Tuesday, May 10, 2011

It's Never Lupus? May 10 is World Lupus Day

If I hear "It's never lupus" one more time I'm going to personally track down the writers of House MD and force them to clean my toilets with their tongues. And we have 3 toilets.

I have a few questions for these writers:
Why are you running an anti-awareness campaign? Would you do this for any other equally terrible disease? Would you say "It's never cancer?" or "It's never MS?" or "It's never Parkinson's?"
How about "It's never a heart attack?" No, because if this were a comedy club, you'd be booed off the stage.

Why does anyone think "it's never lupus" is funny? My only guess is that it's because the word "lupus" sounds funny, like dodo bird or cuckoo clock. I wish we could rename the disease to better reflect how awful it is. How about "crapstorm?" No, still too funny.

It's never lupus... Having had lupus for 20 years now, I've had it cause anemia, kidney failure, stroke, hair loss, weight loss, congestive heart failure... oh, I guess none of that ever happened either.

I was watching House MD- the episode where the patient was in Antartica in a lab and had to be examined by House long-distance, over teleconference. While he was brainstorming about all the possible things she could be suffering from, one of the things House guessed was... LUPUS!!! (this coming from Mr "it's never lupus!"). But in order to keep their running "joke" intact, they referred to it as "SLE." (systemic lupus erythmatosis). Nice way to have your cake and eat it too, a-holes.

Because there are 1.5 million people or more in the US alone with lupus, it's just a matter of time before someone on the House MD writing staff (or someone in their family) develops lupus. I don't wish it on them, but the odds are good. Oh wait, I forgot, there's no such thing as lupus.

What a relief then. I'll just stop getting blood tests and chalk up my years of symptoms (and by "symptoms," I mean stroke, kidney failure, congestive heart failure) to hypochondria. Or maybe it was psychosomatic. In which case, if kidney failure is psychosomatic, then everything is. Cancer, MS, all of it.

And the world is flat, and we never landed on the moon.

"It's never lupus?"- it's never funny.


Headstrong said...

What IS funny is that before the House, MD show ever came out, the running joke at the institution where I worked was "It's always lupus" - because of the high prevalence and the myriad ways the disease can manifest clinically. As a medical student, I had preceptors who, when discussing building differential diagnosis lists, would say with a smile, "You can never go wrong by suggesting lupus.'" Heck, I even giggled about it with my PCP, winking and quipping, "It could be lupus!" when I first went into have some of my early symptoms evaluated. Then, and now, "It could be lupus" is and will forever be my mantra when I assess patients - House be gol-durned!

And, on an important side note - a hopeful and edifying World Lupus Day to you, Ms. Carla!

Della said...

No, it's never funny. Especially when your primary care doc laughs at you and says, "You don't have Lupus!" and then his office calls to confirm that you DO have lupus, and they are referring you to a rheumatologist. and then you see a nephrologist because your lups has cause kidney failure. I've been there, too. No, it's not funny at all.

Stiletto Sports Jen said...

Never funny, but often hits with irony.
I am a House nut. Watched it all the time and always heard the "it's never lupus ha ha ha" routine.
I got really sick and no one could figure it out for 2.5 months. They just kept saying it was a UTI.

I remember my nephrologist sitting there saying to me "we are going to test you for everything from lupus and RA to HIV and hepatitis and all the usual things. And then we are going to test you for things that aren't common too" and me thinking "wow... it's like an episode of House. But I know it won't be lupus, it's never lupus."

And then, bam, hey, it's lupus!

And I too, just saw the antartica episode. grrr.

Dr. P said...

Hi, I am sorry about your diagnosis.... SLE is a truly devastating disease.

However, you clearly don't understand the point of the joke. It is NOT intended to make fun of the severity of lupus, nor discount it as a disease that nobody gets, nor poke fun at the name. The idea behind it is that SLE can manifest with literally ANY symptom, and so in theory, lupus has to be in the differential diagnosis (list of possibilities) for every patient, no matter what their presenting symptoms may be. This is not the case for Parkinson's, MS, heart attack, or any one type of cancer.

