I was just reading an article in The Guardian, about eating disorders, and it got me thinking. They mentioned things we with chronic illness are familiar with - misdiagnoses, being diagnosed with a psychiatric disorder we don't have, being told we're drug seekers, feeling like you're applying for the job of your illness just to get care, being told you're lying, being told you're not sick, being told your test results are normal so you must not be sick, dismissive "care", rushed "care", rude "care" - and we have very little power, or recourse.
Plus, if we don't know what's even wrong with us yet, what can we do but make more doctors appointments, miss work for them, pay for them - sometimes out of pocket, creating a snowball effect that can lead to being disabled unnecessarily, homelessness, and even suicide.
There are times when it's so hard to go to another appointment - whether due to mental or physical health, money, time off issues, transportation etc. Doctors are treated like clergy, insurance plays games. If you complain, stick up for yourself, or change doctors too often, you can get black balled, a family member put in charge of your care, you can get treated badly because the doctor you're trying to get away from is the head of the department and you have no other options but that medical facility, etc. Etc. Etc.
It looks like healthcare in the UK is very very messed up too, but they do have this one bit of patient advocacy I was impressed with, a "care quality alert, a report of a systematic failure to care for a patient". I've not gone through all of the horrors above, but many. Many. And it's beyond disappointing, when your entire world is crumbling, you can't get the care you need, and there's not a single person taking responsibility for the cascade of failures.
I've talked to my other chronically ill friends - whether mental or physical, about how it would be SO NICE to just go back to your past doctors and tell them what you have! (If it's ever figured out.)
If I hadn't have been doing constant research, and creating community with my chronically ill friends, and on social media talking to people all over the world, would I now know my diagnosis? No. I wouldn't. Because I have a rare disease. And so do many many others.
Even if I did get the chance to go back to all of my doctors to tell them what they missed, they'd have to remember me- and some of them wouldn't, much less the details of my case.
Plus, here's what happened when I went to my last rheumatologist. I was still "under her care" at the time. I told her I'd been diagnosed (Correctly. Though I wasn't snarky, or rude in any way. She had helped me, even though she'd misdiagnosed me.) and her reaction was all ego. She basically fired me on the spot. "Well, I guess there's nothing we can do for you here! Nice having you as a client.", exit stage left. I've since found a very good rheumatologist that actually knows about my condition. I think my doctor just didn't know about my condition, and instead of helping me find someone who did, that was left up to me. I found my doctor through my support system/online community, which not everyone has.
Most, to all of the time, it's not that the doctors don't care, it's that they don't know. Bodies are complex, dynamic systems. There is no way most doctors are going to understand an illness that spans rheumatology, neurology, immunology, surgery, gynecology, physiotherapy, etc. The way that the American health system is set up, from school to care, is in wheelhouses. If they don't know, and they can admit it without throwing the blame back at you, they'll refer you forward. Right now, it's your primary care doctor that gets to try and put that puzzle together. So they have to understand all of these bits and bites, AND know about all possible conditions it could be. And that's unreasonable to expect of anyone. So we're expected to have a "team" of specialists. Which can get expensive, fast.
I realize that I'm a long term user of the system, not a care provider, and I *know* I've got blind spots, and am misunderstanding parts of why care is failing us. But when it comes down to it, doctors are humans. They can only know so much, they have families, lives, only so much time, egos, mental and physical illnesses too. We're all fighting some seen or unseen battle.
It's the system. Insurance is broken, healthcare systems are fractured, and it's often left up to the patient to figure it out themselves or go undiagnosed. Which is impossible for many to do. It's a system that's set up for us all to fail. (Sometimes it works fantastically and smoothly! But that's not often the case for us rare disease, and pain centric, pan-specialty cases. And there are a LOT of people falling through the cracks.)
It would *really* help if there was a better patient advocacy system. If there was a flag for doctors to get more training - and be paid to do so. And a flag for doctors who are mistreating and being unkind in big ways, and in the smaller ways - by gaslighting and dismissing patients complaints.
Unfortunately, this opinion piece is as much as I know what to do to fix this huge out-of-control beast of a disjointed system. But I'll keep doing research. And I'll keep putting my voice out there for those who can't. But I only have so many spoons.
Am I being petty by wanting my past doctors to know they misdiagnosed me? Or would it, perhaps, help them spot my condition in another person coming to them for advice? What do you think?
