7 ms·

> Far too often, women who present with hard-to-diagnose illnesses are told that the symptoms are no big deal, that the problem is in their head. They spend yea

> Far too often, women who present with hard-to-diagnose illnesses are told that the symptoms are no big deal, that the problem is in their head. They spend years going from doctor to doctor, in a desperate search for someone, anyone, who’s willing to help. This has not been my experience. From the first, doctors took my condition seriously, sometimes more seriously than I did. I would love to know what she did to get doctors to take her symptom profile seriously when she merely presented with the same vague and often dismissed symptoms of women with complex medical conditions. I have multiple friends who get told to just get more fit, despite also having observed cardiac symptoms that worsen to any exercise.

justusthane 4y ago
It might have helped that she works at Yale, and that's where she initially went for care: > "As a professor at Yale, I receive my medical care through the university's health center, a private bastion of socialized medicine [...]"
- dmix 4y ago
  My mom took some medication when she had Macular Degeneration (or maybe it was for something else) and her skin started turning a slight blue tint. Her small town (Canadian) family doctor ended up telling his friend in university and she ended up getting studied by lots of different university researchers/specialists and was even brought in front of a University of Toronto medical class to demonstrate it. So sometimes novel symptoms result in novel research, without personal social signals.
InitialLastName 4y ago
Not even complex medical conditions; a friend with stomach pain issues was being blown off by doctors with "just lose weight" for a year before she collapsed on the sidewalk. In the hospital, they removed a 30-lb cyst from her abdomen, but I'm not sure diet and exercise would have helped with that particular weight loss.
- geraldwhen 4y ago
  It would have made it much simpler to identify a huge cyst, and the fat may have exacerbated or caused the cyst.
  - rondold 4y ago
    yes lol imagine how incredibly obese you have to be to not know you have a 30lb tumor. its like those women who don’t know they’re pregnant but actually even fatter
- foobarian 4y ago
  I wish it were easier to self-test with things like CT, ultrasonic or MRI scanners. Until I went to the ER with symptoms that exactly matched a gallbladder condition I was never before let even near one of those machines, but looking at the scans the problem was so obvious. I imagine for this woman the problem would have been obvious too from a simple scan.
  - s1artibartfast 4y ago
    Depending on your definition of easy, it is. It just takes money. There are private clinics that will do full body MRI for preventative screening and diagnosis. This level of personal care is just cost prohibitive for most people
    - Aeolun 4y ago
      I mean, most of the time it is just pointless. I’ve had like 3 MRI’s and 10 CT scans over the past 10 years because they’re cheap and plentiful in Japan, but they’ve only found something relevant once (to be fair, it was pretty nice they caught that cyst growing in my ass). I’m left wondering if all those CT’s didn’t hurt more than they helped…
      - s1artibartfast 4y ago
        CT scans are pretty heavy radiation, 50 or 100 times as much as a standard x-ray. If they didn't find anything major than you are statistically worse off than if you never got them.
smeej 4y ago
It sounds like the obviously swollen hand was a big symptom, at least for the doctor who immediately said, "That's not rheumatoid arthritis." To use the zebra analogy, it sounded like that was the part where the doctor said, "I don't know wtf this is, but it's not a horse."
- FollowingTheDao 4y ago
  Exactly. Doctors always see horses. Whenever they see a zebra they just tell you that it is a horse that you painted with stripes in your imagination.
sumtechguy 4y ago
I have a friend, he gets wild migraines all the time. Dozens and dozens of doctors over 25 years. All he can say at this point is what he thinks doesnt cause them. The issue is diagnosing these sorts of things is tough. You can not exactly crack someone open and poke around and not possibly break things plus the cost of time and money. So you mostly look at the symptoms and hope you can read the tea leaves and get it. For most things that works pretty good. But get a bit out of field of what they do and you will have a bad time with most doctors unless they happen to read the tea leaves correctly. My mother in law went from 'you have the flu' to 'you have stage 4 single cell' in under a week and was dead soon after. She went to the doctor dozens of times about it the months before. We get this idea that doctors are miracle worker wizards. But sometimes you feel like they are playing with bear skins and arrow heads.
toolz 4y ago
> despite also having observed cardiac symptoms that worsen to any exercise. Isn't this the exact reason they should exercise? I'm sure the symptoms present worse during exercise, but the exercise itself will gradually make your body more resilient or even cure many cardiac issues. I'm unaware of any cardiac disease that gets worse with some form of exercise, granted there are levels of intensity in exercise no one should be attempting without proper conditioning.
PragmaticPulp 4y ago
> I have multiple friends who get told to just get more fit, despite also having observed cardiac symptoms that worsen to any exercise. Clinically, it's rare for people (below retirement age) to have cardiac conditions that exclude any exercise. I don't know your friends' details, but a common pattern in these situations is for there to be a misunderstanding about what "exercise" means. If someone is having life-threatening cardiac symptoms, no reasonable doctor is going to recommend that they just go to the gym and sweat it out. In the worst cases, what they're trying to avoid is the deconditioning slide that comes with chronic illness. The goal isn't to get fit or go for runs or push to exhaustion. The goal is to slow the physical health decline that comes with being too sedentary. It can be counterintuitive, but doing extremely light activity (walking 0.1 miles per day, working up to 0.4 miles per day) can be extremely beneficial compared to avoiding activity altogether, even if it's uncomfortable. Once the fitness is gone, it's hard to get it back. A lot of patients start out with one condition, which then becomes a combination of that condition plus a year of deconditioning. Physical therapists trained in chronic illness specialize in these treatments and adapting to the bounds of any cardiac limits.

