July 25, 2007

Cyberchondria.

Do you have that special internet hypochondria?

IN THE COMMENTS: Peter Palladas tells this story:
I had an email from a strange woman - like you do - some years back. She had been visiting her GP with concerns about a weird lump in her belly.

GP had written it off - as they do - as something and nothing. A lipoma [bundle of harmless fat] is the most common guesstimate made in such circs.

But she wasn't satisfied and began searching the Web for options: 'lump, unexplained, useless GP, death,' etc.

That search took her to something I'd written about my own fucking disease - soft tissue sarcoma - where I'd moaned about ignorant GPs who don't know their lipoma from their sarcoma.

So she went back to her GP and told her to think again. So GP did have another think and lo and behold this woman did have exactly a soft tissue sarcoma the size of a bowling ball in her gut.

Surgeons whipped it out pronto and a life was saved.
Pogo -- a doctor -- wrote:
Palladas is on to something. Physicians were trained to be a priestly class, whose secret knowledge and arcane phrases must be translated to be understood.

A familiar taunt of patients who had read a bit (circa 1980) was and where did you go to medical school?. And boy did that shut them up.

This isn't so much the case anymore, and the Internet has become the modern equivalent of the Protestant reformation, wherein the priest can be bypassed, and salvation gained independently.

ADDED: My grandmother was regarded as a hypochondriac for many years, when in fact, she was suffering from scleroderma, which eventually killed her. So not only did she suffer horribly from the disease, she also had to endure the extreme disrespect of doctors and family members who saw her as an annoying crazy old lady.

31 comments:

blake said...

I come down with the avian flu every single time Glenn mentions it.

Does that count?

Galvanized said...

I do. I have also suffered transcriptochondria for a decade, from typing conferences for doctors/health forums on diseases and such. But at least I'm not a whinybaby neurotic, right?

Fred said...

stupid doctors, what the heck do they know anyway!

Peter Palladas said...

Here's where I come over all serious and forgive me for that rare lapse:

I had an email from a strange woman - like you do - some years back. She had been visiting her GP with concerns about a weird lump in her belly.

GP had written it off - as they do - as something and nothing. A lipoma [bundle of harmless fat] is the most common guesstimate made in such circs.

But she wasn't satisfied and began searching the Web for options: 'lump, unexplained, useless GP, death,' etc.

That search took her to something I'd written about my own fucking disease - soft tissue sarcoma - where I'd moaned about ignorant GPs who don't know their lipoma from their sarcoma.

So she went back to her GP and told her to think again. So GP did have another think and lo and behold this woman did have exactly a soft tissue sarcoma the size of a bowling ball in her gut.

Surgeons whipped it out pronto and a life was saved.

I feel prety pleased about that. No gold medal or huge cheque was ever forthcoming sadly, but score a rare one for the Web.

Jennifer said...

Great story, Peter Palladas!

I think I'm on the opposite end of the spectrum from cyberchondria. Quick googling can convince me that anything and everything is a-ok.

Pogo said...

Palladas is on to something. Physicians were trained to be a priestly class, whose secret knowledge and arcane phrases must be translated to be understood.

A familiar taunt of patients who had read a bit (circa 1980) was and where did you go to medical school?. And boy did that shut them up.

This isn't so much the case anymore, and the Internet has become the modern equivalent of the Protestant reformation, wherein the priest can be bypassed, and salvation gained independently.

While MDs complain about the quality of medical stuff out there,the average joe and jane is smart enough to separate wheat from chaff (and can google 'chaff') easily. Unstated is the fear that MDs will be out of work (not true) and will lose status (true).

I'll admit I was initially irritated by the increasing patient web research intruding on office visits. I got over it.

The article does describe a hypochondriac but poorly. They should have simply mentioned that these folks have every symptom that there is. They are always sick, and have been for years and years. They often bring literally 300 pages of medical records with them, in addition to the 200 pages of internet effluent.

And that patient is the one doctors dread because nothing medicine does for them or to them ever seems to help, except treating the anxiety, and then only a bit.

These patients more often need a metaphysician instead. I'm serious. Anxiety is just a $10 word for fear. And what is it they fear? Why do they fear it so? Can unrelenting fear itself become a disease?

Doug said...

I suffered from this and self diagnosed myself with lymphoma, leukemia, colon cancer, testicular cancer, skin cancer, and I am sure a few more.

Health sites list certain things as symptoms, yet there are huge degrees of each symptom. Also, many of these symptoms have enormous overlap with common, harmless diseases. Fatigue, fever, swollen glands are common with a cold, flu or sinus infection, but can be a sign of most any disease.

Tim said...

Medicine is still more art than science.

