Hearing Yvie Oddly’s story gave us a lightbulb momentPosted July 29, 2022
My name is Hannah Holland, I am twenty years old and after quite the diagnostic odyssey, I was diagnosed with hypermobile Ehlers-Danlos syndrome a few weeks ago.
For as far back as I can remember, I have had many seemingly unrelated health “issues”. From gastrointestinal problems to debilitating fatigue, I was never exactly “normal” despite having no diagnosis to explain what I was struggling with. As much as I wanted to, I could never quite keep up with the pace of my peers. I enjoyed being social and staying active, but it was as if I had half the energy supply as everyone else around me. I’ve always had to pace, which inevitably left me feeling like I was constantly letting people down. Growing up, I had no language to express what it felt like inside my body and how draining that is.
By high school, I was sure something was wrong, and all the testing began. More and more blood work came back normal. With my long list of symptoms. I never mentioned pain. I was very involved in musical theatre, and in that environment, everybody ached. The first time I did mention it to a doctor, I was asked about my physical activity; “Well, that would do it”, he said. I assumed everyone must feel that way and told myself I could push harder. By eighteen, I had given up theatre, accepting it was too physically taxing for me to take to the next level. But the pain only got worse, not better. My mom had been diagnosed with several chronic conditions, including fibromyalgia and arthritis, so my doctor revisited possible genetic links. Again, more and more normal tests.
It was at nineteen that the needle in a haystack comorbidity occurred when I was diagnosed with rectal prolapse. It seemed clear that there was SOMETHING going on with my body, despite all the normal tests. After all those years of searching, we finally found something (thanks to my queerness) by watching RuPaul’s Drag Race. When Yvie Oddly told her story, a lightbulb went on in my mom’s head. I was unconvinced, but after reading more about EDS and seeing prolapse listed under signs and symptoms, I brought it up to my doctor.
Now, finally, I have some answers, and my mom has more as well. She has also been diagnosed with hEDS at the age of fifty-five. I’m taking the next year off from university studies to implement a management plan so that I can return stronger and healthier. After years in limbo with no treatment, I’ve finally been given hope. Having a diagnosis has helped me be more at peace with my limitations and the boundaries I must set. I’m learning to live life unapologetically, stripes and all.
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