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When a Stranger Helped Me Find My Diagnosis and Forever Changed My Life

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In the oddest of circumstances, I had finally found the answer I had been looking for my entire life. A girl I had just met had come to my home to buy one of my puppies, and while she was standing in front of me loving on her new family member, all I could think of was, “Those knees. They bend all the way back like mine.” Nobody I knew had knees that bent back like that, except me. My bendy bones that used to gross children out, and make me feel like I was just gross in general because my joints bent in all directions all by themselves. Is it weird to ask a total stranger about their knees while they are buying a puppy from you? It probably is, but I had to know. I needed an answer for why I couldn’t make myself look like everyone else, from a person who looked just like me.

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“I have Ehlers-Danlos syndrome (EDS),” she said.

“You have a who?”

“EDS. All of my joints are hypermobile. I dislocate my joints a lot, and I have daily, severe pain. I decided getting a puppy could help give me a reason to get out and walk, and strengthen my muscles back up to help hold my joints in place, as well as be my emotional support on my bed when the pain flares.”

I was in shock. She had just spoken so many things about my life that no doctor could answer or fix for me. But I was “just a hypochondriac,” and she had this EDS thing.

“So, is it kind of like when my fingers curve backwards like this?” I asked her.

“Oh, wow, that’s the flying bird sign,” she responded.

I showed her my knees. The weird popping noise my shoulders always make. The way I could contort my body like the people in the circus. How I could turn my feet completely backwards.

“Do I have EDS, too?” I asked her, like it was some kind of contagious illness.

“I honestly think you do. Here’s the name and phone number for the doctor who diagnosed me.”

“You have a type of EDS called the ‘hypermobility’ type,” this new doctor told me.

“I’ve never had a patient come to my office and ask me to test them for EDS like you just did. It’s fairly rare. How did you even hear about it?”

“Someone listened to me,” I responded.

At the age of 25 years old, I was just then getting diagnosed with a condition I had been born with. How had this been missed for 25 years? Why did doctors keep telling me there was nothing wrong just because the X-rays didn’t show any fractures?

I was in excruciating pain and they kept telling me, “Take Tylenol. Ice it. It’s just growing pains. You need to slow your pace down. If it doesn’t get better, come back and see me.” So I went back. And back again. And again. The receptionists knew my name and birthday by heart. I accumulated 20 some ice packs that covered most of my body as I iced all my hurting areas. Tylenol didn’t help. I hadn’t grown any taller, so how could this be growing pains?

Eventually, I gave up seeking answers because I started to believe I was “crazy” or just overreacting. I suffered in silence for years until I met the girl who bought my puppy. I will never forget the way she listened to every seemingly unrelated issue I had. She validated me. She didn’t tell me things were just going to get better. In fact, she had told me this is a progressive condition. She was genuinely honest with her explanation of EDS. She didn’t make me feel “crazy.” She made me feel important for that one moment, looking me right in my eyes as I dumped my whole life of medical mysteries on her, my eyes pleading with her to agree that I wasn’t a hypochondriac, as I had been labeled.

No doctor had ever really listened to me before. They heard my complaints, the same complaints as from the last visit, but never once listened to me. They never asked about or acknowledged what my mystery illness was doing to me emotionally. They never looked for the “zebra” in the field of horses.

I am a “zebra,” a rare find among thousands of horses. I wish I had grown up knowing why I couldn’t make my joints and bones look like other kids’. I wish I could have told them why I hold my pencil differently than they do, why I am so clumsy, and why I got injured so much by doing nothing sometimes.

Maybe I wouldn’t have felt so different, so gross. Maybe the kids wouldn’t have laughed at me and pointed at me.

Taking the time to truly listen to someone can be life-changing. It could have changed mine. Even outside of medical professionals, no one asked me how I was feeling, or how they could help me. I learned to push myself beyond my physical limits and not complain. I didn’t feel like my words mattered. I felt like I didn’t matter. I remember very vividly when I kissed that puppy goodbye for the last time and watched them walk away. I yelled after her, “Thank you,” with tears in my eyes.

“Thank you for what?” she asked, puzzled.

“Thank you for listening to me.”

She smiled, looked me in the eyes and said, “Welcome to the Dazzle.”

Originally published: August 16, 2018
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