🗯️ Actual sh*t doctors have said to me
Plus a book recommendation
When I was growing up in Oklahoma, we didn’t really go to the doctor.
We didn’t have much money or consistent insurance, so it wasn’t something I had access to. Looking back, I started showing EDS symptoms at an early age, but I managed to have a relatively normal childhood in terms of my health. When I started living through more disruptive symptoms in my early 20s, I had a naive expectation that all doctors could be trusted, that they all knew how to help, or that they would all be compassionate partners in diagnosis and treatment. In reality, medical malpractice is the third leading cause of death annually in the U.S., and about one third of malpractice cases related to a missed or delayed diagnosis.
In the years that followed, I knew without a doubt that something was wrong, despite a lack of concern from my providers. I realized my expectations were wildly out of touch – I assume from watching too much House. I was dismissed, gaslit, then sent to specialists who did the same thing or just didn’t know what to do with me. I don’t believe this is because they’re all bad doctors or bad people. Rather, our medical system doesn’t encourage thoughtful, thorough time spent with patients. Combine that with the tendency to silo in a specialty, and they end up ditching more complex cases as someone else’s problem.
In The Invisible Kingdom, Meghan O’Rourke lays out her own trying journey to seek diagnosis and treatment for chronic illness, while expertly presenting evidence that this is not all in our heads. It is incredibly validating, deeply moving, and, at times, depressing as hell:
“The bigger problem, though, is that all these hoops made it much more likely that I would just give up or fail to follow through. At times I did. When I later asked Jack Cochran, the former executive director of the Permanente Federation, what happens to patients who don’t have the energy or the means to persevere in connecting their disconnected doctors, he said, ‘They fall through the cracks, and they suffer in their own world, alone.’”
Anyway, here are some of the actual things doctors have said to me. I hope you find some validation from my experience. In an upcoming issue, I’ll share my process for finding a provider.
🛑 “Radiology is probably biased.”
Reason for visit: Diagnosis and treatment of a prolactinoma.
Specialty: Endocrinology, the field focused on the endocrine system, which is responsible for hormones.
Why that was wrong: Just... what? I have been gaslit many times, but I have never had a radiology department gaslit on my behalf. She said based on the language in the report, it was unlikely that my pituitary tumor was there. I have all the markings of a prolactinoma (something that is fairly common and easily treatable), but this doctor found a way to say I didn’t.
The worst part: I got a bit emotional in that appointment or “tearful” as she put in my chart. I wasn’t rude, but I did ask clarifying questions, because I was confused by her reasoning (which turned out was misinformed). She got noticeably flustered and asked what tests I “wanted.” I told her I wasn’t sure and that she was the expert. After settling on another test for Cushing’s, she immediately had me follow her out of the exam room and through an office area to make me sit in the hallway near the exit. She spoke to a nurse around the corner, then walked past me without a word. It was the most thrown away I’d ever felt as a patient. I mean, she got rid of me!
What they could have done better: I wish she had looked at the images herself, asked what I thought, and given me more agency as a patient. It felt as though she had already decided what was best before I arrived.
❤️🩹 “Your blood work is fine...Lose weight.”
Reason for visit: Seeking out testing for autoimmune condition before my EDS diagnosis.
Specialty: Rheumatology, the expertise focused on inflammation, immune system disfunction, and musculoskeletal issues.
Why that was wrong: My bloodwork wasn’t truly fine, and he had only done one limited blood panel to search for a few autoimmune conditions. He was a highly rated specialist, and I was still in fairly good shape, considering my symptoms.
The worst part: I had only started to gain weight because of my health issues. But I left feeling like my illness was my fault. He also asked specifics about my PTSD. At the time, I thought that was a good thing, because maybe it meant he was knowledgeable about the impacts of trauma on health. In hindsight, I believe he saw my symptoms as psychological.
What they could have done better: Provided some caveats to his “treatment” plan or asked about recent changes. He could have asked about my family history or invited me back if I continued feeling bad.
❌ “There’s not much that can be done about it.”
Reason for visit: Seeking a new primary care doctor after mine had to quit practicing due to her own health problems.
Specialty: Internal medicine, a specialty geared toward diagnosis and treatment of adults with complex illness.
Why that was wrong: It is just plain false. There is no cure, but there are avenues to find relief in an EDS body, especially since the systemic nature of the condition means multiple comorbidities with direct treatments. I felt immediately deflated and responded to the rest of her questions politely, knowing this person would not be my new doctor.
The worst part: She brought up my mental health multiple times, four I think, but I lost count. I told her I was doing everything appropriately to care for my mental health – weekly therapy, consistent medication, a healthy support system, and so on. My mental health is my number one focus, because it can be the most disabling at times. Without emotional well-being, I am unable to care for the rest of my body. I was cordial, told her I would keep my current primary care doctor and left. But I was furious.
What they could have done better: I wish she had just told me outright that she didn’t know much about EDS and that she wouldn’t be the right fit. Or perhaps she could have suggested another doctor. I would have been disappointed but appreciative of the honesty.
💔 “Well, what do you want me to do?”
Reason for visit: Seeking diagnosis and treatment for my pain.
Specialty: Family medicine, where physicians focus on basic, long-term comprehensive care for an individual or family.
Why that was wrong: It hurt, and I immediately teared up. “I don’t know!” I said, flustered. I just wanted someone to give a damn. I needed a partner in my search for answers. I gave her the multi-page document I had printed out with a detailed timeline of my symptoms, tests, and dead ends. To her credit, she immediately took it and seemed engaged in helping me.
What they could have done better: Better phrasing, more compassion. That’s about it. Unfortunately, the pandemic got going soon after that, and I avoided medical offices as much as possible for while.
✨ Bonus: The best thing a doctor ever said to me? “I believe you.”
I have had four great doctors of varying specialties since my diagnosis, and all of them made me feel heard and truly cared for. I never expected any of them to have all the answers. Rather, I wanted them to treat me like a partner, to empathize, and to ask questions until we figured things out – together.
💭 What are your best/worst experiences in healthcare?
Let me know on Bluesky or reply to this post.
♿️ Equity, accessibility and support
Please don’t hesitate to reach out if there is something I can do to make this newsletter more equitable or accessible. I have some experience in accessibility for digital communications but always have more to learn. And if you just need someone to listen, I can do that too, as I’m committed to the “community” expectation listed above.
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