Cancer. Auto-immune disease. Chemotherapy. Edema. Intravenous. Malignant. Benign. Prognosis. Contusion. Acute. Chronic. Biopsy.
These are terms that medical professionals are trained to use. When they use them with patients and caregivers it can be confusing and overwhelming. Especially when they are following a diagnosis like cancer or an auto-immune disease.
For the patient and/or caregiver it can feel like each one is slapping you in the face. Or maybe they don’t even register because they follow something like cancer or auto-immune disease. For the person who’s not trained in the terminology, it can be disorienting.
I felt like I had a pretty good grasp of medical terms. After all, I grew up in a house with a doctor and when I was small, I would go to the hospital sometimes when he made rounds or hung out at his clinic. I also grew up with horses and spoke with veterinarians frequently. When my husband was diagnosed with relapsing polychondritis and we were seeing specialists sometimes it felt like they were talking at us instead of with me and my husband.
Mike had been diagnosed with a rare auto-immune disease in January 2013. In the fall of 2014, he was short of breath. He had asthma so he was familiar with the sensation. We’d seen the pulmonologist at KU Med Center on Monday. On Wednesday he’d gone in to see his local provider because he wanted to be able to bowl that evening. I was out of town at a tourism meeting. When I got home his pickup was still at the clinic even though it was after 5:00. So I went around to the hospital entrance.
His provider came and met me. She took me to a room and told me to sit down. Then she told me he had lung cancer and it had spread. I didn’t hear anything else she said. I was dumbfounded. Those words were reverberating in my head. How do we proceed from here? Is it urgent?
As a patient or caregiver, it feels urgent to us. All the while it feels like the medical profession moves at a snail’s pace. For several weeks that fall, we would go to KU Medical Center (350 miles and a minimum of five hours) for tests to come back the next week for the results and get another test. Wait a week and come back. They didn’t find the cancer we were told was there. All we could do was keep moving forward.
All those medical terms are frightening. Especially when they come at you in rapid fire. As patients and/or caregivers we may not want to ask questions, so we don’t feel stupid. We tend to put doctors on a pedestal and forget they are human just like us. It doesn’t help if we feel like they are talking down to us using medical terms we don’t understand.
When doctors share snippets of their lives outside the hospital or clinic it makes us able to relate to them better. It humanizes them and helps to make it easier to ask questions. Even if it’s to explain some medical jargon that we don’t understand. Mike’s pulmonologist asked me one time if he was febrile. I must have had a deer in the headlights look because before I could ask he asked if he had a fever.
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