"codewords to use on doctors and such"
January 12, 2024 4:54 AM Subscribe
Te shares scripts one can use in a medical setting to make it more likely one will get adequate pain medication and mobility devices; other Tumblr writers share additional tips on bringing a patient advocate ("medibuddy"), bringing written notes and defending using notes, etc. "Remember not to use too *much* *correct* medical jargon — they get suspicious about that."
Followup tip: if you are marginalized because of your disability, gender, race, etc., try to bring with you a patient advocate against whose whose appearance, demeanor, etc. there's less systemic discrimination, if that's possible:
posted by brainwane at 5:04 AM on January 12 [13 favorites]
This would be a good thread to share other scripts and tips about getting what one needs in a system designed to prevent you from getting it! We can take the railing and whinging against the unfairness of those systems as read.
I'll start. If you want to be diagnosed for adult ADHD, talk about how your sibling/parents had it. Even if you have to fabricate this. It's a lot easier to get a diagnosis if someone in your family also has it, because it's at least partly hereditary. Also, drop every bit of your masking and coping strategies except the ones where you have to write your notes for the doctor appointment down on your hand in pen otherwise you'll forget them.
posted by seanmpuckett at 5:17 AM on January 12 [14 favorites]
I'll start. If you want to be diagnosed for adult ADHD, talk about how your sibling/parents had it. Even if you have to fabricate this. It's a lot easier to get a diagnosis if someone in your family also has it, because it's at least partly hereditary. Also, drop every bit of your masking and coping strategies except the ones where you have to write your notes for the doctor appointment down on your hand in pen otherwise you'll forget them.
posted by seanmpuckett at 5:17 AM on January 12 [14 favorites]
It's a strange, icky-feeling game of quickly getting a read on a doctor's personality, tailoring your presentation of facts to suit, and making sure to do some careful ego-stroking.
I feel like a fraud even KNOWING that there IS a game, because admitting to having had many doctors for a particular issue feels dangerously close to doctor shopping which is a thing fakers do. This is where I pointedly mention having moved to another state and back, and how a few people had stopped taking my insurance.
The tips about explaining symptoms/limitations with the emphasis on how it interferes with Useful Functioning is good, it's an approach that's served me well.
(I'm coming at this from the place of knowing what is wrong with me (ADHD) but it's a whole bigger messed up fucking issue if you're in the process of figuring out what's going on)
posted by Baethan at 5:24 AM on January 12 [19 favorites]
I feel like a fraud even KNOWING that there IS a game, because admitting to having had many doctors for a particular issue feels dangerously close to doctor shopping which is a thing fakers do. This is where I pointedly mention having moved to another state and back, and how a few people had stopped taking my insurance.
The tips about explaining symptoms/limitations with the emphasis on how it interferes with Useful Functioning is good, it's an approach that's served me well.
(I'm coming at this from the place of knowing what is wrong with me (ADHD) but it's a whole bigger messed up fucking issue if you're in the process of figuring out what's going on)
posted by Baethan at 5:24 AM on January 12 [19 favorites]
"Sooner or later, you will need this. Either you will personally, or your parent/child/signficant other/best friend will. This is part of modern life, one of the major signs of adulthood."
A-fucking-men
posted by hydropsyche at 5:29 AM on January 12 [12 favorites]
A-fucking-men
posted by hydropsyche at 5:29 AM on January 12 [12 favorites]
Oh and having worked between care providers and insurance, "noncompliant" is one of the scariest, worst things to have said about you. I don't know that the noncompliance label is a gigantic red sticker they cover your entire chart with, but that's the strong impression I got
posted by Baethan at 5:48 AM on January 12 [11 favorites]
posted by Baethan at 5:48 AM on January 12 [11 favorites]
Baethan I absolutely hate the term "noncompliant" and I bludgeon my trainees all the time not to use that. For some docs it absolutely brands a patient and absolves them of responsibility for treatment. It's not so much a red sticker but the word sticks out in any history & physical and is often emblazoned in the assessment and plan portion of a note.
"Adherence" and "Non-adherence" are terms that come with a mindset that is a bit more humane—they stress the therapeutic relationship between patient and doctor and allow for the fact that lack of adherence to agreed-upon treatment can happen for a variety of reasons and isn't just the result of laziness, deceit, or some other character flaw. The mindset here is that people can stop treatment because it doesn't work, because it has intolerable side effects, because it's unaffordable or inaccessible, or even simply because the patient has changed their mind about the appropriate treatment. (Patients, it should be obvious to say, have that right.)
posted by adoarns at 6:12 AM on January 12 [16 favorites]
"Adherence" and "Non-adherence" are terms that come with a mindset that is a bit more humane—they stress the therapeutic relationship between patient and doctor and allow for the fact that lack of adherence to agreed-upon treatment can happen for a variety of reasons and isn't just the result of laziness, deceit, or some other character flaw. The mindset here is that people can stop treatment because it doesn't work, because it has intolerable side effects, because it's unaffordable or inaccessible, or even simply because the patient has changed their mind about the appropriate treatment. (Patients, it should be obvious to say, have that right.)
posted by adoarns at 6:12 AM on January 12 [16 favorites]
Whenever I hear the term non-compliant I am reminded of Bitch Planet.
posted by seanmpuckett at 6:34 AM on January 12 [7 favorites]
posted by seanmpuckett at 6:34 AM on January 12 [7 favorites]
There's a fine line between doing things that get you better attention and medical care, and doing things that backfire.
Taking notes, bringing an advocate, key phrases like "interferes with my daily life" to emphasize the pervasiveness or severity of symptoms is one thing.
But coming in with a singular desired diagnosis or treatment is, in my single humble opinion, not a good thing. Especially if it involves fabricating symptoms or history.
posted by Dashy at 6:36 AM on January 12 [16 favorites]
Taking notes, bringing an advocate, key phrases like "interferes with my daily life" to emphasize the pervasiveness or severity of symptoms is one thing.
