Honestly, as a group, we just need to be thought of as a parking passes in need of one thing - validation. Having a disorder that affects collagen, we lack the proper glue to hold our bodies together. Life with faulty collagen is exhausting. All your muscles are constantly engaged in hopes of helping out their slacking friend, collagen. We are known to be Cirque Du Soleil flexible and then as a result, riddled with arthritis later in life. It is not a stretch (pun intended) to think that the medical community would recognize this disorder for what it is - complicated and real. They have the complicated correct, but seem to struggle with the "real" component. Too often the medical community stitches the holes in their knowledge using patient shaming sutures. We become so beaten down by the hail rained down upon us during our medical journey, it leaves us bruised and sometimes hesitant to stand up for ourselves being fearful of having to face yet another medical humiliation. Solace is the cave called home that we return to and hide. I once had an experience with a primary care physician who believed I had Lyme Disease. I remember the after hours calls and the kindness that permeated her voice as she lay out a treatment plan for me. The Lyme diagnosis was incorrect, with its treatment wreaking havoc on the underlying and yet to be diagnosed EDS which is frequently misdiagnosed for years. I often think of my dear friend who overcame cancer. Her journey was quite different. As horrific as it was, she was never demeaned by being told the cancer was "in her head", or that if "she just lost weight her cancer would go away", she didn't need to find her own specialists only to find that they did not participate in insurance because reimbursement was too poor for her type of cancer. Her friends and family didn't judge her when she had to cancel plans because she felt poorly or have them decide the issue was really hypochondria. BTW, I met my high deductible insurance plan's in and out of network deductible in 3 months this year. The judgement award goes to a stranger who chastised me in a parking lot for not returning my shopping cart to the bin (too many steps away on a hot day my body would not tolerate) When I calmly said I'm not well today, she responded with you don't look sick. I'll take that validation now please.
Like so many other people having these genes in their pockets, it took over 10 years for me to receive an official diagnosis. Why? EDS symptoms are weird, inconsistent, pile up and while known to be genetically based, the specific gene has not been identified in all of the EDS subtypes. Also, in the eyes of some doctors (and when I was younger, many), I am just another woman who suffers from hysteria, needs bloodletting and then psychiatric care. I am joking (kinda), but seriously folks, what illness takes 10 years to diagnose?? In the age of rarely earning more than a ten minute appointment with a doctor, unless they are concierge, it is very difficult for a doctor to assess a complicated medical history, consider the a diagnosis then and then determine a course of action. To give you a picture of just how hard it is to be appropriately cared for, here is a list of my various misdiagnoses, how long it took to obtain the correct one and the doctors I saw on my diagnostic journey. This is not a "poor me" story, it is included to provide awareness of the inner workings of EDS. Here goes:
The interesting thing about this list is that all of these issues are classically related to EDS and are documented in medical literature. Imagine going to your doctor and having them ask you why you are there. In response you say: Well doctor, my head hurts, I'm throwing up, I keep getting random rashes and asthma attacks, my knees feel 80 years old, my fingers keep locking up, I want to pass out if I stand up too fast, I'm losing my hearing in my left ear, I have this ringing in my ears and I think I might be depressed. I give credence to the difficulty in our diagnostic process, but feel like my intimate relationship with the medical community is often abusive. My years of searching has finally paid off. My doctor hunting has resulted in my team of 5ish doctors that trust my judgement, but I still feel very vulnerable when I have to consult a new physician.
Lastly, in keeping with EDS awareness month, I would like to leave you with a TicTok. Who doesn't love a TicTok! Even better, I'll top it with a blooper reel. In true EDS form, I want to let you know that 2 zebras were harmed in the making of this TicTok. Mom zebra subluxed 2 ribs, needing ice, rest and a physical therapist's touch. Daughter zebra promptly passed out after our little project was complete (thank you dysautonomia and POTS). This is not a rare occurrence as many EDSers suffer from Postural Orthostatic Tachycardia, better know as POTS and dsyautonomia. Dysautonomia is the body's inability to regulate what should happen automatically (blood pressure, breathing, heart rate, etc.) These disorders have received more attention of late given their odd occurrences in people who have had COVID. Enjoy; The TikTok not POTS and dysautonomia (should you have them - no fun at all)!
blog with me