No Evidence
September 17, 2012 10:10 PM   Subscribe

Maciej (previously: 1, 2) tells the story of his girlfriend's struggle with disease and her friend Stephanie, before the entire story goes sideways.
posted by mathowie (77 comments total) 49 users marked this as a favorite

 
"his girlfriend's struggle with disease and her friend Stephanie"---how wise syntactic ambiguity can sometimes be.

I was particularly surprised by the psychiatrist's disclosure to Diane. Perhaps it was a broad interpretation of Tarasoff in that the psychiatrist saw a potential risk to Diane if she continued exhausting herself to care for Stephanie's non-existent illness?
posted by Sidhedevil at 10:18 PM on September 17, 2012 [3 favorites]


I, uh, er.... Wow.
posted by Kid Charlemagne at 10:29 PM on September 17, 2012 [2 favorites]


This chick Marla Singer did not have testicular cancer. She was a liar. She had no diseases at all.
posted by Blue Meanie at 10:35 PM on September 17, 2012 [16 favorites]


It's a violation of HIPAA for the psychiatrist to talk with the author and girlfriend about Stephanie unless Stephanie has signed a release. Also, the author/friend should not have been able to find out any information about Stephanie from UCSF at all, including whether she was ever a patient there.
posted by grootless at 10:39 PM on September 17, 2012 [17 favorites]


I had a roommate in grad school who had fake lyme disease. What she really had was a complicated guilt-shame-depression thing going on related to childhood abuse and lyme disease got her the medical care she needed but without people asking questions about her childhood. This worked up until her psychiatric exams for preparation for ordination in the church (Methodist) turned up pretty quickly that she had this terrible history of abuse she was just totally ignoring but acting out by having various fake diseases and drawing sympathy and support. It was all very strange.

I was sympathetic and supportive, she had some real bullshit to deal with, but my supportiveness was mostly about getting her to see a shrink and an Ob/gyn.
posted by Eyebrows McGee at 10:42 PM on September 17, 2012


It went from :) :) :) to @_@ @_@ @_@ in three sentences flat. In other news, I'm glad that the author was able to still be a source of comfort during such a trying time.

Here's to a real 0th cupcake!
posted by kurosawa's pal at 10:43 PM on September 17, 2012


grootless, I know HIPAA laws are pretty strict, but whenever something insanely out of the ordinary happens, sometimes I think people go back to being human and make exceptions to the rules when it's absolutely necessary.
posted by mathowie at 10:43 PM on September 17, 2012 [16 favorites]


True. Sometimes ethical action (in a human sense) and HIPAA don't mix.
posted by grootless at 10:47 PM on September 17, 2012 [1 favorite]


I'm always glad to see something from Maciej, and I'm sorry to hear he and his partner have been going through cancer times. I don't even know what to say about the friend, except here's hoping they have seen the back of her.
posted by LobsterMitten at 10:49 PM on September 17, 2012


if you're friendly with the staff, you can find out almost anything, so long as you aren't obnoxious about it and have a compelling reason. I could totally see sidling up to the desk nurse (that you've seen 300 times) and asking if so and so is a patient there; it's highly likely she'd tell you, especially if you had an even remotely compelling reason why you wanted to know.
posted by dethb0y at 10:56 PM on September 17, 2012


This has libel suit written all over it.
posted by Sys Rq at 10:57 PM on September 17, 2012 [1 favorite]


(That said: Remember to shave the eyebrows too, folks.)
posted by Sys Rq at 10:58 PM on September 17, 2012 [1 favorite]


It's a violation of HIPAA for the psychiatrist to talk with the author and girlfriend about Stephanie unless Stephanie has signed a release.

In this piece, the only interaction directly between the psychiatrist and Diane is the Psychiatrist asking how certain Diane is that Stephanie had cancer. The rest could be secondhand from Stephanie's mother. The same with the disclosure from UCSF- we don't know that is was to Diane, and not Stephanie's mom.

I hope that in any case, Diane had some good times and distraction from what she was going through. I can imagine being incredibly pissed that I had taken a life-threatening airplane ride to, in hindsight, satisfy some charlatan's weird itch, but... maybe there's some minor bits of amusement among the WTF.
posted by oneirodynia at 10:59 PM on September 17, 2012 [1 favorite]


Cancer has really reduced my fear of lawsuits, Sys Rq. So many silver linings!
posted by idlewords at 11:03 PM on September 17, 2012 [57 favorites]


The psychiatrist didn't disclose anything except a suspicion that Steph might be lying, and did so while acquiring knowledge vital for treating an immediate crisis. I doubt she'd have trouble with a review board.
posted by Tell Me No Lies at 11:04 PM on September 17, 2012 [5 favorites]


This has libel suit written all over it.