But coming in with a singular desired diagnosis or treatment is, in my single humble opinion, not a good thing. Especially if it involves fabricating symptoms or history.
posted by Dashy at 6:36 AM on January 12 [16 favorites]
Followup tip: if you are marginalized because of your disability, gender, race, etc., try to bring with you a patient advocate against whose whose appearance, demeanor, etc. there's less systemic discrimination, if that's possible:
I've told the story here before of how my partner was going through a set of miserable symptoms and we were cycling through doctors trying to find one that would take her seriously and get a diagnosis. What ended up working was having me come to every appointment in my role as generic tall white middle-class man and literally repeat her words.
So a typical appointment would go like this:
Her: "I'm feeling a lot of pain, including Symptom A and Symptom B."
Dr: "Well, there's a lot reasons you could be feeling that way and that is pretty normal."
Me: "She is feeling a lot of pain, and that includes Symptom A and Symptom B."
Dr: "Oh, that sounds serious, I'm going to order a bunch of tests and set up a follow up appointment."
It was ridiculous and infuriating. I have no special medical knowledge and I wasn't bringing something new to the table -- I was literally just validating her words by repeating them. And yet, having them spoken by a man was key to get them actual listened to.
Once we got the actual diagnosis it's been relatively smooth sailing and I no longer need to tag along to appointments. But I wonder sometimes if she would ever have gotten the diagnosis in the first place without having a white dude to bring to the appointments to force the issue. (It also took a lot of privilege to make that happen. I had the kind of white-collar job where leaving for a few hours once or twice a week for a period of months to attend appointments wasn't a big deal; most jobs don't provide that kind of flexibility.)
posted by Dip Flash at 6:38 AM on January 12 [68 favorites]
I've told the story here before of how my partner was going through a set of miserable symptoms and we were cycling through doctors trying to find one that would take her seriously and get a diagnosis. What ended up working was having me come to every appointment in my role as generic tall white middle-class man and literally repeat her words.
So a typical appointment would go like this:
Her: "I'm feeling a lot of pain, including Symptom A and Symptom B."
Dr: "Well, there's a lot reasons you could be feeling that way and that is pretty normal."
Me: "She is feeling a lot of pain, and that includes Symptom A and Symptom B."
Dr: "Oh, that sounds serious, I'm going to order a bunch of tests and set up a follow up appointment."
It was ridiculous and infuriating. I have no special medical knowledge and I wasn't bringing something new to the table -- I was literally just validating her words by repeating them. And yet, having them spoken by a man was key to get them actual listened to.
Once we got the actual diagnosis it's been relatively smooth sailing and I no longer need to tag along to appointments. But I wonder sometimes if she would ever have gotten the diagnosis in the first place without having a white dude to bring to the appointments to force the issue. (It also took a lot of privilege to make that happen. I had the kind of white-collar job where leaving for a few hours once or twice a week for a period of months to attend appointments wasn't a big deal; most jobs don't provide that kind of flexibility.)
posted by Dip Flash at 6:38 AM on January 12 [68 favorites]
I have an appointment coming up today, and I've been advised to make a list of the last few year's medications with the steroid medications starred so that the doctor will have it in context. Although the steroid thing is particular to a problem I may have, this seems like good advice for anyone who is trying to get to the bottom of a tricky problem.
“I am a ravening junkie werekaiju, and I will come to your house and EAT YOUR BABIES IF YOU DON’T GIVE ME HEROIN.”
Here's the thing, though: in a sense, a "ravening junkie" could threaten the future of their kids -- at least from the narrow perspective of a young practitioner with a lot of loans. There are criminal and professional penalties now for being loose with scripts. I don't like it, and I don't like what the incentives do to anyone involved, but there it is.
posted by Countess Elena at 6:40 AM on January 12 [1 favorite]
“I am a ravening junkie werekaiju, and I will come to your house and EAT YOUR BABIES IF YOU DON’T GIVE ME HEROIN.”
Here's the thing, though: in a sense, a "ravening junkie" could threaten the future of their kids -- at least from the narrow perspective of a young practitioner with a lot of loans. There are criminal and professional penalties now for being loose with scripts. I don't like it, and I don't like what the incentives do to anyone involved, but there it is.
posted by Countess Elena at 6:40 AM on January 12 [1 favorite]
While taking care of my declining father, I learned a lot of aspects of this and became what I hope was an effective medical proxy. One thing I learned is if you're in the ER with an elderly patient who is diabetic, no matter what time it is, ask for something to eat right away.
I'm not exactly sure how the triage decisions all work, but most of the time my father would be left for hours without food (and sometimes insulin), because he wasn't a high-level emergency. Which I never understood because not giving a diabetic food for hours (and sometimes insulin!) will create an emergency sooner or later. If I wasn't able to be with my father immediately when he was admitted, I would call the ER first and ask them to feed him. Because he's diabetic.
Sometimes I was looked at like I had three heads, was annoying, or got eyerolls, but my Dad sure as shit didn't end up in a diabetic coma.
posted by Captaintripps at 6:43 AM on January 12 [23 favorites]
I'm not exactly sure how the triage decisions all work, but most of the time my father would be left for hours without food (and sometimes insulin), because he wasn't a high-level emergency. Which I never understood because not giving a diabetic food for hours (and sometimes insulin!) will create an emergency sooner or later. If I wasn't able to be with my father immediately when he was admitted, I would call the ER first and ask them to feed him. Because he's diabetic.
Sometimes I was looked at like I had three heads, was annoying, or got eyerolls, but my Dad sure as shit didn't end up in a diabetic coma.
posted by Captaintripps at 6:43 AM on January 12 [23 favorites]
Talking to doctors about how your pain/fatigue/balance issues get in the way of you doing paid work or housework gets taken much more seriously than talking about how it gets in the way of doing enjoyable activities.
posted by chariot pulled by cassowaries at 6:48 AM on January 12 [34 favorites]
posted by chariot pulled by cassowaries at 6:48 AM on January 12 [34 favorites]
Oh if we're sharing helpful resources in getting treated like a real human being by doctors (and let's extend that need to government agencies, state assistance programs, landlords, and Medicaid/Medicare), then I think How to Get On might be one of my favorites.
