Amy Tengelics ~
I sat in the cold, sterile examination room, anxiously awaiting my new orthopedic doctor--the fourth in two months. I was losing hope of ever finding a doctor who would listen to me. The first three had suggested that my pain was all in my head
I want someone to take me seriously, I brooded. I don't want to be brushed off as the stereotypical hysterical female. My pain is real, and I'm not crazy. I need someone to believe me.
Finally, there was a soft knock on the door.
"Good afternoon, I'm Dr. Lee."
In front of me stood a man with an impeccably groomed goatee. He glanced at my elbows, which I have a habit of bending too far backwards while relaxing. Brow furrowed, he reached out to shake hands.
Embarrassed to have subjected him to my freakish elbows, I quickly took his hand; his grip was firm and reassuring.
"I would ask how you're feeling, but hardly anyone comes here unless they aren't okay," he said, smiling slightly. I chuckled and nodded, feeling a bit more comfortable.
"Your electromyography results came back normal--incredible, even," he continued. "Your nerves are in tip-top shape. This rules out carpal tunnel syndrome."
"But what's causing my pain? Will it go away?" I asked nervously.
"Well, that's what we hope to find out, isn't it?" he said. "I'm going to do some hand and wrist manipulations. Tell me about when the pain started and how it feels, while I examine your arms."
I put my right wrist into his hand as instructed. "I've been a hair stylist for eight years. Several years ago, I noticed that it was getting harder. I know all stylists have pain, but mine seemed different."
"How so?" He lifted my hand up above my head and tapped my elbow. "Does it hurt when I do this?"
"No, it's fine." He brought my hand back down and switched to my left hand.
"I've lost feeling in my arms below the elbows. It used to feel like electric shocks fanning out over my hand and up my arm. Now all I feel is pins and needles. I can't grip things--I drop combs, even scissors! It's kind of dangerous."
"Do you feel pain anywhere else?" he said.
"My hips, my back, my shoulders. They hurt so bad that every day I leave the salon crying. I take so much aspirin that I end up making myself sick." Just talking about it, I felt on the verge of tears.
He frowned. "That amount of aspirin is really unhealthy for you. What kind of pain is it? Dull? Sharp?"
"It feels the way I imagine an overinflated balloon feels right before it pops. Or how a firecracker feels before it explodes. Sometimes I wish it would explode, so I wouldn't have to feel it ever again." I stared into the corner, unsure how to describe years of suffering.
Seemingly sensing my discomfort, he directed my attention to my wrists. "Watch what I'm about to do." Grasping my wrist above and below the joint, he slid the joint in and out of place, back and forth, up and down. Then he gently put my wrist down and held out his own.
"Can you try and do that to me now?"
I placed my hands on his wrist. To my frustration, I was unable to make his wrist behave as he'd made mine do. I squinted and scrunched up my nose, trying harder.
"You can stop now. You'll never be able to make my wrist do what yours did." Slowly, I released him.
"Have you always been able to bend your elbows that far backward?" he asked, reaching for my chart.
I blushed. "I'm sorry, I try not to do that in front of people. Yes, I always have."
"Can I check your other joints for flexibility?" He put down my chart and picked up a single sheet of paper with the words "Beighton Scale" across the top.
"Of course! I've always been very flexible! It's actually something I'm kind of proud of."
He asked me to touch my toes, then place my palms to the floor. He checked my knees and fingers. Effortlessly and enthusiastically, I did everything he asked.
"A perfect score, nine out of nine. You, Ms. Tengelics, have hypermobile joints and a collagen deficiency. This is what's causing your pain." He picked up my chart to write notes.
"Collagen? I've heard that before. My sister has a collagen thing. I didn't think it was relevant, because she can do a weird skin thing, but I can't; also, she's only my half-sister. The weird skin thing has a name, it's a syndrome. Alelers? Ahlers? Elmhers? There's a hyphen after it." I stopped, finally remembering to take a breath.
"You have Ehlers-Danlos syndrome, just like your sister," he said, then paused to smirk to himself, seemingly pleased that I'd verified his diagnosis by giving my family history. "It's a genetic disorder. I wish I had better news for you, but there is no cure for Ehlers-Danlos. There isn't even any treatment. The best I can offer you is a Percocet prescription for your pain." His voice was neutral--remarkably devoid of its previous sympathy. Now that the medical mystery was solved, Dr. Lee seemed far less interested in me.
Questions flooded my brain--about my pain, my job, my life, my future--but nothing coalesced into words. I could only mutter, "No. I don't want any pain medication."
"Well, there's nothing else I can do for you." He stood up and took a step toward the door. "Not unless you injure yourself badly, anyway. There won't be any need to make another appointment. I can't recommend continuing as a hair stylist; the pain will never improve." He shrugged slightly. "That's your choice to make, though."
My choice? Is he kidding? My hands slowly curled into fists as anger, confusion and sadness boiled up inside me.
What do you mean, nothing else you can do?!
I wanted to scream at him to stop--to stand still until I could collect my thoughts. Half-formed sentences buzzed inside my mind like a giant swarm of bees.
"Okay, thank you, Dr. Lee," I finally said in my meekest voice. The doorknob turned once again, the door swung open and shut, and I was alone.
A fog descended over me as I stood there. My vision seemed hazy, and my mind whirled with questions and regret. Silently, I mourned the lost opportunity to ask questions and ease my fears. I couldn't say anything, I couldn't feel anything--it was as if the world was crumbling around me.
Where do I go from here? How am I supposed to feel, knowing that everything I've built is ending?
Eventually I accepted that Dr. Lee was not going to come back into the room and give me a second chance. I opened the door and left.
The forty-five-minute drive home was a blur. If the radio or air-conditioning were on, I didn't hear or feel them.
Despite feeling so lost and upset, somewhere on that drive home I accepted that this was the end of a chapter of my life, and that I had to find the courage to start writing the next one.
About the author:
Amy Tengelics left her career as a hair stylist and immediately felt much less pain daily. She went back to college and has almost finished a bachelor's degree in computer science. "Despite the setback, I'm very excited to find a new passion and a new path in life. I was angry with Dr. Lee at first, but over time my opinion has mellowed. I wanted to be believed, and I wanted a real answer, and he gave me both those things. I'm lucky to have seen a doctor familiar enough with Ehlers-Danlos to diagnose me and humble enough to admit that he didn't know how to treat me. Having an answer allowed me to start healing mentally and taking better care of myself physically. Although living with Ehlers-Danlos syndrome is difficult and painful, I have vowed never to give up, always to look on the bright side and to smile through life's difficulties. I've found a wonderful rheumatologist who specializes in treating Ehlers-Danlos syndrome. I'm grateful to all the doctors who have seen and treated me, including Dr. Lee."