It’s more than ok to switch doctors if you feel like the care you’re getting isn’t adequate. It’s not unusual for chronically ill patients to see a dozen or more doctors over several years before they find one who can properly diagnose and treat them. Don’t let anybody make you feel like a “doctor shopper” or a difficult patient just because you want good medical care -after all, we wouldn’t have to see so many doctors if more of them did their job well.
Oh man, I’ve heard the “doctor shopping” thing before! Always as a way to dismiss disabled and chronically ill people, especially those still waiting to be diagnosed, implying we keep trying doctors until we find one who gives us the answer we want. But I mean, how is that different from what other people do? If you have a more acute/short term problem and you don’t like the way the doctor treats you or you don’t like the prognosis/treatment options/whatever and want a second opinion, nobody bats an eye. But if we want to find a doctor who actually listens to us and values our self-advocacy, we’re just “shopping” for the doctor who will give us the attention we want.
When a particular illness/syndrome/disorder/disease gets talked about as being “overdiagnosed,” there’s something happening there, and it’s not what the hype around it would have you think.
People aren’t getting diagnosed with things they don’t have because it’s “trendy” any more than increases in diagnoses of a thing when understanding and awareness rises mean that there’s suddenly an “epidemic.”
I’ve seen this happen with the syndromes I’ve been diagnosed with already, in the years after my childhood diagnoses in the dark ages of the 1990s, and I’m seeing it now with the condition my symptoms, family history, and common comorbidities make me suspect. I worry about whether I will get an honest assessment or a doctor who will dismiss my concerns because they feel like some kind of cosmic quota for this type of wonky body has been met.
Here’s how it really works:
Condition is first documented and considered to be very rare. People who have it receive access to necessary supports and resources. ==> Condition begins to gain some traction as people who previously had no answers for their problems are found to meet diagnostic criteria. ==> Awareness spreads and others looking for answers realize they also meet criteria and seek out assessment. ==> “Rare” condition turns out to be something much more common than originally thought, and more people are getting diagnosed and seeking supports. ==> Somebody in charge doesn’t like that. ==> Criteria gets changed so only the most typical or severe cases fit anymore. People with mild or atypical forms get a new, less-supported diagnosis or no diagnosis at all.
And the conditions were never rare at all, they were just underdiagnosed. “Overdiagnosis” is a construct used to reset the status quo of UNDERdiagnosis that keeps people thinking there are way less disabled people than there really are.
I got a diagnosis from my cardiologist a few months ago. Today I saw a PA in that same office who desperately tried convince me I had a different condition altogether. I was told my dizziness was not related to my cardiologist’s diagnosis despite every medical website saying it was. My doctor said it was Inappropriate Sinus Tachycardia. The PA insisted it was Orthostatic Hypotension and it was merely a temporary moral failing. The whole appointment was a freaking mess, but I’m not believing a word out of that PA’s mouth.
My question is this: Is this a normal behavior for PA to just not have all the information or see all the information and still think the doctor is wrong?
(Please reply with answers instead of reblogging as I will be deleting this post after the weekend)
Shout out to the RN who, upon diagnosing me with postural orthostatic hypotension, did not follow through to maybe figuring out I have POTS?
Shout out to the many doctors who have looked at my perpetually weird blood pressure and my inability to thermoregulate and my weight gain and everything and decided “ah, well, we can’t do anything about that”.
Shout out to all the doctor who, after being told I was dizzy all the time, said “ah, it’s a shame we can’t do anything about that”.
Shout out to the doctor who, when I showed up to his office with a cane, diagnosed me with agoraphobia and told me I was too pretty to be depressed.
My mom (the one I chose, not the one I was born to) is a doctor. One of my very best friends is a doctor. I still don’t trust doctors as far as I can throw them. Some of them are great. Most of them are ableist fucks, and most of them fully deserve your distrust.
Shout out to the surgeon who wrote fatphobic garbage in Ryn’s medical record (that I don’t even know the extent of because Emi knew it would make me too upset) and gave them a halfass hernia repair after removing their tumor. (AS A FUCKING TEENAGER)
Shout out to the doctors (PLURAL) who Ryn went to about “hey this seems weird” with their surgery scar who just told them to lose weight about it.
Shout out to the dietician their mom took them to at age six to get them to lose weight (and shout out to mom the nurse too).
Shout out, even, to my own doctor who I have always liked and respected, when I went to see her about possible acid reflux who said “well weight loss is on the list of things we usually suggest” immediately after I had told her about my experiences with Ryn AND my issues with making myself eat regularly (yay executive function and grief). At least she sounded fucking apologetic about it.
Like, I cannot speak highly enough of the people at Children’s Seattle, including the pharmacist who also raged about medical fatphobia with me, and Ryn’s surgeon, who filled me in on stuff about what had happened the first time that neither of us had known about. And like Birdie, I count Emi as one of my dearest friends, and I know she too is carrying the responsibility forward.
But also, the system is stacked against good care for fat people.
to those facing medical or psychiatric gaslighting: you are the expert on yourself. you are the only person on this planet who can decide if something is happening to you. this is your mind, body, and life. no one else has access to experiencing that but you. you can trust yourself. i believe in you and i am so sorry the people who say they’re there to help and treat you are hurting you.