It's a blog by a woman with ME and CFS who managed to get on Social Security Disability, and here, she crowd-sources things like:
- How to get a home health aide if you're living in HUD housing or on Section 8
- Templates to show your doctor when you need them to write a letter for your SSD/SSI application (variety of ailments on this page, including Lyme, CFS, POTS, fibromyalgia, and lupus)
- sample RFC (residual functional capacity) forms to show your doctor if you're applying for SSD/SSI - you'll need a different completed and signed form for physical ailments vs. mental impairments
- a variety of disability accommodation letters and helpful suggestions for people who cannot talk on the phone, have a mental illness, are survivors of domestic abuse, or have other invisible reasons why they need extra help and aren't sure how to ask for it in a way that ensures their needs are both heard and addressed by care allocators
NB: Some of the links on this blog will be 404s/outdated because she doesn't maintain it as well/often as we might like. So, apologies if anyone runs into a dead link there - but there's still a TON of useful info, especially for people with invisible disabilities/chronic pain.
Also, if you or anyone you know is facing a cancer diagnosis, I strongly recommend having a friend come along and write down every word that you don't recognize or understand and have that friend confirm the spelling, pronunciation, etc. with the doctor.
People hearing about their cancer diagnosis tend to go into shock and a lot of what the doctors/nurses say kind of float in one ear and out the other during the conversation. I've been on the receiving end of this discussion, and been the helper (for a friend with triple-negative breast cancer last year). It REALLY helps having a second set of eyes/ears/hands to take notes on things like chemo protocols and adjuvant treatments and so forth, because the terminology is often so unfamiliar and hard to research properly afterwards.
posted by Unicorn on the cob at 6:50 AM on January 12 [29 favorites]
It's a blog by a woman with ME and CFS who managed to get on Social Security Disability, and here, she crowd-sources things like:
- How to get a home health aide if you're living in HUD housing or on Section 8
- Templates to show your doctor when you need them to write a letter for your SSD/SSI application (variety of ailments on this page, including Lyme, CFS, POTS, fibromyalgia, and lupus)
- sample RFC (residual functional capacity) forms to show your doctor if you're applying for SSD/SSI - you'll need a different completed and signed form for physical ailments vs. mental impairments
- a variety of disability accommodation letters and helpful suggestions for people who cannot talk on the phone, have a mental illness, are survivors of domestic abuse, or have other invisible reasons why they need extra help and aren't sure how to ask for it in a way that ensures their needs are both heard and addressed by care allocators
NB: Some of the links on this blog will be 404s/outdated because she doesn't maintain it as well/often as we might like. So, apologies if anyone runs into a dead link there - but there's still a TON of useful info, especially for people with invisible disabilities/chronic pain.
Also, if you or anyone you know is facing a cancer diagnosis, I strongly recommend having a friend come along and write down every word that you don't recognize or understand and have that friend confirm the spelling, pronunciation, etc. with the doctor.
People hearing about their cancer diagnosis tend to go into shock and a lot of what the doctors/nurses say kind of float in one ear and out the other during the conversation. I've been on the receiving end of this discussion, and been the helper (for a friend with triple-negative breast cancer last year). It REALLY helps having a second set of eyes/ears/hands to take notes on things like chemo protocols and adjuvant treatments and so forth, because the terminology is often so unfamiliar and hard to research properly afterwards.
posted by Unicorn on the cob at 6:50 AM on January 12 [29 favorites]
I've heard from many other chronically ill people that
"My health issue inconveniences me, a woman" gets dismissed
but "My health issue inconveniences my male partner/husband" gets taken seriously. :(
posted by chariot pulled by cassowaries at 6:51 AM on January 12 [28 favorites]
"My health issue inconveniences me, a woman" gets dismissed
but "My health issue inconveniences my male partner/husband" gets taken seriously. :(
posted by chariot pulled by cassowaries at 6:51 AM on January 12 [28 favorites]
But coming in with a singular desired diagnosis or treatment is, in my single humble opinion, not a good thing.
Yeah, asking for ADHD diagnosis went like that. How dare I suggest I have the issue, I suppose. And for those of you who insist that I'm autistic, I asked about getting evaluated for that several times and no doctors had any interest in evaluating me for that one. Most of them would not discuss the topic at all and the few that would said they don't think I am. (Which is fine, I do not think that is my issue and only asked because people will not leave me be on the topic.) I'll be fair, they all listened to me as to why I think I have ADHD and everyone BUT the evaluators thought I have it, but they wouldn't listen to me on the "yes, you can have it while also being anxious and depressed, the only reason why I'm doing this is because all of this shit combined has made me too stupid to work."
And yet, having them spoken by a man was key to get them actual listened to.
That's exactly what I thought of reading the "medibuddy" thing. If only I could get a white man to come with me on video chat!
I have had a half-finished ten minute play in my brain for years on this topic: an infomercial about a hologram you can buy to re-say what you want to say but making it look like you're a white male who will actually be listened to. I just can't figure out how to end the damn thing.
posted by jenfullmoon at 6:57 AM on January 12 [17 favorites]
Yeah, asking for ADHD diagnosis went like that. How dare I suggest I have the issue, I suppose. And for those of you who insist that I'm autistic, I asked about getting evaluated for that several times and no doctors had any interest in evaluating me for that one. Most of them would not discuss the topic at all and the few that would said they don't think I am. (Which is fine, I do not think that is my issue and only asked because people will not leave me be on the topic.) I'll be fair, they all listened to me as to why I think I have ADHD and everyone BUT the evaluators thought I have it, but they wouldn't listen to me on the "yes, you can have it while also being anxious and depressed, the only reason why I'm doing this is because all of this shit combined has made me too stupid to work."
And yet, having them spoken by a man was key to get them actual listened to.
That's exactly what I thought of reading the "medibuddy" thing. If only I could get a white man to come with me on video chat!
I have had a half-finished ten minute play in my brain for years on this topic: an infomercial about a hologram you can buy to re-say what you want to say but making it look like you're a white male who will actually be listened to. I just can't figure out how to end the damn thing.
posted by jenfullmoon at 6:57 AM on January 12 [17 favorites]
> Talking to doctors about how your pain/fatigue/balance issues get in the way of you doing paid work or housework gets taken much more seriously than talking about how it gets in the way of doing enjoyable activities.