It's not libel if it's true.
posted by mochapickle at 11:06 PM on September 17, 2012 [7 favorites]


grootless: "It's a violation of HIPAA for the psychiatrist to talk with the author and girlfriend about Stephanie unless Stephanie has signed a release. Also, the author/friend should not have been able to find out any information about Stephanie from UCSF at all, including whether she was ever a patient there"

Doesn't HIPAA cover patients' information? Is it a violation of HIPAA if the person is actually not a patient?
posted by Joakim Ziegler at 11:07 PM on September 17, 2012 [18 favorites]


Also, the way I read it the psychiatrist had been assigned to Steph by the psych ward two days before the conversation took place.
posted by Tell Me No Lies at 11:07 PM on September 17, 2012


This fits almost exactly one of my wacky relatives, who has been dying of cancer (as an outpatient) for 15+ years of miraculous cures and deathbed Disneyland trips.

They unfortunately have subjected their kids to these fantasies. There really is no lower bound to the depths of human behavior.
posted by benzenedream at 11:10 PM on September 17, 2012


All I can say is: What the fuck? I cannot imagine how this must have felt for Diane. It was almost as if a good friend was de-legitimizing her cancer.

That said: Remember to shave the eyebrows too, folks.

I did not lose my eyebrows during the whole of my chemo. Nor did I lose my eyelashes. All other hair on my body started to fall out surprisingly quickly into my first cycle. I think this really depends on the individual.
posted by chemoboy at 11:15 PM on September 17, 2012


There really is no lower bound to the depths of human behavior.

If it were done for money I would agree with that, but cases like this draw a lot of sympathy from me. This is an unhealthy person doing unhealthy things. I'd rather give her help than disdain.
posted by Tell Me No Lies at 11:19 PM on September 17, 2012 [10 favorites]


The degree of hair loss and nausea in chemotherapy both depend a great deal on the specific drugs administered and the treatment protocol. I don't want people to start thinking that anyone with a shaved head and functional eyebrows is a faker.
posted by idlewords at 11:24 PM on September 17, 2012 [9 favorites]


I am a cancer survivor. I had an autologus stem cell transplant, and I had a centerline catheter hung from an anchor point just under my collarbone, and inserted into the aorta a few inches above my heart. The catheter had two ports--one for puting stuff in, and the other for taking stuff out.

I prepped for the SCTP for six months--21-day cycles of wierdness, living on a PICC line, eating drugs that made me goofy and weak, and nauseated me, and carrying a bag around for three-day stints that dripped poison into my heart--then I went to Seattle, where another month of preparations got me ready for the killing of my bone marrow, and the infusion that would either kick start my red blood-cell production, or kill me. While I waited for all the numbers to hit their marks, I spend a couple hours every morning in the infusion room with half a dozen other cancer patients of several flavors, and we took our infusions from the catheters, the little TV above the window playing with the volume turned low, but the news banners were crawling yellow horror: watching the hurricane and tidal wave on television as it wiped out thousands upon thousands of souls along the east shores of Asia and its associated islands. Men and women in rain gear, holding microphones, trying to appear as though they aren't stunned.

I say a half dozen, because that's how many were in there at any given time, max. They were my age, in the mid-fifties, and a couple of soldiers in their 30s, and a kid in his teens. By the time you get to this place you already have no hair, and your attitude is marginal, but it's a lot better than the poor family members, your designated caregivers, who came with you. The staff is great. They take care of the families with heroic attention to detail. But this is about me. Not them.

One morning my numbers went gold, so we drove down to the appropriate place near the waterfront, where I lay down and plugged in, and gave three pints of my blood to the spinning filters, and they extracted my stem cells from them and gave me back the plasma and some saline. Out one port, in the other. My wife sat next to my table while I slept, then drove me back when I awoke.

Two days later the kind man in charge of the ward came to my room for a chat. He always looked us in the eye. We were not numbers to him. He asked me if I was ready and I said yes. The tech brought in the bag of poison, and plugged me in. I slipped through the looking glass for a couple of weeks. Just like in the article. I came back, but not all in one piece. I mean, not all the pieces came back at once. That took a couple of weeks. One night one of the nurses came into the room and said that she and the others would be busy, sitting with Larry, in the next room. She said that to me, because I wouldn't see anyone at the desk if I felt like looking out the glass window, and she wanted me to know they'd be there for me if I hit the button by the bed. I didn't know what she meant, and couldn't figure it out because, like I said, I had not got all my pieces back onto this side of the mirror.

A month later I went home. I had been in Seattle for the transplant for three months. I had several adventures that I shall not try to describe here. Of the eight guys on my ward who struggled through those months, four died. I lived.

I am the Multiple Myeloma poster boy for 2004. I should not even be alive today, but here I am on the long end of a miserable survival curve, still in complete remission.

Which could change any day.

