As a child I was often sick. I also faked being sick, worried about getting sick, and sometimes actually tried to make myself sick. (Nights before math tests often found me in the bathroom with my feet in a sink full of ice water.) The result of all this focus on illness is that, even now, I have trouble distinguishing serious health problems from the imagined.
My ex-boyfriend’s mom — for the sake of consistency, I’ll keep calling her Mindy — was, like me, a sick hypochondriac. She had a hysterectomy at 25, her teeth out at 43, and during the four years I knew her was in and out of the ER every couple of months.
Among other things, she insisted that she and my boyfriend were hemophiliacs afflicted with von Willebrand’s disease. Now, this is not impossible, but when the ex- offered it as medical history to a doctor while at the ER in Gainesville one night, the guy, while dutifully making a note on the chart, said, “Um, no offense, but if your mom was a hemophiliac, I probably would have read about her in a medical journal.” While I always adored Mindy, in the years after the break-up I’ve wondered if she — and even the childhood me — had a touch of the Munchausen, a fake-sickness disorder.
Below, Janice Erlbaum and Darin Strauss, two very smart writers, discuss their recent books, Have You Found Her and More Than It Hurts You, which explore Munchausen and Munchausen by Proxy. Erlbaum, who’s featured in the embedded video below, starts things off. (If you’re interested in reading the books, see giveaway details at the end of this post.)
When I heard last spring that Darin Strauss was coming out with a novel about Munchausen by Proxy, a syndrome whereby caregivers cause or feign illness in their charges in order to get attention for themselves, I didnâ€™t know whether to be threatened or overjoyed. Iâ€™d just published a memoir about my own experience with a girl who had what I call Munchausen’s Original Recipe, a girl who’d caused herself life-threatening illness in a plea for attention — would Darin’s book overshadow mine? Or would it help spread the word about these little known and oft misunderstood syndromes?
Upon reading Darinâ€™s new book, More Than It Hurts You, I found myself experiencing a number of emotions — awe at his deft writing and emotional sensitivity, horror at the events he recounts, and appreciation for the consciousness-raising his book is sure to cause. The book is a gift to any reader who enjoys page-turning plots and finely-tuned characterizations; itâ€™s also a gift to those of us who are determined to raise awareness about Munchausen and Munchausen by Proxy. Here are some highlights of a chat that Darin and I — the Munch Bunch — had this week.
JE: What made you decide to write about Munchausen by Proxy?
DS: I thought it was really interesting for a few reasons. Obviously itâ€™s a page turning device, the child in jeopardy, but I also think the disease says a lot about our culture, that some of us are so attention starved that weâ€™ll hurt our kids. Itâ€™s a very modern American disease — it doesnâ€™t happen in places like sub-Saharan Africa. MBP was originally diagnosed in the seventies, by a British doctor named Roy Meadow, who identified it and gave it a name; he came up with the idea that â€œone sudden infant death is a tragedy, two is suspicious, and three is murder.â€ This idea, Meadowâ€™s Law, probably put a lot of women who might not have been guilty behind bars; later in his career, he was chastised in the medical community for being too zealous in his accusations. But I think itâ€™s no coincidence that this only seems to happen in the UK and the US. It could be that doctors in other places just donâ€™t know about MBP, or maybe itâ€™s because there isnâ€™t the same kind of tabloid reality TV culture that encourages people to act out that way.
What made you want to write about Munchausenâ€™s?
JE: Well, “it happened to me,” in that I met a girl at the homeless shelter where I was volunteering — the same shelter where I used to live as a teenager — and she was this brilliant nineteen-year-old junkie whoâ€™d been on the streets since she was twelve — horrible life story, etc. So I got way overinvolved in her life, caring for her as she went to rehab and halfway houses and hospitals and like that. So she was in the hospital for two months with what looked like AIDS, and of course, after a year of following her around, on the verge of becoming her legal guardian, I discover that she didnâ€™t have AIDS, she had Munchausen’s — she’d been lying about her past and making herself sick for the attention. So I knew I had to write about the experience.
How did you originally hear about the syndrome? Had you been aware of it for a while, or was this something you recently discovered and decided to write about?
DS: I wasnâ€™t aware of it, but I have a friend whoâ€™s a doctor, who has another friend who specializes in MBP, and he had a case where the mother was poisoning her baby. And he had evidence, and was trying to get the baby removed from the household, but the family went to the press and called the doctor a zealot who overdiagnosed the syndrome. Since doctors are not allowed to talk to the press about their cases because of privacy issues, all he could say was “no comment.” So he was discredited by all the bad press the family caused, and the family got to keep the baby.