I injured my finger last year and was pleasantly surprised how seriously the doctors took it, since it's just a finger. But I did stress that I am a NATIONALLY COMPETITIVE ATHLETE, even though in archery "nationally competitive" means nothing. I wonder if the doctors would have paid as much attention if I'd come in as my alter ego, a middle-aged woman.
posted by The corpse in the library at 7:11 AM on January 12 [27 favorites]
I injured my finger last year and was pleasantly surprised how seriously the doctors took it, since it's just a finger. But I did stress that I am a NATIONALLY COMPETITIVE ATHLETE, even though in archery "nationally competitive" means nothing. I wonder if the doctors would have paid as much attention if I'd come in as my alter ego, a middle-aged woman.
posted by The corpse in the library at 7:11 AM on January 12 [27 favorites]
I once saw advice saying to describe how your problem affects your ability to participate in capitalism either as a worker or consumer.
Can confirm that when I had a joint issue and described being in pain I got a preliminary “we don’t give referrals at these appointments” appointment four months in the future with nothing else available, and when I said “Are you sure there isn’t anything sooner? The pain is waking me up more than when I had a newborn, and it is affecting my job” I got an appointment for 3 days later and PT the day after that.
posted by tchemgrrl at 7:12 AM on January 12 [19 favorites]
Can confirm that when I had a joint issue and described being in pain I got a preliminary “we don’t give referrals at these appointments” appointment four months in the future with nothing else available, and when I said “Are you sure there isn’t anything sooner? The pain is waking me up more than when I had a newborn, and it is affecting my job” I got an appointment for 3 days later and PT the day after that.
posted by tchemgrrl at 7:12 AM on January 12 [19 favorites]
Related, this tweet has stuck with me:
@rhymeswithveryposted by fings at 7:16 AM on January 12 [37 favorites]
When a doctor dismisses my symptoms, I say I want it noted in my chart -- while I wait -- that *they've chosen* not to run any tests. They then run tests. I recommend this approach to anyone facing discrimination instead of diagnostics. (I have 2 autoimmune disorders.)
2:13 AM · Jul 26, 2018
Jenfullmoon, yes -- I knew I had ADHD for years and developed a series of increasingly ineffective coping mechanisms over the years as doctor after doctor refused to test me for it because "you're too smart and high-functioning to need meds."
Until my GP started having to prescribe me sleep meds (trazodone) and acid reflux meds (protonix) because of the massive amounts of coffee I was drinking (to the point that I was vomiting at work every week, sometimes more than once per day) to get by at my job. I'd actually had to go to the ER once already with severe reflux so bad that I was unable to consume anything but water without extreme pain for 3+ days.
One day I spontaneously started crying as I was taking notes in his office, hands shaking, because my pen ran out of ink.
"You know what," he said. "I think we should test you for ADHD. All this coffee is destroying your sleep and your stomach. You're clearly a nervous wreck." Until I had PHYSICAL symptoms that the doc could see both on actual tests and in real life affecting me IN HIS OFFICE, he wasn't bothered by my suffering. At that point, when they were having to schedule emergency endoscopies and treat insomnia that had whittled down my sleep schedule to 3-4 hours per night, it was finally worth addressing from a medical standpoint.
I was literally physically disintegrating from the stress of managing my ADHD the only way I knew how: self-medicating with caffeine and making up to 20 different lists per day in different colored notebooks for work, home, school, social life, etc. to manage my daily priorities. I was 29 and had just finished graduate school.
I too was anxious and depressed, but apparently having a large vocabulary made people think I could handle that along with my ADHD because I could describe it in 3-syllable words. infuriating.
posted by Unicorn on the cob at 7:23 AM on January 12 [51 favorites]
Until my GP started having to prescribe me sleep meds (trazodone) and acid reflux meds (protonix) because of the massive amounts of coffee I was drinking (to the point that I was vomiting at work every week, sometimes more than once per day) to get by at my job. I'd actually had to go to the ER once already with severe reflux so bad that I was unable to consume anything but water without extreme pain for 3+ days.
One day I spontaneously started crying as I was taking notes in his office, hands shaking, because my pen ran out of ink.
"You know what," he said. "I think we should test you for ADHD. All this coffee is destroying your sleep and your stomach. You're clearly a nervous wreck." Until I had PHYSICAL symptoms that the doc could see both on actual tests and in real life affecting me IN HIS OFFICE, he wasn't bothered by my suffering. At that point, when they were having to schedule emergency endoscopies and treat insomnia that had whittled down my sleep schedule to 3-4 hours per night, it was finally worth addressing from a medical standpoint.
I was literally physically disintegrating from the stress of managing my ADHD the only way I knew how: self-medicating with caffeine and making up to 20 different lists per day in different colored notebooks for work, home, school, social life, etc. to manage my daily priorities. I was 29 and had just finished graduate school.
I too was anxious and depressed, but apparently having a large vocabulary made people think I could handle that along with my ADHD because I could describe it in 3-syllable words. infuriating.
posted by Unicorn on the cob at 7:23 AM on January 12 [51 favorites]
When a medical professional refuses to use technical language with me when I ask for it, or refuses to engage with me when I use it, I find a new provider if I can. So the bit about not using proper terminology is mildly enraging, even though I'm sure there is some truth to it. Usually it's not a big problem for me, but I'm not a member of any marginalized group, and that's also probably a big part of it.
When consulting family on my mom's health near her death, her doctor specifically said he was talking to me and assuming I was the one who mattered bc I was the one making good eye contact and nodding along. So I've taken that to heart for getting doctors to pay attention to my needs, ymmv. It's tragic and inexcusable that "ask a white man to come in with you, especially if your doctor is one," is a probably one of the best suggestions for improving outcomes :-/
posted by SaltySalticid at 7:23 AM on January 12 [5 favorites]
When consulting family on my mom's health near her death, her doctor specifically said he was talking to me and assuming I was the one who mattered bc I was the one making good eye contact and nodding along. So I've taken that to heart for getting doctors to pay attention to my needs, ymmv. It's tragic and inexcusable that "ask a white man to come in with you, especially if your doctor is one," is a probably one of the best suggestions for improving outcomes :-/
posted by SaltySalticid at 7:23 AM on January 12 [5 favorites]
Someone I know has a chronic autoimmune inflammatory condition that causes severe pain and severe fatigue. They were denied the medication that would help manage their condition - until they started wringing their hands to their doctor about how, left untreated, the condition could *affect their fertility* (note: they have zero intention of ever having children)
The doctor instantly wrote the prescription. (This was in Canada).
