Reluctance To Visit the Emergency Room As A Chronically Ill Patient

It was a Thursday night and I was experiencing the ravages of an ear infection that seemed to go from 0 to 100 in approximately 2 hours. I’ve never had ear pain come on so fast. I was convinced my ear drum was going to rupture before I’d be able to get care. Yet, when I went to get my husband to ask him to take me to the emergency room, I ended up delaying our departure - through tears of pain - because I was afraid of being mistreated at the ER.

Why was I afraid of the emergency room?

I am fortunate to live in a city with several emergency rooms available, both freestanding and attached to hospitals. I have been unfortunate to have several emergencies or urgent needs occur after urgent care is closed, so we have been to the ER many times over the past few years. We’ve gone for bad cuts on my son and my husband, chronic croup flare-ups in our youngest child, a possible scary spider bite, and other issues involving severe pain or fevers.

We have a favorite ER, as weird as that is to say, because we know there’s typically a short wait and they generally provide good care when it’s something like our kid needs a few stitches. However, the last 2 times I was the patient at that ER I felt belittled and pushed aside.

At one point different providers at the facility said things like, “sometimes this just happens to people with diseases like yours and we don’t really know why” and “your illness probably caused your body to overreact.”

They made me feel like I should have stayed home and like something important was being missed at the same time.

I may have been cared for in a mostly cordial manner, but I felt unwelcome, invalidated, and possibly lacking a more thorough evaluation. So when my ear infection turned into an 8/10 pain level emergency between dinner and bedtime, it still wasn’t enough to get me to walk through those specific ER doors.

I spent painful minutes going back and forth with my husband about choosing a different location for care.

Anxiety, pain, and treatment

It was a painful ride to the different-from-usual emergency room. Each bump in the road made me feel like my ear was going to burst. I went through the sliding doors, talked to triage, sat in the nearly empty waiting area, and couldn’t help but tremble as I waited. Tears poured down my face from the pain spreading toward my jaw. It felt like the entire left side of my head was going to explode.

I didn’t know if this emergency room experience was going to be any different. I was afraid I would encounter an exasperated medical professional who would make me feel like I shouldn't be there. I was mostly afraid of how much worse the pain might get if something wasn’t done soon.

Eventually my husband and I were taken to a “consult room” with two chairs and a stretcher in the corner. This was new, since I was used to being put in a room (and there were clearly empty rooms). The room was literally in a forlorn corner of the ER space.

A physician assistant came in, confirmed I had a raging ear infection, and offered me antibiotics and pain meds. I was confused about how this infection had gotten so bad so fast, but the provider told me that it happens sometimes and left. Maybe this is true, but it had never happened to me before.

I couldn't stop the feelings of desolate abandonment that raced through my body. Were those feelings valid? I don't know. I took the offered dosages of medications plus a prescription for the rest and was sent on my way.

Still lacking reassurance about emergency care

I felt uncertain as we left the ER. I was afraid of what it meant for an infection to advance so rapidly in my immunocompromised body. With my level of concern, I thought I might be getting IV antibiotics, a scan, or even just an hour or two of monitoring. Since the medical providers clearly didn’t think that was necessary, I walked unsteadily back to the car with my husband.

Later, I read the notes from my visit and learned a little more. The provider had written that a diagnosis of mastoiditis, where the infection spreads into the nearby mastoid bone, was considered but that there wasn't evidence for a full work up. I felt uneasy, because of the high pain levels and the temporary hearing loss from the fluid in my ear.

I was afraid that something had been missed or dismissed.

I questioned if the provider had looked at my medical history and risk factors before making that decision. I was already home at this point, but I was prepared to head back to the ER if it seemed like my emergency hadn’t been averted.

I’m okay for now

Thankfully the antibiotics worked well enough overnight that the pain level was manageable the next day. It’s been about a week and a half and the fluid has finally begun to drain from my ear, restoring my hearing enough to balance and function well (and effectively communicate with my kids again).

Nothing bad happened, but I still wonder why the infection happened so fast and if there was more risk that wasn’t addressed. I don’t look forward to future emergencies.

It’s very hard to advocate for yourself when you are confused or distraught due to intense pain.

An emergent care provider isn’t a part of my medical team that I get to choose ahead of time. I have to see whoever is available and, of course, I hope I don’t have to see them at all.

It’s intimidating to be a complex medical patient when you’re having an emergency of any kind. Have you ever avoided seeking emergency care over fear of mistreatment?