Self-advocacy is the most important tool in my toolboxPosted June 3, 2020
Don’t be a wallflower, find what works for you!
I used to think everyone had constant aches and pains. My high school track and field team delighted me—I adored being part of that group! But running hurt my knees and my back. I had a whole box filled with braces, aces, and splints. So instead, I threw discus and shot put for my team. I found a way to be an athlete within the program that I loved, in a way that worked for my body. I did secretly wonder why I was weaker than my teammates, but I stayed on the team. And that was before I knew there was something actually “wrong” with me!
Throughout medical school, I learned that while I loved doing medical procedures, being on my feet for long periods of time and forced to be in certain positions wore on me. Multiple pre-syncopal episodes, sheer exhaustion, and an aching neck simply from wearing my ID badge on a lanyard around my neck! Again, I was delighted to find a way to fit in a profession that I loved. I chose to become a radiologist, a field with less time on my feet, and a field that focuses on ergonomics. I am now a physician who specializes in performing breast biopsies and working with women who may be diagnosed with breast cancer. And I have a well full of compassion after what I’ve gone through with hypermobile Ehlers-Danlos syndrome (hEDS).
After my first child was born, I had severe rib pain. So many tests! Nursing my son was a nightmare. So much pain. All the tests were normal. But I felt like my body was falling apart. After my second child, things got worse. A physician who specializes in pain management finally suggested the diagnosis and sent me to genetics for a workup – a decade and a half after my first symptoms. I’ve learned to handle migraines, GI motility issues, PoTS, lots of musculoskeletal issues, and more.
I am no longer reluctant to ask for accommodations, I bring my own support pillow to the bar for a drink with my girlfriends, wear the ugly orthopedic shoes to a wedding, or my sacral stability belt while presenting at a conference. I do what I love and find a way to make it work for me, without shame. As my mom says, “I didn’t raise a wallflower.” And I’m glad she didn’t. Because I’m able to self-advocate.
Really, with an invisible illness such as hEDS, self-advocacy is the most important tool in my toolbox.Tags: advocacy, Diagnosis Journey, hEDS, hypermobile EDS, nurse, Self-Advocacy
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