When I Told an ER Doctor 'I'm Here Because I Need Your Help'


I’ve never found the emergency room to be a particularly amicable place. It’s an assembly point for people in discomfort, be it from broken bones or food poisoning. However, when you have a rare disorder and a complicated medical history like me, it hasn’t always been the place where I could actually receive help.

I was discharged from the hospital on a Wednesday morning after a routine and scheduled visit to receive all the intravenous treatments I require to continue breathing. By Thursday evening, the symptoms I had initially associated with common side effects of my treatments worsened to such a degree that I reluctantly made my way to the ER.

I say “reluctantly” because even though one would expect someone with a complicated body to feel at ease around doctors and nurses, I’ve found they can dismiss most of your symptoms by claiming you’re “overreacting” or “just looking for drugs” if they aren’t familiar with your condition.

You see, the ER doctors who have treated me simply don’t seem to listen. On that Thursday evening, I told them I’ve been on corticosteroids for several years. Because of this, my body doesn’t always present with symptoms of infection in a normal way, since my immune system is suppressed. I think my first mistake was informing the doctor that I knew this. Some doctors are so used to being much smarter than their patients, so as soon as a patient possesses anything more than common medical knowledge, they seem to be incredibly offended or intimidated. I personally believe this is because they’re aware of the fact that I know more than them when it comes to my body.

The doctor continually sighed when I opened my mouth, and I could see that every time she realized I was about to speak, she wanted to roll her eyes. When I told her my primary specialist was in another city, she continued by saying: “You’re making this very difficult for us.”

I was so overwhelmed by emotions of rage, frustration and, worst of all, helplessness. I was lying in a hospital bed surrounded by doctors who didn’t understand my body and didn’t appear to want to listen to me. But I was lying in a hospital bed, which meant I was depending on them to help me — and it didn’t appear that anyone was going to. I was reluctantly dependent. I was weak. So the only words I managed to utter in response were: “I am here because I need your help.”

I hope that one day the ER will be a place where patients with complicated medical histories like me can get help they need, but until then, I’ll just have to write a post about every single bad experience I’ve had in the hope that someday a medical student, a doctor or a nurse might read it and realize they have the power to break this cycle that some patients may go through.

We want to hear your story. Become a Mighty contributor here.

TOPICS
JOIN THE CONVERSATION

Related to Rare Disease

Megan Zahneis - Life With a Rare Neurological Disorder

Part 1: Part 2:
Zebra wearing Santa hats

To My Fellow Stripy People Facing the Holidays With a Rare Disease

Happy Holidays and Merry Christmas to you, my fellow stripy people. Many of us struggle this time of year. Some of you are watching loved ones eat whatever they want while you are stuck with a choice or two of food you prepared and brought for yourself. Some of you will be watching others celebrate [...]

This Olympian Won a Medal Despite His Rare Condition

Olympic swimmer Cody Miller wins a bronze medal in swimming despite a rare condition known as ‘funnel chest.’

Parents, Julie and Tony Bombacino, Create Real Food Blends for Their Tube-Fed Son

After learning their son would need a feeding tube for the rest of his life, Julie and Tony Bombacino created Real Food Blends, a line of enteral nutrition. Read the full story.