Hi, I'm Lyndsey and This is My Story
I was always the 'sick kid'. I missed so much school, letters were sent home. I had snacks and advil on hand in my elementary school office. I couldn't run or do anything physical without having joint pain or having a migraine. Good thing I was never a sporty person anyway! I had many drs. appts over the years and test after test none of which ever showed anything. Finally, at 17 yrs old, I was diagnosed with Hypermobile Ehlers-Danlos Syndrome. For the most part, my EDS has been pretty mild. Many people suffer from dislocations, but fortunately I have yet to experience one. As a kid, I had few hobbies. I've always been the singer of the family and the horse girl. I loved being outside exploring, riding four wheelers, and finding cool rocks/bugs to take home. EDS didn't stop me from doing what I wanted to do until 10th grade when I decided to cheer for football at my highschool.
I’ve missed practices, had a migraine developing almost every time I ran, but the last straw was when I got a staph infection from the cheer mats. I missed so much, I was so far behind in what I needed to know, and I had to quit. That was the first time I was really upset about my illness stopping me from doing something I enjoyed.
For 11th and 12th grade I went to a trade school for Veterinary Science. I was in the FFA, I showed a rabbit in my local county fair. I finally had real friends ( I've always had a hard time making friends) and my health was okay for a while.
Then, my senior year I had a couple episodes of strange symptoms...skin burning so badly that even a sheet touching me was pure agony, my arms went weak for a couple weeks and I couldn't drive to school or open doors for myself. I remember thinking, "Man, I hope this never happens to my legs!" Those episodes came only once and nothing came of them until a few years later.
I graduated highschool and went on to work at a vet clinic. I moved out of my parents house at 19 and I was in college for vet science until I realized that lifting animals was hard for me. I decided to get STNA certified...which wasn't the greatest idea because lifting humans isn't any easier. I then went on to get Phlebotomy certified. I worked as a phlebotomist for a few months before I got pregnant with my daughter, Olive, at 20.
About 4 months into my pregnancy I started having unusual weakness in my legs. Knee braces became a staple in my wardrobe. My doctors weren't concerned at the time because of my EDS and the fact that your joints get more flexible due to hormone changes. My intuition told me something else was to blame, so I changed doctors. With the new doctors I was more comfortable, but still I thought something else was happening to me.
The few days after I had Olive my legs were so weak that I was put down as an extreme fall risk and wasn't allowed to even get out of the hospital bed without a nurse.
From that day forward I continued to have limb weakness, I developed an abnormal gait, started having non-epileptic seizures, and was diagnosed with Functional Neurological Disorder after many tests and a trip to Cleveland Clinic.
For a while before my diagnosis I felt absolutely lost. My career path had to change, I was a new mom, and I was losing my independence. My mental health was really struggling. Adding a shower chair and mobility aids to your daily routine is a lot when you've gone most of your life taking walking correctly for granted. It took all but 2 years for me to go from hanging out with my friends and dancing for hours on end to not being able to grocery shop without help.
I've now, at 24 years old, and I have been disabled for almost 4 years. Everyday I am still learning to accept myself, to love myself no matter what, and to live a life of gratitude. No one knows when their life will change or have to pivot. Without the path my life has taken I may not have found my passion in content creation and disability/ chronic illness advocacy. I refuse to let FND get me down or stop me from pursuing any of my goals. My instagram @lyndsey_ellen_ is dedicated to sharing inspiring, educational, humorous, and relatable content for other disabled/ chronically ill individuals and our allies. In the future, I plan on public speaking and writing children's books in hopes of breaking the stigmas around disability/chronic illness.