So, if you have a uterus, sometimes "I want to protect my fertility" works better to get you the medication that you need than "I am in constant pain and exhaustion" does.
posted by chariot pulled by cassowaries at 7:28 AM on January 12 [18 favorites]
The doctor instantly wrote the prescription. (This was in Canada).
So, if you have a uterus, sometimes "I want to protect my fertility" works better to get you the medication that you need than "I am in constant pain and exhaustion" does.
posted by chariot pulled by cassowaries at 7:28 AM on January 12 [18 favorites]
Dash: "...key phrases like "interferes with my daily life" to emphasize the pervasiveness or severity of symptoms is one thing."
I have a good relationship with my doctor, and one time we had a very open conversation about a condition of mine. He said that doctors basically consider (I think) four things when recommending treatment, like whether it is limiting my activities and whether I feel that it interferes with my daily life.
I dearly wish I could remember them all, because they were useful for me to think about my own health -- but yes, they were also the "secret code" to getting a health care provider to take me seriously.
posted by wenestvedt at 7:35 AM on January 12 [7 favorites]
I have a good relationship with my doctor, and one time we had a very open conversation about a condition of mine. He said that doctors basically consider (I think) four things when recommending treatment, like whether it is limiting my activities and whether I feel that it interferes with my daily life.
I dearly wish I could remember them all, because they were useful for me to think about my own health -- but yes, they were also the "secret code" to getting a health care provider to take me seriously.
posted by wenestvedt at 7:35 AM on January 12 [7 favorites]
And yet, having them spoken by a man was key to get them actual listened to.
I have a stack of small notebooks and I bring them to family medical appointments. They are useful to me and my family members because I take notes during appointments and I also record questions beforehand. During appointments I sit off to the side, but I can confirm details and dates and facts while the doctor talks to the patient. If the doctor isn't giving my person enough credence, I can repeat their points, "active listening"-style, until the doctor listens. And sometimes there is just too much information or else it's overwhelming, and the notes are super important afterwards.
(It doesn't hurt that I am a tall, middle-age white guy; sometimes I even dress up a bit before appointments. Using the patriarchy against the health care industry feels OK to me.)
posted by wenestvedt at 7:43 AM on January 12 [13 favorites]
I have a stack of small notebooks and I bring them to family medical appointments. They are useful to me and my family members because I take notes during appointments and I also record questions beforehand. During appointments I sit off to the side, but I can confirm details and dates and facts while the doctor talks to the patient. If the doctor isn't giving my person enough credence, I can repeat their points, "active listening"-style, until the doctor listens. And sometimes there is just too much information or else it's overwhelming, and the notes are super important afterwards.
(It doesn't hurt that I am a tall, middle-age white guy; sometimes I even dress up a bit before appointments. Using the patriarchy against the health care industry feels OK to me.)
posted by wenestvedt at 7:43 AM on January 12 [13 favorites]
Ragen Chastain writes about Health at Every Size and has a substack titled Weight and Health Care. She has tons of fact sheets for talking to doctors about specific ailments that are at risk of being dismissed as a consequence of being in a larger body. My favorite is this tip sheet titled What to Say at the Doctors Office. It has general language to use to counter fatphobia from your physician, as well as links to research studies demonstrating the ineffectiveness of weight loss as a health intervention.
posted by bluloo at 8:07 AM on January 12 [24 favorites]
posted by bluloo at 8:07 AM on January 12 [24 favorites]
Some things I've learned:
1. You usually don't need to be weighed at the doctor's office and if you do, they don't need to tell you the number. Just say "No thank you."
2. If you are asked to keep a food diary, or restrict food in a way that doesn't seem helpful to you, even if you haven't been diagnosed with an eating disorder, you can say, "I have found that it's very bad for my mental health to track/restrict my food intake."
3. If you have been trained by society to be polite and make other people comfortable, it may interfere with you getting good care. I was seeing doctors/nurses I really liked for weekly treatment that was extremely painful for me (even though it wasn't painful for most people.) I told them it hurt but also smiled and joked with them. One day, one of them said something like, "You're handling it really well," and I realized that my good social skills were a detriment. I had to take a moment and say, "No, I'm not. I am miserable. It takes me half the week to recover from these appointments. Could we maybe talk about pain management?" They started taking me seriously.
4. If you are having surgery/a procedure for which you are anxious and are getting an iv, you can ask them to give you sedatives as soon as they put in the iv.
posted by tangosnail at 8:33 AM on January 12 [13 favorites]
1. You usually don't need to be weighed at the doctor's office and if you do, they don't need to tell you the number. Just say "No thank you."
2. If you are asked to keep a food diary, or restrict food in a way that doesn't seem helpful to you, even if you haven't been diagnosed with an eating disorder, you can say, "I have found that it's very bad for my mental health to track/restrict my food intake."
3. If you have been trained by society to be polite and make other people comfortable, it may interfere with you getting good care. I was seeing doctors/nurses I really liked for weekly treatment that was extremely painful for me (even though it wasn't painful for most people.) I told them it hurt but also smiled and joked with them. One day, one of them said something like, "You're handling it really well," and I realized that my good social skills were a detriment. I had to take a moment and say, "No, I'm not. I am miserable. It takes me half the week to recover from these appointments. Could we maybe talk about pain management?" They started taking me seriously.
4. If you are having surgery/a procedure for which you are anxious and are getting an iv, you can ask them to give you sedatives as soon as they put in the iv.
posted by tangosnail at 8:33 AM on January 12 [13 favorites]
This kind of advice is super useful for dealing with social workers in general. Say, being evaluated for in-home care services, or qualifying for any sort of benefits. A buddy who has a middle class demeanor is good to have around even if they don't do or say much directly; them being there gives a sort of magical accountability/ social boost.
posted by geeklizzard at 11:16 AM on January 12 [2 favorites]
posted by geeklizzard at 11:16 AM on January 12 [2 favorites]
geeklizard: A buddy who has a middle class demeanor is good to have around even if they don't do or say much directly; them being there gives a sort of magical accountability/ social boost.
