Take Care of Münchausen Syndrome, by Proxy
What the case of Maya Kowolski can teach us about the lies we tell ourselves.
The Frontier Psychiatrists is a daily health-related newsletter. It’s written by Owen Muir, M.D. This past week, in Florida, a rare condition made headlines after a Netflix Documentary— “Take Care of Maya” — made exactly the wrong points about a complex condition, and a jury awarded a ton of money to the family, leaving years of appeals, recriminations, and a family bereft in its wake. A very brief synopsis of the case:
In October 2022, The Cut published “What Happened to Maya,” which follows Maya Kowalski, a 10-year-old girl who went to the emergency room complaining of mysterious, excruciating pain. Her story became the basis of the Netflix documentary, Take Care of Maya. On November 9, 2023, after suing Johns Hopkins All Children’s Hospital in St. Petersburg for more than $200 million — alleging false imprisonment, medical negligence, battery, fraud, and intentional infliction of emotional distress, among other harms — a Florida jury awarded Maya’s family $211 million.
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Maya Kowalski is a girl who was sick. A journalist picked up her story, and then another, and then Netflix. It became a courtroom drama, and the jury awarded Maya and her family $211 million in a lawsuit after her mother completed suicide. I am not an expert witness in that case. I met one of the series' producers before its release at a bar on the Lower East Side. I will not weigh in on that legal matter because I’ve had enough stalking on and off the internet; thank you very much. I will weigh in about the problem that was the heart of the argument in Take Care of Maya — our inability to understand profound misunderstandings.
There is a psychiatric illness called factitious disorder. Factitious disorder, previously referred to as Munchhausen syndrome, refers to the unconscious motivations that lead someone to attempt to feign illness consciously. This acknowledgment of the word “consciously” is followed by “for unconscious reasons.” This is the only time the unconscious appears in the fifth edition diagnostic and statistical manual. People’s unconscious motivations for conscious actions are only mentioned here in DSM-5. These are not people who are simply faking. People who know they’re faking—imposters— we have a different name for that. That’s called malingering.
Malingering is the medical term for lying because you want to get something out of it. Usually, when people are malingering, which is lying, they are defined to know that they are lying and why they’re lying. Factitious disorder does not invoke the knowledge of one’s motivations. Explicitly, factitious disorder exists because of the human ability to avoid seeing one’s motivations—even while seeing one's behavior.
There is a riff on Factitious Disorder, the presence or absence of which was the question in Take Care of Maya. It is called Factitious Disorder by proxy. This is a real condition in which one person’s mind seeks to make another person sick without knowing why they are doing it. This means people are often subjected to harmful medical treatment. Often, the victims are children. They receive treatment that they don’t need for a condition that they don’t have. There is an alternate name for this phenomenon: medical child abuse.
Child abuse does not have positive brand associations in the minds of anyone. No one wants to be a child abuser or identified as such, even if they are actively abusing children. Medicine, as a profession, has exacerbated the problem of Factitious Disorder by proxy with the medical child abuse label. This diagnosis and subsequent treatment—often involving coercion— has risks and benefits.
It’s a sick thing. It is a sick thing to do to someone somebody else. In this context, I argue that the word sick isn’t intended as an insult. The real sickness is a lack of insight on the part of the person doing the sick-making of their child. There is a built-in argument in any case of Factitious Disorder by Proxy diagnosis — by definition, it’s unconscious. The invocation of the diagnosis sets up a fight, and those fights can be bad for the children our child protective services system is supposed to protect.
Part of the pathogenesis of the eponymously named Munchhausen by Proxy syndrome is, by definition, the person harming— getting the other person treatment they don’t need, hurting them, making them worse, maybe killing them—doesn’t know it’s for their own gratification. What’s so sick about this phenomenon is a mind-blindness. People can’t see what’s wrong with them and what’s not wrong with somebody else. Munchhausen, by proxy, is an extremely dramatic and creepy manifestation of a basic brain system gone—horribly—wrong. I don’t even have to know if this disorder is what was happening in the case of Maya Kowlski to know none of it seems like an experience anyone would want for themselves—or anyone else. The case of Maya was one in which care was not taken in important regards. This may be the only point of consensus between the parties. How do we understand this phenomenon? I like analogies, especially those that lower the emotional temperature.
In brain injuries like stroke, we see a similar phenomenon happen regularly. It doesn’t phase us in the same way when there is a gaping hole in the physical brain.
The phenomenon is called:
Anosognosia.
This means the inability to know one is sick.
People with strokes demonstrate the syndrome remarkably: Half of their body can be paralyzed. A blood clot lands in the brain. A part of the brain is killed, such that half of the body is paralyzed. The very same injury that causes physical process? It also causes mental paralysis of the ability to know you’re paralyzed. Strange things can occur! A vignette might look like the following:
A patient is lying in a hospital after a stroke, half of their body unable to move. A doctor can pick up that patient's hand and then drop it. It will fall, even on their face. They’ll say they wanted to do that if you ask them what happened. They will assert they did it on purpose! They will swear they are not they are paralyzed at all. If you don’t know that the brain can completely skip over what the rest of us would consider reality—that the brain’s stories are its reality— this is very confusing.
Our stories about our reality are our reality. Other people may observe other things. That is their reality.
Reality is composed of both what happens in the world and what happens in our minds. Often, those things agree: what is real in the world and what is understood to be real in the mind are the same thing. Sometimes, what is real— validated by other observers in their internal sense of reality checking— and what is in our minds are different.
Our brains are extremely good at telling us stories about what is real. We are wired to believe those things. Doubting your reality? That’s called paranoia and can be a symptom of illness. We’re usually good in a state of relative wellness at believing the stories our brains tell us. Just like computer programmers worry about artificial intelligence and how confident it can be when presenting its findings, our brains— original intelligence—have similar programming. Conviction about the real is a feature, not a bug, for humans.
Sometimes, our conviction about the real has a glitch. These glitches are hard to understand because we’re all running the “conviction about what’s real algorithm” in our heads.
When people say something happened to them, especially when it’s awful, there is a strong human inclination to believe, to validate, to support, and to make the person feel understood—if what they’re claiming fits with our conviction about reality— or to dismiss that person if it’s at odds. We will also dismiss everything else they’re saying for good measure.
We Defend Our Reality in Our Heads to the Point of Incoherence
We don’t love mysteries. We love reading about mysteries for entertainment, but in our day-to-day lives, wondering about what’s real is deeply unsettling.
My argument, dear readers, is that this reality validation system is often wrong. We’re not bad people for having our brains function the way that we do! Conviction about the real? It let us succeed as a species.
Endlessly fact-checking every situation is not adaptive. We need to react quickly in difficult, scary, or dangerous situations. We must react as if what we are seeing is what we think we are seeing because, most of the time, it is. It is better to be alive and incorrect than dead —but curious in one’s last moment alive.
We built entire social structures, called religion, around propping up faith and belief as if it was a good thing on its own. We built other structures, called science, around systematizing, skepticism, and structured understanding of what is or isn’t real, no matter what we believe.
Fundamentally, I’m a scientist. I’m skeptical. But I’m human, and so I believe—we all do! This story of Factious Disorders? It is about that “reality check” system that lets us believe. People can be unable to see the truth, even when it’s right in front of their face. Not because they’re bad or wrong. Because we are human.
It is a system so powerful it lets some of us make our children sick and deny we did any such thing.
I can’t tell you if this is what went wrong with Maya, her mother, her doctors, or their hospital. I can state, with confidence, that our need to believe in an objective reality and defend it to death is a feature of the human condition.
That system is not without error.