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CW: Contains discussion of self-harm
Growing up I felt unique and different; I used to always freak out my friends by hyperextending my elbows and thumbs. I had no idea what Ehlers-Danlos syndrome was, nor did I know how it was going to affect my life in the future.
I went to college at Christ for the Nations Institute in Dallas, Texas. I was working as a waitress at Pappadeaux Seafood Kitchen, and finally got hired as a personal trainer in the gym at my school. As finals were approaching, I took a break from studying to spend Thanksgiving with some good friends, and spent the weekend at the mall by my school and working.
Monday morning, finals week. I ate breakfast as normal and prepared my uniform for work, grabbed my backpack, and headed to class. The first class of the day was always worship. We praised Jesus from 8am-8:45am and the bell rang, it was time to go clock out of worship, and clock in for first period. As I was walking to my seat I saw a friend of mine heading to his class, I turned around to say hi to him right before getting to my desk, and fell. At that moment I felt the most excruciating pain I had ever felt. My friend walked me to my seat and prayed for me, then went to class. I started writing down notes, as my professor was going over the review for our final. As tears were falling onto the page, I decided to limp to the bathroom and call my mom.
“Mom, my knee cap came out of place, I don’t know what to do, it hurts so bad.”
She recalled the times I had complained about my knees giving out on me in the past and said, “I wonder if you have Ehlers-Danlos.”
I had no idea what that was and I’m pretty sure I asked her several times during that phone call to repeat the name. My dad picked me up from school and took me to the emergency room. I was on crutches for two weeks while they waited for the swelling to go down, it never did. I was sent in for an MRI and discovered that the bottom of my femur was broken off and stuck underneath my kneecap. I met my surgeon the next day and he asked me if I had had genetic testing for Ehlers-Danlos. I told him I hadn’t, I had only just discovered what it was.
My first surgery was on December 19th, 2019, my second surgery was on October 1st, 2020. I have been in physical therapy for over a year now. I had so many plans for school and for myself, all of which ended up being canceled as I was in a wheelchair for several months. I became so discouraged, I am an athlete and spend several hours in the gym each day. Sleeping became very difficult for me since my body was not exerting the energy it was used to, I was sick from pain medication I never thought I would need. I became depressed and was mad at my body, I began to self harm out of frustration. My life completely flip-flopped on me.
It took me a while, well after my second surgery, to see value in myself again. I began to focus on the positive instead of the negative, and see the good things that have come from this. Since being diagnosed with hypermobile EDS (hEDS) I have been studying nonstop trying to learn more about it. I am a personal trainer and am working on my Corrective Exercise Specialization. I am determined to provide top tier quality program development for any future clients I may have with EDS.
People told me to change my career because I couldn’t demonstrate the correct form for every single exercise, or thought I would hurt myself too much. Being diagnosed with EDS, however, encourages me every day to learn more about how to take care of my body, exercise, and eat right, and motivates me to be the best fitness professional I can be.
I started a blog, a YouTube channel, launched my personal training business, and released a self-monitoring journal to help others on their healthy lifestyle journey. Ehlers-Danlos will always be a part of who I am, but I will not let it define who I can be. I am not discouraged or afraid. My legs still may not be the same size, I may not be through physical therapy, I may not have had my last surgery. But I will never give up on healing my mind, body, and soul.Tags: advocacy, Athlete, hEDS, hypermobile EDS, movement
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