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It's almost like something out of a fairy tale: a young person trapped by a mysterious illness, one caused by the (usually) female caretaker they're supposed to trust. But that's what happens when someone has Munchausen by proxy, and that's the disorder Hulu’s new anthology true crime series “The Act” shows with its first season, which is a dramatic retelling of the real-life horror story of Gypsy Rose Blanchard and her mother, Clauddine "Dee Dee" Blanchard.
As a child, Gypsy’s mother convinced her that she was gravely ill and, as a result, Gypsy spent much of her life enduring unnecessary medical treatment. She had to keep her head shaved, was confined to a wheelchair, and was even fed through a tube at times. However, as Gypsy got older, the cracks in her mother’s story began to show, and their relationship came to a bloody end when Gypsy’s online boyfriend, Nicholas Godejohn, murdered Dee Dee in June 2015, allegedly at Gypsy's request, PEOPLE reports. Both Godejohn and Gypsy would ultimately be sentenced for Dee Dee’s killing, and Gypsy is currently serving out a 10-year sentence behind bars.
It's a grisly true story, one that is sure to recapture national attention when the Hulu retelling, which stars “Fargo” actress Joey King as Gypsy and “Medium” star Patricia Arquette as Dee Dee, premieres on March 20.
In the years since Dee Dee’s murder, Gypsy Rose Blanchard has become one of the most well-known (alleged) victims of Munchausen syndrome by proxy. Here’s what you need to know about the disturbing disorder at the center of her story.
What is Munchausen Syndrome by Proxy?
The University of Michigan defines Munchausen syndrome by proxy as a disorder in which a caretaker pretends that someone under their care, often a child or any vulnerable individual such as an elderly or disabled person, is sick or injured in some way, at times even going to great lengths to cause the illness or inflict that injury onto their target.
The disorder got its name from Baron von Munchausen, a fictional German nobleman character created by writer Rudolf Erich Raspe in the 18th century, who exaggerated about his experiences in order to get more attention, the Rady’s Children Hospital in San Diego wrote in its run-down of the disorder.
Munchausen by proxy is a disorder known by several names. The Diagnostic and Statistical Manual refers to it as a factitious disorder by proxy, while the American Professional Society on the Abuse of Children refers to the disorder as “pediatric condition falsification” when referencing a child victim, and “factitious disorder by proxy” when talking about a perpetrator, Laura Criddle, RN and PhD., wrote in “Monsters in the Closet: Munchausen Syndrome by Proxy.”
Regardless of what name is being used, Munchausen by proxy is categorized as abuse and, as with any form of abuse, all healthcare providers are legally bound to report any suspected instances of it.
What are the warning signs of Munchausen Syndrome by Proxy?
There are a few clear warning signs that suggest a child or other vulnerable person may be a victim of Munchausen syndrome by proxy. Children may be hospitalized more often than normal and their symptoms may appear strange and get worse, yet those symptoms are only witnessed by the caretaker and never by an outside healthcare professional, according to the Cleveland Clinic, a nonprofit medical research center based in Ohio.
Other red flags include the results of a child’s medical test not matching the problems their caretaker claims exist, or when their condition improves when they are in professional care but then worsens when they return home with their caretaker, the Cleveland Clinic states.
A parent with this disorder may do things like lie to healthcare professionals about their child’s symptoms or even alter their child’s test results to further prove to others that they are indeed ill, with the next step being causing harm to the child to produce the intended symptoms, according to the University of Michigan.
It also isn’t uncommon for caretakers with this diagnosis to make the person under their care go through with treatment for the fictitious condition, including painful or otherwise harmful operations, which can lead to injury, sickness, lifelong psychological ramifications, or death, according to the Cleveland Clinic.
Individuals who receive this diagnosis or who have similar disorders often engage in “disease forgery,” according to psychiatrist and author Dr. Marc Feldman, a leading expert on the topic.
“They deliberately mislead others into thinking they (or their children) have serious medical or psychological problems, often resulting in extraordinary numbers of medication trials, diagnostic tests, hospitalizations, and even surgery... that they know are not really needed,” he writes on his website on the subject.
Perpetrators do not do these things for financial gain, but in order to satisfy an emotional need for attention, according to the Newport Academy Healing Center.
Who is most affected by Munchausen Syndrome by Proxy?
Some estimates suggest that around 1,000 of the 2.5 million child abuse cases reported each year can be attributed to Munchausen syndrome by proxy, according to the Cleveland Clinic. While the exact cause of the disorder is still unknown, doctors have theorized that perpetrators may have experienced trauma such as abuse or neglect in their childhoods, and that abusive episodes may be triggered by highly stressful events in the perpetrator’s life.
While fathers can be diagnosed with Munchausen syndrome by proxy, the disorder is more common in mothers, according to Rady’s Children Hospital, which puts the number of female cases at 85 percent.
The disorder is also a costly one, with estimates suggesting that fictitious disorders like Munchausen by proxy cost the US $40 million per year in wasted resources, MDs Kamil Jaghab, Kenneth B. Skodnek, and Tanveer A. Padder wrote in “Munchausen's Syndrome and Other Factitious Disorders in Children.”
What did it look like for Gypsy Rose and Dee Dee Blanchard?
As a child, Gyspy believed that she had leukemia and muscular dystrophy, as well as hearing and vision impairments, according to ABC News. Her mother had her use a wheelchair and at times, she fed her using feeding tubes that she did not really need. She would also routinely shave Gypsy’s head to mimic the look of a cancer patient.
Dee Dee’s behavior was extreme, but as Arquette said in an interview with Parade earlier this month, it was indicative of a more deeply rooted problem within Dee Dee.
“Dee Dee wants attention because she feels like a nonperson, a nothing. Her concept of intimacy is distorted. She just wants it to be the two of them in this house forever. She has Munchausen by proxy, and everyone [experts] interview with Munchausen by proxy denies they have it,” she said.
Gypsy reflected on her childhood with her mother during a prison interview with BuzzFeed in 2016, where she explained that even the doctors believed that Dee Dee was “devoted and caring.”
“I think she would have been the perfect mom for someone that actually was sick. But I’m not sick,” she said. “There’s that big, big difference.”
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