justusthane 4y ago

It might have helped that she works at Yale, and that's where she initially went for care: > "As a professor at Yale, I receive my medical care through the university's health center, a private bastion of socialized medicine [...]"

dmix 4y ago
My mom took some medication when she had Macular Degeneration (or maybe it was for something else) and her skin started turning a slight blue tint. Her small town (Canadian) family doctor ended up telling his friend in university and she ended up getting studied by lots of different university researchers/specialists and was even brought in front of a University of Toronto medical class to demonstrate it. So sometimes novel symptoms result in novel research, without personal social signals.

InitialLastName 4y ago

Not even complex medical conditions; a friend with stomach pain issues was being blown off by doctors with "just lose weight" for a year before she collapsed on the sidewalk. In the hospital, they removed a 30-lb cyst from her abdomen, but I'm not sure diet and exercise would have helped with that particular weight loss.

geraldwhen 4y ago
It would have made it much simpler to identify a huge cyst, and the fat may have exacerbated or caused the cyst.
- rondold 4y ago
  yes lol imagine how incredibly obese you have to be to not know you have a 30lb tumor. its like those women who don’t know they’re pregnant but actually even fatter
foobarian 4y ago
I wish it were easier to self-test with things like CT, ultrasonic or MRI scanners. Until I went to the ER with symptoms that exactly matched a gallbladder condition I was never before let even near one of those machines, but looking at the scans the problem was so obvious. I imagine for this woman the problem would have been obvious too from a simple scan.
- s1artibartfast 4y ago
  Depending on your definition of easy, it is. It just takes money. There are private clinics that will do full body MRI for preventative screening and diagnosis. This level of personal care is just cost prohibitive for most people
  - Aeolun 4y ago
    I mean, most of the time it is just pointless. I’ve had like 3 MRI’s and 10 CT scans over the past 10 years because they’re cheap and plentiful in Japan, but they’ve only found something relevant once (to be fair, it was pretty nice they caught that cyst growing in my ass). I’m left wondering if all those CT’s didn’t hurt more than they helped…
    - s1artibartfast 4y ago
      CT scans are pretty heavy radiation, 50 or 100 times as much as a standard x-ray. If they didn't find anything major than you are statistically worse off than if you never got them.

smeej 4y ago

It sounds like the obviously swollen hand was a big symptom, at least for the doctor who immediately said, "That's not rheumatoid arthritis." To use the zebra analogy, it sounded like that was the part where the doctor said, "I don't know wtf this is, but it's not a horse."

FollowingTheDao 4y ago
Exactly. Doctors always see horses. Whenever they see a zebra they just tell you that it is a horse that you painted with stripes in your imagination.

sumtechguy 4y ago

I have a friend, he gets wild migraines all the time. Dozens and dozens of doctors over 25 years. All he can say at this point is what he thinks doesnt cause them. The issue is diagnosing these sorts of things is tough. You can not exactly crack someone open and poke around and not possibly break things plus the cost of time and money. So you mostly look at the symptoms and hope you can read the tea leaves and get it. For most things that works pretty good. But get a bit out of field of what they do and you will have a bad time with most doctors unless they happen to read the tea leaves correctly. My mother in law went from 'you have the flu' to 'you have stage 4 single cell' in under a week and was dead soon after. She went to the doctor dozens of times about it the months before. We get this idea that doctors are miracle worker wizards. But sometimes you feel like they are playing with bear skins and arrow heads.

toolz 4y ago

> despite also having observed cardiac symptoms that worsen to any exercise. Isn't this the exact reason they should exercise? I'm sure the symptoms present worse during exercise, but the exercise itself will gradually make your body more resilient or even cure many cardiac issues. I'm unaware of any cardiac disease that gets worse with some form of exercise, granted there are levels of intensity in exercise no one should be attempting without proper conditioning.

PragmaticPulp 4y ago

> I have multiple friends who get told to just get more fit, despite also having observed cardiac symptoms that worsen to any exercise. Clinically, it's rare for people (below retirement age) to have cardiac conditions that exclude any exercise. I don't know your friends' details, but a common pattern in these situations is for there to be a misunderstanding about what "exercise" means. If someone is having life-threatening cardiac symptoms, no reasonable doctor is going to recommend that they just go to the gym and sweat it out. In the worst cases, what they're trying to avoid is the deconditioning slide that comes with chronic illness. The goal isn't to get fit or go for runs or push to exhaustion. The goal is to slow the physical health decline that comes with being too sedentary. It can be counterintuitive, but doing extremely light activity (walking 0.1 miles per day, working up to 0.4 miles per day) can be extremely beneficial compared to avoiding activity altogether, even if it's uncomfortable. Once the fitness is gone, it's hard to get it back. A lot of patients start out with one condition, which then becomes a combination of that condition plus a year of deconditioning. Physical therapists trained in chronic illness specialize in these treatments and adapting to the bounds of any cardiac limits.