Day of the Zebra ~ January 31
For those of you who don’t know, today is International Zebra Day! This may seem like an odd thing for me to be excited about and writing a blog post on, but today has special meaning for me. (And no, it’s not because zebras are my favorite animal. I love turtles, in case you were wondering.)
Today is very significant for me because I am a zebra.
I have something called Ehlers-Danlos Syndrome (EDS), which is a genetic disorder. More specifically, I have the most common type of EDS associated with Hypermobility (hEDS). hEDS is the only type out of 13 forms of EDS that does not have a genetic test. This type affects both large and small joints. Dislocations and subluxations of the joins are a common problem, and many issues with the skin (including strechiness, fragility, bruising, and scarring) may also present themselves. Many people also struggle with musculoskeletal pain that can be debilitating. These symptoms vary in severity depending on the person and present themselves uniquely in each patient. (Special thanks to my friend, Trina, for sharing some of this information on Facebook yesterday.)
We are called zebras because of a saying in the medical field “when you hear the sound of hooves, think horses, not zebras”. “Zebra” refers to a rare disease or condition. This statement is taught to medical students as they go through their education, teaching them not to assume the worst in patients and to instead search for a more common issue. Because of how rare EDS is and the way it presents itself, patients are often misdiagnosed or struggle to reach a diagnosis. Zebras are recognizable when they are found, but each of us has different stripes and patterns (which is the way EDS presents itself in our bodies).
Now, I am not going to write this post recapping my health journey, and I am not going to write it to “raise awareness” in the way most people might. However, with today being so significant for EDS, I would like to take the opportunity to briefly share my testimony and the way God has walked beside me through my health journey. (I could probably write a small novel about my health journey, but I won’t bore you too much with details.)
For several years I have battled two different health issues. The first is called Bartonella, which is an autoimmune disorder similar to chronic Lyme. The second is, as previously stated, EDS. After these disorders began to present themselves in my body, I went through over a year and a half of doctors visits with multiple specialists at three different hospitals, found out many new things about my body and the way these disorders affected it, and struggled with extreme frustration. Finally in 2017, after almost two years of stumping every doctor I saw, I was told I have EDS.
The day I was told I had EDS was one of the best and hardest days of my health journey.
I was so relieved to know, but it was hard, because EDS does not have a “treatment”. Because it is a genetic disorder, and because it presents itself so differently in each patient, each person that has it has to basically deal with it and learn what to do to keep symptoms to a minimum. For me, this means watching my stress levels, making myself rest, and working out daily in order to keep my body strong. It also means praying for healing every chance I get.
As I walked through the time of not knowing what was going on with my body, I struggled a lot. I isolated myself from people, struggled with my identity, and dealt with frustration every day because I didn’t understand why I had to deal with so much pain each day. It was confusing, irritating, and exhausting.
Isn’t it beautiful, though, how God meets you where you are in those seasons?
Admittedly, I pulled away from God during that time. It was extremely upsetting to be prayed over constantly but never see healing. It was angering to go through every day with pain and not understand why. I wish I would have seen how desperately I needed Him in that season.
He was with me through it all, even when I didn’t see it. He placed wonderful nurses in each hospital to help, even when the doctors were irritating. He helped some doctors find some pretty significant things that could have been easily missed. He placed a desire in my heart to enter the medical field and help others like me. He brought people into my life that supported me and are now some of my closest friends. And most importantly, He is healing me.
Today, I still struggle with joint pain and other issues, but God has helped guide me to finding ways to minimize it. I haven’t visited a single doctor for my health in over a year (praise God!). On the days my symptoms flare up, He has blessed me with jobs and school that are flexible and can offer me a chance to rest. I also am truly learning and experiencing the incredible love of the Father every day. He has guided me into a place of rest filled with His Spirit. My relationship with Him has strengthened more than I could have ever imagined, and He has given me a desire to strengthen it more and more every day.
I am on the pathway to healing. And I am believing there will be a time in my life I will experience total healing in every area.
I am so blessed to be in a place now that I feel comfortable sharing my story, even though I am still writing it. Although it has been hard, I am so thankful. I hope that by sharing my testimony and thanking God for His faithfulness, I can encourage others and help share the hope that God has given me.
I want to spread awareness, not to make people feel sorry for me, but to create a community of support, encouragement, and prayer for those that also struggle every day (with EDS and anything else). My prayer is that a “diagnosis” will become a testimony for someone else in the same way mine did.
More than anything, though, I want to thank God for everything. For His healing, hope, joy, faithfulness, and everlasting love which have been with me every moment over the years.
Thank you, God, for creating me so perfectly. Thank you for making me a zebra.