It's Official: I'm a Zebra

Some of you may have noticed that I haven't been posting too much lately. Part of that is due to law school, which can swallow my life whole for periods of time, but part of it is also because I'd been busy preparing for my appointment with a geneticist. I had scheduled it nearly six months ago after searching for around three years for a doctor who was educated on the types of issues I was having, and yesterday, September 26th, 2012, was the big day.

At 7:30am yesterday morning, my boyfriend and I woke up, threw on clothes, grabbed my medical records, and boarded the train that would take us into New York City. We got off at Penn Station, grabbed a cab, and headed about forty blocks uptown to where I was seeing the doctor. We waited anxiously in the waiting room, I had some baseline measurements taken by a nurse, and then we were taken in to see the doctor. After almost two hours of extensively questioning about my medical history, my current health status, and my family and their health, plus a lengthy physical exam, the doctor told me what I'd suspected for at least a few years:

I have Ehlers-Danlos Syndrome.

 

It's weird for me to say. I have so many emotions about it right now, some which I think I was prepared for and some I wasn't. After years of suffering, I expected the news to come as a relief. I wanted to know; I wanted to finally be sure. I wanted an answer to the question I'd long been asking myself; I wanted to know what was wrong with me. And I got my answer.

 

In many ways, it is a relief. I'm an extremely honest person, but my symptoms, over the years, have led to people constantly questioning me, be they friends, family members, teachers, or others. Hardly anyone believed me when over and over again, I injured my joints, and over and over again, they failed to heal within any remotely normal time frame. I was cyber-bullied by classmates who thought I was faking it for attention, and I was given a hard time by teachers who didn't want to bother affording me the accommodations I needed. Doctors periodically wrote me off as overly emotional and dramatic, clearly just a hypochondriac.

 

I wasn't a hypochondriac. I didn't want attention. I wanted to heal. I wanted doctors to know what was wrong right away and be able to fix it. A lot of the time, I felt hopeless and extremely depressed. I wondered if everyone else was right, if I was just that crazy girl who thinks she's hurt all the time. I tried not to allow myself to get into that mind frame, and I constantly fought to find someone who would understand, to keep my head above the water until someone could figure out what the hell was going on with my body, why it was betraying me in the ways it had.

 

There's a saying, apparently commonly taught to medical students: "When you hear hoof beats, expect horses, not zebras." It's meant to serve as a reminder that there are common, simple causes for a lot of symptoms; that rarer diseases and conditions are rarer and generally shouldn't be given a lot of thought until all other "normal" causes are ruled out. In many ways, that's true, but at the same time, I wish more doctors would remember that "zebras" do exist. There have been so many signs that I was not the typical medical patient - that I had something distinctly abnormal going on - since before I was even born. Growing up, I had so many medical problems, but because they didn't result in death or extensive hospitalization, I was written off by most in the medical community. I've encountered a slew of doctors that have never even heard of Ehlers-Danlos Syndrome for every one that has believed me, and I have suffered immensely for it. If I could go back in time and educate my doctors about the condition, I probably could have avoided - or at least delayed - the exhaustion of my ankles. I could have limited my involvement in activities that were more likely to be detrimental to my health only because of the condition. There are so many could-have-beens that it's hard not to think about.

 

However, in the immortal words of J.K. Rowling, "It does not do to dwell on dreams and forget to live." This is my life. It isn't perfect, but in so many ways, it is still beautiful and amazing and all my own. It is, at the moment, enough.

 

I will be writing more about my experiences with and symptoms of Ehlers-Danlos Syndrome in the future, but at the moment, I'm taking some time to process my diagnosis. Additionally, I will at some point be undergoing further testing in order to determine which type of EDS I have. The Hypermobility type is most likely, but it's possible I have Classical or Vascular, though Vascular is definitely less likely. This will not turn into an EDS-exclusive blog, if you're worried, though having EDS will undoubtedly influence many of my posts.