The paper crinkles under my hips and I tell myself for the twentieth time that this doctor’s visit will be different. I’ve finally found a female gastroenterologist in my area who is accepting new patients and I’m prepared to talk to someone who will finally empathize with how hard it is to get out of bed and put one foot in front of the other for my family, my friends, and my employers. Not while daily pain claws at my ankles, pulling itself up the calves of my shaking legs, wrapping around my abdomen, ripping and grasping and burning, trying to pull me down once and for all.
I imagine she will look at me with sympathy in her eyes and shake her head with disgust when I tell her how my male doctor told me that I couldn’t take over-the-counter or prescription NSAIDs like Motrin because it would make my Crohn’s disease worse. That he recommends Tylenol and “toughing it out”–a prescription that I wish I could forget.
Three years into my disease, I’ve learned that because I’m chronically ill, I can’t take narcotics for my pain because I could become addicted. It still doesn’t make sense to me, though, that those who need narcotics the most are the ones who are often not prescribed them because their pain has no potential end date. I know, now, that I would have better luck treating my pain if I had a broken arm and not a broken immune system.
The door cracks open and she enters in a cloud of coffee and sweat. Her dark hair is a nest around her face and she has huge wet stains under the armpits of her sweater which I note as odd because it’s 8 a.m. and it’s not the middle of summer. I wonder if she went to the gym in her work clothes, but I don’t care because she can smell as much as she wants to. I’m just happy that I have a chance to talk to her.
She slaps down what looks like three hundred freshly printed pages held together by a large black binder clip. My heart sinks when I see that the printed pieces of paper that hold every minute detail of the past three years of my life are untouched–not one piece of paper ruffled by a curious reader. I try to remain open and confident but I can feel myself shrinking away from another uninterested doctor.
She flips through the pages like a child does through a notepad they used to draw and animate a bouncing ball. She asks me a few questions and I answer them honestly, hoping that she will be “the one”. I try to explain what I’ve been through and what I’m facing–possible surgery–and why I want to try something else first. Does she have any suggestions? She shakes her head and points to the stack of papers she didn’t read. “I wouldn’t do anything differently,” she says. “It looks like he covered everything.” “He” apparently refers to both of the gastroenterologists I’ve seen since I’ve been diagnosed with Crohn’s disease, but she wouldn’t know that because she didn’t read my file.
I’m still desperate to try and make a connection–to tell her how my once fairly effortless life has slid into a nightmare of pain. Maybe if I describe it, she will understand what I’m facing and agree to move me off of Remicade and onto something new. I want to try Humira, but my current doctor doesn’t think I should change biologics.
“I’m still in a lot of pain,” I say, “even on Remicade. I don’t think I’m in remission, but my doctor says I am even though my joints are inflamed and I can’t leave the restroom. Each time I go is agonizing–the only thing that helps relieve the pain is vicodin.”
Her back stiffens and she won’t look at me. “Don’t say that,” she says, quietly.
I’m confused. “Don’t say what?”
She looks at me and will only make eye contact for a few seconds. “Don’t say that vicodin is the only thing that helps. You’ll be labeled a drug seeker.” When she turns away again I realize what’s happened–that she’s already labeled me. “I can give you Zofran for your nausea.” I nod, not because I want Zofran, but because I want to leave. I feel dirty and judged and I can’t believe I opened myself up to this treatment–that I allowed myself to once again hope.
I flinch when she finally examines me and rush out of the office with a prescription for Zofran in my hands. As I pull out of my parking space, I can’t stop the tears. My pain is still with me.