Advocating For Yourself

This is not a flare? Not a flare? I tried to tune out the cacophony of sounds around me so I could process the words I just heard. But the quiet chatter of nurses, beeping of machines, and complaints of other patients made it impossible for me to think straight.

I had spent the last few months desperately trying to tame yet another IBD flare to no avail. I was taking dozens of pills each day and giving myself weekly doses of biologics. Nevertheless, my symptoms had spiraled to the point where a scheduled CT scan turned into an urgent ER visit and an immediate admit.

My usual GI was in his private practice until that afternoon, so a young ER doctor was working with me. I spent time reviewing my medical history and conditions with him. He did not seem engaged, but I dismissed his aloofness to the monotony of this process.

Before I finished giving the ten-minute briefing I could now do in my sleep, he interrupted me and insisting, “There are no signs of a flare-up. You have developed an infectious disease because of the medications you are taking. Biologics and immunosuppressants are horrible drugs you know. They cause a lot of problems.”

His comments felt like a kick in the gut, which is the last thing I needed when my gut was already inflamed and bleeding. He proceeded to criticize these life-saving treatments that were far less destructive than uncontrolled IBD. Was I imagining things or was he blaming me for getting sick? Did he not realize how uncontrollable and destructive IBD could be?

I drew in a quick breath; I could not get sidetracked. My top priority was determining what was wrong with my body this time and how to get out of his horrible place.

“Are you sure it is not a flare?” I queried before reiterating that I had seen my specialist several times over the past couple of weeks and he told me I was in a flare. My doctor knew my history; He helped me through my previous flares which felt exactly like this.

The young doctor looked down at me and exclaimed that my specialist was wrong. He was my doctor now and he would get me better. “Don’t worry,” he assured me, “you are in good hands. My colleagues and I will get to the bottom of this and start treatment. We are some of the finest doctors in the hospital.”

A long sigh of relief escaped from my lungs. The hospital was the last place I wanted to be, but at least they were analyzing all possibilities. Maybe it is a good thing I ended up here after all. Perhaps this wasn’t a flare. No wonder I was having no success on biologics and steroids.

“So, this is not the IBD at all?” I confirmed with my mother once the doctor left. We both sat there confused. We started talking about how all of the symptoms aligned with my previous flares. How could my current doctor and his PA get it wrong? Hadn’t they said my most recent CT scan looked like my other flares?

What is it this ER doctor had mentioned about knowing it was an infectious disease because of my high white blood cell count? Didn’t an auto-immune flare cause white blood cells to increase? I mean, a flare-up puts your body in fight mode, right?

Neither my mother nor I have science degrees, but we knew something was not right.

When the doctor returned insisting on doing a rectum exam to check for blood, I asked if it could wait. What was the point in checking my rectum for blood when I had what seemed like gallons of it coming out with my stool? Was it even safe?

He reluctantly agreed, walking off in a huff after telling me I was merely delaying my room placement.

“Call your doctor, now,” my mom insisted in a hushed voice, “let him know what this doctor is saying. Get his opinion.”

She might as well have told me to testify in front of Congress on live television. My heart raced like a jackhammer. Crap. The last thing I needed was for my pulse to increase and bring in another cluster of doctors to my bedside. This was a nightmarish situation for the anxiety-ridden, confrontation-avoiding person I am.

My hands shook as I dialed the now too familiar number. My doctor’s PA answered. After hearing what was happening, she immediately got the doctor on the line. Basically, the ER doctor did not know what he was talking about. My doctor would be at the hospital in an hour.

My GI’s office must have contacted the hospital because I never saw that ER doctor again. A few nurses and interns stopped by to take care of me before my doctor arrived. I did not hear the words “infectious disease again.” No explanations. No apologies.

There are many wonderful, kind, and intelligent caregivers who listen to patients and admit when they do not know an answer. It is impossible for every person in the healthcare field to know about every condition, device, or medication. It is unfair to hold these already overworked professionals to such an unrealistic expectation.

Nevertheless, a decent healthcare provider is honest about their limitations. They do their best to listen to the patient and ask another professional if they are unsure about something. In other words, they do not let their ego get in the way. Unfortunately, this ER doctor (and a few others I have encountered) was more focused on proving his point than taking care of patients.

I am glad that my mother encouraged me to advocate for myself that day. Questioning an authority figure with years of education and training can be daunting. It feels disrespectful, pompous, and ignorant. At the end of the day, however, healthcare professionals are only human; they err like the rest of us. Trust your gut (pun intended). If something feels wrong; ask. If a provider is not listening to you; speak up for yourself. Ask if you can speak to someone else; Reach out to another physician at your healthcare facility. This is your health; you deserve to make it a priority.