Things that Make Me Mad.
1. Going to the ER and having occasion to write this letter:
I was seen in the emergency department tonight for a myriad of complaints that have been progressively compounding over a matter of years. I believe my intelligence and impact were grossly underestimated in this visit, and I am writing to express my disgust at the personal incompetence and complete lack of compassion that I was the direct recipient of tonight. I have never had such a degrading experience as a patient, and I will not accept it as due course.
As a matter of background, I will mention that I am chronic pain patient who is under the management of a skilled general practitioner. My issues are beginning to manifest as auto-immune, after almost a decade of testing and waiting. I came to [Hospital name witheld] in lieu of a competitor at the request of a close friend who also has the particular misfortune of chronic illness. She expressed concern about the symptoms I was having, and confirmed my feeling that, though I had no desire to, I needed to be seen in the hospital. The hope was that the increase in symptoms would mean I would have an opportunity to: a) have findings not otherwise discovered in my extensive testing, b) have tests that I had otherwise been refused as a matter of scientific process in an ongoing unsolved problem, or c) be admitted for consult and further testing due to the urgency of my symptoms and their disabling nature.
To clarify, I am 23 years old and have now quit five jobs out of necessity due to undiagnosed disabling disease. This is a very difficult circumstance for anyone, let alone someone of that age who is trying to build a career and a life. I have a very stoic nature about my illness, and rarely show any sort of reaction to any news about it. I do my best to show my appreciation for the doctors and nurses who care for me, because I understand what it means to want to get into that profession (though I didn't become an RN because of my illness, I did complete much of my coursework). I have compassion for the failings of health professionals, after all, my father died due to an issue of medical negligence and I decided to come to personal peace rather than holding seeds of bitterness and resentment. I know that people make mistakes. I am, however, deeply worried about the behavior I saw tonight. I'd like to refer to an article that is a good descriptor of the main complaint I have:
It seems that, when [name witheld] came to tell me my bloodwork was normal and he was sending me home (at the moment of first meeting me), and I proceeded to cry because of the overwhelming frustration of medical dead end after dead end, that he forgot what obligations he has as a physician and a human being. I told him that I came in to the emergency department because my condition has degraded over the past few weeks and though I had spoken to my doctors, the urgency escalated as my pain, weakness, fatigue, numbness and inexplicable bruising escalated. I felt as though I needed supervision, I didn't feel safe. [Name witheld] proceeded to tell me that I wasn't in danger because my bloodwork was normal, and he could tell some things about rheumatoid illness from the bloodwork and I didn't need more help that night. He suggested I needed to "wait more" and "put together a team," as though these ideas were unfamiliar to someone who has had chronic pain for close to ten years. He also suggested I needed a pain specialist, and much to my chagrin, a psychiatrist. He said he would refer me to another rheumatologist for a second opinion and apparently felt it appropriate to refer me to another in the same practice as the physician who had, as I put it, "blown me off."
Perhaps the most troubling part of the interchange is that when I went home and got a chance to look a the discharge paperwork, it suggested I return to the emergency department should I have a fever over 100.4. I described while in the emergency room that part of what had brought me there was the fevers I had been having for the past four nights that woke me and had me stripping off my clothes in the middle of the night. I suppose that went without notice because I cried.
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