Today's Topic: Share and Don't Share
"Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see."
I wish my medical team could see how hard it is to deal with health problems. Sometimes health care feels like riding a conveyer belt. Take these pills. This might sting a little. Hold still. You have surgery on Wednesday morning. Take a deep breath. This scan will last two minutes. Inject this before meals. Do you have your insurance card? Don't eat before this test.
On and on the conveyer belt moves and I feel helpless, strapped in, unable to take a moment off. I don't want to be a collection of symptoms, a name on a chart. Compliant or non-compliant. Good patient or bad. I want them to know I am a person doing the best I can to cope with diabetes and myasthenia gravis. Is my best good enough?
The language we use around doctors -- exams and tests -- remind me of school. They make me feel little and helpless, like I'm eight-years-old and in trouble again. I want them to know I am trying, even when my blood sugar is 353.
I don't want my health care team to know I deliberately delay getting blood tests. I put them off and put them off until finally I drag myself to the clinic. It's not because I don't care, but because I cannot bring myself to sit still and let someone hurt me again. How many times have I sat still while painful things were done to me? Sometimes once more is one too many. I know blood tests don't hurt "that much" but they are still a situation where I have to hold still and let another person hurt me again. I am so very tired of sitting quietly and hurting. The conveyer belt takes me places I don't want to go, and that's hard sometimes.
On the upside, I want my team to know that thanks to them I have a life that works. Their efforts aren't wasted. Because of my medical team I have a body that moves. I'm not thirsty and sleepy all the time. I'm able to get up and move and play the cello and live. And I want them to know I am grateful. Thank you doctors, nurses, scientists, pharmacists, and everyone else who has helped me. I appreciate it more than you know.