I don’t even know where to begin with this entry, but here goes…
Almost precisely a year and a half later from my first femoral neck fracture, I have answers (three hip fractures later)…and finding out is the most bittersweet experience I’ve ever had.
Earlier this week, I visited a hip-joint specialist upon referral from my orthopedic surgeon. He thought I may suffer from hip dysplasia but wanted a second opinion from someone who specialized in hips. So, off to my 10th doctor’s appointment in three weeks where seemingly a billion tests were ran on me.
Instead of hip dysplasia (which I knew a little about), I was diagnosed with a rare genetic condition: Ehlers Danlos Syndrome. This condition has been responsible for my hip fractures and my inherent inability to heal properly.
When the doctor said the name of the condition, I stared at him blankly. I can’t even begin to articulate being diagnosed with a syndrome you have never even heard of. Utter confusion is a start.
He went on and on about how severely I exhibited symptoms of the disorder – how my numbers were off the charts and unlike most he’d ever seen (and he’s the leading specialist in the condition). How is it possible that I’ve had all these symptoms and traits all this time…and didn’t know what they added up to? Am I not aware of my body and others enough to know that some of the things I possesses (like my weird flexibility and stretchy AF skin and double jointed-ness and the fact that my ankle joint can pop in and out when I move my ankle in circles) are not “normal?” How could I be so familiar with these symptoms…and not whatever this condition is?
The doctor proceeded to explain the diagnosis to me – assuring me this was good news. I had answers, I didn’t need surgery! All I needed was a simple (read: major, life-changing, etc.) lifestyle change. I have to stop running. If I don’t, my hip (and possibly other bones) will keep fracturing…and when it fractures to the point of a break, I’d have to have invasive surgery that would require bone grafts (based on this condition). My body can’t support my hobby, my love, my identity, my life.
He explained that I may have issues when it comes to giving birth (this was gross to squeamish me, so I’ll stop there) and some heart issues later in life, but otherwise, his main point: no running whatsoever and no walking/hiking past 20 miles. I’m fragile.
I sat there staring at him, feeling about fifty emotions at all once. My initial thought was: I’m so glad I was an advocate for my own health and kept insisting something deeper was at work than just running. Now I have answers and can prevent this horrible pain again! My second thoughts followed immediately: Wait, what? You’re telling me I can’t run. I’m not happy at all, now. But…I don’t even want to screw around and run…because hip pain and the inability to walk is worse. To put it lightly, my emotions were at odds; I was relieved that I finally had an answer and a cause, but I was simultaneously really upset.
In this moment, I knew my life was going to drastically change. For me, it is not just simple lifestyle change. It’s monumental. It impacts almost every area of my life and my entire identity and my entire community.
How am I supposed to stay healthy? Yoga is fantastic, but it’s realistically not going to burn a ton of calories. I don’t have a bike (nor can I afford one), I HATE swimming with a passion…and ellipticals are on the same level as a treadmill. What other options do I have? What’s going to give me the same high and the same health?
Who am I outside of a runner, outside of being an athlete? Where do I fit in? What am I going to do with the rest of my life? How do I continue to be a supportive friend to my runner friends without turning into a bitter asshole?
How am I supposed to return to November Project if all I have is injury deck…forever? There’s no end goal. Where do I belong? I know I have an amazing support system, but I don’t have anyone who understands exactly where I’m at, what I’m feeling. And I need that more than ever now. Beyond that, I don't know if I can listen to so much running talk - when I know that it was just ripped from me based on my DNA. Star-crossed lovers, running and I.
Mostly, I wasn't ready for this chapter to be over.
Amidst all of this, don’t get me wrong. I am happy. I am relieved. I am thrilled I stood up for myself. I am thrilled I kept pursuing specialist after specialist. I am happy I can prevent this. I am happy my hip fractures are no longer a mystery.
But, the hurt and heartbreak with being told that I’m fragile…well, that almost overrides it. Not to mention, the fear that Google searches of Ehlers Danlos has instilled in me.
At this point in time, I'm still researching my Ehlers Danlos, looking at other fitness options, leaning on my friends for support..and trying to guess at what my new normal is.
All I have wanted over the last 18 months is an answer, a reason why, an explanation for “why me?,” and now that I have it...I truthfully don’t even know where to start.
**Update: ...and I have another two weeks on crutches - after just 1.5 days without them.