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LAUREN'S STORY

Hi dazzle! (Read til the end, sparkly zebra friends)

I’m Lauren, a 26 year old adult ammy living near Boston. I’m a copywriter for a fashion company by day and an eventer/wannabe DQ by night and weekends. Or as I joke, my other full-time job is keeping my horse alive and happy.

Today, February 28, is Rare Disease Day, and this post is about mine.

"When you hear hoofbeats, think of horses, not zebras."

This quote is often taught to medical students to remind them not to jump to a rare condition when a common explanation is most likely. Basically, another version of “if it walks like a duck…” 

But sometimes, it really is a zebra. And I’m one of them.

The story of my stripes begins around age 8. It was then that I started my battle with depression, which I hid until the end of high school. I had the whole nine yards: I was suicidal, self-harmed, had anxiety and panic attacks, and developed disordered eating. Although I saw a therapist and tried different medications, it wasn’t until midway through my sophomore year of college that I found the right medication. From there, I was able to truly start the road to recovery.

Three years later, I walked out of CVS clutching a prescription bag, and sat in my car crying tears of happiness looking at the ‘50 mg’ on the bottle—my psychiatrist and I had decided that I was stable and recovered enough to no longer need a 100 mg dose. I thought, I beat it. I really beat my depression. I don’t have a monster controlling my life anymore. 

So it felt like a cruel joke when I heard the words “you have Ehlers-Danlos Syndrome” in late 2017.

This wasn’t something that would go away. I had had it since I was born, and I would have it for the rest of my life.

But at the same time, I was relieved. I wasn’t crazy. Years of doctors brushing off my concerns, like my extreme ankle pain as “just flat feet” or debilitating digestive problems as “just IBS,” made me doubt I’d ever have an answer. You know when Ariel goes “I've got whozits and whatzits galore?” I was like that. But instead of thingamabobs, I had symptoms. Symptoms on symptoms on symptoms. And I hadn’t even considered that they were related until I had surgery for pelvic organ prolapse in 2015. Honestly, I was so used to them and to having doctors downplay their severity that I thought it was normal... because it was my normal. (True story: before I got glasses when I was younger, I thought everyone saw like I did. My mind was blown when I realized that the world was not actually made up of blurry blobs.)

My surgeons suspected there was an underlying condition that caused my organ prolapse (in non-medicinal terms, my organs weren’t in the right places/trying to fall out of my body. Fun times.) as it’s very rare in younger women. It wasn’t until post-op, however, that my PT would scribble down a condition’s name on a piece of paper and send me down the path to having my life turned upside-down. 

I remember googling that name, ‘Ehlers-Danlos Syndrome,’ thinking it would be another dead end. Instead, I found my eyes widening in disbelief as I kept reading. It was describing me, explaining everything. But I didn’t want to get my hopes up, and put off seeing a doctor, because 1. Who really wants to be diagnosed with a genetic disorder and 2. I had been down the promising-but-ultimately-fruitless diagnosis road before.

I wish I could say I was smart and pursued further, but I was stubborn and put it off. It wasn’t until I fainted at work over a year later and got diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) that I said OK. I should prooobably make that appointment with the geneticist. Because guess what’s a common comorbidity (disorders that occur together) with POTS? EDS. And surprise! Veins are made of connective tissue, and thus people with EDS often have blood pressure issues... like POTS.

And that’s how finally, at age 25, I got formally diagnosed with my second ‘big’ health condition, just as I had put the first behind me. I got one answer only to simultaneously be deprived of others: there is no treatment for EDS, only management. And that management is largely a guessing game for doctors, as it’s a relatively rare disorder. But, having that one answer, having my symptoms and pain and struggles validated with the addition of “Ehlers-Danlos Syndrome” to my medical file, meant the world to me.

If there’s anything living through depression and living with EDS taught me, it’s to be an advocate—not just for yourself pursuing treatment and answers, but to break down stigmas and be a voice for those still struggling. Don’t let circumstances or conditions beyond your control define you, but let them shape you. Let them make you stronger. Besides, didn’t you know that a group of zebras is called a dazzle? We shine pretty damn bright.

Love,
Lauren 

Ps. If you’re curious about EDS or have questions about mental health, I’m an open book! Shoot me a DM on Instagram or Twitter at @eventingenzo, where I chronicle the misadventures of my drama llama/Thoroughbred (who coincidentally also has a rare condition).