Disclaimer: This story mentions self-harm and may be triggering to some.
“Hi, I’m Kayla, and I have hEDS (Hypermobile Ehlers Danlos Syndrome.)
Ehlers Danlos Syndrome is a group of hereditary disorders generally affecting the connective tissue and collagen production in the body. EDS is usually characterized by hypermobility, joint instability, and dislocations. Other symptoms of Ehlers Danlos Syndrome include, fatigue, chronic pain, IBS, constipation, stretchy skin, insomnia, sleep apnea, organ ruptures, easy bruising, poor healing, muscle spasms, pre-term labor, and even infertility.
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 deal with IBS, migraines, muscle spasms, dislocations, and the most prominent, hypermobility and chronic pain on a regular basis.
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 8 a.m.- 8:45 a.m. and when 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 seat 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 while 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 mother has been a nurse for over 40 years and has had clients with EDS, so she is familiar with the syndrome and helped me understand what it meant. 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, but 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, and 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, and 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.
Since my diagnosis I have been constantly learning more about EDS. I have since changed my workouts, started physical therapy, and am now taking collagen, vitamin C, and more every day to keep my bones and joints strong and healthy. I do still suffer from most of the symptoms, and most likely will for the rest of my life. I have, however, become better at managing them.
Stretching and working out have become easier for me. The difficult part has been learning when to stop the movement before I hyperextend. Hyperextending often can cause permanent damage and pain later in life. So, while it can be fun to show people the different things I can do, I know I should not be hyperextending purposefully all the time.
On days when my pain is worse than others, I make sure I get rest from the gym, do yoga, and take epsom salt baths to relax my muscles and joints. Another thing I suffer with from my EDS is bunions. They are extremely painful at times throughout the day, and I am currently considering removing them. Until that happens, I continue to use gel stabilizers, hemp cream, and wear shoes that are at least half a size too big to keep my pain as minimal as possible.
My EDS also causes insomnia, sleep paralysis, and debilitating chronic fatigue. I wake up every day feeling nauseous and like I didn’t sleep, even if I slept through the night. I have a very difficult time waking up in the mornings and motivating myself to get ready for the day. On severe cases, my mind wakes up before my body, thus entering sleep paralysis. I have had sleep paralysis my entire life, so I know when I enter it and have been able to get myself out of it quickly on some occasions. On days when I wake up in sleep paralysis, it tends to send the rest of my day into a downhill spiral and is one of the scariest parts of my EDS.
Another thing my EDS affects is my relationships. I often cancel plans or skip social events because I am too fatigued, hoping that my friends and co-workers don’t think I’m lazy or over-exaggerating when I talk about my pain. I’m scared that my anxiety will be too much for people and they won’t want to hang around me. I have a lot of self-doubt when it comes to friendships and relationships, so I try to stay out of everyone’s way and not accept help from anyone. I am learning to trust that the people around me like me for me. That they want to be a part of my life. I have had a lot of hard moments, but also definitely a lot of growth.
Living with EDS was challenging before getting diagnosed, and finding out about it just caused a whole new set of challenges. I will say, educating myself in how I can control my symptoms continues to increase my confidence, health, and quality of life every day.
My family has been nothing but supportive since my diagnosis. Since my mom was already familiar with EDS, she has been able to help me a lot with workouts and supplements I should be taking. We found an EDS clinic in Houston, Texas that I will be visiting later this year to talk to some of the EDS specialists about bunion removal surgery and other treatments. None of my other family members knew what EDS was, and I am the first known person in the family to have it, but they have all gone out of their way to become educated about it. My family is very understanding of my symptoms and pain, and always do anything they can to help me out when I need something, even if it is just a shoulder to cry on. I am very thankful for the family I have and for their nonstop love and support.
Since getting diagnosed, 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.
There are 13 different types of Ehlers Danlos syndromes, you can read more about them from the EDS Society website. If you or someone you know suffers from EDS, know that you/they are not alone. If you would like to connect with others who suffer from EDS, the Ehlers Danlos Society hosts online support groups through Zoom.”
This story was submitted to Love What Matters by Kayla Cates from Nashville, Tennessee. You can follow her journey on Instagram here and here and on her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
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