The controversial disease affecting women you’ve probably never heard of

From ages two to 10, Mary Bryk’s hospital records read like some sort of medical novel – over 400 pages describing skin grafts, transfusions, fractures, and more. In just eight years, Bryk, now a nurse in her 50s, was hospitalized 28 times and had 24 operations, trying to fight off infections that baffled her doctors. Little did they know, the source of her illnesses was her own mother.

Munchausen Syndrome is a psychological disorder in which a person feigns disease in order to draw sympathy or attention, usually by harming themselves, according to Munchausen expert Dr. Marc Feldman. In Munchausen Syndrome by Proxy (MSBP), a caregiver abuses a child by inducing medical problems. While awareness of the disease has grown slightly since Bryk was a child, in her time many had never heard of such a thing, making it difficult for Bryk and her mother to get the help they both needed.

“My mother was a nurse, so she was allowed to take care of me,” said Bryk. “They would even send me home on IVs and so forth, knowing my mother could care for me at home. No one ever knew or ever suspected that she was causing these things.”

Unbeknownst to her doctors, Bryk’s mother was inducing her injuries and using incisions and drainages to implant dirt and coffee grounds into her body, causing sustained infections including staph, E. coli, and a case of gangrene so severe Bryk almost had to have her right leg and arm amputated.

“I’d be to the brink of severe infections—life threatening, and then all of a sudden my mother would back off for a while and I would start to heal, and then it would start all over again,” said Bryk.

As she became older, Bryk’s mother’s treatment of her became much more “torturous.”

“She would sit on top of me, cause me injuries—she would use a hammer on me, and the way she kept it from bruising was she would wrap my arm or leg in a towel and then use a hammer and it slowly would occur but I wouldn’t have as much bruising,” said Bryk.

Bryk says she tried to tell her father but he didn’t believe her, and at the age of six she threatened to tell her teacher what her mother was doing. At this point, Bryk was big enough that her mother had to tie her down to keep her from fighting, pulling Bryk out of school at lunchtime every Monday, Wednesday, and Friday (hospital visits were scheduled for Tuesdays and Thursdays) to torture Bryk while no one else was at home. In response to the threat, Bryk’s mother injected boiling water into her right arm, causing severe burns that at certain points reached all the way to the bone.

“After that point I knew I couldn’t tell anyone; I knew I had to keep my mouth shut,” said Bryk. “I was scared to death of my mother and so the abuse kept going on.” And on it went, until Bryk’s younger brother started showing up at the hospital with the same infections, and doctors began to grow suspicious. Bryk’s mother stopped abusing her children, although she continued to harm herself in the same manner. About 20 years later, Bryk was watching a 20/20 special on a woman named Tanya Reid, a famous “Munchausen Mom” who was convicted of killing her daughter in the early 80s, when she finally found a name to lend to what her mother had done.

Morgan Reid, like Mary Bryk, was a victim of Munchausen Syndrome by Proxy perpetrated by her mother, a dynamic that is strikingly common. In fact, only about five percent of perpetrators are fathers, said Dr. Feldman.

“75 percent of perpetrators in published reports are the mothers of the victims. 20 percent are other women,” said Feldman. “The reason is unclear, but it may be because MSBP represents a distortion or perversion of mothering, not fathering. In many ways, the perpetrators try to come across as perfect caregivers – they sacrifice their lives for terribly ill children whose problems are defying diagnosis or treatment efforts. Many of the fathers in these cases have jobs that keep them away from home much of the time. Other fathers have ‘traditional’ views of marriage and parenthood, believing that anything involving the children is the mother’s responsibility and prerogative.”

This was certainly the case for Bryk, who said her father worked two jobs.

“He was always away from the home quite a bit, and he always said it was to pay my medical bills,” said Bryk.

Today, Bryk, who was the first person to write a firsthand account of MSBP in 1997, speaks at medical schools such as the one at the University of Michigan, raising awareness for the disease. While many agree that increased knowledge of MSBP, resulting in increased cases, is a good thing, there has been plenty of backlash over false diagnoses, with some arguing that doctors and case workers are too quick to cry Munchausen in tricky cases. Enter Dr. Helen Hayward-Brown, a leader in research and advocacy work regarding false MSBP allegations.

Hayward-Brown says that she’s seen many examples of false MSBP allegations, and that they’ve only continued to rise. Once a doctor suggests there may be a case of MSBP, she believes that workers involved in the case cherrypick their evidence in order to confirm the possibility.

“When a doctor diagnoses MSBP when it does not exist, it is usually due to medical incompetence,” said Hayward-Brown. “A doctor, particularly one with a fair amount of hubris, would rather believe that a mother is harming her child than believe that their own medical skills are in question. Some doctors don’t wish to admit that they don’t have the answers for any illness. Others use the diagnosis to stop the family getting a second opinion which might highlight their own errors.”

When false allegations of MSBP occur, the results can be extremely serious, even deadly. In 1996, Philip Patrick was taken out of the care of his mother, Julie, after doctors at Vanderbilt University Medical Center alerted the state to a possible Munchausen case. A month later, Philip died while under state care from what turned out to be a rare gastrointestinal disorder.

“A diagnosis of MSBP can actually mean that a parent and her children may be denied access to medical care.  Parents and children may die as a result of the serious ramifications of real illnesses not being treated,” said Hayward-Brown. “Currently, in Australia, there is a woman dying from serious genetic illnesses, but she is unable to get medical care in her home state due to the allegation. In the past few months, in Australia alone, I have stopped five individual mothers from committing suicide due to false allegations of MSBP. Two additional mothers had already attempted suicide before contacting me.”

Hayward-Brown believes the MSBP label is especially worrying for women.

“There is a serious gender bias in the diagnosis of MSBP. Mothers are accused of ‘attention seeking’, and ‘liking the attention of being in hospital’. This means that women are being treated like pathetic children, hungry for attention from the ‘god like’ doctors in the hospitals,” she said. “It is true that in some circumstances, a mother may harm a child in the medical context, but this is extremely rare. In nearly all the cases which come across my desk in detail, it has been found that medical error is the issue, not the mother.”

Despite outcries of women around the world who want to shun the MSBP label, it is obvious to Bryk that Munchausen was a real and devastating presence in her mother. The disturbing illness and its constant presence in Bryk’s home had lasting effects on her well into adulthood. Decades after Bryk’s first hospitalization, she sat down with her mother to talk about Munchausen.

“In my mind, I was going to save the day,” said Bryk. “I was going to say, ‘Mom, this is what you have, but it can be treated and you can get better and you don’t have to live this way.'” The reality was denial and anger from Bryk’s parents, who chose not to speak to her for 18 years. When her mother died four months ago, however, Bryk says she was once again by her side.

“In spite of everything, I still loved my mother,” she said.

While it is tempting to view the narratives of Bryk and Hayward-Brown in opposition, one thing is for sure: Munchausen – the disease, which is sewn from the seeds of traditional motherhood and oppressive gender norms, and the label, itself, which is sometimes applied to the innocent – is a women’s issue.