Valerie Rice | May 4, 2021
I had the absolute worst appointment with my doctor the other day. Actually, it was April 7, 2021 to be exact. This is important, remember that. This doctor is in charge of pain management. Now. For those of you who follow me, you know that I have chronic illness. Several, actually, that tie in to my genetic mutation, Ehler-Danlos Syndrome. For those who don’t follow me, buckle up. My doctor came at me sideways and aggressively told me that If I wanted percocet I needed to get injections. See my TT for THAT one. After I left, shaken and terrified to my core, I attempted to digest this experience. And now I will share it with you all.
Listen to Blue Monday by ORGY on #SoundCloud
WHAT STRUCK FIRST
My provider “doesn’t care about my EDS.” This is a huge concern for me because …well …. Erm … that is why I was referred? In patients with my condition, pain is intractable. In fact, they have a name for it. It is something that will never improve. It will not fade over time. And it will absolutely get worse. It has a name and, AND, and ICD-10 code, so, you’re covered.
MY OTHER DOCTORS
Now, I have several specialists I see on a monthly or semi-monthly basis. They each have a job. One works on my heart, one my brain and nervous system, one my mind, one my lungs, and so on. None of them will treat pain. Why? Because anything can interfere with the treatment from pain management. The pain doctor has the one job; do the thing. Treat the thing. We, my medical team and I, provide the info. You, the pain doctor, diagnose and treat the thing. The thing directly in front of your face. The thing that I have lived with for decades. The fucking thing listed in every single medical journal for pain management professionals. The only thing, LiTeRaLlY the only thing you are capable of doing to help someone in my condition as outlined by your profession, is expected of you. It is miniscule. We are all, ALL of us, my medical team and I, staring at you in bewilderment. Why are you fighting the thing?
WHAT MY MIND THINKS
When you try to reinvent the wheel, and search for a new cause for my pain, I wonder what is wrong with you. I truly do. Did you forget your thing? I come in with notes to attempt to advocate for treatment, and you get angry. This confuses me. I mean, most people seem to appreciate help when confused, so. My bad? The last providers i had in the same clinic seemed to know what they were doing, so this is just bonkers. When you became aggressive in tone, after I had spent months trying to get referrals from this provider, but being dismissed or debated because it wasn’t covered by my insurance or some unknown reason, I got really confused. I only asked for the standard, sorry, gold standard treatments to extend my lifespan and make me comfortable. I thought it perfectly reasonable to ask for hormone treatment and therapeutic interventions to reduce the need for narcotics. My bad; forgot I was poor.
WHAT REALLY SCARES ME
There were a few statements that absolutely terrified me. When i reminded her that she had, in fact, reluctantly agreed to send me to OT at my request, she did a 180, smiled, and filled my prescription stating that “she can’t be expected to remember or take notes all the time.” Wait, what? No, we are NOT going to breeze past that like it didn’t just happen. Yes, the fuck you can be expected to take notes Ma’am. And I do. Every other provider does, while I am sitting there, and they even try to clarify what I say sometimes (white privilege, but that’s for another day). So yeah.
Additionally, when she said “Company policy says” that I need to engage in a treatment that is absolutely NOT to be performed on someone in my condition, I seriously almost lost it. No, that’s why I refused, which made her angry. And I walked in there with receipts. Straight up printed pages from recent Medical Journals with the reference pages (in APA format, sorry) so she could look it up and save it. That made her MAD. like, BIG MAD. Which means that my life is less important than company policy, and it is chilling.
Another fun one that gives me chest pain when I recall it is when she said “If you want your [medicine] you will do [the treatment]” indicating in no uncertain terms that if I did not seriously risk my health and safety, and possibly my life, I would not receive even the most basic treatment. So that was fun. She further accused me of lying about my medical history as if keeping track of the medical records that were supposed to be sent to her, and read by her, was my responsibility. I mean, the rest of my medical team is up to speed.
Now, thanks to the US war on drugs, as well as the nature of the healthcare system, I am at her mercy. I cannot complain because it will allow her to label me a drug seeker and prevent me from forever receiving pain management again. I can’t continue seeing this provider, because doing sop means that I am forced to aggravate my condition and risk my life for treatment. What’s a girl in poverty to do? Nothing, that’s what.
And yes, I got discharged early from the OT I so desperately wanted. Why? Because I have dysautonomia, passed out and now they don’t want to see me. Just like last time. And the time before that, and the time before that. And no, I can’t afford the one and only specialist here who can treat it, and no, she doesn’t take my insurance because I am poor. So, as I see it, and I don’t know if this is the PTSD or the Autism talking, but she has three choices. She can do the ethical thing and provide me the proper treatment. She can do the moral thing and give me an exit point (we will get into the morality of death later). She can do the Capitalist thing and continue treatment as she is. Fun times, right? Thanks for listening to philosophical meltdown today friends, let’s work together to advocate for people with disabilities and, by extension, all of us. Until next time, be well!