Let the Münchausens be me if they like. It's okay. When my remission fails, you can go with me back to Seattle, and I'll stick the catheter in your chest myself.
posted by mule98J at 11:25 PM on September 17, 2012 [84 favorites]


Cancer is a lifestyle. Don't see how this strange young woman is harming anybody by adopting such a lifestyle. Why not let her run with it if it makes her happy? And there could be some commercial opportunities here. The author is milking this for blog hits but I'm thinking book and/or Lifetime movie. Who knows, maybe a venture could offer "cancer vacations"? Those could be fun. Probably more interesting than traipsing around with a bunch of electronics.
posted by nixerman at 11:42 PM on September 17, 2012 [1 favorite]


Don't see how this strange young woman is harming anybody by adopting such a lifestyle

Other than her friends and family, you mean?
posted by Tell Me No Lies at 11:48 PM on September 17, 2012 [5 favorites]


Don't see how this strange young woman is harming anybody

At the very least, the words "emotional vampire" come to mind.
posted by mrbill at 11:51 PM on September 17, 2012 [9 favorites]


Cancer vacations. Yes. Sign me up. It'll be a barrel of laughs.

Ah crap, I said I wasn't going to do that. I'm going to bed.
posted by mule98J at 12:00 AM on September 18, 2012


What kind of a sick fuck poses for pictures.

Play her off, keyboard cat.
posted by phaedon at 12:19 AM on September 18, 2012


Don't see how this strange young woman is harming anybody by adopting such a lifestyle

I imagine you're being facetious but reality check: for every fake patient, malingerer, drug seeker or Munchausens you're seeing real hospital resources in time, money and care that are syphoned away from people with medical problems that could be fixed.

There are real psychiatric issues but the reality is they are directly harming other people by abusing inappropriate medical facilities.
posted by Silentgoldfish at 12:40 AM on September 18, 2012 [11 favorites]


At the very least, the words "emotional vampire" come to mind.

But, still, I can't see anything but unhappiness in that young woman's future. It's a very sad story.
posted by fredludd at 12:43 AM on September 18, 2012 [2 favorites]


This is a very, very sick woman. And while I think every sick person deserves help, life experience tells me to get as far away from her as possible, period. No good can come from that person until they are well.
posted by njloof at 12:44 AM on September 18, 2012 [3 favorites]


I honestly forgot about the idea that this story was going to have a twist in it for a long while. By focusing a large amount of the beautifully crafted text on Diane, it was easy to get lost in the story. And I was. Right up until
"How certain are you that Steph has cancer?"
The story could have actually ended there. There's not many sentence that can pack that sort of spin where you just immediately get what the rest of the story is going to be. But you continue on, because you don't really want to believe it.
Kudos to the excellent writing, and kudos to Diane for making it this far.
posted by WeX Majors at 1:05 AM on September 18, 2012 [8 favorites]


mule98j thank you for sharing your experience, that was very powerful.
posted by smoke at 1:23 AM on September 18, 2012 [2 favorites]


Lots of good vibes for Diane's continued good health, and I also hope that Stephanie gets the help she needs to get better too. She must have an incredibly sad life to feel she needs to build up such elaborate stories, I feel quite sorry for her.
posted by Hazelsmrf at 1:25 AM on September 18, 2012 [1 favorite]


I'm "glad" that I guessed the twist of this story early on because I'm not sure the gut punch, even in prose form happening to others, is something I could deal with. Even separate of this important-to-tell story, there are a lot of details about illness and our reaction to it, that hit the right notes beautifully, particularly this line:

…adapting to the ‘new normal’ (otherwise known as the ‘old shitty’

My thoughts and wishes to you and Diane; I'm so sorry she had to deal with this nightmare on top of her other agony.
posted by MCMikeNamara at 2:06 AM on September 18, 2012 [3 favorites]


While the fake-nurse photos on her Facebook page were probably done to make the story more convincing, it's interesting that's what she chose to fake - herself disguised as a nurse, cradling her own umbilical cord blood in her arms like a baby. I wonder what that says about what was really going on in her head?
posted by Catseye at 3:19 AM on September 18, 2012 [3 favorites]


(well, not her own in the sense of being from her actual umbilical cord, although that would also be an interesting turn on events...)
posted by Catseye at 3:42 AM on September 18, 2012


When I was a young adult, my mother announced to the entire family that she had terminal cancer and that she would be dead within a year. It was in the latter half of the year, and our Christmas was sparse (we were in bad financial straits) and joyless as we contemplated that this was my mother's last Christmas.

That was over twenty years ago. She didn't have cancer. She has a debilitating mental illness that compels her to go to ridiculous lengths to get love and attention from others.

It ruined our relationship. I know that she's ill and that she's not completely responsible for her actions. That being said, the sorrowful pallor of that winter and the pain of learning the truth is more than I am able to look past, to my eternal shame.
posted by DWRoelands at 5:08 AM on September 18, 2012 [15 favorites]


I hope that this Stephanie person gets the help that she appears to need. If she is actually doing the things that the article appears to accuse her of, her life must be a lonely place.
posted by DWRoelands at 5:09 AM on September 18, 2012


Pulp had it right in "Common People". " Cos everybody hates a tourist."
posted by inturnaround at 6:01 AM on September 18, 2012 [5 favorites]


Maciej is such a great writer. I love that he carefully, but so plausibly, misleads us through compassion for this patient before shocking us, as he was shocked, with the big reveal. Masterful framing of a difficult topic. I'm also glad he allowed himself enough time to approach her real illness compassionately, if understandably bitter.