The joke is something that really only people in the medical field would understand right away, but the jist of it is this: When a doctor is stumped by a patient's illness and cannot figure out what is wrong with them based on their current presentation, a suggestion of lupus functions as a "safety blanket". Since lupus is mostly a diagnosis of exclusion (i.e. we thought of everything else, therefore this is the only thing left that it could be) and is also quite rare (the most comprehensive study to date estimates that the prevalence in the US is less than 0.0005%), there is no way that you can disprove them without running a complex and expensive series of tests. House is not making fun of the disease, but is actually making fun of the other doctors for essentially giving up. Saying "it's never lupus" is his way of calling the other doctors stupid (since he clearly has a possible disease process in mind which they have failed to consider). This is why they had the episode where a patient actually DID have SLE, in order to put House in his place.

Hopefully this clarifies the joke, so that you might appreciate it whenever it comes up again instead of taking offense.
I wish you all the best, take care.

-Dr. P

The Singing Patient said...

Thanks for writing in < Dr. P, and explaining the unspoken context behind the joke.

I did not see that episode where a patient really did have SLE (I no longer watch House). I'm glad they finally wrote in an episode where lupus was treated as the actual serious disease that it is. By the way, it is not all that rare- it is estimated to affect 1.5 million Americans.

I may not be Einstein, but I am a college graduate (with honors), so if I didn't get the joke, I am sure I am not alone. In fact, what annoys me about their constant repetition of the phrase "it's never lupus" is that for a great deal of the population, that is the only thing they have ever heard about lupus.

And they aren't going to be getting a medical degree anytime soon, to help them understand the nuances of the "never lupus" "joke."

What we seem to have here is a clash of 2 cultures- the medical culture, frustrated by how hard it is to diagnose lupus, and the patients, frustrated by having a chronic serious painful disease, and doubly frustrated by people thinking it's a joke, or that it doesn't exist.

The Singing Patient said...

headstrong, thanks for the comment. Glad to know there's a balance out there. My nephrologist used to tell me every time he saw me how his colleague, who decided to do his thesis on lupus, was never going to be able to finish writing it because it's such a tricky disease. (For some reason he thought this was hilarious and told me this story every time I saw him. Guess I was his only lupus patient). Wonder if that guy ever finished his paper... meanwhile, Cheers to you headstrong.

The Singing Patient said...

Della, too true. I've moved several times and when I tell new doctors I have lupus, they ask me in an accusatory tone "Who told you that you have lupus?!"

Like if I were going to pretend I have a disease I'd pick lupus! Definitely not! I'd pick something I don't have to explain!

Thankfully, I have found ways to laugh about lupus. Well, about life with lupus, that is. I started by not watching House anymore ;)

Anonymous said...

You're looking at this all wrong, IMO. “It's Never Lupus!” was never intended to be funny. House, M.D. was recognized by a Lupus Advocacy Group for raising awareness of the disease. I would say that is a positive thing...

Carla Ulbrich said...

well that is another point of view. Thank you for your comment.

there's a saying in show biz that there's no such thing as bad publicity. So having lupus mentioned, even in the context of it never being an accurate diagnosis, at least gets it mentioned?

still... it's very tiresome when people find out you have lupus and their response is "it's never lupus!" ha. ha. ha.

Carla Ulbrich said...

I'm starting to think from this comment thread that this "it's never lupus" thing is funny to everyone except people who have lupus. In which case, I'm not looking at it "all wrong," I'm looking at it from the point of view of someone who suffers from a very serious disease and almost died from it. It took me 2 years to get diagnosed, getting sicker and sicker while going from doctor to doctor trying to get a diagnosis- and that 2-3 year wait for a diagnosis of lupus is not uncommon.

Anonymous said...

I'm sorry, I wasn't trying to make light of your situation. Just expressing a point, albeit in a less than friendly manner I think (now that I've reread what I wrote). Lupus is certainly a very serious and complicated disease. Diagnosis seems to be equally as complicated.

Before House, M.D., I had never even heard of Lupus. I've since done a lot of digging to try to understand what exactly Lupus is and the like. I'm sure others have learned of it in the same manner. In this way, I view it as a positive thing.

Carla Ulbrich said...

thanks for your thoughtful response. We all learn from each other's different points of view.

Anonymous said...

Indeed, we do,