A Guide to Keeping Your Medical Records
Look, I have like. A LOT of medical issues. Even when I didn’t have anything diagnosed, yeah, part of the problem was neglectful medical staff... and a lot of it was doctors and staff not having information they needed to make a decision. Having a binder of your info can give them that info at a glance.
Anyone can walk into a doctors’ office or ER and just... say stuff. ER docs ESPECIALLY don’t know that YOU are telling the truth. And just as important! *Accurate* truth! Because we all think our recollection of some important stuff is dead-on... but actually, fine details that are important just get lost, or become hazy. But paperwork from “outside witnesses” (other doctors or pharmacists) gets instant respect and verification.
Having your medical records in one binder is really rare for doctors to see from patients but my experience has been that they help SO. MUCH. My experience of doctors really started to change when I walked in with a 2″ binder of just... like... everything from the past ~1-2 years, and some things I’d been battling since I was a teenager, so like, 10 years. With folder dividers, the kind of divider that has a pocket? Somewhat organized, not even pristine. It was even a relief for some because they worked for a company, and the company rendered their computers practically useless to get tests for like, a month. Cool, I had copies of mine on paper! No duplicated tests to pay for!
Suddenly, they went from “yeah whatever ok” to “... oh. You’re serious. You came with bloodwork results? And PHOTOS of what’s happening? And the front page for previous prescriptions from wal-mart or walgreens showing exactly what it is and when it was filled? ........... okay. we’ll.... find out. Maybe not today, but we’ll work on it.” I went from “I don’t know what that is, but it cleared up by now!” to “... wait, you said you’ve never been able to eat without pain, and now you’re covered in a rash? You can’t breathe in detergent aisles? I really hope you do not have something called MCAS.” (I did not. That doctor was actually worried that I would get angry with him over that. ??? Apparently some patients just DO that because they don’t have an answer in one test.)
GREAT COOL, BINDERS ARE GREAT! BUT I WASN’T JUST TAUGHT THIS STUFF FROM FAMILY OK. I had to learn to assemble this info because I did office admin work before and I was raised by a narcissist and even doctors were horrible. I fear doctors the way I fear cops. Because I feel like both could just injure or kill me and get away with it. Docs have injured and killed friends, and I ended up with dire long QT (and some other issues over the years) because of docs not listening to me. Getting my medical records seems to make shit doctors Nervous because suddenly, a patient has agency and won’t just shut up and do whatever. Maybe it will help you, too.
I know some of these links are for “retired people and caregivers.” The same rules apply! It’s just that no one DOES this stuff until they become caregivers to others! But protip: YOU are your own best caretaker right now. A binder helps other trusted people to know what happened before. There are even downloads for free if you want them!
How + Why to Keep These Binders, What to Keep In Them (video) Downloadable Resources + Explanations for Medical Binders
How Journals Help Improve Your Care (read the comments here. Some are actually really good!)














