I know first-hand what it feels like when a doctor’s office isn’t listening to you. Two years ago, I sat in the office of my Gastroenterologist the day after I came home from my honeymoon. I was feeling light and happy and suddenly, as I walked into the office, and as I sat in the exam room I felt the beautiful honeymoon bliss bubble burst before my eyes.
They were denying approval from my next Remicade infusion, the physician assistant told me as he entered the room, because I was noncompliant. He said that the nurses had called me twice and I was unresponsive to the messages. I did not obtain the lab test required to keep the medicine. I shook my head in shock and grabbed my phone to look through missed calls and voicemails. I had none from the GI office. I quickly logged on to the patient portal and did not have any new messages.
I didn’t understand why this was happening. From the moment I was put on this treatment plan, which included infusions every 8 weeks, I abided by it. I tracked my bowel movements, I resisted foods I knew triggered symptoms and kept a food diary in case others came up. I practiced yoga. I made sure I managed stress and got enough rest. I attended every scheduled appointment and never cancelled. I followed directions. I obtained every lab requested of me.
“This has to be some kind of misunderstanding. I don’t know what you’re talking about. I called the office after I got my labs before the wedding and spoke with the receptionist and she said I was all set. I need this medicine to stay in remission.” Tears were spilling over the rims of my eyes as felt hope slipping away and fear wedged its way under my skin.
“Ulcerative Colitis is a serious disease,” the physician assistant lectured me as he tossed a box of Kleenex in my lap. “You need to take it seriously or you could die or lose your colon. You need to be responsible for your treatment. There is no record of you contacting us,” he said.
“I don’t understand,” I said through sobs as I fought the panic creeping up inside of me. I knew the seriousness of this disease. I spent a month in the hospital after a yearlong flare that just wouldn’t quit. I fought for my life, unable to walk more than a hallway at a time and rushing to the bathroom 20 times a day just to lose more blood into the toilet bowl. I had to get blood transfusions and steroid injections and doubled over in pain waves repeatedly.
They were going to take away the one lifeline that was keeping me in remission, and it apparently was out of my control.
“I follow all the directions,” I told him, pleading my case, “and I keep all my appointments. I know how serious this disease is. I went to the lab the week before I got married, because that is when the labs were ordered. I don’t have any calls from this office, or messages on the portal. I did everything that was asked of me.” A week ago I had one of the greatest life events ever, getting married to my best friend, and they were robbing me of all the joy that day had filled me with and leaving me with a giant stain of fear. He hadn’t even asked how I was doing.
“Well, it says here that they called you twice and you have not responded. You had to get those tests, and now we can’t give you the medication because of your failure to comply.” He wouldn’t look at me and just continued to scroll through pages on his computer.
“You can’t get the medicine without a TB test,” he says. “We mailed you a letter telling you this as well, I see the letter right here.”
“I got a TB test!” I exclaimed, “And I didn’t get a letter. When was it mailed?”
“We don’t have any records of your TB test,” he pauses and scrolls through the charts. “The letter was mailed…today.”
I was shocked. “Well, that would explain why I didn’t get it. I don’t understand. I got the test. I haven’t gotten any messages. Did they lose the results? This has happened before, they lost my stool sample last year. Could there be some kind of exception made so I can get the infusion this week and then get the test that your office seems to have lost? Why am I being punished when I’m doing everything I can?”
He wasn’t listening to me, he was making notes on my chart.
I take great care, I thought to myself as I shook my head and tears fell into my lap. I had gotten all the tests they asked of me! I had the bruises from the blood draw that I was worried would show up in the wedding pictures. I felt like camera crews were going to pop out and this was a giant joke.
“We aren’t punishing you,” he said as he closed his laptop and got up. “You will now have to see an Infectious Disease doctor for the TB, and we can take it from there. The doctor’s office will call you to schedule an appointment. Maybe you should consider taking better care of yourself so we can treat you.”
And with that, he shook my hand and left the office.
He was right. I did need to take better care of myself. Starting with finding a new doctor.
After this event took place, I immediately contacted my Primary Care Provider, who has always been my greatest supporter. We obtained the referral that I needed and eventually I found a new Gastroenterologist that listens to me, hears me, and works with me to manage my disease. When I visit that office, I feel respected, cared for and heard. I never returned to that first office and never will, but I often reflect on my experience and think about what I could have done at the first sign I felt I wasn’t being listened to that may have helped.
To prevent this situation from happening to anyone else, I’ve come up with a list of four actions to take when you first feel your doctor isn’t hearing you. I hope it helps fellow patients know they are not alone and helps ease the burden of navigating this unexpected health risk.
My name is Jacklyn. I’m learning to live with ulcerative colitis. I was diagnosed on April 17th, 2013 with UC. Aside from having UC, I practice yoga, and love my corgi-mix dogchild and my boyfriend.