I’ve often had imaginary conversations with doctors concerning my family’s health. I know that we didn’t encounter as many unsupportive doctors as many Cushies have. But we met up with a few.
The first thing I tell them (remember this is all in my head) is to believe me when I tell you my child is sick. He didn’t just wake up one morning and decide that he liked acting sick, laying on the couch and sleeping all day. Throw in failing a few classes and he’s really having fun.
I know my kids and I know when they are sick. Please believe that they aren’t pulling the wool over my eyes. Speaking of eyes, they tell the whole story. A sick person has dead looking eyes.
When my child says they don’t feel good enough to work anymore don’t ask them if they play video games. Of course they do. Playing video games can be mindless but at the same time get your mind off how bad you feel. I once asked a Cushie, who played a lot of video games at the time, what the attraction was. She told me “control.” That made perfect sense. Once he got really sick there was nothing in his life he could even pretend to control.
When we have driven three hours each way for a doctor appointment don’t dismiss us because of one set of normal lab results. At the initial appointment you told us that when testing for Cushing’s there could be false positives and false negatives and no matter what the first set of test showed, we’d do more testing. So do as promised. Test some more. Don’t tell him to exercise and eat better. Oh yes, you also told him to work with a psychiatrist. Do you know how bad I wanted to reach over and slap that condescending smile off your face? No, I don’t imagine you do. You seemed to have no feeling for your patients. Oh, by the way, those false positives and false negatives you referred to? That’s really called Cyclic Cushing’s. Learn your trade.
After examining my child don’t tell me there is nothing wrong. I know you saw the stretch marks, the buffalo hump. You asked about depression. You were told he couldn’t sleep well, etc., etc. Why did you dismiss us? You actually suggested that he liked getting out of school to go to the doctor. Oh sure. A few years later after both kids have been diagnosed and had two surgeries each to control Cushing’s, my daughter ends up in the local hospital. You happen to be her physician. Why did you wait until you were surrounded by med students to ask me if you’d missed anything with Justin (all those years ago). In front of all those students I couldn’t very well say “Everything.”
In my mind I’ve told all of you a thing or two that I’ve learned about Cushing’s in the last few years. I had to learn to save my kids. You should of learned to save your patients. I even wrote one of you a letter after the kids got a dx. You wrote back that you would try harder with any other patients with the same symptoms. You didn’t. A friend took her son to you on my recommendation because I thought you meant what you said about trying harder. You blew her and her son off faster that you blew us off.
And to one particular local nurse. When my daughter is in your care because she has been throwing up for weeks on end after having her adrenal glands removed to control Cushing’s, do not suggest to her that she is doing this to herself to lose weight. If you can’t read her chart and see what is going on with her, you come find me. She’s been through enough in the last few years without you suggesting that she is bulimic. Oh wait. I really did tell you that. I’m not sure you believed me but you did leave her alone.