"The Girl Who Cried Zebra"

When most of us were children, we heard Aesop’s fable “The Boy Who Cried Wolf.” Adults read us this cautionary tale to discourage us from lying, and from this fable, we learned that if you lie that you are in danger to get attention, no one will believe you when you are truly in danger. No one wants to be “The Boy Who Cried Wolf.” We all want to be believed and taken seriously, especially when we are telling the truth.

“The Boy Who Cried Wolf” was a story of my childhood, and “The Girl Who Cried Zebra” was a story of my adolescence. Ever since I can remember, I have suffered from chronic pain and fatigue. Even as a little girl, running around the playground was difficult, and riding bikes hurt. I would always get tired faster than my peers, and I preferred staying inside and reading to going outside and playing sports. For most of my life, I thought maybe I was just weak, or even lazy, but when I started puberty, I knew something serious was wrong.

While it’s normal for girls’ bodies to go through changes when they reach adolescence, it’s not normal for Them to develop chronic and debilitating symptoms. Doctors assured me that my pain and joint dislocations were just “growing pains.” They tried to convince me that my fatigue was just caused by depression or stress. They said that my gastrointestinal symptoms were just manifestations of an eating disorder. They told me I was fine, that nothing was wrong, and that I would feel better soon or grow out of it. I didn’t feel better soon, and I didn’t grow out of it. Even though I knew in the back of my head that something was wrong, I began to doubt myself. My doctors dismissed me so quickly and often that they almost made me believe that I was being overly dramatic or faking my symptoms.

Years later, my symptoms had progressed to the point that I knew something was wrong for sure. Maybe it was because I was getting older and becoming more sure of myself, or maybe it was because I could not continue to ignore the fact something was wrong with my body, and it was worsening as time went on. In fifth grade, I had to start wearing orthotic arch supports in my shoes because of severe pain, and realized that I had “bad knees.” In sixth grade, I had to teach myself to write with my left hand, because crippling pain in my dominant wrist left me unable to. In seventh grade, I had to stop playing tennis, a sport I had just started playing and fallen in love with. In eighth grade, I developed chronic back pain that I knew was not “normal” for a 15 year old girl. In ninth grade, my gastrointestinal issues worsened to the point that I had started rapidly losing weight and could not eat most foods. In tenth grade, I started experiencing dizziness and fatigue so severely that it was difficult to walk or stand at times. By this point, I had been wearing support braces and taking over the counter pain medicine to be able to make it through each day. Each year, I had more health problems, and I was able to do less and less. At a time when I was supposed to be discovering who I was, I felt like I was losing myself. I was still able to go to school and continue with most “normal” activities, but everything I did was painful and tiring. I saw my peers go about their daily activities with ease, and I knew that it was not normal to feel as bad as I did every day.

When I was about 16, I discovered that I was a medical zebra. Thanks to my pediatrician who suspected that I may have Ehlers-Danlos Syndrome, I was finally able to put the puzzle together that I had been trying to solve for the past few years. Although I did not receive an official diagnosis of Ehlers-Danlos Syndrome from a geneticist until two years later, the day my pediatrician suggested that I could possibly have the illness, I knew that I had finally found an answer. That night, my mom and I went home and Googled Ehlers-Danlos Syndrome, which is more commonly known as EDS. After reading descriptions of the illness online, I knew that I had EDS. You would expect finding out that you may have an incurable, progressive, chronic illness would be traumatic, but the truth was, I had already been experiencing the trauma of the illness. I was already experiencing debilitating symptoms and watching my health decline day by day. Learning that I may have EDS was a confirmation that everything I had been going through was not just “in my head.” I’m pretty sure I cried tears of joy that night. (I’m holding back tears as I write this, remembering how much this moment meant to me.)

From then on, I made it my mission to learn all I could about EDS to understand it, and determine if I did in fact have the illness. As is the case with most chronically ill people, I still had to fight for doctors to believe me, diagnose me, and treat me after that point. And even thought I was pointed in the right direction, I still struggled to find information and resources about my illness. While I found general information about EDS from the National Organization for Rare Diseases and the Ehlers-`Danlos National Foundation (now known as the Ehlers-Danlos Society), I struggled to find a website that had comprehensive information and resources related to EDS. I finally encountered EDSers United, a website that was a sort of a “one-stop-shop” for information and resources regarding EDS.

Nadia Bodkin, who I now consider a mentor, founded EDSers United shortly after she was diagnosed with EDS. In college at the time, Nadia struggled to find accessible and comprehensive information about EDS online. So, she founded EDSers United to give EDSers a sense of community and accessibility to resources and information that had been missing. While the Ehlers-Danlos National Foundation and other organizations for EDS existed at the time, these organizations lacked a sense of cohesiveness and community. Nadia filled that gap within the EDS community with EDSers United. Recently, EDSers United has become focused on developing the Wellness Institute for Rare Conditions. Her work with EDSers United has helped shaped the way advocacy organizations operate, and now, her goal is to "conduct and support basic, clinical, and translational medical research, and to investigate the causes, treatments, and cures for rare genetic conditions." Nadia has a bachelor's degree in nutrition, a master's degree in genetics, and a doctorate in pharmacy. Her background in the medical profession has helped her be diplomatic in her advocacy, as well as given her valuable insight and connections to the medical side of EDS advocacy.

One day, I hope to become an advocate for EDSers like Nadia. My desire to raise awareness for EDS and advocate for those affected by the illness stems not only from my personal experiences, but also from my frustration of the systematic problem the medical field has in diagnosing invisible illnesses. Knowing that many people with invisible chronic illnesses have experienced and will likely experience similar hardships in receiving a diagnosis and adequate medical care, in addition to the burden of living with a chronic illness, is unacceptable to me. Over the past few years, I’ve learned that I can’t control my illness. I must admit, this lack of control over my life and my future is terrifying. In fact, it’s the thing that scares me most about being chronically ill. Turning this fear, frustration, and resentment I have towards my illness into advocacy has helped me gain some of that feeling of control back. I know that (unless scientists find a cure), I will have EDS for the rest of my life, and it will most likely continue to get progressively worse as I age. While I don’t have a say in how my illness affects me, I do have a say in how I respond to it. I may not have the resources to cure EDS myself, but I have realized that I do have the resources to be a voice for EDSers.