Missed diagnosis and no treatment: BPD's risk to adolescents
The contrast is striking. Katherine Duff gives off the attractive aura of an 18-year-old woman in good health and good humour. But when she begins to speak of what she has been dealing with since she was a child, a different image emerges.
“Every single day seems like it’s going to be the end,” she told W5. “Every single thing that you do requires so much work that you always are wondering if it’s worth it, if you should just give up now.”
When Katherine was 15, she did give up and tried to end her own life. She survived and then tried again at 16. Her parents had begun a desperate search to try to find out what was wrong with her, and to find a treatment that would help her. Eventually, they would learn she was suffering from a psychiatric condition called, Borderline Personality Disorder. Or BPD.
It is characterized by enormous mood swings, emotional outbursts, inexplicable anger and self-harm. And it is extremely dangerous. Statistics show that up to ten percent of patients who’ve been hospitalized for BPD end their own lives.
Neurological imaging studies suggest that people with BPD have an overactive amygdala, the part of the brain where emotions are processed, and an underactive pre-frontal cortex, that regulates those emotions. Genetic and environmental factors may also play a role. It is believed that between 2 and 6 per cent of the general population is affected in different degrees. And according to one study, it affects just over three per cent of children over the age of 11. But a clear picture is difficult to establish because the symptoms are so varied, they can be mistaken for other conditions or simply be undiagnosed. And among adolescents, it can be dismissed as a phase of normal adolescent development.
Larry Zeligson is familiar with the problem. His son Ben began life as a happy and funny child with many friends. But when alone with his family, he also began displaying seemingly inexplicable emotional outbursts. “For example,” Larry said, “He’d get on his bike and he couldn’t keep his balance and it would fall over. Most kids would get up and get back on, or maybe cry a little bit. But he would explode and scream and shout and throw the bike on the ground.”
When Ben was eight, things became far more serious when he began expressing thoughts of suicide. Larry reported it to doctors. “They would say, well you know it might be his age, he’ll outgrow it. It’s a little early to even put him in any kind of treatment. Let’s monitor it.”
As Ben grew older, the outbursts continued and his father struggled to get an appointment for him to see a child psychiatrist. “The waiting lists themselves were at least nine months to a year,” Larry said.
Larry began researching on his own and read about Borderline Personality Disorder, and he concluded the symptoms were exactly what he was seeing from his son. He called one Canadian treatment centre, asking if he could get Ben admitted for BPD treatment. “They said to me, well how old is he? And I said he’s 14 going on 15. Right away they said, no, no, we only take 18 year olds. They don’t even diagnose them before they’re 18.”
In a desperate email to one psychiatrist, Larry wrote, “There are days when I feel like I’m going to lose Ben if we have to wait until he turns 18 for treatment! What else can I do?”
Ben never was officially diagnosed as suffering from BPD. And never would be. One evening, his father found him hanging in his bedroom. It was a week after his 15th birthday.
Dr. Blaise Aguirre is an American psychiatrist who specializes in BPD. He runs a residential treatment centre for adolescent girls at the McLean Hospital in Boston, Massachusetts. He said that BPD patients often are stigmatized as being difficult to treat and as a result, some psychiatrists may be reluctant to label adolescents with it. There sometimes is also wishful thinking that the symptoms may be just a temporary adolescent phase. But things, Dr. Aguirre said, are beginning to change. “We’re speaking about it more,” he said. “Increasingly, we get calls here at the hospital from clinicians who used to say for example, that they have a 16 year old who may be exhibiting some of symptoms of Borderline Personality Disorder. Now they’re saying they have a 16 year old who has BPD.”
In some ways, that is what happened to Katherine Duff. Her initial diagnosis was bipolar disorder. She was prescribed medication. But if anything, her condition deteriorated further leading to her first suicide attempt at 15. Clearly, something else was going on too. And then a psychiatrist at Hincks-Dellcrest in Toronto, a major centre of children’s mental health care, met with Katherine’s parents.