"The Supportive White Man Of Persuasion gives +4 to your Charisma score, and +6 on all saving throws against Bureaucracy. The Supportive White Man may count against encumbrance if the player is a woman, at the DM's discretion."
posted by wenestvedt at 12:20 PM on January 12 [23 favorites]
"The Supportive White Man Of Persuasion gives +4 to your Charisma score, and +6 on all saving throws against Bureaucracy. The Supportive White Man may count against encumbrance if the player is a woman, at the DM's discretion."
posted by wenestvedt at 12:20 PM on January 12 [23 favorites]
When I went to ask for my hang-tag (disability parking placard, for those outside the US) I took Mr Epigrams. It was not the only reason--I was about to have to have a biopsy--but it was on my mind. He'd had one for a foot injury and it made my life so much easier we decided I needed one. And they gave it to me! Not that I think my current rheumatologist wouldn't have, but the one before would not have.
Speaking of bad doctors and why you should fire them: in 2021 my previous rheumatologist failed to note that one of my inflammation markers had increased, going from the "somewhat above normal for a person without my illness" X that is my baseline to about 2.5X compared to my 2019 numbers. My 2020 numbers had not been entered into the chart. When I insisted that there was something wrong, Dr. Bad Ex balked, redid the labs, and when I had the same numbers show up, told me it was because I was fat. (My weight had not significantly changed.) I asked my GP for a referral and she sent me to the local medical school, where I got significantly better treatment from the head of department, who just gave me my hang tag.
He also referred me for symptoms I thought needed review to the doctor at his health system who found my cancer. And while I'm not 100% convinced this is the case, it sure is interesting that my autoimmune disease got hyperactive and almost exactly two years later I get a cancer diagnosis.
The lesson I learned there and will not forget is: Advocate for yourself like your life depends on it, because it may. I think my GP would have caught the signs of my cancer anyway and referred me onward, but Dr. Bad Ex sure wouldn't have.
posted by gentlyepigrams at 2:49 PM on January 12 [10 favorites]
Speaking of bad doctors and why you should fire them: in 2021 my previous rheumatologist failed to note that one of my inflammation markers had increased, going from the "somewhat above normal for a person without my illness" X that is my baseline to about 2.5X compared to my 2019 numbers. My 2020 numbers had not been entered into the chart. When I insisted that there was something wrong, Dr. Bad Ex balked, redid the labs, and when I had the same numbers show up, told me it was because I was fat. (My weight had not significantly changed.) I asked my GP for a referral and she sent me to the local medical school, where I got significantly better treatment from the head of department, who just gave me my hang tag.
He also referred me for symptoms I thought needed review to the doctor at his health system who found my cancer. And while I'm not 100% convinced this is the case, it sure is interesting that my autoimmune disease got hyperactive and almost exactly two years later I get a cancer diagnosis.
The lesson I learned there and will not forget is: Advocate for yourself like your life depends on it, because it may. I think my GP would have caught the signs of my cancer anyway and referred me onward, but Dr. Bad Ex sure wouldn't have.
posted by gentlyepigrams at 2:49 PM on January 12 [10 favorites]
for several months instead of filling my Adderall prescription CVS would text me "we don't have any right now but we're totally gonna fill it when we get some, pinky swear"
my psych was like "you can call around and if you find a location that has it in stock I'll send the scrip over there"
ADHD people online were also talking about the shortage & having to call different pharmacies & I was like "okay I guess calling pharmacies is a real thing and I'm just gonna have to get over my phone anxiety & do it"
well -- and disclaimer, I don't have a huge sample size on this and it could be coincidence or a Phoenix East Valley thing or something, but -- what I discovered after a couple phone calls & a bit of frustration crying was that if you call a CVS & simply ask if they have Adderall in stock they will:
A) immediately claim to be out without pretending to check
B) fuckin lie to your face with the same line about "If we don't have it, no CVS will have it," which is categorically not true
C) kiiiiinda be dismissive assholes
the script that wound up working for me was "Hi, I have a prescription on back order at another location and I'm looking to get it filled, do you currently have Adderall 15 mg extended release"
if I said it like that they actually typed some shit into a computer and apologized if they were out? then like the third or fourth location I called would actually have some in stock (!)
this specific thing only works if you have the same privilege intersections I do where you live in a metro area with a lot of pharmacies and your psych is real fast at getting a scrip in to another location after you shoot him an email, but it really made me realize that in addition to all the other shit you need to do to be taken seriously in a medical capacity, God fuckin help you if they think you're drug-seeking
(not to even get started on my friend with the debilitating chronic migraines who accidentally triggered this reaction from an emergency room doctor after going in for a two-week migraine which is exactly when you want a dude to be rude & dismissive when he tells you he can't really help you)
I hate this shit so much
posted by taquito sunrise at 4:44 PM on January 12 [27 favorites]
my psych was like "you can call around and if you find a location that has it in stock I'll send the scrip over there"
ADHD people online were also talking about the shortage & having to call different pharmacies & I was like "okay I guess calling pharmacies is a real thing and I'm just gonna have to get over my phone anxiety & do it"
well -- and disclaimer, I don't have a huge sample size on this and it could be coincidence or a Phoenix East Valley thing or something, but -- what I discovered after a couple phone calls & a bit of frustration crying was that if you call a CVS & simply ask if they have Adderall in stock they will:
A) immediately claim to be out without pretending to check
B) fuckin lie to your face with the same line about "If we don't have it, no CVS will have it," which is categorically not true
C) kiiiiinda be dismissive assholes
the script that wound up working for me was "Hi, I have a prescription on back order at another location and I'm looking to get it filled, do you currently have Adderall 15 mg extended release"
if I said it like that they actually typed some shit into a computer and apologized if they were out? then like the third or fourth location I called would actually have some in stock (!)
this specific thing only works if you have the same privilege intersections I do where you live in a metro area with a lot of pharmacies and your psych is real fast at getting a scrip in to another location after you shoot him an email, but it really made me realize that in addition to all the other shit you need to do to be taken seriously in a medical capacity, God fuckin help you if they think you're drug-seeking
(not to even get started on my friend with the debilitating chronic migraines who accidentally triggered this reaction from an emergency room doctor after going in for a two-week migraine which is exactly when you want a dude to be rude & dismissive when he tells you he can't really help you)
I hate this shit so much
posted by taquito sunrise at 4:44 PM on January 12 [27 favorites]
I know a General Practitioner who went to the doctor and said
"Hi, I'm a qualified doctor but we're discouraged from doing self referrals, can I have a referral for an ultrasound for a breast lump?"
and the male doctor told her "You're too young (in her 20s/30s) to have breast cancer, you must be depressed, here, have a script for an antidepressant".
