Recently I started to go through all of my clothes to see what still fits, and what might never fit again, and what’s ugly even if it fits me, but I keep interrupting the process out of fear that this is all premature, because I’m just going to gain all of the weight back next year, or the year after that, when I can’t afford to pay out of pocket for the Zepbound anymore. My doctor has already told me that even if my insurance eventually allows GLP-1 medications for weight loss, they probably won’t cover it for me, because I’ve already lost the weight and therefore I can’t prove that I need the medication. He tried vaguely to reassure me that it will be okay, because I won’t need to be on the medication for the rest of my life, but most of the current research says the opposite. And in the aftermath of that frustrating conversation, it occurred to me how little it really matters to my doctor if it turns out he’s wrong. It’s my money and my body and my health, and I’m the one who’s going to be dealing with the consequences.
I wish I had faith that going to a different doctor would lead to better care, or more compassion, but that has not been my experience. If anything, starting with a new doctor means having to argue over things I’ve already spent years proving, as if my long medical history doesn’t exist. I’ve been to so many doctors, and they’ve all been trained to disregard the symptoms reported by patients in favor of the hard data of blood tests and scans, even though time after time the tests turn out to have been wrong, or more often, incomplete, as medical knowledge progresses. This tendency of doctors to ignore or dismiss patient reports has, of course, led many people like me to look for answers elsewhere, especially online, where snake oil salesmen abound. The huge flood of unregulated medical information available online has become overwhelming, especially when the crowd, based vaguely on genuine research, decides that every symptom is clearly part of a single syndrome, except that the single diagnosis that covers everything keeps changing. For a while there, everyone had Epstein Barr virus, then Lyme disease, and then Fibromyalgia. And of course, we are all plagued by too much inflammation and need to avoid gluten and do lymphatic drainage exercises, for some reason. The latest trend is to diagnose everyone with some degree of Autism, and to connect Autism to every other known disease. The blurring of the lines between one disorder and another, and a tendency to ignore differences in intensity or frequency of symptoms, has made many serious diagnoses seem both ubiquitous and meaningless, but these theories are so tempting because we’re desperate to understand what’s going on and none of the experts seem to have answers.
For a long time, I assumed this was only happening to me, because doctors found me particularly hard to believe. I only understood how widespread this phenomenon was when I started to go to a whole new set of doctors with Mom over the last few years. After a lifetime of being treated like a sane person by whatever doctors she’d needed to consult, now that she had a list of confusing symptoms with no easily discovered answers, she was getting the same ghosting from her doctors that I’d been getting all along. When Mom, tentatively, offered an explanation for one of her symptoms, her doctor lectured us about how his wife had gone to their pediatrician and dared to suggest a diagnosis for what was going on with their young child. He seemed to expect my mother and I to agree with him that this was ludicrous behavior on his wife’s part, because patients should never imagine they know what’s happening before the doctor tells them. It didn’t seem to register with him that we were horrified by the way he was dismissing his wife’s concerns, and dismissing us by proxy.
Ideally, doctors would be trained to see the patient as their best partner in figuring out what’s going on in their own body, and doctors would also have easy access to resources to help support patients’ psychological, physical and financial needs, but instead most doctors work in isolation from one another and treat their patients like cars on an assembly line. If anything, the medical world has doubled down on its reliance on hard data, as if we are all just a series of numbers waiting to be deciphered.
I don’t understand why this is how medicine works in the United States today, but then again, I don’t understand a lot of things about how this country works. The fact is, I have a lot of sympathy for doctors who have to treat patients suffering from so many unknown diseases in a world where what we eat and how we live keeps changing so quickly that we can’t keep up with how it all impacts us. I don’t resent doctors for not knowing the answers to complicated questions, I resent them for not being curious, and for leaving us to do the research on our own without their extensive medical education to help us sort the reasonable from the ridiculous.
Given all of that, I’m probably going to keep a lot of clothes that don’t fit me anymore, just in case. And maybe I should start doing those lymphatic drainage exercises too. I mean, you never know.
If you haven’t had a chance yet, please check out my novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
rachelmankowitz 