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To the ER Doctor Who Took the Time to Listen

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As a person with chronic illnesses, like many with chronic illnesses, I try to avoid the emergency room like the plague. It is so rare to have an experience where you get an empathetic and knowledgeable doctor to help you. Generally, when I actually end up in the ER, it is a true emergency.

Recently, I was sitting in my college criminal justice class when trouble struck. I had been feeling a bit more off than usual that day and I couldn’t explain it. I pushed through the day. As my last class of the day was wrapping up in the last 15 minutes, my professor noticed I was getting uneasy, had a blue-gray tint to my complexion, was having muscle spasms that were jerking my limbs, and I’d been unusually quiet. I am a frequent contributor to classroom discussions, so for me to go two hours of class without saying something is very atypical.

After class, he came up to me and said I didn’t look too well. I explained that he was right, I didn’t feel particularly well, and that I wanted to get back to my apartment as soon as possible. He insisted that he call 911, as I was a bit short of breath and discolored. Because I haven’t had good experiences with medics and ERs in the past, I tried to decline. He persisted and finally agreed that I should have a friend push my wheelchair the six blocks uphill to the ER. She dropped me off, and I guess I looked pretty awful because they took me back straightaway, and the waiting room was packed.

My vitals were not surprisingly abnormal, but my oxygen saturation was low for me. Very low, actually. As I continued to shake from violent muscle spasms, the resident came in and asked a bunch of questions. He noticed that all the doctors had been writing the exact same thing over and over with the suspected diagnosis: stiff person syndrome.

Not the best diagnosis, but not the worst either. If they all agreed, why wouldn’t anyone diagnose?

The short answer? They had all only had one patient with the disease in their careers, and we didn’t present it exactly the same. Shocker.

I was told to follow up with a neurologist as soon as possible, ideally between within two weeks. I laughed. Without success, I’ve been trying to get a neurologist to get on my case and stay for five years. The doctor I really needed to see couldn’t see me until February 2019. However, that wouldn’t work, not with respiratory compromise.

The resident and senior doctor were both astonished and speechless. “I don’t know what to say…”, the senior doctor started. “You don’t have to say anything,” I said “You treated me with compassion, like a human, and tried to help. While you didn’t stop the problem, you definitely helped make my symptoms more bearable. My hope that someone somewhere will be able to help has been restored. That’s probably the most important thing you’ve done for me in the last eight hours.”

All too often, the doctors that want to help can’t and the doctors that potentially can help won’t, continuing the vicious cycle of illness. These doctors were incredibly compassionate and wanted to help, but were oblivious as to how bad the medical system had failed me over the last five years.

To that resident and ER attending, thank you restoring my strength to continue fighting and searching for a diagnosis.

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Lead photo by Thinkstock Images

Originally published: February 6, 2017
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