But also, as you said, in a way “it happened to me,” too. As I started writing the book, I realized that I could relate to the syndrome — I’m a bit of a hypochondriac, and I always let my wife know when I’m not feeling well to get her to pay attention to me, stuff like that. And as the child of a Jewish mother, you realize, there are degrees of Munchausenâ€™s. Some of it is as serious as poisoning your kid, but thereâ€™s a much more benign version, where they exaggerate the truth — my mother might tell my dad, “Darin’s really sick,” when I wasnâ€™t that sick.
So I related, which was helpful, because the first draft of the book was horrible. The wife (the character with MBP) was a monster. And a novel becomes a genre book, if the villains are only villains and the heroes are all good; I wanted it to be more than that. So I had to go back and try to understand how she was thinking, which led me to confront some of the Munchausenâ€™s tendencies in myself.
JE: Yeah, I had to confront those, too. I mean, Muchausen’s is more than just saying, â€œ(Cough cough) Oh, sorry I couldnâ€™t come to your reading, I was sick.â€ But I’ve exaggerated for attention; Iâ€™ve wanted to be the victim in order to get sympathy. As you said, it’s a fairly common modern American syndrome. Look at the Margaret B. Jones memoir scandal — she had to make everyone think she had this horrible life in order to get attention.
So what kind of research did you do about MBP?
DS: I interviewed a bunch of doctors, and I spent time in Montefiore Childrenâ€™s Hospital, following a family medicine specialist. He got very uncomfortable talking about MBP; it’s a very sensitive issue, as my friend’s friend proved. So he wasn’t too forthcoming; I had to ask him things like, “If I run some scenarios by you, can you confirm that things like that might happen?”
How about yourself?
JE: Yeah, I did a lot of self-education. I read a book by a guy named Dr. Marc Feldman called Playing Sick, and I eventually reached out to him, when my book was finished, to ask if he could vet it for accuracy. I also wanted to make sure that I wasnâ€™t giving away too much information to people who might be susceptible to the syndrome — I didn’t want to include too many specifics about how my girl injured and sickened herself, in case people might think, “Hey, that sounds like a good way to cause an infection, maybe I’ll try it.” And I joined a Yahoo group for Munch sufferers, which was really helpful in understanding what they go through. Itâ€™s such a horrible, miserable disease.
Also, post-publication, readers’ responses to the book have been really helpful. I’ve heard from a few people who have written to say, “Oh! Now I understand what my ex-wife was doing to herself,” or, “There was a woman in our office who faked cancer and then disappeared when she was called on it.” I even heard of two other cases where people faked AIDS, which I thought was this totally novel case! So I think Munchausen’s happens a lot more than people know — a lot of people have had experiences with it, but they donâ€™t know how to explain or understand what happened. Thereâ€™s no context for discussing it.
What kind of reactions have you received so far?
DS: I’ve gotten a lot of emails from people in the medical community, a lot of nurses who say they see this kind of thing all the time, and women — it’s funny, all of them have been women — who say their mothers did it to them. And then I’ve got some angry emails saying MBP is a myth invented by doctors, and you’re just perpetuating it. There’s a huge advocacy organization of women who have been accused of the syndrome â€“ itâ€™s called MAMA, Mothers Against Munchausen Accusations. So doctors are wary of talking about it, because they get dragged through the mud in the press. You can almost never prove it’s happening, so do you want to put your reputation on the line? It’s only the bravest doctors who make the diagnosis. The statistics say MBP happened 1200 times last year, but every doctor Iâ€™ve spoken to says theyâ€™ve seen it at least once, so it’s probably five times that number.
JE: I’ve heard people say that More Than It Hurts You is a book about Munchausenâ€™s by Proxy. Do you think that’s accurate?
DS: Well, yeah, but it’s not only about that. I thought when I came across this story that it would be a good way to examine the state of the culture, especially things like the right to privacy, health care, things like that. But I wanted to examine race and gender as well. The doctor who makes the accusation in the book is black, and the ways that people went after her in the book are the same ways people have gone after Obama. They criticized her relationships with other people, like they did with Reverend Wright; they picked on things she said in college, as they did with Michelle Obama. And I wanted to examine the media, and the role of the press in deciding cases that haven’t even been tried — my wife worked on Duke lacrosse team rape case, which just spiraled out of control before there was even any evidence. It’s like, people are more interested in good TV than in justice. So in a sense, I think of this as an historical novel — it’s the history of today.
If you’d like to read Have You Found Her and More Than It Hurts You, and you havenâ€™t won one of my giveaways in the past, email me at maud [at] maudnewton [dot] com before noon EST Monday (9/8), with â€œHurt Me, Hurt Youâ€ in the subject line. All entries will be assigned numbers based on the order received, and the randomizer will choose a winner.