A new account of growing up the victim of Munchausen's syndrome by proxy is harrowing reading, writes Sylvia Thompson.
Cases such as that of Ian Huntley, the caretaker who murdered the English schoolgirls Holly Wells and Jessica Chapman, reinforce our fear of strangers and of the dangers outside our warm, nurturing homes. Sometimes, however, the danger comes from within. A book published this week throws light on a much lesser-known, more insidious and also potentially lethal form of child abuse, one that usually remains hidden from view.
Munchausen's syndrome by proxy is regarded by doctors as a mental disorder in which a person looks for attention through another person. That other person is usually a child and the perpetrator its principal caretaker, almost always the mother. Over time she repeatedly fabricates symptoms of illness in her son or daughter - mental, physical or both - bringing the child to doctor after doctor to seek diagnoses for conditions that she invents.
She may even induce illness or fake test results in her pursuit of doctors' attention and nurturance. In extreme cases the mother will put her child through unnecessary and life-threatening surgery so she can thrive in the role of an all-giving, all-caring parent.
Sickened, by Julie Gregory, a victim of Munchausen's syndrome by proxy, or MBP, is a harrowing but compelling account of the way her mother stole her childhood by making her into a sickly child always on the brink of a health crisis. "The part I hated most was the shaving," writes Gregory, who believes that MBP is simply a form of abuse, not a psychological disorder. Medical staff would "lather me up and run a new plastic Bic between my barely-there breasts. They needed me smooth and hairless so the little white pads would stick to those points constellated around my heart and record my beats."
Children at school used to ask if she was anorexic. She wasn't. Her mother simply starved her so she would perform "better" in medical tests. The phrase her mother used repeatedly becomes haunting: "Let's get to the bottom of what's wrong with this kid." And when she got fed up with her current doctor she'd say: "Look, dammit. This kid is sick, all right? Just look at her. And so help me God, if she dies on me because you can't find anything wrong with her, I'll sue you for every cent you've got."
Gregory clearly describes the distorted mentality of the abuser: characteristically for somebody with Munchausen's syndrome by proxy, her mother first gains the care and attention of a doctor, then threatens and tries to control the relationship by blaming professional incompetence for test results that, naturally, show nothing wrong with the child.
Next she'd turn to Julie. "Look, I'm trying to help you with this," she'd say, "sacrificing my life to find out what the hell is wrong with you. So stop f***ing it up when we get in here by acting all normal. Show them how sick you are and let's get to the bottom of this, OK?"
Gregory, who lives in Ohio, explains to The Irish Times: "Women perpetrators of MBP use their children as playthings in order to work out their damages. They see their children as dolls to re-enact the trauma on. They use their children as shoehorns to get themselves into the medical establishment, weaving a web in which the doctor is on first-name terms.
"From there they manipulate the positive response that nurtures them, becoming aggressive and overpowering over that parental response, to mimic what happened to them in childhood." They are, she says, "serially abusive".
In Sickened, Gregory gives readers sketches of family life at their isolated home in a "double-wide trailer at the end of a dirt road in a backwoods patch of Ohio", from her dad's diagnosis of paranoid schizophrenia, following a stint in Vietnam, to her mother's experiences of being date-raped (which she also imposes on her teenage daughter by setting up dates for her with men in their 30s) and her mother's paid caretaking of Vietnam veterans and foster children - whom she also subjected to unnecessary medical tests and treatment.
Gregory writes too about how her mother repeatedly threatened to commit suicide and how she manipulatively lied to everyone, including, most dangerously for her children, her husband. "She used to undermine my father's mental illness, making him so derailed and crazed that he'd hurt my brother and I."
Starved and drained of energy by back-breaking work on the family farm, Julie was taken from GPs' surgeries to specialists' consulting rooms as her mother excitedly sought medical explanations for her child's nose and throat problems, migraines, swollen tonsils, allergies, chest pains and irregular heartbeats. Julie's medical reports are scattered throughout the book.
"And the older I got, the worse I got. My possible conditions expanded to include genetic disorders and heart-valve malfunctions. And the medications to treat them piled up in the kitchen cabinets. Little pills got slipped under my tongue or dropped into my palm whenever Mom said it was time for my meds," she writes.
If people with Munchausen's syndrome by proxy find that interest is waning in their drama of "selfless" caretaking, they can move on to a new audience: new hospitals, new emergency rooms. Gregory describes how her mother would stay up late, reading medical journals and textbooks, assembling the knowledge with which she would confront sometimes ill-prepared doctors. She also describes how she was repulsed and emotionally scarred by unnecessary nose surgery and invasive urology and cardiology tests.
It was at the end of a week-long stay in hospital to investigate heart problems that she finally cracked. But the nurse didn't believe her tale of her mother's invented illnesses. From this first break-out moment, at the age of 13, it took Gregory almost two decades to come to terms with her abused childhood.
