I am a Zebra: My New Life with Ehlers Danlos Syndrome

Okay, I’m not an actual zebra, but hear me out.

Technically, I am a zebra, an oddity, in the medical sense of the word. If a patient is worried about disorders and has done research about their symptoms on Doctor Google — and while this has, on occasion, led me to fear I had a bad disease — they are often told a simple phrase. That phrase is, “If you hear hoof beats, think horses, not zebras.”

Doctors churn out this expression so much. But zebras do exist, and I am now one of them.

Over the past two to three years I’ve been on what felt like a never ending quest to solving my medical woes. I had migraines, gastrointestinal issues that often don’t appear until a person is in their eighties, chronic pain in my joints and muscles, peripheral nerve damage and loss of muscle function, dizziness, and I’d fallen multiple times with no reason. Not to mention my weight fluctuated from 97 to 85 pounds in a matter of weeks, and this cycle continued for well over a year and a half.

Every test was negative, and at the beginning and for some time while I had all these symptoms, I was told it was all in my head. Even after a neurologist found the nerve damage. I was told, with a shrug and roll of the eyes, by my primary care doctor that plenty of young people have some nerve damage. But he did acknowledge that the other symptoms must all be related, yet he insisted I was looking in the wrong places, wasn’t trying hard enough to deal with the fatigue that, at times, left me so exhausted I could sleep for over 24 hours and still be exhausted because the pain was constant.

I dealt with all of this — the uncertainty, the pain, the condescending doctors, the tests that all left me at the starting point — while studying film, going back to school after already completing a college degree in creative writing in 2012. I took four classes last semester, in the Spring of 2016, and it took it’s toll. I found I couldn’t push myself as much as I used to, and it hurt. I like pushing myself, I like a challenge. I like the sense of accomplishment that comes with looking back at a task that seemed almost impossible or difficult and telling myself I did that. I accomplished that.

Even though I got colds, sore throats, and was in pain almost every day, I went to almost every class, only missing once or twice. I only left early twice. My professors loved my work ethic, and commented on how I was a leader. My video production professor admired that I wasn’t afraid to get my hands dirty, to be in front of the camera and behind the camera, to take charge of a situation where we made a mistake with our video and ensure that we re-filmed and edited it by the due date. I sat my group down, told them it wasn’t the end of the world, we just needed a date when we could all meet. I told them I could do any date, we just needed to figure out when the rest of them could meet. My professor noticed how I took charge. I made Dean’s List with a GPA of 3.75, just like I did in the fall of my junior year at Goucher, in 2010. I somehow pulled my audio production grade — my hardest class — up to a B by doing well on the final exam. I don’t know what happened. It was like, in that moment, my mind suddenly knew everything that a few days before made little sense. I seriously thought I’d get a C- in the class. But I pulled through in the nick of time. Out of four final exams, I got three A’s and one B.

I don’t mean to brag, but I really value the good things now, the accomplishments, since they mean so much more now that I know about what’s at stake. Now that I know I’m not just a smart girl with a pretty face and really cool hats. I’m a smart girl with a pretty face, really cool hats, and perseverance, loyalty, ambition and drive. I’m a zebra and proud of it, because now I can plan a course of action that will allow me to accomplish even more, even though my mind tends to wander into negative territory. I will strive to be positive. I will succeed. I will not become my disability.

I still need to remind myself of that every now and then, but when I can’t or find it difficult, my friends do it for me.

Even though all of those good things happened, I realized I couldn’t take four classes and still function. I needed to practice better self-care. I needed to realize that not doing it all didn’t make me weak. Rather, understanding my limits and doing my best, in my opinion, makes me stronger. Why function on only caffeine and little sleep when you can do your best to stay healthy and do the best you can?

I know my limits now, but I didn’t then. And until a few weeks, the fears still lingered. The uncertainty lingered. The gut-wrenching feeling that people thought I was faking my disability lingered. In fact, my primary care doctor told me I couldn’t possibly be disabled.

However, I can’t fake nerve damage. I can’t fake acid reflux. I can’t fake migraines. Yet, at almost every turn, I was told I couldn’t be in as much as pain as I led on. My primary care doctor had an attitude that reeked with a feeling like this phrase (the latter part added by me), “Young people these days…they think they’re pain is so much worse than others.” While I added the last part, I think it is true, that for young people dealing with invisible disabilities, we are told, time and time again, that we don’t look sick and therefore nothing is wrong or everything is idiopathic.

Idiopathic is a placeholder for “we don’t know what’s wrong with you but don’t want to admit that we are fallible.”

One reason why I like my neurologist is that he’s kind, not afraid of being wrong, he listens and he calmly dispels any fears that are way out of left field (like my fears about MS and Parkinson’s). If I’d had MS, he explained, my MRIs would have lit up like a Christmas tree, my tremors were not like the ones seen in Parkinson’s and my movements weren’t hindered to warrant a diagnosis of Parkinson’s so that fear went away.

But other fears lingered: what if I never get better, what if I can’t live alone or find gainful employment because of this, what if no one finds out what’s wrong or finds a way to make the symptoms bearable. My dad says I focus on the negative. And, in a way, he’s right. I do have a tendency to think negative thoughts, and that’s something I’ve been trying to change my entire life.

I saw a geneticist recently, and I mentioned watching YouTube videos where people advocated for their rights as individuals with invisible disabilities. When I mentioned a particular disease — Ehlers-Danlos Syndrome — my dad told her that I tended to read about my symptoms and come up with a worse case scenario (which isn’t entirely untrue). But I stood my ground. I told her, and my parents, that I’d simply been watching videos where people advocated for their rights, shared their stories, and I was flexible, so I wanted to see if it was a possibility.

She did a quick evaluation. The whole thing took less than 15 minutes. I could hyperextend my elbow, my wrist, my legs are at an odd angle, and I can sit in ways that only Yoga Masters can (Indian style with both legs resting on my thighs, even my hipbone, with my knees almost touching). She then confirmed that I, without a doubt, had EDS. I looked at my dad and said, “Sometimes research is good,” or something like that.

Finally, after four years of suffering, after a lifetime of gastrointestinal issues, spontaneous dislocations of my knees and rolling my ankles constantly, and mental health problems, we had an answer.

And it’s a zebra. I’m a zebra.

Doctors seem to forget that, while sometimes uncommon, zebras exist.

A zebra is a rare disorder, or a disorder that doctors rarely suspect, so they are less likely to test for it. I have type 3, otherwise known as the hypermobility type. I don’t meet the criteria for the classic type, because I don’t have atrophic scars. People with EDS tend to have very stretchy, thin skin (mine is only mildly stretchy and not very thin), they tend to be hypermobile, bruise easily, have chronic pain in the muscles and joints, chronic fatigue and widespread pain and weakness, and are more likely to get osteoarthritis or osteoporosis at a much younger age. We also often need more sodium to help with our blood pressure and circulation,

I am also being tested for a mitochondrial disorder or some type of malfunction of the mitochondrial DNA, which would also explain some of the gastrointestinal and neurological issues, the pain, fatigue, dizziness and balance issues.

But for now, we at least have part of the equation, and I can move forward with physical therapy, pain management, and a high sodium diet and constant hydration.

So, as of last week, I’ve started my journey as a zebra, invisible pain and stripes and all. I’ve fought long and hard to get to where I am today, and I refuse to give up on my dreams of pursuing film because of this.