A Letter To My New Pal Ehlers-Danlos
“I was careful to walk along a tightrope made of barbed wire, no matter how painful it became. ”
For my new pal, Ehlers-Danlos,
Hello friend. We initially met 27 years ago at the beach. I had that fabulous dinner of fish and vegetables, which I made from something I found in the grocer. I was suddenly so tired, and I passed out in the large bay window at my parent’s place in Emerald Isle, NC. I woke up with a start, and there you were. I remember being unable to move. The pain felt localized but, at the same time, was everywhere.
Thinking back now, you had been lurking and watching for years before then. You smiled as I entered my first ballet class, knowing we could bend all the way over to touch the floor quite easily. You snickered as I grew into adolescence and your instability led to my feeling faint and developing palpitations. “Just a heart murmur,” they had said. “Use these antibiotics when you see the dentist and you’ll be fine.”
You tagged along as I became a young adult. My childhood nosebleeds and allergies evolved into repetitive sinus infections. I was told I must have been overdoing it as I applied to medical schools and enjoyed my college senior year. You knew better, but you stayed silent as the overuse of medication and subsequent inflammation led to kidney failure and more poking and prodding. When that male doctor who barely spoke to us suggested I was faking it- that perhaps my passionate drive to become a doctor wasn’t mine at all but rather something my physician father had projected upon me - you laughed. You knew then that I was learning to hide you to move forward. To suffer in silence to the point that our pain threshold increased beyond what others could comprehend. Years later, it would be commented on and admired as we sat still without complaint during a discovered ruptured ectopic pregnancy. It would also be used against us again because I was too still for my reported kidney stone to be believed.
You grew stronger even when I decided I must just be “overdoing it” with call and moonlighting in residency. You laughed as I started to doubt myself and wonder if I was just depressed, anxious, or worse. I forgot how much I hurt every day. I nearly died from that ruptured ectopic pregnancy because I assumed the pain wasn’t that bad. I was so used to being questioned that I began to doubt my sense of self. This extended from my body to my spirit, and for years I found myself using my hypermobility to bend myself into the boxes others created for me. I was careful to walk along a tightrope made of barbed wire, no matter how painful it became.
Throughout my life, I experienced multiple seemingly unrelated complaints – irritable bowel explained away by stress, adult-onset asthma from exposure to mold, multiple miscarriages, worsening back pain due to unstable sacroiliac joints, and what appeared to be random onset migraines and jaw pain. It wasn’t until we were properly introduced that I realized these things all have a common denominator. Only after you were given a name did I learn all your secrets. It’s not normal to walk and not feel where your legs are in space or suddenly feel faint when exercising or moving too quickly. Who knew? You made sure I was too silenced with self-doubt to ask anyone if this happened to them too.
“I cried tears of relief and later mourned after hearing your name. ”
Initially, I celebrated knowing that this validation justified my years of physical complaints and mental anguish. I took time to read over my doctor’s recommendations and gathered my resources together. Compared to you, I was a small child playing plastic soldiers as your bombshells smashed through the buildings surrounding me. Forgotten and suppressed physical ailments moved into a bright spotlight and suddenly, pains and aches indicated overstretched and subluxated joints. The fear that came with these realizations did cause pause, if only for a moment.
With your name came information and permission to lean into my vulnerability. When we initially met, I was a teenager in the night peeking through the cracked open door of womanhood. Now, I am a Wise Woman – a healer and teacher, an artist and advocate, a mother and mentor. I know that to move through that door and into the light, I cannot suppress your voice or ignore your gifts. It is time we walk hand in hand and side by side. You are and will always be a part of my makeup and being. You have allowed me to realize my limits and learn the need to hold boundaries. You have shown me in real time what it means to experience our medical system as a patient. I will never forget the power of listening and allowing space for my patient’s story. You are a coauthor of my story, but ultimately, I hold the final edit.
- Me
