How I Discovered My Disability
It’s taken me a long time to process my disability and all of the traumatic experiences that come with it.
The more I understand, the more I’m ready to write about it. So, get comfy folks; I’m going to tell you about the incredibly painful event that led to my diagnosis of Ehlers Danlos Syndrome.
It was just an average school day; the only thing 18-year-old me was worried about was her pre-cal test after lunch. I was sitting at a big, black lab table in human anatomy, and my teacher was calling out names to get our graded papers.
“Abbey!” was the last thing I heard before indescribable pain took over. My knee hit the side of the table, and next thing you know, my right kneecap is on the side of my leg. Not only that, it wouldn’t pop back in place.
Usually, I can handle the dislocation pain. It would last for a few seconds, but not this time. The panic I felt in this moment was overwhelming. Am I going to have to have another surgery? I thought. I’m about to pass out; I can’t take this pain. Thoughts raced through my head. I’m going to be stuck like this forever.
Those were only a few of the thoughts that circulated through my mind. When your knee is out of place, your body freaks out. Muscle spasms would come in waves pushing my knee even further out of place. Everything started going black.
The horrible part is I had to deal with this pain for about 30 minutes as I waited for the ambulance. I had to be picked up, with my knee out of place, and put on a gurney. The responders hoped that would help my knee slide back in place; it didn’t.
The rest is a blur. I was on so many pain medications I felt like I was in an episode of “Grey’s Anatomy.” Once we reached Huntsville Hospital, nurses rushed me to a bed. Multiple doctors surrounded me on each side. I was terrified.
Because I had so much medication in the ambulance, they couldn’t give me more. Instead, a nurse shot some sort of pain reliever up my nose. Next thing I knew, my knee was back in place.
One of the doctors stopped me and my mother as we walked out the door. “I really think you should get checked for Ehlers Danlos Syndrome. Your experiences align perfectly with this genetic disorder.”
First off, I thought, What even is EDS? I’ve never heard of it before. I couldn’t even spell it. How could this possibly be such a big part of my life?
Three months after this incident, I was in Birmingham ready for my diagnosis. To my surprise, the type I was being tested for has no known genetic test. Type 3, also known as the hyper-mobile type, is tested on past history, stretchiness, and skin abnormalities.
So here I am, being closely examined by two doctors looking at every scar and abnormality on my body. They also talked about my body right in front of me, like I was an object. I just had to stand there. It was uncomfortable to say the least.
I also had to stretch every joint in my body to test my hypermobility. If I’m being honest, I felt like I was taking a weirdly specific sports physical.
“Yep, you got it” was the only response the doctors told me after hours of testing. They recommended a book and sent me on my way. You know, finding out you have a life-long disability with no cure isn’t a normal event. I didn’t even know the specifics of what was wrong with me, just that I was abnormal.
I was lost; I had no idea who I truly was. At the same time, I was overwhelming happy that all of my pain and experiences were validated. So many times, people joked about how over-dramatic I had to be to obtain so many injuries. My mom and I were constantly told all of my pain was in my head. It took me 18 years to realize they were wrong.
As I’m writing this, the memories and pain overtake me. I feel like I’m reliving this experience, and I have to stop every five minutes to remind myself this is the past. The panic and fear I felt as a senior in high school is still present during my junior year of college.
You’d think the more time passes, the less stressful a situation would get. When it comes to my dislocations, this is anything but the truth. I’m still learning about myself and my disability, but I’ve come so far. I know pain is a part of my experience, and I had to come to terms with it.
Now look at me go! I’m writing about disability awareness, using my story to help others. I’m not embarrassed by my disability; it’s what makes me who I am. While it would be cool to be normal, I wouldn’t change my experience. It’s given me a purpose and provided an outlet for me to use my passions for good.
If there’s anything I want you to learn from this piece, it’s that life is unpredictable. No matter how hard, you have to keep fighting. This is only the beginning of my journey, my friends, and I will continue to use my story to help others.
Sincerely, Abbey
Photography: Abbey C.