He's a gripping read whether he's writing about his latest server configuration for Pinboard (yep, same guy) or, like this, a more personal story.
posted by gilrain at 6:17 AM on September 18, 2012 [5 favorites]


Maciej is such a great writer. I love that he carefully, but so plausibly, misleads us through compassion for this patient before shocking us....

When you're writing non-fiction in the first person I'm not sure that "carefully and plausibly" are the right terms for taking the reader on the ride you've just been on. On the other hand, if you're writing about the big pile of crazy you just naively put your hand in during what otherwise might be the most trying time in your life, I'm impressed when you don't start out with an extensive stream of obscenities.
posted by Kid Charlemagne at 6:34 AM on September 18, 2012 [1 favorite]


Doesn't HIPAA cover patients' information? Is it a violation of HIPAA if the person is actually not a patient?
That would be a nice loophole if it wasn't a violation.

"Was this person a patient at your hospital?"

"No."

"Was that person?"

"No."

"How about this person?"

"I can't say."

Preventing such exploits while still not lying is also why I try to resist the temptation to answer excessively personal questions even when giving the true answer would be advantageous.
posted by roystgnr at 6:43 AM on September 18, 2012 [4 favorites]


"Don't see how this strange young woman is harming anybody by adopting such a lifestyle."

With my roommate with the fake Lyme disease, she definitely was sucking up time and money that could have been spent on patients who were actually sick. She was also taking a lot of professors' time and patience from students who were actually in need, going to them constantly for compassionate extensions, etc.

But the biggest harm she did to others was the way she used her friends for sympathy and support, who then found out it was all a lie, and many got very angry. A lot of people had gone out of their way to do her favors, some time, some monetary, and people felt duped. She lost most of her friends and all of their trust. By the time it all fell apart, my roommate and I felt angry, but unsurprised. I spent whole nights sitting up with her while she cried because she was in so much pain ... nights when I had schoolwork and needed sleep. There were other things, but that stands out in my mind. She had been a third roommate that my (normal) roommate and I, who lived together several years, added to lower our rent (we had a third, very small bedroom where we lived), and we decided when her lease came up that we did not want to remain roommates with her (just a couple months after it all came out) and, in fact, we didn't want to have a third roommate at all, because going through all that loss of trust was really hard and we were constantly thinking things like, "If she's the kind of crazy person who lies, is she the kind of crazy person who steals? Should we trust the strangers she brings over? Can we believe that she paid her rent?"

The greatest harm she did, however, was to herself. She needed a lot of psychiatric help for the abuse she survived as a child. She was cut off from her family, for rather obvious reasons. She ended up losing virtually all of her friends, and she was actually really lucky because people were very compassionate about it and understood that she needed help. Nobody was a jerk, but nobody was her "friend" anymore after that. She lost her profession, because she was not able to pass the psychological qualification for ministry. She had to take a leave of absence from school, because she wasn't able to continue without being approved for ministry. She lost her roommates and housing and had to move. She lost her health care access, because it was tied to being a student.

Here was someone hurting so, so badly that faking a really serious case of Lyme disease to get attention and help seemed like the only desperate way she could do that, and instead it cut her off from her entire support system and threw her life into utter dislocation.

The last time I saw her, about a year after she got denied for ministry and moved out, she was dating a divorced guy with a six-year-old who thought she walked on water, and they were planning to get married. Nothing with her, as far as I could tell, had changed, except what lies she was telling. Whenever I think about her, I wonder what happened to that poor kid.
posted by Eyebrows McGee at 6:59 AM on September 18, 2012 [7 favorites]


I don't see how publishing photos of this woman is going to help her, or anyone else for that matter. It's an interesting story, but publicly calling her out seems cheap and unnecessary. What is his motive?
posted by Brocktoon at 6:59 AM on September 18, 2012 [3 favorites]


I don't see how publishing photos of this woman is going to help her, or anyone else for that matter. It's an interesting story, but publicly calling her out seems cheap and unnecessary. What is his motive?

Stephanie wasn't lying to these two people in exclusion. I imagine the motive was to inform Stephanie's other friends that, "Stephanie has a mental disorder which results in her lying about having physical health problems."
posted by muddgirl at 7:02 AM on September 18, 2012


Wasn't there a similar drama that played out on the blue (and green and grey) a few years ago?
posted by Librarygeek at 7:10 AM on September 18, 2012


I sincerely doubt that is his motive.
posted by Brocktoon at 7:26 AM on September 18, 2012


Why? That is in fact exactly Maciej's stated motive:

"And so I've sat on this story for a while, for fear of writing it out of anger. But everything I've learned about people who fake serious illness makes me skeptical that the world has heard the last from Steph. And I know there are still people in her life who are genuinely sick, and who don't know that her medical drama this year was a fabrication."
posted by McCoy Pauley at 7:52 AM on September 18, 2012 [1 favorite]


