The person who never introduced herself, asks, “On a scale of 1-10, how is your pain?” I waited a moment expecting guidance before responding, “On a scale of 1-10, well, I have never experienced 10, I would imagine that as being shot or bearing a child. A 7 is slamming a car door on your hand, 5 is painful enough to prevent certain day to day activity and a 4 makes it difficult to sleep. With that as a reference I am a 4.5.”
She with no name then said, “Great. Where is your pain?” I’m confused by the enthusiastic response of great when I described pain, but it is Monday morning, maybe she is just tired from the weekend. I told her, ”All my joints hurt, I have an Ehlers Danlos1, I said that when I made the appointment to make sure this was the right doctor and I asked that be noted. Do you have that documented anywhere?”
Glassy eyes followed up with, “Which joint has pain?” This felt like a repeat of when I made the appointment, screening questions. She is a screener. I reply, “My knees. I understand you have screener questions. I have Ehlers Danlos, I am here because it was recommended that I see someone with Dr N’s specialty is he the right doctor; should i wait to talk to him?”
Undeterred, she continues, “Which knee has pain?” At this point, I threw my hands up in the air out of reflex, is this what we are doing? No acknowledgement of what I have said or asked; just stick with a script? I take a deep breath, before saying “both.” Maybe I needed to explain more. I pulled my diagnosis out of my bag I try to hand it to the woman. She stares at me and smiles like something out of a horror movie. I’m not sure if she was rude, inept or I’d violated some covid protocol. Then she says, “Would you like an x-ray for your knees?”
I bark out an indignant, “No.” If you’d just walked in and saw my face and heard my response, you’d assume she’d just asked me if I’d like to have my hand slammed by a car door. Now, totally confused, frustrated and annoyed, I look at her imploringly and ask “Why did you ask me if I wanted x-rays?” She stood up and casually responded “Oh we are just offering it.” That same tone of voice and demeanor as someone offering you a cup of coffee. She walked out of the room closing the door behind her. I note that because at this point, I think I may have stumbled into medical care gone awry. Maybe she didn’t take the report because she was a hologram? Except holograms can’t open and close doors so, I’m pretty sure she noted me as agitated patient in room 6. Left alone in the room, I made notes on what had just happened. A part of me was screaming, “Leave now, get out.”1
I flash back to 23 years ago. Am I going to end up like my dad? My dad had been in the hospital for several days with severe stomach pain. He died on October 17, 1998 due to medical errors. He bled to death in the hospital. My mom was told she had a lawsuit, but she declined, in her words, “it won’t bring my husband back.” My dad was on Coumadin, a blood thinner. Everything about my dad would contraindicate Coumadin. Was there a lack of medical history when it was prescribed or did good outweigh the risks?
Everything about my initial encounter this week felt like, how to avoid a lawsuit (don’t answer any questions) and how to make money (offer x-rays prior to the consult.) The US is not ranked anywhere near the top for the best healthcare in the world. Everyone has a medical story of not being listened to or heard at some point. So we go to a different doctor and avoid the “bad” ones? Is this acceptable, or is there a certain amount of care and support we should expect? Am I complicit? This week, consider, what your expectations are when seeking healthcare. When would you walk out? When would you raise a concern and who would you make it to?
1 Part 2, the Doctor will pretend to see you now is next week.
Watching Dopesick on Hulu now, drama about the criminal activities of Purdue Pharma as an oxycontin drug cartel. They are the inventors of the “pain chart”. I held my breath when you mentioned it, hoping the next sentence wasn’t, “I was prescribed OxyContin.” Your story is an important one. Thanks for sharing it.
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