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When I Realized It's OK to Stand Up for My Health in Front of Doctors

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Lately, I have had the misfortune of battling my way through a debilitating Crohn’s disease flare. Unfortunately, my case has been quite drug resistant and I have had little hope of relief. Sure, I’ve had discussions about trying new medications. I’ve had surgery, hoping to force this nasty disease into backing down. I’ve damn near begged for help finding a course of treatment that will promise remission. I enter each appointment with a list of questions and suggestions of what the next step could be. Sometimes, we can come to an agreement, but we usually hold out hope that this current path will lead us to victory.  I’m asked to give it a little more time and “bear with them.” No matter what the outcome, I always end the meeting with a smile and a hopeful statement that we will have good news when we see each other next month. But the minute my butt hits my car seat, the true emotions rip through me.

Why is my case so difficult? Why have I racked up a long list of failed medications? What did I do wrong? How do I keep waiting for relief? How do I keep powering through the pain, nausea and mental defeat? How do I keep holding out hope when I have no evidence of success? And how can they expect this of me? I’m sure the doctors understand I’m in pain. I know they see my blood work looking worse and worse. I know they see the weight loss. But how do I help them see my big picture? We’re looking at the same painting, but interpreting it with our own knowledge and hopes. I have to advocate for myself and find the most respectful way to take control of my health plan. I have to find a way to move past the emotion, yet ask all of these questions necessary for my own growth and knowledge.

During my latest trip to the emergency department, I had the chance to be my own advocate and speak up. But I backed down. I became meek and timid, wishing I never stepped through those doors. Within five minutes of my initial exam, the doctor told the nurse, my mother and myself that it was “just” a Crohn’s flare. It’s “just” some abdominal pain. Was it my Crohn’s disease that brought me in? Yes. Was is “just” abdominal pain? God no. It was two weeks of a stinging ileostomy, two weeks of intense nausea, two weeks of breathtaking cramping. It was two weeks of wear and tear on not only my body, but my pain threshold.

Sure, on a typical day, I can muster through the day at a mind-fogging six. But as the physical pain reaches a tear-jerking eight, the nausea and everyday life become unbearable. Fourteen days of climbing pain levels and nausea have led me to this man, asking him for relief. For a little time to regain my mental endurance. For an air strike against the enemy, allowing me time to refuel for battle. I wasn’t asking for a miracle, just help getting these levels back under my control. After hearing the word “just,” I knew I was in for a disappointing stay. Sure, blood work was done and exams were completed, but no nausea relief or help replenishing fluids was offered. Pain management suggestions weren’t even brought up. After all, it was “just” a Crohn’s flare.

I had the perfect opportunity to ask for help. I could have repeated my situation. I could have asked for a doctor with experience in this chronic illness. But I sat in silence, holding my belly, trying to soothe myself into some sort of relief. I apologized for bothering the nurse when I needed help. I smiled when I wanted to cry. Thankfully, I had my mother beside me who could see my walls building and demanded to meet with the GI team. When we finally met with the team, we retold the same story with the same request for relief, not a cure. We were able to look at the same painting and understand what the other saw. Pain management was ordered and fluids were added to my appointment for the next day. Notes were sent to my GI, requesting a new medication plan. All it took was a little steadfast determination and courage.

Doctors are human, too. They step into a situation and evaluate it to the best of their knowledge. It is my health and my choice whether their solution is suitable for me. It is also my duty to be as respectful as possible while advocating for my care. While I understand the doctors have a vast knowledge and history to rely on, I have an in-depth knowledge of my body and what is wrong. I have the ability to vocalize what it wrong and deem what I believe is the best way to help the situation. I am still finding my voice in this journey. I’m still learning to stand up for myself and use my input to help guide my healthcare. This experience has shown me that these skills are not only important, but imperative for success in my journey.

Originally published: July 1, 2016
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