Even if everything in this post is true, and this young woman really is running a horrible cancer scam for god-knows-what-reason, this guy has still provided us with her full name, made accusations about her physical and mental health that he himself acknowledges are tentative at best, and has given detailed descriptions of her medical history that he cannot possibly have acquired through ethical means. I mean, it sucks that people are manipulative dicks, but this guy has painted an enormous target on his back and arguably looks like a bigger asshole than she does.
posted by Mayor West at 7:52 AM on September 18, 2012 [3 favorites]


I sincerely doubt that is his motive.
I don't know what leads you to believe that. I mean, did you read this:

"And so I've sat on this story for a while, for fear of writing it out of anger. But everything I've learned about people who fake serious illness makes me skeptical that the world has heard the last from Steph. And I know there are still people in her life who are genuinely sick, and who don't know that her medical drama this year was a fabrication."
That has all the appearance of being sincere to me, what makes you think otherwise?

On another note, as a child I had AML and I distinctly remember the bone marrow biopsies not being as bad as described. I actually preferred to have no numbing medicine since the medicine they used made me dizzy!

Maciej is such a great writer. I love that he carefully, but so plausibly, misleads us through compassion for this patient before shocking us....
Seconding this, I loved this story.
posted by kiskar at 7:54 AM on September 18, 2012


and has given detailed descriptions of her medical history that he cannot possibly have acquired through ethical means

None of the information shared couldn't have come from Stephanie's mother.
posted by muddgirl at 7:59 AM on September 18, 2012 [1 favorite]


I think to lose the photos would detract from the story. It's almost unbelievable that Stephanie could pull this off without a certain kind of self-presentation. In the pictures, she looks a bit too healthy but there is a lot of conviction in the way she poses with Diane. You can see the kind of relationship they had formed.

I do think this hurts a lot of people, especially people who really have cancer that someone like Stephanie comes in touch with. It's pretty clear that this hurt Diane. When you're sick you look at the other people around you and it can scare you or encourage you or I am sure a lot of other things. When someone turns out to have been phony-- ugh, that's awful. Anyone who becomes friends with her has made a big investment on the basis of a lie, at a time when they are vulnerable and time is at a premium.

(Looking too healthy: that's if you know. There seems to be a lot of emphasis on the way people look with cancer. One of my family members who had very serious cancer looked pretty normal most of the time, but at some point when someone said, "You look good," he said, "Who the fuck cares how I look?" It's something people say a lot, and maybe it makes sense because it's surprising that you can look that good with a serious illness, but it's a strange thing to focus on.)
posted by BibiRose at 8:00 AM on September 18, 2012


That's a pretty strong accusation, Mayor West. Do you have any evidence to support the claim that I behaved unethically, dear stranger on the internet?
posted by idlewords at 8:09 AM on September 18, 2012 [12 favorites]


Since I am far away from this story, I can -- and do -- feel sorry for Stephanie. Sorrier, in a way, than I do for Maciej and Diane (less sorry in other ways). It's terrible to be lied to by a friend like that. Disheartening. Trust destroying. But I just imagine living like that -- like when I was 8 or 13 or 16 and thought "well, what if I had tuberculosis [I read older books], everyone would feel bad and sorry for me now", except to act like that as an adult(ish), to be unable to grow past that stage?

Without knowing whatever really is wrong with Stephanie, and assuming that it is an actual mental illness: this is part of the problem with how we speak about and envision mental illnesses (not the post, in particular). We act as if people who are mentally ill are making choices the same way people who aren't are. I don't get mad at my cousin if he has a seizure in front of me. I know the post brought this up, at the end, briefly. But I have a family member who is some kind of neurologically atypical, and who is in response to this verbally abusive, and it's a line I have to figure out all the time. How much can I blame her for her actions? What if she is trying to get help? What if she isn't? How am I supposed to respond to her, how much do I take from her, how much can I cut her out of my life?

They're not easy questions to answer for all sorts of reasons, and I have had many answers over the past 15 years, since things fell apart for her. It would be easier if she were just a friend who I could cut out of my life.
posted by jeather at 8:16 AM on September 18, 2012 [6 favorites]


I choose to live my life believing that the people I interact with are telling me the truth. I try to be pretty honest in my own dealings with the world (I'm too dumb to try remembering which lies I've told to whom) so by extension I tend to believe other people are doing the same. It just makes me happier to not suspect people could be lying to me. When I find out I've been deceived over something important, I become pretty enraged.

So I can't imagine what it's like to be deceived on the level described in the linked post. The level of anger I'd experience would be a dangerous thing. In effect I suppose I am choosing to concentrate the UnSlack (pain/annoyance/whatever) I'd experience by suspecting people all the time, into the rage of being deceived. Which is the healthier choice? To constantly take everything you hear with a grain of salt? Or assume people are honest until you discover otherwise, with a greater feeling of betrayal?
posted by waraw at 8:40 AM on September 18, 2012


At least a few people appear not to have noticed that the author of the piece is right here commenting in the thread...
posted by ook at 8:46 AM on September 18, 2012 [4 favorites]


Wasn't there a similar drama that played out on the blue (and green and grey) a few years ago?

