It took way too long to find out I had Ehlers Danlos
It started in August 2013, around 6:00 in the morning.
I was doing my daily workout routine: 30 minutes of Tracy Anderson dance cardio, followed by 30 minutes of Tracy Anderson toning. It was my Tracy Anderson era, obvs. Her method helped me to shed all of my baby weight from having my two daughters in 2009 and 2012, and for the first time, I loved how my body looked. I was obsessed - almost every single day, I’d wake up around 5:00 a.m. so I’d have time to get my workout in before starting the day with two small children, a full-time job, and a full-time courseload in grad school.
On this day, however, everything changed. Halfway through the dance cardio vid, I felt a sudden and INTENSE pain in my lower back. It was unlike anything I had ever felt before; I had to stop. Within two hours, I couldn’t lift my 1-year-old, and I had to call my mom and ask her to come help me take care of her. Within four hours, I couldn’t walk or stand up straight. It was terrifying.
I’ll give you the short version of what happened over the next 7 years.
Sudden “episodes” of my back going completely out - sidelining me on the couch for days at a time, causing me to miss work, school, and anything else that was going on.
Countless doctor visits - I saw multiple primary care doctors, a neurosurgeon, a rheumatologist, an osteopath, and anyone else I could think of who might be able to help figure out why my body was suddenly betraying me.
Multiple rounds of physical therapy, some of which made my problems worse.
Near constant pain in my lower back; no position was comfortable except lying on my side.
Eventually, other mysterious issues started popping up: gastrointestinal problems, headaches, sudden heart rate spikes, panic attacks, joint pain, and limbs popping in and out of place.
Friends, family, and doctors looking at me like it was all in my head.
Emotional distress from feeling that my body was betraying me and I had no idea why.
By 2020, I had pretty much given up trying to find the cause of all of my pain and mysterious ailments and resigned myself to a life of being careful and not doing too much physical activity. It sucked.
I had always been bothered by having loose, stretchy skin all over my body. In my mind, saggy skin on my arms and legs gave me the appearance of an elephant. One day I was doing what any girl does when we are looking for an external fix to an internal problem - sitting on the couch Googling. I looked up “treatments for saggy skin”, “how to tighten skin”, and so on. I noticed that so many of the search results were pulling up websites that talked about stretchy skin being a symptom of something called Ehlers Danlos Syndrome; I recognized that name, because one of the rheumatologists I saw mentioned in passing that it was possible I could be dealing with EDS, but then quickly decided that there was “no chance” that it was the culprit.
Well, I got curious, and started reading more about EDS. The more I read, the more I felt like I was being described accurately and in great detail. For the first time, I felt a sense of hope that maybe there was an answer that unified all the seemingly unconnected issues I’d had over the last several years.
It took about six months, but I finally snagged an appointment with a geneticist. Hypermobile EDS is the only subtype that doesn’t yet have a genetic test, so I had to drive to Fayetteville, AR where the geneticist’s office was located for a physical exam. And when I tell you that exam was comprehensive - hoo boy. It took over two hours. He checked every possible marker, and on the vast majority of them, I scored off the charts.
I cried on the way home. At that point, it had been nearly 8 years since my back went out that first time. I felt a sense of relief at finally having an answer to the mystery that had kept me up so many nights, not to mention the validation I felt at having something I could point to that caused all of the pain and difficulty and made me afraid people would think I was a hypochondriac.
That was about 4 1/2 years ago. Since the diagnosis, I’ve switched my focus to learning how to take care of a bendy body. Unfortunately, I can never do Tracy Anderson’s method again - it is too hard on my lumbar spine; but I have found things that I can do, and I’m much kinder to myself now.
On the r/ehlersdanlos subreddit, I read tons of stories just like mine. People, mostly women, who have been told they were imagining things, or trying to get attention, or that everything was fine, or that they had some sort of unidentified pain disorder. Folks who have waited years or even decades for a diagnosis. Thankfully, more people are learning about “the bendy body disease,” so hopefully future generations of Bendy Baddies won’t have to wait as long as we did to get answers.