She vividly describes how she slowly "unfolded herself", from an initial temporary stay in a home for teenage runaways, through her last-minute withdrawal from a court case against her parents, through moving to makeshift accommodation with her brother after her parents apparently burned down their trailer home and separated when the insurance money came through, and, finally, after life on the road, back to her Ohio home town of Columbus.
She recounts how her life fell apart and how she built it back up, living on an isolated farm where she would look at her reflection in mirrors around the house, learning to trust what she saw rather than the distorted mental image her mother had left her with. And, disturbingly, she writes that her mother has remarried and now has two more foster children.
"I wouldn't have gone through the pains to write this book if it wasn't for those children," says Gregory, who believes that her mother now treats them in almost the same way as she treated her own children. "The best way I can be a witness to their lives is to take the reader through my eyes - and you know then that you want to save those children.
"They live in Montana, and Montana has one of the worst track records on child protection. I'm fighting to change that. The care workers there have even had me sign copies of my book for them, yet they still return the children to my mother. How sad is that?"
Gregory's mother has seen the book and read parts of it to Gregory's father over the phone. And what did she think of it? "My mom's not all there," says Gregory. "She talks about getting heart catheterisation herself now without having a memory that she did that to me. The children she now has are on drugs for schizophrenia, asthma and stomach ulcers. My dad hasn't read the book himself, but he is very supportive of my work. He tells me: you have a right to tell what happened to you in childhood; I don't disbelieve you; I'm only sorry I didn't help you sooner."
Gregory feels she herself has recovered. "I liken myself to a locust who lives underground forseven years and makes it way to the surface on year seven, comes out and flies away. I didn't know what I was doing during those seven years. I didn't feel, think or realise I had character or integrity. I did what I did by instinct. I am in the light now, and I have a lot of followers. I live by myself with my dog and a couple of cats. I'm restoring a 1920s house . . . . I write all the time - I've plans for an educational book on MBP" - she is completing a master's degree in psychology - "and another on the Vietnam War. But writing is an inherently lonely life. I'd like to get married and have a family."
Sickened: The True Story Of A Lost Childhood by Julie Gregory is published by Century, £12.99 in UK; Julie Gregory's website is www.juliegregory.com
A Doctor's Opinion:
Munchausen's syndrome by proxy is the falsification or induction of illness, whether physical, emotional or both, by a caretaker of a dependent person. In most cases the perpetrator is a mother and the victim her child.
Dr Marc Feldman, an Alabama-based specialist on the condition, estimates that 1,200 new cases are reported each year in the US. Many more may go undetected, because of the secretive nature of the maltreatment. One recent study suggested that when a case of Munchausen's syndrome by proxy, or MBP, is finally recognised, one of the child's siblings may already have died, an earlier victim of the perpetrator.
"Only when the same pattern of symptoms appear in the second, third, fourth or fifth child in a family have professionals and legal authorities been forced to realise that motherhood can twist into a strange, illness-related type of abuse that, unlike battering or sexual violation, defies ready categorisation," writes Feldman in his foreword to Sickened, Julie Gregory's account of her experience of the syndrome.
Feldman, who encouraged Gregory to write her book, has testified on cases of Munchausen's syndrome by proxy throughout the US, often before judges and juries that are dubious about the existence of such a bizarre form of abuse. Doctors can be similarly uncertain, he says. "What a parent says is usually the best guide to what's wrong with the child, so it takes an enormous shift in attitude for a physician to accept that the stories ring untrue, that the test results are normal, that no treatment ever works, that no amount of testing is ever 'enough' and that the parent is more accurately called a perpetrator."
People with Munchausen's syndrome by proxy often scour textbooks or the Internet for medical information to enhance their performances, he says. And, to complicate the situation further, children can start to show real symptoms, so strongly do they want to please their mothers.
Olive Travers, a clinical psychologist and author of Behind The Silhouettes: Exploring The Myths Of Child Sexual Abuse, says Munchausen's syndrome by proxy hasn't been widely discussed by health professionals in Ireland. "It challenges our idea of women as the all-giving mother figure. But it is another form of abuse on the continuum of emotional, physical and sexual abuse. This case is an extreme one, but there are many times when women don't have children out of love - and when their needs dominate they can use their children in a destructive way."
Gregory, who spends much of her time educating people about the condition, says: "If you suspect MBP, the first thing to know is not to confront the abuser. You need to have an interdisciplinary team that can run a checklist of MBP symptoms with what they are seeing in the patient and set up a surveillance (or do test results without the mother). You can't expect a child to source the distortion. You have to garner as much information as you can - and ultimately the only solution is to separate the child from the mother."