I saw a new doctor last week to address some hormone issues. She had never heard of mast cell disease. I gave her the run down succinctly: “The hallmark of my disease is anaphylaxis in the absence of IgE stimulation. We can anaphylax at any time for any reason. Some things make reactions more likely and we avoid those things when possible.”
Immediately upon hearing these words, she became uncomfortable. She took some history and asked me what medications I took. She looked over my test results and told me I should have IM steroids available in case of emergency. When I told her that injections increase my risk of anaphylaxis and that I use IV meds to avoid that, she literally threw up her hands. “Well, do you want the shot or not?” she asked crossly. I told her I didn’t want it.
She informed me that I needed several blood tests, which needed to be drawn first thing in the morning. No one at the lab will draw out of my port and getting blood drawn results in several sticks and generally cause a reaction. I asked her what I should do and she said, “Well, we’ll figure that out later.” Which means that she doesn’t care enough to help me figure it out.
She had me get up on the exam table. She listened to my heart. “When you touch my skin, it may start to welt, that’s normal,” I told her. “Oh, I’m not going to touch you,” she said dismissively. I closed my eyes and felt my hands curling into fists. She put her stethoscope away and ended the appointment.
I left her office upset. I have been around the block with arrogant doctors. They don’t really stress me out much anymore. This was different. This was not an instance of a doctor thinking they knew better than me how to manage my disease. This was an instance of a doctor deciding that treating me effectively was more trouble than I was worth. She decided that I wasn’t worth an examination. She decided it didn’t matter if I got those tests because she didn’t care anyway.
I live with this disease every day. Most of the time, being sick isn’t the hard part. Waking up every day and trying to believe that I am worth the trouble – that’s the hard part.