Posted July 2, 2018

by Dr. Rachel

I am 43 years old. I have two children and work as a doctor. Up until my pregnancy 9 years ago I would say I lived a “typical” pain-free existence. I went through a grueling obstetrics and gynecology training, worked for several years and had my first daughter without any complications. A few months after I delivered, I was bending to get something and I felt a “pop” that made me pause, then kept moving as usual. Within 2 weeks I couldn’t walk more than one block. No one could tell me what was going on – how I went from a healthy and active person to not being able to walk, sit, or take care of my daughter.

Took about a year until someone diagnosed me with sacroiliac joint “sprain” and from there, 50 plus PT sessions and I could hardly stand. My journey since that time has included traveling across country for surgery, injections, regenerative medicine. It was terrifying as I saw doctor after doctor with no diagnosis and my physical abilities deteriorating. Since that time i have crawled my way back into life. I have slowly SLOWLY and with lots of help returned to work and enjoy life without extreme pain. I went to a geneticist to get the diagnosis of hypermobile EDS as I wanted to watch for this in my daughters. I found as my older daughter grew if I told a doctor of hers that I am “hypermobile” they would bend her arm and say she is fine. Somehow giving it a name made it “official” in their minds although in mine, it is what is.

I maintain a job as an outpatient gynecologist almost full time, am a mother to two beautiful girls, and work my little glutes off to maintain my strength and mood- including waking up at 5:30 AM several times a week to go to pilates. At the depths of despair, pain and unable to stand, with no doctor able to help I was utterly exasperated. With all of the help of my family, my physical therapist, doctors who provided medical care and many other providers (pilates teacher, massage, etc.) I live my life and continue to improve in function. I know this disease will be ups and downs but I do my best to enjoy the ups when they come.

I am a much different doctor now – honestly, I thought I was good before EDS – but I understand the fear and helplessness of having doctors look at you like “it’s all in your head”.

I feel a sense of mission with my work and fight fight fight to maintain my schedule and take care of my patients in the manner of a family member. Always. In fact, despite at a time being unsure if I would work again, I was awarded one of New York’s top doctor awards. My story is always moving–EDS is full of fun and horrid surprises. I am fortunate that I have a great “pit crew”, a loving family, a job I am passionate about and a few people who believed in me. It’s an ongoing struggle to believe in myself, now I do.


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