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Having a Baby Helped Me See My Disease in a Whole New Way

When I found out in January, 2015, that I was pregnant, I immediately knew that I wanted to incorporate zebras into our crib theme. It was the first thing that came to mind, and I began the hunt online for unique zebra items. Why the zebra? Well, I am a medical zebra – a title that doctors gave to me and I’ve embraced wholeheartedly because I had no other choice.  

The zebra is the awareness animal and ribbon print for a rare genetic chronic pain disease called Ehlers Danlos Syndrome. I was diagnosed with the disease in 2012, and, just as no two zebras have the same stripes, this disease affects each individual differently.

Medical students are told, “When you hear hoof beats, think horse, not zebra,” meaning that the most common diagnosis is usually going to be the right diagnosis, just like a cold virus is likely the culprit when someone has a runny nose. In my case, this meant that it took over twenty years to find the true reason I had health issues. Doctors kept trying to diagnose me as a horse, when I am, in fact, a rare zebra.

I made it my mission to educate myself as much as I could about my new diagnosis, and I tried my best not to feel overwhelmed by it. When the doctors told me that I most likely would not be able to get pregnant, it was a heavy pill to swallow. I had devoted my career to early childhood education and always imagined I’d be a mother, myself, one day. This was devastating news to hear, but at that point, I even thought to myself, “Maybe this is for the best.” My body had been through a lot of trauma by that point, including a near death experience with necrotizing faciitis. Since Ehlers Danlos Syndrome is genetic, I had a 50% chance of passing it along to my child.

After struggling so much because of this disease, I understand why other zebras decide not to have biological children of their own. Fifty percent is a high probability, but it was one I had to face a year later, when we learned that I was, in fact, pregnant!  My spontaneous pregnancy after fighting such a huge health battle the year before was a sign to me that this baby was meant to be, and, after taking time to digest the news and its implications, I embraced my pregnancy with excitement and optimism.  

When I was diagnosed with Ehlers Danlos Syndrome, I slowly increased my zebra purchases from shirts and socks to leggings and even plates. My family also started giving me fun zebra-themed gifts, which I treasure. Once I was pregnant, my friends and coworkers threw me a zebra- themed baby shower complete with a sign, balloons, and gifts. I was surrounded by zebra love, and this was an entirely new way for me to see the zebra, with positive connotation.  

May is the awareness month for Ehlers Danlos Syndrome, and it’s probably not a disease with which you’re familiar, which is exactly why I wanted to share my story. This disease is a central aspect of my life, and it causes all types of challenges, pain, and complications, even though they may not be visible to you. If you saw me on the street, you would never know the battle I am fighting. This is true for so many diseases, and, sadly, people are quick to judge.

However, I am a mother first, and I will always be a mother first. I struggle on the bad days, just like any mother does with toddler meltdowns and sleep regressions. As moms, we are all in this together, despite our individual struggles, so it’s important that we are supportive of one another. The next time you’re at the zoo, and you go to see the zebras, remind yourself that there are zebras walking among you, too. They are silently carrying on, wearing their invisible stripes.

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One Response to Having a Baby Helped Me See My Disease in a Whole New Way

  1. Inger
    Inger May 22, 2017 at 10:16 am #

    Excellent article Nicole. I’m so sorry to learn of your struggles with this terrible disease. What a great reminder that so many of us are dealing with issues great and small that others may be unaware of. We all need to practice compassion and support each other.