Who Am I? Why Am I Here?

Hello Readers! I’m so thankful to have this opportunity to share my thoughts through this medium. I think before I get too far into blogging with EDS Wisconsin, I should tell you why you should even bother reading what I have to say (or in this case, write.)

My name is Stephanie and I am a 27 year old EDS patient who lives in southern Wisconsin. I was diagnosed just about two years ago now after nearly 13.5 years of begging doctors to explain my body to me. After my diagnosis, I turned a lot to the internet and made a lot of new friends.

More importantly, though, after my diagnosis, I began writing very candidly on my personal social media accounts about my experiences with Ehlers-Danlos Syndrome and the other medical challenges I have faced. These don’t necessarily just include my experiences with doctors and medical facilities, they also include the social challenges that come with being 27 and chronically ill. I’ve told the truth about being in too much pain to do things I want to do. I’ve acknowledged the frustration and anger that come with “not looking sick,” but feeling like you are falling apart.

Why do I do that? Well, in my life, I have two great passions: advocacy and writing. I’ve had the advocacy bug since as far back as I can remember. If I felt something was a worthwhile cause, I would pour my heart and soul into it. I’ve actively served my community through local government since I was 20 years old. I’ve learned to raise my voice for people who don’t always have a voice or maybe don’t feel comfortable using it. The writing, I think, was a gift I was given to make up for a body that I often feel fails me. I have always found great comfort in words, because even when I am in the most agonizing pain or facing a harsh reality, I can release that through language—and when I can share with the world, it can help others, too.

At the end of the day, that’s really what made me do it more than anything. After a few months of sharing very openly about what exactly I had been through with my diagnosis, a cousin reached out to me about her young daughter–a young daughter who was facing all of the challenges I faced at her age and could never, ever understand. Those same challenges made my childhood painful and haunted me even into adulthood. She was able to take her daughter to an EDS specialist who got her diagnosed RIGHT AWAY. Now she understands what makes her body different. Now she has the physical therapy exercises she needs to hopefully limit some of the damage I know happened to me because we never understood–because my doctors didn’t either, because as I cried on the track in middle school gym, I was told “everyone’s legs hurt” and when my chronic knee dislocations in high school ended in a surgery, nobody asked why that would happen to a 15-year old. That won’t happen to that little girl. If I never help anyone else by sharing my experiences, it will be worth it for her.

But I’m not a doctor and I won’t give you medical advice. I will tell you what I feel and how it affects me. I will tell you that if you are a patient, we probably share experiences. I will tell you that if you are a parent, the greatest thing you can do is fight for your child. Finally, I will tell you that if you are a healthcare provider, the greatest thing you can do is listen.

If you want to know who I am just for the fun of it outside of being a patient, because absolutely NONE of us are patients FIRST, I’m also engaged to be married this summer to a wonderful man. I have the cutest puppy in the entire world. I work with college students in apartment rentals. I serve on my city council. AND, I’m getting a graduate degree in Business Management.

Let me know what you want me to write about. I’m really here to serve YOU!

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