The Kaycee Nicole saga
posted by TheCuriousOrange at 8:58 AM on September 18, 2012 [5 favorites]


Yep, that is the one TheCuriousOrange. Another sad affair.
I agree with those that we ought to have compassion for the mental illness behind this. However, we also need to acknowledge the emotional blow these lies cause those who have been unwitting accomplices.
posted by Librarygeek at 9:10 AM on September 18, 2012


"I have wondered to what extent Steph (and people like her) are broken, and to what extent they're just bad. That is one of the questions of mental illness — at what point does being crazy excuse you for being an asshole?"

This is something I've been trying to figure out recently.
posted by needs more cowbell at 9:44 AM on September 18, 2012 [1 favorite]


In the case of the narrator in Fight Club who is obviously exploiting people's pain to satisfy their curiosity or alleviate their boredom or even was getting his full blown schaedenfreude on there remains a question (for me).

The original doctor who prescribed a visit to the testicular cancer support group as a sort of shock treatment to the guy to prove he wasn't at all bad off--was that dumb, was that malpractically dumb, or was that downright unethical? We can assume he didn't think the narrator was so perverse that he would acquire a habit of doing this, that once would be enough since it was like a sledgehammer to the head sure thing treatment. So I think the argument could be made he was just dumb. But in real life how much trouble could a registered medical professional get for doing that?
posted by bukvich at 9:46 AM on September 18, 2012


I mean, it sucks that people are manipulative dicks, but this guy has painted an enormous target on his back and arguably looks like a bigger asshole than she does.

I can't even begin to really formulate that argument.
posted by josher71 at 9:49 AM on September 18, 2012 [3 favorites]


Well, that was certainly surprising.
posted by chunking express at 10:14 AM on September 18, 2012


As I understand it, HIPAA does allow you to confirm someone is a patient. From here:
The provider may then disclose the individual’s condition and location in the facility to anyone asking for the individual by name, and also may disclose religious affiliation to clergy.
Such things require 'informal permission', whatever that is. In practice, I think that means not opting out. Similarly, you can phone a hospital and enquire as to how a patient is doing. In my most recent experience, this required a password, but that password wasn't chosen by the patient, but by someone with no formal relationship to the patient.

Much like FERPA, HIPAA's not the no one can tell anyone anything law that people seem to think it is. (Want to hear something ridiculous? My university understands FERPA to mean you can't hand back homework by having students takes theirs out of a stack, but publishes every student's home address and phone number on the internet unless they opt out because 'directory information' isn't covered by FERPA.)
posted by hoyland at 10:14 AM on September 18, 2012 [3 favorites]


Want to hear something ridiculous? My university understands FERPA to mean you can't hand back homework by having students takes theirs out of a stack, but publishes every student's home address and phone number on the internet unless they opt out because 'directory information' isn't covered by FERPA.

That doesn't seem even a little bit ridiculous to me—my address and phone number, like almost everyone's, are easily discoverable though various public directories, but people disclose very personal things in their writing for university classes that are not at all discoverable.
posted by enn at 10:58 AM on September 18, 2012 [1 favorite]


Wow, what a well-written piece.

In the course of a relatively brief medical career, I've run across a number of people who clearly have factitious disorders of one sort or another, ranging from outright fakery to more complex cases where the borderline between factitious disorder and outright delusion gets blurry.

The US's current very fragmented medical care system makes it very difficult to figure out what's going on quickly, because patients often go from institution to institution and get extensive but partial workups at each place, and even if they tell you where they've been in the past, the records arrive days or weeks later. For a patient in the hospital, that's like eternity--they frequently just get all the tests again. It can be hard to identify these patients because for every patient with a factitious disorder, there are fifty genuine patients who are just disorganized, or don't have the money to get their records copied, or got taken to a different hospital's ED when they called the ambulance and then had a bunch of tests run and then come back to their regular doctor for follow-up. And long waits for specialists mean that even people with genuine problems frequently miss their specialty visits. So it can be very, very hard to figure out who is deliberately being evasive.

As with these patients' lay friends, clinical personnel often react toward the discovery that an illness is partly or wholly factitious with feelings of betrayal and rage. It can be very hard to remember that these folks are displaying symptoms of serious mental illness. And for those of us who are in primary care who continue to see these patients, there is an additional component of worry that you might be missing a real illness or that you might cause harm with some future unnecessary test.
posted by The Elusive Architeuthis at 11:55 AM on September 18, 2012 [6 favorites]


Someone that has no compunction about using any means necessary to satisfy their emotional needs is not just a poor victim. While it may be true that they are mentally ill and only partially culpable for their actions, this does not mean that harm minimization shouldn't be performed to protect everyone else from their behavior. An email announcement might be more appropriate than a blog post which will last forever, granted.