That said, eat less, exercise more, don't smoke or abuse drugs, and drink to moderation. Watch your weight, blood pressure, cholesterol, and have age and gender appropriate screenings.

You'll still die, of course, but on average you'll live longer and healthier. And stop worrying.

Tim said...

One more thing - don't have unprotected sex with strangers.

Peter Palladas said...

One more thing - don't have unprotected sex with strangers.

Sound advice of course, though the chat up line "Howdy stranger. Fancy sex?" has never worked for me anyway.

There is a further thread one could explore:

Once I found out I had this fell thing I was fortunate enough to land in the laps of exactly the right people to treat the disease. (No point in coming from a family of doctors if you can't use them to search out the experts.)

So I never needed the Net to look for treatments, but I did find wonderful online support groups - mostly from ACOR - who were invaluable in sharing/supporting the emotional turmoil of being diagnosed with a potentially life-threatening illness. My thing is so rare I could harass an entire stadium of people and not find anyone thus afflicted, but online we were a shedload all in one place.

Quite a revelation for a typical emotionally constipated Brit to be able to emote in public with other people in the know and without cringing with embarrassment. (Stiff-upper lip is still the English cure for most illnesses.)

It ain't perfect. There is no easy way to read an email that begins "Dear group, yesterday my darling son/daughter aged 13 died from this terrible illness", nor the more indeed to write it.

It's up close and personal and yet it is also words on a screen. A new way to grieve.

Justin said...

Peter Palladas said...

Sound advice of course, though the chat up line "Howdy stranger. Fancy sex?" has never worked for me anyway.

Maybe because you went from Texan to British in two sentences. I suggest picking one vernacular and sticking with it. For instance: "Howdy stranger. Wanna do some mattress dancin'?" I'll leave the British equivalent up to you.

Pogo said...

The sense that something is terribly wrong is too often correct to be ignored or dismissed.

The problem is when to quit. I have seen patients who have visited multiple different centers like Johns Hopkins, Cleveland Clinic, Mayo Clinic, Scripps, etc. and nothing is found but they keep searching, sometimes for decades.

The truly hard part is to understand when your own body might in fact be lying to you and no, you don't have a systemic yeast infection, or chronic Lyme disease, or Epstein Barr, or multiple chemical sensitivities, or Morgellons disease.

But you might just have a chronic complex PTSD causing multiple physical symtpoms.

*jane said...

You are coping with such grace, Peter. That we all would do so with our various afflictions, physical or otherwise.

Pogo sounds like one of the most grounded, honest doctors a patient could ever hope to meet.

TMink said...

Peter, great job! Outstanding.

In my line of help, therapy, I generally find that people who are self-motivated get relief quicker. They work hard, get better, and fire me. I like it that way.

Of course, then you have the folks who look and look and find and find spurious diagnoses or syndromes to hide from the fact that they are acting like a flake and need to show some personal responsibility.

But in my practice, they are in the minority!

Trey

Pogo said...

jane, that's very kind of you to say. I tend to think of myself how Winston Churchill described Clement Atlee, “Mr. Atlee is a very modest man. Indeed, he has a lot to be modest about.”

and tmink: great job description:
"They work hard, get better, and fire me." I will steal that for later use.

Zeb Quinn said...

And then there's the correlationship with aging. In my late 50s, I take 6 different prescribed medications daily, whereas 15 years ago, healthy and robust, I took none. They found me. I didn't go looking.

*jane said...

LOL. Churchill's pointed praise was deadly, at least socially.

Simon Kenton said...

Peter wrote: "Sound advice of course, though the chat up line "Howdy stranger. Fancy sex?" has never worked for me anyway."

The problem with this is that you may have to define what you mean by "fancy sex." This can reveal you as woefully unimaginative, or as ... weird ... beyond anything the friendly stranger ever conceived, hoped for, or could tolerate.

Roger said...

Peter of course used the British vernacular as in "fancy" meaning care to.

Peter: it hs long been at least one operating philosophy that by simply coming out and saying something like: Hi there, fancy sex, is very straightforward--It might get you slapped but on the other hand, it might work--in either case you arent out a lot of money for drinks, dinner, opera, or show. Quite the parsimonious approach to l'affaire.

Justin said...

TMink said...

In my line of help, therapy, I generally find that people who are self-motivated get relief quicker. They work hard, get better, and fire me. I like it that way.

So how do you help someone who's problem is a lack of self-motivation?

TMink said...

Great question Justin! It is damn hard to help someone with a lack of motivation!!!! I wait and talk and listen and become darn obstinate about not pushing them or trying to motivate them while discussing the many consequences of their passivity.

And I praise them when they make a choice and try to wring every possible drop of self-satisfaction out of their more agentic stance.

