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By Hallie W.
Hi everyone, I’m Hallie. I am 18 years old, and received my hypermobility Ehlers-Danlos diagnosis last year, at 17. As I’m sure most of you know, the feelings regarding an Ehlers-Danlos diagnosis come in phases. I felt the extreme relief at having an answer, and verifying my sanity. I felt the “I told you so, I knew something was wrong” moments, and then I felt the fear, and the pain, the dismal thought of my future. I was lost, and had no idea how to cope alone through my diagnosis.
Since I was young, I have relied on nobody. I knew how to handle myself and help myself without putting anybody else out of their way. Accepting that I finally needed help, and someone I could talk to about this, was so difficult for me. I had to swallow my pride and realize that it IS okay to cry, it IS okay to not be okay. While not everybody understands the severity of EDS and the pain and emotions that come with it, there are people out there who care and want to help you.
The biggest inspirations and support in my life have been my physical therapists. They remind me how to be strong, they let me cry, and are always waiting arms open to hug me when I’m sad. I know that even on my worst days I can count on them to let me talk it out, and get advice on how to handle whatever the situation is. It is because of them that I am pursuing a career in pediatric physical therapy; despite my illness, despite the odds. I have found strength through my weakness, and made it my goal to help other kids living with chronic pain, and life altering conditions.
I am proud of myself, and every one of you, for facing this battle and beating it, every single day, even when it feels impossible. I am proud to be a zebra, and know that I am not alone. I love that this community supports one and other endlessly. I hope all of you can find strength in your battles, and learn to love your life after diagnosis.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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