If she was a compulsive gambler who scammed money to pay for her habit, would you consider a story exposing her to be immoral? Would it be ok if it was completely anonymized?
posted by benzenedream at 1:40 PM on September 18, 2012


pain of learning the truth is more than I am able to look past, to my eternal shame.

If your leg was scarred that badly there would be no shame in not being able to run a marathon.
posted by Tell Me No Lies at 1:45 PM on September 18, 2012 [4 favorites]


Mule98J: Powerful story. Be well.

Granted that she is mentally ill. Granted that some of the psychological pain she has may cause her some actual physical pain. (It happens.) And yet, I think there is an element of knowing what she is about that comes with adulthood, and that her behavior smacks of abuse toward someone who befriended her.

This story makes me angry, sad, disgusted, and confused. I'm glad it was written.
posted by BlueHorse at 1:51 PM on September 18, 2012 [3 favorites]


And so I've sat on this story for a while, for fear of writing it out of anger.

The tone is cool, dispassionate, ironic, but there is suppressed anger boiling underneath. How could there not be? In such a situation, how could any normal person not feel angry? The question is why Maciej feels the need to suppress his entirely reasonable feelings of anger.

One reading of the story is that Stephanie is unconsciously trying to protect Diane. By masquerading as a cancer patient, she deflects onto herself the pity and disgust that would otherwise be directed at Diane. By allowing herself to be unmasked (and such an elaborate deception is surely crying out to be unmasked: how else can its ingenuity be appreciated?), she deflects onto herself the anger and rage provoked by Diane's illness. By inviting Maciej to take out his anger on her, she invites him to co-operate with her in protecting Diane. Rightly, he resists.

And yet the end of the story feels predestined. The sick body is purified once the pharmakos has been expelled (or, as in Le Fanu's Carmilla, the patient recovers once the vampire has been destroyed); order is restored. Stephanie plays the part of the scapegoat so well that it is clear this is the role she has wanted for herself all along. By becoming the scapegoat she has 'saved' Diane.
posted by verstegan at 4:31 PM on September 18, 2012


Stephanie's psychiatrist only released her if she had somewhere to go. That was to stay with Diane. Of course the Dr. answered questions when Diane called back. As for finding out about no transplant, do you not think the psychiatrist has access to her medical records which have no mention of multiple admissions for cancer treatment? If you have released a psych patient to a non relative you owe them information they need to properly care for the patient and/or to protect themselves. HIPPA is a good law that is sometimes used for bad purposes...
posted by whatever at 4:42 PM on September 18, 2012 [3 favorites]


I've been through this although I was healthy myself at the time. A new colleague arrived just as my boss went off on a 6 week jaunt. Taking me aside she confided that the woman had breast cancer and asked if I would look out for her. What followed became a nightmare. This woman hacked my life. I had a husband, two children, worked full time and was studying. Having coffee and lunch with her I could do but slowly, and cleverly, she drew me into other situations. Seems I was the only one she could confide in - only I understood her. She invited me to her home, bought me small gifts and I did the same - heavily scented shower gel because she'd lost her sense of smell, lemon face wipes for when she got hot during the chemo, books she might like to have pass the long weary hours in a chemo chair.
This went on for months. A friend's Mum hinted that all might not be as it seemed. In my niavity I dismissed this, finding it impossible to believe someone could understand and spout the jargon, could go as far as to ask me to look down her blouse to see if anyone could tell she was wearing prosthesis and would speak so often about her pain and misery - there was no way this was anything but true.
. She phoned me every night and at weekends. She never asked if I was free to talk and, stupidly, unless I had plans, I took her calls.

After 6 months I was worn out and getting to the stage where I really just wanted her to get on with it. And I know how harsh that sounds. I even took a day off work to go to the Cancer Centre with her but when I got to her house she was in bed and 'too Ill to go'. It ended strangely. One Saturday night, at home with my family and during a call from her she suddenly said that she thought I was just like her, a lesbian. I gently replaced the receiver. And I never saw her again.
So how did I feel when I knew it was over? A great relief and a good deal of fury. In hindsight I could see the hooks she used to keep me near her and all the manipulative tricks I had fallen for.

How much worse for Diane? And for Macie. I know what chemo and radiotherapy can do to a person, physically and emotionally and how hard it can be for loved ones trying to supply support when they are also trapped in the horror of the diagnoses. A huge double whammy was the last thing they needed.
I agree there must be at least some faulty wiring when a person behaves like this but when you are on the receiving end it takes a while to come to that conclusion.


I did hear of my lying swan some ten years later. She had indeed died and was apparently highly religious. So much so that she had become a good friend of our City's Archbishop.
Her glass coach was drawn by four black horses and her funeral service took place in the Catherdral. I trust she made a good early confession.
posted by mandarin fish at 5:44 PM on September 18, 2012 [4 favorites]


Patient privacy essential. In practice, HIPAA is a paperwork headache and a care coordination nightmare at times.

