My Plea to the Medical Community: Listen to Your Patients' Stories

Those of us who have children with disabilities or who have chronic pain and illness see a lot of medical professionals. To the ones who go out of their way and listen and help, we are forever grateful!

But there is another class of medical professionals. These professionals don’t listen. I’ve been trying to figure out why. I don’t know if they are just so rushed trying to care for everyone and don’t have time due to the way our medical system is set up or if they are burnt out. I really hope it isn’t that they just don’t believe us or care anymore.

This is the nurse who, when I went into the ER for the second time in a week due to back pain so severe I could barely move, couldn’t put any pressure on my spine or urinate, seemed to think I was faking. She tried to forcibly pull me out of bed to make me walk to the bathroom where she was confident I could go. My screams brought the head nurse. Later that day I was admitted to the hospital for my first emergency back surgery.

This is the technician who called with the results of a test for my son. When it wasn’t what we had hoped, she accused me of just wanting a vacation in Seattle. (We lived in Alaska at the time and medical resources can be difficult there.) It wasn’t like I faked or manipulated his test results.

This is the urologist who asked me what I was doing there with my son. Um. Well, his former urologist had previously told us that if he ever had an infection he needed to be seen immediately due to the issues he has with his kidneys. This new urologist told us to go home, there was no reason for us to be there.

This is the doctor who refused to treat or see me simply because I had a child with me. I had an infection and needed antibiotics but she refused to do anything. Instead, I was charged a copay and had to make another appointment to be seen by a different doctor and pay another copay.

This is just a sampling of the experiences my family has had. Luckily our good experiences far outweigh the bad, but it happens often enough that it is really disconcerting. We are not alone in these experiences; all of our friends who have families with disabilities have multiple, similar stories.

My plea to the medical community is to take the time to find out our story. Don’t make immediate sweeping judgments from the moment you walk into the room. The majority of us would rather be any place else and spend our money on anything other than copays, medication, treatments and tests.

My promise in return is that I will take time to give you the same consideration of your story when you are an hour late to my appointment and I have been sitting there in pain waiting to be seen. None of us are perfect, but together we can make these medical experiences better and offer kindness and courtesy.