It is slow work, and they generally fire me for not fixing them! But I get fired one way or another.

Great question!

Trey

Peter Palladas said...

Hi there, fancy sex, is very straightforward--It might get you slapped but on the other hand, it might work

You're not wrong and funnily enough I have found - long past tense - that it was the women who were far more adept at the 'Get your coat, you've pulled' conversational ice-breaker.

And in such circs one simply has had to follow the Zorba the Greek line, which was something to the effect:

"God is very forgiving, but he cannot forgive a man invited to a woman's bed who refuses to go."

I like the Greeks.

Roger Sweeny said...

So how do you help someone who's problem is a lack of self-motivation?

We teachers have the same problem.

Pogo said...

As to your grandmother:

Doctors tend to hate subjects and symptoms beyond their grasp. It's easier to call a patient crazy.

A story:
This is probably apocryphal, but one of my teachers said he had worked with a famous physician who, upon interviewing the woman, wrote in the chart
"This woman is a crock."
However, a scan was abnormal, and his note the next day read
"This woman is a crock with cancer."

Tibore said...

Palladas,

Wow... what a story. That's hard to believe.

Don't get me wrong, I'm not saying I doubt you; quite the opposite, I completely believe you. It's just that I'm just amazed a doctor would blow something off like that. My own story's completely different: I ended up with a soft tissue sarcoma - "leiomyosarcoma" it was called on the report - and when I first went to the doctor about the funny lump on my leg, he didn't even come close to dismissing it. Rather, he noted how long it was there, what it felt like, and then gave me the range of options. Totally ignoring it was emphatically out of the question. Waiting to see if it goes away was one, but he really worked me away from that. The one we settled on was biopsy, and it was decided on after due discussion. So given that, and another fatty tissue scare I had a few years later where the lump was again taken quite seriously, I'm at a complete loss to understand why another doctor would just write it off. My doctor didn't, and he acted like his method for investigating weird bumps was quite routine.

That first lump wasn't something that looked obviously wrong, either. I could cover it with a nickel; I honestly thought it might have been some sort of pimple that got infected and grew sensitive (the tumor ended up being the size of a damn walnut; save for that tiny bump, it all was well under the skin). So I don't think my case was a no-brainer as far as diagnosis goes. I wouldn't have questioned him if he said "It's okay, nothing to worry about".

Anyway, don't get me wrong, I don't disbelieve you at all, it's just that I find it amazing and appalling that there are doctors out there who'd do what that GP did. Mine sure as hell didn't.

Peter Palladas said...

Mine sure as hell didn't.

That's good to hear. You in US or in UK? - that might account for it.

Over here in UK we do now have protocols for urgent referral for scans when lumps present in classic sarcoma-esque fashion, though they were not in place in 2000 when I was smitten.

It is recognised that most GPs will see few if any cases of sarcoma in a lifetime - though how many they may miss is never counted! - and specialists would be swamped if all odd lumps and bumps were sent their way just in case.

But I met many people who had passed through a similar slough of unknowing, indeed to the point of being operated on for 'goitres', 'cysts' or 'lipomas' etc that on the operating table proved to be a sarcoma.

The medical literature even has a name for such events. They are known as 'Whoops Procedures', as in 'We thought we were excising a lipoma when, whoops, we discovered it was a sarcoma'.

My Story - and I have more hair now! should you care to read it.

Peter Palladas said...

...and then gave me the range of options.

That's really the whole good bit - your medic did a proper differential diagnosis and mine didn't.

What they should at least be able to say is:

"Heck, it's far more likely than not to be something straightforward like a lipoma. The chances of you having something more serious - read deadly - like a sarcoma are minimal though not nil.

But from the presentation, signs and symptoms that I have carefully considered and noted it could just be a sarcoma.

There are guidelines I am aware of and make use of to guide me as a generalist in medicine, so I am going to refer you for a biopsy - the Gold Standard of sarcoma diagnosis.

Don't be unduly afraid and don't go blowing your pension pot before you get the result, but let's proceed to define the problem before we try and sort it."

And here's a research protocol: the number of Althouse readers who show up at their GP in the next six months demanding to know whether their swollen knee or painful shoulder is a frigging sarcoma.

A thousand might who have nothing and that would piss off the medics, but one may who turns out to have a sarcoma. He or she is going to be mighty pleased with that outcome.

(Actually they will be aghast to find they have joined the mile-low club I guess, but you know what I mean.)

Chip Ahoy said...

What's the difference between a doctor and God? God doesn't go around thinking he's a doctor.

"A PDR is a weighty book -- this patient wasn't a doctor nor was her husband. It was a red flag that maybe she had a health anxiety."

So? Anyway, PDR are on PDAs with the benefit of automatic drug updates.

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