Published: 26/12/2018

A perfect storm for a missed diagnosis

by Stacy H.

My name is Stacy, I am 41 years old, and I was diagnosed with EDS at the age of 38. I’m the wife of a retired senior chief and we have three great children. I mention my husband’s service because I am so very proud, but also because I’m sure it is part of why it took so long for me to get my diagnosis.

The military treatment system has its flaws and of the big ones is that you never seem to see the same provider for any length of time. Compound that with the fact that you are always moving and it’s a perfect storm for never getting a diagnosis.

Add to that the sad truth that most military spouses are seen as attention seekers as their spouses are deployed frequently and I was doomed.

I was told once that I needed to suck it up and reach out to my family and friends because that’s what they were for. Mind you this was the day I had back surgery and I had two children under the age of three. I was asking for help because pain meds were not working for me, I could not sleep, and I feared for my children if I could not get enough sleep. I was not asking for more pain meds, I just needed sleep. Even then I was used to pain meds not working for me, I just didn’t know why.

Each of my pregnancies was high risk because I couldn’t carry to term. No one put it together. I also had knee dislocations and gut issues. None of the military doctors talked to each other. And just like clockwork, we would move again. No answers, only frustrations. Finally, we moved to Virginia for our last duty station as my husband got closer to his 20-year mark.

I decided I would take this opportunity to go back to school and become a massage therapist. It was there that my life would change. I was sitting in class when we went over, briefly, connective tissue disorders. It was me! My whole life. I couldn’t believe it. I don’t know how long it would have taken to get a diagnosis if I had not been sitting in that class at that moment.

I went home did some research and made an appointment with primary care doctor who, of course, had to look it up. She argued that didn’t think I had it because I didn’t have super stretchy skin, but I did eventually convince her to give me a referral. My next appointment was easy. My new doctor asked me a few questions and had me show her all the things my body does, and there was no question.

Who knew your legs weren’t supposed to turn all the way backward? Not me. I thought was normal.

Lots of things I thought were normal just because they were normal to me. All my life, doctors told me I was lying, or that my injury couldn’t have happened that way because those things don’t just happen—but they did. My knee did dislocate. No, I didn’t hit it. Yes, I did take my meds. No, I’m not sleeping, because they didn’t work.

Why? Because I have EDS. I’m different; I’m not a liar. It’s not in my head, it’s in my DNA.



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