Health Battles Feature Part 3:
The stigma associated with borderline personality disorder and other mental illnesses has kept some people contacted for this project from wanting to be identified by name, or even to be interviewed at all. And it's clear that families are deeply affected when such illnesses are present.
Elaine, a Northern Virginia resident whose 16-year-old adopted daughter has shown signs of borderline personality disorder, asked that her real name not be used because she doesn't want her daughter to face derision at school. One of the signs is distorted perception and reasoning, which can affect a person's self-image. Elaine sees this as being linked to her daughter's problems with bulimia, for which she was hospitalized about a year ago. "My daughter thinks she's ugly and gross," she says, though an objective person would see that isn't true at all.
There were some incidents in her daughter's younger years that Elaine now sees as signs of trouble. At 5, the girl started taking jewelry from her mother's jewelry box. She stole some chocolate from a third-grade teacher. In fifth grade, friends said she wasn't eating. Then, at 10 1/2, in a fit of anger, she wrote on a white board, "I hate you, I hate you, I hate you " — a reaction out of proportion with what was going on, Elaine says. "I might have caught her taking some candy that was special to me." The girl has also broken glass in the back door and pulled a knife on her mother during an argument.
It can be perplexing to figure out what medication and treatment will work best. For example, Elaine is hesitant to try a neuroleptic drug that could help reduce her daughter's distorted thinking and impulsiveness because she's afraid it won't mix well with the anti-purging medicine she's taking. "I wish there could be more research so I wouldn't feel like my daughter is a guinea pig," she says. In addition, one of her daughter's counselors felt so strongly that she needed residential care, the counselor resigned from the case. But the family's insurance wouldn't cover residential care, which would have cost $150,000 for 30 days, Elaine says.
She adds that the family paid $23,000 last year for her daughter's treatment, including insurance premiums and out-of-pocket expenses for care not covered by her insurance plan's PPO network — "because most of the time, the network doesn't have what you need" — along with hospital costs. "We felt like we were going to be in a situation where this chronic illness could bankrupt our family."
Fortunately, the family was able to obtain subsidized services through Arlington County. The county provides services on a sliding scale based on income, Elaine says, adding, "I think because my daughter had been hospitalized with bulimia, they felt this was a serious issue and that we needed help."
Therapists came to their home to offer counseling for all the family members. "They helped us change our environment," and to respond to their daughter's emotional outbursts in ways that don't make the situation worse, she says. "We try to reward our daughter for behaviors we want to see."
Dr. Helen Foster, who has a psychiatry and psychotherapy practice in Henrico County, says that about a fourth of her clinical time is devoted to borderline patients. She describes them as having tremendous emotional pain and a fragile self-image. "They often have intense reactions. It's hard for them to take being treated brusquely."
Foster says people with borderline personality disorder tend to see things as black or white. "You try to teach them that life is [both] good and bad." That also applies to the patients themselves. "The most stable self-image is to see yourself as you really are — imperfect, but basically well-meaning," she says. "If you feel like you have to be perfect and someone points out a flaw, it makes you more likely to implode. … When you're that vulnerable, it's hard to take input."
Elaine hastens to point out that despite everything, her daughter has a lot going for her. "She is extremely talented and extremely intelligent," she says. "I want to get her into adulthood alive and safe."
In contrast to the active involvement of Elaine and her husband in their daughter's treatment, a Richmond-area couple is suffering from the estrangement of their grown children who need help but won't accept it. They believe the children have symptoms of borderline personality disorder, but they haven't been treated.
"It is a family tragedy," says the mother, whom we'll call Marie. "Damage is severe. Relationships do break off."
As youngsters, the children were different from others, she says. They needed more attention, had short attention spans and had frequent meltdowns. Other families didn't like to have the children over for play dates. At one point, it was so bad, Marie says, "Every morning I would pray that I would get through the day and not scream."
When the children became adults, she feared saying something that would set off a verbal tirade or worse.
"I have the impression that with this illness, people can function fairly normally," Marie says. "They're suffering, but maybe they're not likely to get treatment until things kind of crash down around them. If it's always somebody else's fault, why would you need to get help?"
She and her husband, Jeff (a pseudonym), found comfort and company in a five-year-old group called FACES (Family Advocacy Creating Education and Services) that's based in Midlothian. It offers support and resources to families coping with mental illness.
Jeff says he thinks families of people with mental illness are usually not the focus of attention and treatment. But he says they need help, too.
"When we first came, I didn't quite understand what people meant when they said they feel like they've lost a family member," Marie says. "We thought we were beyond it, but we didn't know it was going to come back around."
Currently, they are not in contact with their children. But Marie and Jeff want to believe that won't be the end of the story.
"We're a work in progress," Marie says of her family. "I would like to think we could come together again and be whole. I hold onto that hope."