Happy EDS Awareness month!
Only a few months ago, I had no idea all my strange symptoms had a common denominator: EDS (and its related comorbidities in varying degrees). Finally, in July 2021, a neuro-spinal surgeon confirmed I had EDS. He diagnosed me with classical EDS; however, now there’s some confusion about where I fall on the EDS spectrum: Classical, hEds or HSD? My
musculoskeletal system has been the most challenging, but I’ve had lifelong GI struggles, symptomatic dysautonomia (which was dismissed as psychological in nature), dental issues since I was eight years old, spontaneous bursting of blood vessels (without trauma) and many other strange seemingly medical anomalies that no one seemed to understand.
Very much like I’ve read younger people with EDS seem to get comments like, ”You’re too young to be in so much pain,” I get, ”I don’t usually get patients your age newly diagnosed with EDS,” because I am 50 years old. Even when I first saw an orthopedic surgeon about herniated disks in my cervical spine (with no trauma and before anyone pointed
out EDS), that doctor spent 15 minutes with me, barely asking me anything about my lifestyle, diet, activity level and just laughed. His arms were crossed. He shook his head and said, “Welcome to old age.” I was 49. In my gut, I knew something else had to be going on, though.
I’d already experienced years of feeling like I couldn’t really implicitly trust doctors, and this just added a new layer of something I had to be aware of: my age and how it might negatively impact my care if I didn’t start speaking up more. Being disabled and on Medicare only, that’s a lot easier in theory than in practice. Financial challenges can
greatly inhibit freedoms, as we all know.
Now, I try my best to give context proactively. I try not to stereotype people. I need my doctors not to stereotype me and make assumptions. Seeking medical help is a team effort. It’s a relationship. I do my homework and take suggestions. I would hope my doctors do the same. Occam’s Razor only works if we have depth of field and all the
information.
It was an amazing PT who pointed out my hypermobility. He kept bringing it up and laughing that he couldn’t stretch me. I didn’t know he was speaking in medical terms. He mentioned EDS but that he only read about it briefly in med school. I went home, and as soon as I saw all the symptoms that weren’t musculoskeletal, especially, I felt tears of relief
and disbelief wash over me in a wave of validation. Suddenly, 50 years of seemingly separate issues all had a cohesive narrative. I wasn’t a hypochondriac nor crazy, after all. Then the grief and anger crept in: how could this have been overlooked for so many years? I try not to dwell on the anger. It costs me too many spoons I can’t afford. I try to channel that frustration and advocate, even when I’m scared. When I can’t find the strength to speak up for myself, I remind myself that speaking
up might help another Zebra not have to experience some of what I have been through, and I can find my voice.
- Elizabeth Miller
Elizabeth is a writer and a new member of our Chronic Pain Partners media team!
Beth has also been part of our
EDS & Aging Project
where we asked 19 aging people to share their experience about AGING with EDS.
You can view the full PROJECT
