesn’t know what myositis is, I promise you you’re not alone. According to The Myositis Association, an estimated 75,000 people in the US have a form of myositis, what’s also called inflammatory myopathy.
“One of the most important things I’ve learned is that this beast shows up differently for everyone. ”
75,000 people is a decent sized suburb here in Minnesota.
In the last year, as I’ve started to sort out my own diagnosis, one of the most important things I’ve learned is that this beast shows up differently for everyone. Which makes the diagnostic process so incredibly difficult.
What’s the saying about being in the same storm but different boats? While I imagine it applies to all medical conditions to some degree, it really rings true for rare diseases. We may have the same diagnosis, but our boats? They are wildly different.
Last week, I spoke to a group of pre-med students at the University of Minnesota about being diagnosed with a rare disease and in preparation, I asked a couple of the online myositis support groups I’m a member of if they wouldn’t mind sharing what their first symptoms were.
I got over 60 responses. None of them were the same. Which brings me back to all those Christmas mornings. Where I woke up with so much facial swelling, I looked like a Real Housewife who’d fallen victim to some really bad plastic surgery. I was unrecognizable.
Guentzel at the onset of her facial swelling in January 2023 (left); and hours after being discharged from the emergency room three weeks later (right).
I’ll let you guess how many doctors saw the facial swelling and thought, I bet she has dermatomyositis.
Obviously, it’s much more complicated than that but having been a relatively healthy person prior to my diagnosis, I’m here to tell you—the U.S. healthcare system? It is nothing like Grey’s Anatomy. There were no teams of people rushing around, trying to solve my medical mystery. There wasn’t some resident prodigy combing through my labs to connect all of the dots that no one else was seeing. Our healthcare system takes so much time. Which is an incredibly cruel and unusual form of punishment when you are sick and no one can tell you why.
I was diagnosed within two months of first getting sick which I consider to be a complete and total miracle. Despite all that medical training I’d undergone watching the first eight seasons of Grey’s Anatomy (they lost me after the plane crash episode), I hadn’t considered that my doctors might be talking about me when I wasn’t around. That the hustle and bustle portrayed in medical dramas is mostly just that, a dramatic portrayal. I can go back now and see it all unfolding in my notes—Dermatology reaching out to Gastroenterology who reached out to Rheumatology to confer about ordering the autoimmune antibody panel that inevitably led to me not only getting a semi-formal diagnosis but also moved up my appointment with Rheumatology by five months.
It was without a doubt the most exhausting, mentally and physically taxing two months of my life and every time I jump into one of those myositis support groups, I’m reminded of how lucky I am. Because I had—and still have—a team of doctors who have fought for me since day one.
Shout out to Dr. Liu, Dr. Powell and Dr. Ngo—my own little rare disease diagnostic dream team.
I’m constantly asked, “what’s been the hardest part of your diagnosis?” And my answer is always the same. It is so much work. Managing a complex medical condition isn’t for the faint of heart. It takes time and a level of organization that would surprise even the most coordinated go-getter. And don’t even get me started on the self-advocacy portion. No, there isn’t a manual. No, there isn’t a to-do list to follow. And no, in most cases, no one is coming to save you. You just have to get it done.
I’ve heard it more times than I can count, and I’m sure that number will just continue to grow: some variation of “I don’t know how you do it.” Here’s the thing: You won’t know what you’re capable of until you’re there.
Lindsay Guentzel is a journalist, writer, producer and podcast host, living and working in Minneapolis, Minnesota. Her rare disease journey started on January 11, 2023 while out on a hike in Sedona with her boyfriend John. It took countless doctor’s visits, emergency room trips and blood draws for her to find out she is positive for the Anti-Jo1 antibody, a myositis specific autoantibody.
She is currently being treated for Dermatomyositis, Interstitial Lung Disease, Mechanic’s Hands, along with Sjögren's Syndrome, Carpal Tunnel Syndrome and ADHD.