@hoyland: What the statute may allow and how hospital and agency administrators interpret the statute differ in practice.
posted by grootless at 5:51 PM on September 18, 2012


People can be exceedingly strange.
posted by stavrosthewonderchicken at 6:11 PM on September 18, 2012 [2 favorites]


Cancer is a crucible that tests every relationship you have. One of its first lessons is that having your relationships tested sucks. At 33, Diane found herself in the role of patient zero for many of her friends, their first time confronting real illness. Some of them disappeared. Others wrapped themselves so tightly in platitudes that they might as well have not been there. Still others accepted the news, but did not seem to internalize it, talking and behaving as if nothing out of the ordinary had happened, as if the best way to deal with the cancer was to ignore it. And a few sterling people came through, offering comfort, giving rides, showing up, and finding creative ways to help.

This hit me so fucking hard. Substitute "cancer" for values of anything that might kill you because he's telling the truth across every axis.

I don't pepper our FB page and Twitter stream with pictures of myself suffering or little exhortations reminding everyone what a champ I am but I am sick, and have been for a while. It's not cancer. Maybe this month, we'll figure out what the fuck it is. The tests suggest exposure to a virus that, before fucking off, enacted some nasty damage to those functions you never think about because they're meant to be automatic. Blood doesn't flow fast enough to my brain, so when I stand I get lightheaded and sometimes pass out. My body gets covered in drenching sweats that have no relation to the ambient temperature or amount of effort I'm exerting. Insert solid food into my mouth and 10 minutes later, give or take, it's Chundertown, pop me. (Sometimes with an exciting side trip to Scatland, and I'm not talking about where the kilts get made.) I'm in the US, so the typical complications of insurance and brokeness fully apply.

Being this sick, and in this vulnerable-making and embarrassing way, means I flee. Casual acquaintances may know I'm struggling but not how much, and closer friends know but they get a big picture without much flesh in it. Because I know. I know people fail at dealing with this, because I have failed myself. There are so many ways to fail. There's policy and professional before we ever get to the personal. There's country and community and culture and yes, I am doing this by alphabet because you have to be systemic if you're going to try to catalog this much failure. I look at all this failure and wring my hands and wish I'd been a better person, sooner, to everyone and wish I'd done more while I could to try to fix it.

Considering the personal for too long hurts too much. It hurts too much when connection fails, when empathy dies, when people ask for what you need and then never come through. It hurts too much when I am alone and contemplating the giant silence where work and friends and life used to be, and my own cynicism. Those rare few do come through, and they are spectacular, and I love them with a powerful love. But mostly, people don't know what to do. You can spell it out for them in very small words and they still can't do it. They run because they don't know what else to do, and because they can.

The thought of someone feeling so empty and unloved that being sick seems like the solution to get what they need fills me with a horror I can't describe. It's drinking saltwater and piss to stay alive, emotionally speaking. The attention you receive from doctors when something is actually wrong with you but it's hard to figure out is a frustrated, painful attention. It may be attentive and even kindly meant, but it's tortuous. It never ends. It's scrip after scrip, machine after machine, invasion after invasion from gloved and impersonal hands. What pain drives people to this desert? Because the longer you live here, the more you are aware of its isolation from the rest of the living world, and the less likely it becomes you can ever find a way back.

Nausea is my default state but I am not nauseated at fakers who fake disease for love, and it's not because I've got a big heart. My heart, when not saturated in affection for those rare and sterling few who can stay the course, is overtaxed and angry as all hell (in case that wasn't clear). I don't know what I feel for these people. It's not scorn. It's not much useful. It's overwhelming pity that anyone could be so hungry and poor that they'd attempt to make their home here. This is no place to live. It's not meant to be one.

What's worse, though, is the thought of being accompanied to these ridiculous appointments or otherwise partnered with someone watching this -- watching this thing eat my life from the inside out -- and persisting with the delusion. How? How? Maciej, I feel for your wife, for all the physical and emotional pain she's been through, now worsened by that betrayal of her friendship and trust. I feel for you, the one standing by her and trying to protect her from so much invisible, insidious threat. This person needs help, but also she needs to be stopped from hurting other people. You defended your wife. I have watched my husband do much the same for me and it takes a toll that few can perceive, much less acknowledge. Thank you for being strong and real and there when she most needs you to be. You did what was both unpleasant and necessary, and it is merely one of an uncountable number of such tasks. That is the daily bread you get to eat as the partner of someone who is sick, but might not ever get better. It's thin and exceedingly bitter, but at least it's unmistakably real.
posted by melissa may at 12:15 PM on September 19, 2012 [13 favorites]


From the article: "That is one of the questions of mental illness — at what point does being crazy excuse you for being an asshole?"

So very, very true.
posted by noway at 6:42 PM on September 22, 2012


Man how did I miss this. Idlewords I hope you stick around, your blog is fantastic, please note the range of responses in here, from long thoughtful personal stories to expert opinions, that hopefully counteract the kneejerk criticisms somehow questioning your morals in posting the story at all, which is, I don't even.

Anyway. Yikes!
posted by Potomac Avenue at 9:14 AM on September 25, 2012 [2 favorites]


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