The Disgruntled Patient
It’s 3 pm on a Thursday and you’re on your 4th doctor’s appointment of the week. Glancing down at your bandaged arm you count the bruises and scabs from a variety of tests. The Life of a chronic patient. It’s now your 15-minute opportunity to try and connect with your doctor about your disease and treatment. 15 minutes to discuss something that takes over every part of your life, every minute of every day. You only have 15 minutes. It's no surprise that more often than not patients complain about not feeling heard, not connecting with their doctors, or being ill-informed.”
I feel like I’ve finally gotten to a place of empowerment when it comes to my disease, and yet I’m still fighting to be heard, seen, and taken seriously. As a person living with ulcerative colitis, I have become frustrated. I’ve hit a wall. With the frustration comes depression and a lack of motivation to participate in my own health advocacy. Every time I speak up, I get shut down. New symptoms and diagnoses pop up faster than I can keep up with. Fighting my medical team while trying to raise a human in the middle of a fatigue filled week is not easy. Sometimes I just give up, but as a mother, giving up just isn’t an option. How do I find a way to stop being the disgruntled patient and become the empowered patient who communicates effectively with my doctors? These three tips can help you.
Go in prepared:
The day before your appointment, add a bunch of questions & concerns in the notes section of your phone. If you are wanting to talk about treatment options, clinical trials or tests, go in with some information you researched. Start a conversation that will help move your treatment progress in the right direction. If your time runs out, ask if it would be possible to set up a call to finish up the conversation. Don’t leave your appointments feeling defeated or steamrolled.
A second opinion:
Don’t be afraid to seek a second opinion in order to reach a conclusion about your disease and treatment options. I know that it can feel like cheating on your doc, but you have to put your health first.
Knowledge is power. Research. Research. Research! Reach out to IBD advocates online. Weigh pros & cons. Consider all elements of your life when thinking of new treatment options. Make sure to include these while advocating for yourself to your doctor. Take all the information you have and present it to your doctor for an in-depth discussion. Insert yourself into your treatment plan.
Consistently advocating for time with your doctor is frustrating, but you must balance it with everything else you are going through. Staying consistent and organized will help you feel empowered. And feeling empowered will help you push through on those days you don’t want to be a patient.
Have you completed the IBD in America survey? Answer poll for survey link.