She was a young Asian woman, so sexism + racism likely played a role.
Fortunately she saw a second doctor because !spoiler! she had breast cancer at a young age.
posted by chariot pulled by cassowaries at 5:13 PM on January 12 [11 favorites]
"Hi, I'm a qualified doctor but we're discouraged from doing self referrals, can I have a referral for an ultrasound for a breast lump?"
and the male doctor told her "You're too young (in her 20s/30s) to have breast cancer, you must be depressed, here, have a script for an antidepressant".
She was a young Asian woman, so sexism + racism likely played a role.
Fortunately she saw a second doctor because !spoiler! she had breast cancer at a young age.
posted by chariot pulled by cassowaries at 5:13 PM on January 12 [11 favorites]
yeah, the ADHD meds shortages seems like a great example of how sometimes it's understandable why a provider is acting a way, but it's opaque to the patient experiencing it (and a shitty burden besides, but ultimately the issue originates far outside the provider's control).
In this particular example, especially considering that they're controlled meds, my impression is that patients who are already in CVS's system are safer and easier. There also seems to be a policy about not telling just anyone that a pharmacy has controlled meds in stock, not sure if that's a formal policy or more of a common sense thing. CVS pharmacies usually seem overworked and/or understaffed so that probably adds to the "not dealing with you & your issue if I don't have to" vibe.
But the other side of it is like your experience, taquito sunrise, or like how I cried leaving CVS without my meds in December, or like the bajillion other people in this situation.
Empathy can run short on both sides, understandably but unfortunately. Whipping out those bonafides right off the bat is of course always handy (eg starting out by saying you typically get your meds at x pharmacy). For me in this specific situation, I've found it helpful to ask something like "what's the stock situation looking like, do you think any of [med] will come in this month?". Answers like the last one I got: "Ehhh it's on indefinite backorder" set my expectations. At this point I call my CVS to ask how it's looking before I tell my doc I need a refill. (To be fair, I'm able to be chill about this situation because a teensy tiny independent pharmacy has been able to fill my meds the last two months.)
Quick edit to add: I asked at CVS if they could tell me if they had ANY stimulants used to treat ADHD in stock and they said no (I didn't really expect a yes but gotta hail mary sometimes) but asking your doc if they know of any good pharmacies or if they know that certain meds are more readily available can help
posted by Baethan at 5:36 PM on January 12 [4 favorites]
In this particular example, especially considering that they're controlled meds, my impression is that patients who are already in CVS's system are safer and easier. There also seems to be a policy about not telling just anyone that a pharmacy has controlled meds in stock, not sure if that's a formal policy or more of a common sense thing. CVS pharmacies usually seem overworked and/or understaffed so that probably adds to the "not dealing with you & your issue if I don't have to" vibe.
But the other side of it is like your experience, taquito sunrise, or like how I cried leaving CVS without my meds in December, or like the bajillion other people in this situation.
Empathy can run short on both sides, understandably but unfortunately. Whipping out those bonafides right off the bat is of course always handy (eg starting out by saying you typically get your meds at x pharmacy). For me in this specific situation, I've found it helpful to ask something like "what's the stock situation looking like, do you think any of [med] will come in this month?". Answers like the last one I got: "Ehhh it's on indefinite backorder" set my expectations. At this point I call my CVS to ask how it's looking before I tell my doc I need a refill. (To be fair, I'm able to be chill about this situation because a teensy tiny independent pharmacy has been able to fill my meds the last two months.)
Quick edit to add: I asked at CVS if they could tell me if they had ANY stimulants used to treat ADHD in stock and they said no (I didn't really expect a yes but gotta hail mary sometimes) but asking your doc if they know of any good pharmacies or if they know that certain meds are more readily available can help
posted by Baethan at 5:36 PM on January 12 [4 favorites]
I feel like this kind of “navigating the system” works in so many arenas where one person is a gatekeeper for another persons access to resources or approval. You have to have a sixth sense for the person you’re dealing with, how they think, what their concerns are, and what they’re looking for, as well as clear picture of your own specific situation, and shape their view of you towards your desired outcome, with just a touch of pushyness but under the guise of nonchalance. I possess this sense, and my husband does not. Border crossings with him are… fun. We now know to just let me do the talking.
posted by St. Peepsburg at 7:50 PM on January 12 [9 favorites]
posted by St. Peepsburg at 7:50 PM on January 12 [9 favorites]
I have lucked into the best doctor I've ever met or heard of in my life, which I am immensely thankful for. At the end of my appointment today where we had a tentative diagnosis, she said something like "Is there anything else you feel hasn't been investigated enough", and I was floored. This should be the standard, respecting the patients knowledge of themselves, but also, being not only open to, but interested in hearing if they have their own theories.
posted by lookoutbelow at 10:40 PM on January 12 [7 favorites]
posted by lookoutbelow at 10:40 PM on January 12 [7 favorites]
When I called to cancel a follow up appointment with yet another nurse practitioner with a crappy attitude and who had less knowledge than I have about some fairly common medical conditions, the person on the phone asked me when I wanted to reschedule. “Oh no,” I said, “I don’t want to reschedule. I’m firing her.”
God, it felt good to say that.
I had an appointment with another new one last week, and I’m going to be firing her, too. I’m tired of being condescended to by people who don’t even listen to what I say. Like, literally don’t listen. They ask me “how many times has this happened?”, I tell them 3 times, and they write down “two times” in my records. I’ve been through 5 PCP’s in the last two years. Fortunately, my cardiologist, who I adore, told me that if I didn’t like this most recent one, she would recommend someone that I’d like. I’m going to take her up on it. I’ve been dealing with my main health issue for 15 years and no one has been interested in fixing it. Luckily I have a job where I mostly sit and wait for something bad to happen, so being in pain all day, falling asleep at my desk, and being unable to arrive at a specific time all day are manageable, so I’m able to keep a paycheck coming in.
posted by MexicanYenta at 11:25 PM on January 12 [7 favorites]
God, it felt good to say that.
