I'd like examples of people with ME visiting hospital and not being cared for appropriately, to share with people working in healthcare. I remember one person was in the news quite recently and I'm sure there are more. Thanks in advance!
On Sunday I visited the ER for a vision issue. I saw many providers, none of whom asked me about my code status. I wanted them to put a DNR/DNI in, to ensure resuscitation would never be attempted at any facility in this healthcare system. When I was about to be discharged, I told the nurse practitioner I wanted a DNR/DNI because I did not want to be resuscitated under any circumstances. She immediately asked my if I wanted to harm myself, and started grilling me about my mental health. I explained my quality of life was extremely low due to my ME, and that her assumption that I was "relatively healthy" was dead wrong. I told her anxiety or depression are not affecting my desire for a DNR, that I've wanted one for over a year (which was a lie), and that regardless of the truth about my mental health, these are the only answers I will give her under any circumstances. When I said "There's a limit to how many questions you can ask about my mental health," she simply said she'd "document" our conversation instead of marking me DNR. After that appointment I was absolutely enraged for a day and solemnly swore that if she wants to block me from getting a DNR, I will do literally anything to get one. However, most of the medical abuse perpetrated against me has been outside the hospital. This includes acts like: Blaming my symptoms on my pre-existing mental conditions (including autism and PTSD) Blaming my symptoms on mental conditions I don't have (like anxiety) Being told, to my face, that anxiety can cause PEM/exercise intolerance Being inappropriately prescribed psychiatric drugs Being prescribed GET Not being ordered tests even when I show that they're medically necessary Not being given the opportunity to select doctors based on whether they accept ME as a physical condition The medical abuse I've experienced has caused me years of enormous emotional suffering, which has significantly lowered my functioning compared to if I just had ME. The abuse caused my ME diagnosis to be delayed by over 3 years, which caused me to treat myself like a healthy person. I attempted to attend college full-time and even exercised regularly. This caused me extreme crashes that made me very emotionally dysregulated, unable to regulate my sleep, and miss college at times. My lack of knowledge I had a physical disability caused me to attempt to run a business instead apply for disability benefits, but my condition rendered me unable to work long enough and consistently enough to make a meaningful income. Thus the missed diagnosis caused me to spend two years of my life nearly broke. The continuing abuse has utterly stripped me of any sense of dignity. I feel like my life and well-being have no value to other people. When I need to spend any time at all trying to get healthcare, I simply can't motivate myself to do anything, I have even more trouble taking care of myself, I barely feel anything but numbness and rage for weeks to months at a time. My life has been ruined twice. First by ME (the disease, not myself), then by medical abuse. And the abuse has emotionally affected me somewhat worse, because it wasn't the impersonal lightning bolt of biology which struck me, but the hands of many people whom I expected to take care of me. That is a very strong statement: Being systematically denied adequate healthcare made me more sad and angry than losing my career, playing hockey, most of my hobbies, the ability to adequately take care of myself, my friends, most of my connection to my family; in short, almost everything that made my life meaningful. Experiencing persistent medical abuse is a fate worse than death. If a genie waved his magic wand and cured me from ME forever, I would still be a broken person for the rest of my life, because I would forever be stuck with the horrifying knowledge that I could go through the same thing again, that millions of people are still going through it, and its existence is barely acknowledged, let alone is anything being done to stop it. While the scope of my experience is broader than you requested, I would like healthcare workers to understand the full extent of the harm that medical abuse has done to me, not just what happened in a hospital setting, and that a medical error doesn't have to result in long-lasting physical harm for it to severely affect someone's quality of life.
Couldn't agree more, the experiences I've had since getting ME have really eroded the foundations of the feeling of safety of being a part of society and a community. As to the experiences you've shared, thank you for taking the time to explain so thoroughly and openly, sadly I can relate to much of it myself, I can feel your wholly justified anger and despair at such injustices.
I have progressive Autism, part of which causes physical pain from sounds. When I explained my symptoms the rheumatologist I saw told me in a patronizing tone "That sounds like anxiety". Visiting hours in my 6 patient ward were very painful. They never gave me a quiet side room, they didn't even acknowledge my suffering. My 11 day stay took a year to recover from. For my full story PM me.