“The psychiatrist had a book on borderline personality disorder,” Cameron Duff said. “I had not heard of it. And she said it is characterized by anger, profound loneliness, hopelessness. She went through a list of symptoms and I said, that is her. That is my daughter.”
Unlike other families with troubled adolescents, the Duffs had a diagnosis. What they didn’t have was an effective treatment. And then began a desperate search. “We went into hyperdrive,” Katherine’s mother Doris told W5. “We saw possibilities when we read the stuff about the U.S. treatment facilities. But we saw no hope for treatment in Canada.”
The family applied to the Ontario Health Insurance Plan, OHIP, asking for funding to send their daughter to Boston’s McLean Hospital. Eventually, their application would be rejected but while waiting, their crisis suddenly deepened. When Katherine was 16, she made a second and far more serious attempt to end her life, taking a massive overdose of medication prescribed for her bipolar disorder.
“I’d just come home from volunteer work,” she said, “I went to my room. It was like, nothing is changing, my life is meaningless, I’m worthless, this is never going to end and I want the pain to stop.”
Katherine was rushed to hospital. While recovering, her parents decided they could wait no longer. Her father said, “It was literally at that point, I just took one more kick at the government (OHIP) and said, listen, you have got to do something here and they said no. So I picked up the phone and called McLean in Boston and said, we’re coming.”
Katherine lived at the McLean Hospital for six weeks, receiving what is known as dialectical behavior therapy. It teaches people how to recognize emotions that are irrational and tries to provide ways to regulate them. BPD sufferers are taught to fill in cards every day, analyzing their emotions and what they did to bring them under control. It sounds simplistic but Dr. Aguirre says it is effective. “Patients become effectively emotional as opposed to ineffectually emotional,” he said. “You’re going to recognize yourself for who you are but you will be much more effective in dealing with difficult situations.”
The therapy is not a cure. Instead, it is sometimes referred to as a toolbox, giving BPD sufferers ways and means of living with their condition. The therapy is time-consuming and expensive. The final bill to the Duff family came to about $70,000.
The question facing governments in Canada is, can a publicly funded health care program afford to pay for this kind of treatment? Donna Duncan, the CEO of Hincks-Dellcrest, Toronto’s centre for children’s mental health, told W5, “You will find bits and pieces of BPD treatment. But you won’t actually find the comprehensive program in Canada.”
Right now, Hincks is working with health care professionals to develop a system that manages the symptoms of BPD in adolescents and offers support to their families. Duncan’s hope is that early intervention will mean effective treatment before things get out of control. “We hope to avoid the emergency visits, avoid families having to go to the US for treatment,” Ms. Duncan said. “And we have to stop kids trying to kill themselves. To have to hear a child come and tell you that they don’t want to live, no parent should ever have to hear that. Never.”
There are some signs that things may be changing. The Duff family appealed the decision of OHIP not to pay for their daughter’s treatment cost in the U.S. They won, the approximately $70,000 cost will be refunded. And BPD is being pushed into the public eye like never before, mostly by families who have had first hand experience with it. The Courey family for example. Sasha Courey was an elite Canadian athlete who swam for an American university. She first attempted suicide when she was 16 but it would be four years before she was diagnosed with BPD. Shortly after that, she ended her life. Her family believes that with an earlier diagnosis and treatment, Sasha would be alive today. They started what is called the Sashbear Foundation to raise public awareness. Every year, they hold a walk along the shores of Lake Ontario. Hundreds attend.
And there are young people like Katherine Duff willing to be public. Most people probably would find it difficult to sit in front of a television camera and be interviewed. Yet she agreed to speak to W5 about something as personal as her BPD, a condition she accepts may be part of her life forever.
“The second time I tried to kill myself it was quite serious and I always look back and think why did I survive? And I can’t say, you know, that I’m happy or that I’m sad that I’m still alive. I feel indifferent still today. I’m hoping that will change. But again this (interview) is just a window into how difficult this learning to live with it really is.”