I had an appointment with another new one last week, and I’m going to be firing her, too. I’m tired of being condescended to by people who don’t even listen to what I say. Like, literally don’t listen. They ask me “how many times has this happened?”, I tell them 3 times, and they write down “two times” in my records. I’ve been through 5 PCP’s in the last two years. Fortunately, my cardiologist, who I adore, told me that if I didn’t like this most recent one, she would recommend someone that I’d like. I’m going to take her up on it. I’ve been dealing with my main health issue for 15 years and no one has been interested in fixing it. Luckily I have a job where I mostly sit and wait for something bad to happen, so being in pain all day, falling asleep at my desk, and being unable to arrive at a specific time all day are manageable, so I’m able to keep a paycheck coming in.
posted by MexicanYenta at 11:25 PM on January 12 [7 favorites]
Interesting bit in Debby Harry's memoir: when Chris Stein was in hospital, they self-medicated with painkillers they got from their drug dealer buddies. Which was more efficient than trying to cadge scripts from their doctors.
posted by ovvl at 2:19 PM on January 13
posted by ovvl at 2:19 PM on January 13
Interesting bit in Debby Harry's memoir: when Chris Stein was in hospital, they self-medicated with painkillers they got from their drug dealer buddies. Which was more efficient than trying to cadge scripts from their doctors.
I have a friend whose son is a low-level dealer, and every time we are dealing with frustrating doctors or pharmacists, we always joke about how much faster and cheaper it would be to just call him. He even delivers!
posted by Dip Flash at 2:37 PM on January 13 [1 favorite]
I have a friend whose son is a low-level dealer, and every time we are dealing with frustrating doctors or pharmacists, we always joke about how much faster and cheaper it would be to just call him. He even delivers!
posted by Dip Flash at 2:37 PM on January 13 [1 favorite]
Stolen from social media:
"One of the most effective tactics your doctor can use to override a denial of benefits is to request, in writing, the name and board specialty of the denying physician and proof of their qualifications. Many, many doctors have reported that a denial suddenly turns to an approval the instant they request this information! Because the doctors employed by insurance companies as "peer medical reviewers" are very often unqualified, practicing out of scope, or have a long history of malpractice."
posted by LastOfHisKind at 5:32 PM on January 13 [25 favorites]
"One of the most effective tactics your doctor can use to override a denial of benefits is to request, in writing, the name and board specialty of the denying physician and proof of their qualifications. Many, many doctors have reported that a denial suddenly turns to an approval the instant they request this information! Because the doctors employed by insurance companies as "peer medical reviewers" are very often unqualified, practicing out of scope, or have a long history of malpractice."
posted by LastOfHisKind at 5:32 PM on January 13 [25 favorites]
Describe what you're feeling/experiencing. Don't make up scripts and tactics. Just tell the truth ffs. Jeez.
posted by peacay at 7:01 PM on January 14
posted by peacay at 7:01 PM on January 14
c3rvida3 writes:
Apparently there are a bunch of hoops you can jump through to get all of your medication completely covered that my new psychiatrist was able to do and my old psychiatrist wasn't, so if you're struggling to cover your medication, make sure that's something your doctors are aware of. I think the vocabulary you want is, "Can you petition my insurance to cover this?" and "Does the manufacturer work with any patient assistance foundations?"posted by brainwane at 5:08 AM on January 15 [4 favorites]
So many of us in this thread have been talking about the difficulty in getting doctors, nurses, and similar medical experts to listen. One part of that is: Sometimes one takes pains to ask them a specific, deliberately-worded question, and they don't really seem to attend to the specifics. They answer a question different from the one asked, maybe a more common one. They recommend xyz, not noticing that the patient said xyz won't work for them. And so on. It's maddening!
How can we avoid it or make it less maddening?
I've dealt with a lot of medical folks recently. So, last month, I wrote a blog post about why this problem happens and how I deal with it, mostly in the US. (Some of this also applies to other kinds of experts.) I've now linked to it in my MeFi user profile; if others find it helpful, please feel free to link to it in this thread, in an FPP, elsewhere, etc.
posted by brainwane at 5:18 AM on January 15 [6 favorites]
How can we avoid it or make it less maddening?
I've dealt with a lot of medical folks recently. So, last month, I wrote a blog post about why this problem happens and how I deal with it, mostly in the US. (Some of this also applies to other kinds of experts.) I've now linked to it in my MeFi user profile; if others find it helpful, please feel free to link to it in this thread, in an FPP, elsewhere, etc.
posted by brainwane at 5:18 AM on January 15 [6 favorites]
Oh, that's a marvelous resource brainwane Thanks for sharing that, I missed the original post.
posted by storybored at 8:00 PM on January 16 [3 favorites]
posted by storybored at 8:00 PM on January 16 [3 favorites]
“How To Get What You Need From Your Doctor,” Doc Impossible, Stained Glass Woman, 22 January 2024
A guide to patient self-advocacy when you're transposted by ob1quixote at 6:35 PM on January 23 [3 favorites]
Describe what youre feeling/experiencing. Dont make up scripts and tactics. Just tell the truth ffs. Jeez.
I’m really, truly happy for you that you either haven’t had a serious and/or chronic illness, or haven't been subjected to medical disbelief and gaslighting. I wish I was still at that phase of life. Hopefully, you will remain in that phase for as long as possible. Whenever that changes, you may find some of these tactics helpful to advocate for yourself (or a loved one) in getting the medical care you deserve.
posted by bluloo at 12:12 PM on January 29 [8 favorites]
I’m really, truly happy for you that you either haven’t had a serious and/or chronic illness, or haven't been subjected to medical disbelief and gaslighting. I wish I was still at that phase of life. Hopefully, you will remain in that phase for as long as possible. Whenever that changes, you may find some of these tactics helpful to advocate for yourself (or a loved one) in getting the medical care you deserve.
posted by bluloo at 12:12 PM on January 29 [8 favorites]
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