I am a chronically ill patient struggling with Crohn's disease (a type of inflammatory bowel disease), Interstitial cystitis, and epilepsy.
I frequently feel like I live at the doctor's office, but having a great medical team has made that seem somewhat more acceptable. Earlier this year, I had a sudden allergic reaction to a high risk medication that I had been taking for well over a year.
This is not completely unheard of and is usually caused by the body building up antibodies to the drug itself. I immediately returned to my doctor's office to make a new action plan for my Crohn’s Disease and find a way to treat my symptoms in the interim.
As much as I love my gastroenterologist, this was a time-sensitive issue and the only appointment I could get right away was with the nurse practitioner. The initial appointment after my allergic reaction was quick and only resulted in my leaving with several lab orders and the need to schedule another appointment.
I agreed to return and see her in two weeks after my labs were complete and she had consulted with the physician. I felt rushed and like my experience was being minimized by my provider… but I thought it was just all in my head.
A week later, I received a phone call from my gastroenterologist’s nurse. The doctor had reviewed my chart, suggested Entyvio (the latest biologic treatment available for Crohn’s disease and Ulcerative Colitis) as my next treatment option, and the nurse was requesting my permission to work on obtaining a prior authorization from the insurance company.
She also wanted to remind me to keep my appointment with the nurse practitioner for the following week. I had met with this woman before, she knew my case, and we had a good relationship (or so I thought). Why wouldn't I want to return to her?
It was that very next appointment that I got an answer to that question.
While sitting in the exam room waiting my turn I could hear the words, "Gosh... she was just in the ER, and was just here a couple weeks ago! What does this woman want from me?!" At that moment, my heart sank and I lost faith in my trusty team of medical gladiators.
Something was wrong. I was in pain and my nerves were all over the place. Why would it be unexpected for me to seek help under those circumstances? In a society where medicine costs a fortune and people could use some compassion, shouldn't a good bedside manner be more commonplace?
I’ve actually been on both sides of this story. That’s what makes this such a tough pill to swallow. I have 5 years of medical office experience and have been the innocent bystander/fellow employee saying “Hush! Those walls are thin and the patients may hear you!”
I get it. Like every other career path out there, working in the medical field can be exhausting and you’re bound to come across some people you simply don’t like. It’s also the same reason I try to be easygoing and understanding with medical office staff when I’m the patient.
The problem with my experience wasn’t that the appointment was rushed or that I still had unresolved issues. The part of my story that is unacceptable is that I was pushed aside without so much as an idea of how to find relief.
She didn’t want to know what symptoms were causing me the most trouble and she definitely didn’t take the time to help treat them. Instead, she assumed that because I was waiting for authorization from my insurance company to start a new medication, all was well in the world. My medical provider thought she was off the hook and she couldn’t have been more wrong!
My joints were aching, my heart was racing, I had abdominal pain, my stomach was upset, and I was nervous about what was coming next. I was dealing with quite a bit of anxiety during the process of making appointments, running tests, and submitting for prior authorization to start my new medicine.
Managing chronic conditions can take a toll on your body and even cause post-traumatic stress disorder. Don’t believe me? Check it out. I was emotional and scared at the time of my appointment and probably didn’t have it “all together” that day. Regardless, I still deserved to be treated with respect and dignity.
This is just an account of my experience at one appointment in my short 27 years of life. There are millions of other Americans trying to navigate the healthcare system and I am sure that many of them have an unpleasant story to share as well. For some, a visit to the doctor’s office is absolutely terrifying. Medical professionals have a unique opportunity each day.
Rather than being a source of anxiety, providers could ease a patient’s fears and turn an appointment into a positive learning experience. All patients should feel comfortable asking questions and always leave each appointment with a clear idea of what steps are next.
Stories like mine are the reason why my passion is in volunteering and advocating for the patients who are battling chronic conditions. I have a strong support system, a small amount of complaints for my medical team, and great health insurance. Some patients are not as fortunate as I am and need someone to fight on their behalf.
I also have the honor of calling myself “camp counselor” to a group of teenagers at a camp exclusively for kids with inflammatory bowel disease each summer. I teach those young women to speak up and advocate for themselves because no one else will.
I am embarrassed to admit that I left my previously mentioned appointment without addressing the poor professional conduct, and believe I should be following my own advice. Don’t worry; I have an appointment with my doctor in September and I plan to bring these events to his attention.
It is not my intention to attack medical providers (doctors, physician assistants, or nurse practitioners). In fact, I believe many of them have a desire to provide quality care or are already doing so. My goal is to raise awareness for the patients who are too fearful to ask questions, are unable to receive proper treatment due to misdiagnosis, or are told, “It’s all in your head!”
In order to maintain my sanity and lead by example I will speak with my medical providers about the type of professionalism that I expect, encourage others to speak up for themselves, and help raise awareness by continuing to write about my experiences.