Finding the Silver Lining of Ehlers-Danlos Syndrome
“But down the road the sun is shining
In every cloud there’s a silver lining
Just keep holding on”
Active and athletic…That’s what I used to be. I was a competitive swimmer, lifeguard, and well-rounded individual. I’ve always had chronic pain and unexplainable injuries but I had always assumed that was part of living the life of an athlete.
“Play through the pain,” became one of my biggest mottos. It wasn’t until I was 18 years old that I completely understood the extent of my condition and the limitations it would cause.
During my senior year of high school, my health took a downward spiral. I had been struggling with a broken and unstable vertebrae that slipped forward called spondylolisthesis. It started compressing some of my nerves, causing a lot of nerve damage and terrible pain.
In addition to that, I was diagnosed with Ehlers-Danlos syndrome (EDS). It is a group of inherited disorders that affect connective tissues (primarily the skin, joints and blood vessel walls). Most of it is due to a lack of collagen in the proteins of the body (which would explain chronic subluxations, dislocations, and pain). The continuous pain ranges from having razors slice down my bones to not being able to walk at all. Every day hurts, but some hurt more than others. There were many days my mom had had to get me out of bed. I am a singer and have had to cancel performances because I couldn’t stand for the amount of time the song entailed, due to loss of feeling in my legs and falling. The fact that I wasn’t able to swim for my senior season because of a nine to 12 month shoulder surgery recovery was another huge blow.
I felt like I was losing the essence of who I was and fell into a state of anger and depression. Things I used to be able to do with ease had become almost impossible to even attempt. I was at a very low point in my life.
I am very thankful for the friends and family that have stood by me during this difficult time. Without them, I’m not sure if I would have made it this far. I’m grateful for the doctors who not only validated my pain, but reminded me that I am still strong and can fight through the diagnosis. I’m thankful for the other experiences and people I have met since being diagnosed. Since I was not swimming, I gave competing in culinary a try and learned that I enjoyed cooking.
There is a saying, “When one door closes, another one will open.” I believe everything happens for a reason. I also believe that we can’t control what happens to us, but we do have a say in how we react to it. Trying to act like nothing is wrong when you feel like falling apart is half of the battle.
I decided that a way for me to cope with my medical situation was to use my story to educate others. I plan to make the most of my situation and become an advocate for EDS awareness. I have gotten myself involved in multiple support groups. I have found new ways to cope. I have learned to be my own advocate and to find the positive in many situations. I’ve learned that I am stronger than I originally thought. I’ve found out what I’m made of.
In many ways, I feel that I’ve accepted my limitations as only that. Limitations. I am still the same girl I used to be. I just have a couple more obstacles than I am used to. I’ve also learned to accept that some days it is okay to not be okay. Staying positive does not mean that things will turn out okay. Staying positive is knowing that you will be OK no matter how things turn out. Although it may not always be easy in the moment to see all the positive things going on in your life, there is always a silver lining.
“You’ll find love, you’ll find peace
And the you you’re meant to be
I know right now that’s not the way you feel
But one day you will” – Lady Antebellum
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