In case you’re wondering what it’s like to be in the ER right now for non Coronavirus symptoms, allow me to say on behalf of all the medical professionals in the US and indeed the entire world right now: STAY THE FUCK INSIDE AND ADHERE TO SOCIAL DISTANCING GUIDELINES AS MUCH AS POSSIBLE TO HELP FLATTEN THE CURVE AND REDUCE THE SPREAD OF INFECTION.
I experienced my first ever “thunder clap” (x) headache this morning, the pain was so intense it took away my ability to think. I couldn’t move, speak or even scream. It subsided in under 5 minutes, but those were the longest 5 minutes of my life, and I’ve had root canals done without anesthesia. I’ve fractured my spine, gotten up and carried on walking.
We called the nurse helpline only for them to say they’d call us back. They never did. ETD ended up driving me to the ER, where we debated going inside. The administrator told us we would need to separate, he couldn’t come any further than the red line marked on the floor. I was escorted through empty corridors toward a space that used to be inhabited by seating cubicles used for IV lines (can you tell I’ve been here a lot?), that had been turned into prefabricated rooms. The nurse leading me through the corridors had a walkie-talkie strapped to his front. He kept up a running commentary of where we were at all times. I asked him if it was because I might be contagious, and he told me frankly, yes.
I was asked several times if I had flu like symptoms, did I have a cough, did I have a fever. I told them I did not. They didn’t seem to know what to do with me. I was seen first by a junior doctor, who for reasons of importance later on, I need you to know looked like young John Mulaney
“She doesn’t have flu symptoms, what should I do?” he whispered to the nurse from behind the plastic curtain separating me from the rest of the world.
“Well what symptoms does she have?”
Stroke. Possibly. Or a brain bleed. It was possible, with my history of neck injury. My blood pressure certainly implied something was wrong. A senior doctor was called in, who re-performed the neurological testing, which was all fine. They continued to panic over my blood pressure, however, right up until I said “if you let me lie down I’m sure it will normalize.”
“We think I have POTS, I’m seeing Dr X at this hospital.”
“Why isn’t that in your medical file?”
“She doesn’t want to label me with a disability because of how she thinks it will negatively impact my outlook on life.”
“…as opposed to actually having POTS?!”
Which was the first time I’ve ever actually heard a doctor say “What the fuck?” loudly and emphatically. In my head I nicknamed him Sassy Senior Doctor. It was evident he was standing on his last nerve and had stopped giving a shit about everything that wasn’t keeping people alive.
“What else is missing from your file?”
“Ehlers Danlos Syndrome and Mast Cell Activation Syndrome.”
“Oh my god why are those missing?!”
“Ehlers Danlos is a new diagnosis from outside [Network] and my files are pending release. MCAS was because the allergist at this hospital told me it’s a made up disease.”
“Tell that to the allergist.”
I was allowed to lie down and my blood pressure normalized. They concluded I was not having a stroke.
It was during this conversation that junior doctor, Dr. Young Not John Mulaney, came back into the room, and the Nurse, not missing a beat said “looks like we’ve got a zebra*, not a horse in the hospital.”
They were all wearing masks, but Dr. Young Not John Mulaney’s facial expression was clear. Outside the plastic curtain, Sassy Senior Doctor made a sound something like what I imagine an owl being given the Heimlich maneuver would sound like.
“We’re trying to figure out what to do with you.” Dr. YNJM said. “You’re the only patient in here not for respiratory problems.”
I was once again asked if I had any flu like symptoms, or if anyone in my family had. “My husband’s had bronchitis for six weeks.”
“That’s too long to have bronchitis,” said the Sassy Senior Doctor. “What did they give him for it?”
“Jesus H Christ. Is he staying home from work? What do you mean no? Is he an essential healthcare worker? No? Tell him to stay home. For his sake and yours. I don’t want to see you back in here with a collapsed lung…”
They consulted with a neurologist via tele-medicine, who said the excruciating burning sensation I described lancing through the side of my face, sounded like trigeminal neuralgia (x). “She needs to come see us. It might be TN, or it might be her neck pinched a nerve. EDS can be like that.”
“Can you take her right now?”
They could not take me right now. Apparently I will have to wait until we are not facing a global pandemic.
“Can you feel your hands?” Sassy Senior Doctor asked one more time. “Can you wiggle your toes? Can you grip my hands. Do you still not have any flu or flu like symptoms? No? Excellent, get the fuck out.”
The nurse assured me he meant it kindly, and I believed her.
They prescribed me muscle relaxants I can’t take because of my EDS, but said it might help, in a pinch—no pun intended.
“Stay home and stay safe” was the final parting advice I was given, and then they let the zebra out of the hospital.
*There is a common expression in the medical community: when you hear hoof beats, look for horses, not zebras, meaning that if a patient presents with X symptoms, they probably have the most likely diagnosis, which is Y.
Unfortunately for chronic and genetic problems like Ehlers Danlos Syndrome, this means our health issues are often brushed off as mental health, life style choices, or sometimes maliciously as attention seeking. This has lead to the community adopting the Zebra as their mascot, because sometimes when you hear hoof beats, it’s worth looking for stripes.
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