COLUMBIA — Anger one minute, then sadness, then agitation — emotions change unpredictably for people living with borderline personality disorder.
About one in 20 to 25 people are living with the disorder, according to the National Alliance on Mental Illness. Sasha Menu Courey, the former MU student and swimmer who committed suicide in June 2011 and whose story recently came to national attention, was one of those people. Up to 80 percent of those living with borderline personality disorder will have suicidal thoughts, according to the National Institute of Mental Health; 4 percent to 9 percent actually kill themselves.
For more information about borderline personality disorder:
- Look at The National Alliance on Mental Illness website, which offers a description of borderline personality disorder and its symptoms.
- Go to the National Alliance on Mental Illness's Columbia webpage for information about monthly support group meetings, which are held on the second Monday of each month from 6:30 to 9 p.m. Contact Heather Harlan at 445-2310 or Tim Harlan at 874-2402 for more information.
- The National Alliance on Mental Illness has also scheduled a class for family members of caregivers of people with a mental illness. It begins March 6 and runs for 12 consecutive Thursdays. Register and get meeting location information by contacting Sonya Baumgartner at 800-374-2138 or via email at firstname.lastname@example.org.
- The National Suicide Prevention Lifeline's number is 800-273-8255.
Borderline personality disorder is a relatively newly identified mental disorder, first diagnosed in 1980. It is typically characterized by impulsive or reckless behavior, unstable relationships and difficulty regulating emotions.
Eric Fertuck, who holds a doctorate in psychology and is an associate professor at the City University of New York, defined patients' tendency to swiftly changing moods as emotion instability.
"They (the patients) can very rapidly change from feeling angry to feeling despondent and sad to feeling anxiety," Fertuck said. "This can happen within minutes or hours."
Often, the changes in mood and emotion manifest themselves in personal relationships.
"People with BPD can fluctuate with their view of people," Fertuck said. "One minute they can see them as a savior. ... If that person disappoints them, then that view can flip, and they can see them as an enemy."
Any sort of emotion impacts people living with borderline personality disorder intensely, said Mary Kelley, family support coordinator for the National Alliance on Mental Illness-Missouri.
"It is the emotional equivalent of a burn victim," Kelley said. "They have no emotional skin."
Before his daughter was diagnosed 2011, Mike Menu had never heard of borderline personality disorder. He began learning about the disorder while Menu Courey was receiving treatment at McLean Hospital in Boston in April 2011.
"I remember writing down the information I was getting about validation and communicating effectively with a loved one," Menu said. "It is so easy to make this worse with borderline personality disorder. … Everything family and friends do — even with the best of intentions — can make things worse."
Menu knows firsthand how difficult it is to cope with someone who has borderline personality disorder. For people living with the disorder, even normally comforting comments made by loved ones can cause pain.
“If a kid says something negative about himself or herself, the parents' first response is to say ‘Oh honey, don’t say those things about yourself,’" Menu said. "They say it with the best intentions, meaning that they feel bad that they feel that way, but what the child hears is ‘How you feel is wrong.’"
What parents should say instead is: "It must be so difficult and hard to feel that way," he said. "They shouldn’t tell them that they shouldn’t feel that way, just that it is hard to feel that way."
"You have to connect with them and validate that way,” he said.
Because of the relative newness of the disorder, not much is known about what triggers it. Some studies, such as one published in the British medical journal The Lancet in 2004, suggest that while borderline personality disorder can be triggered by environmental factors, such as a chaotic family situation or an assault, people's genetic makeup may increase their risk of developing the disorder.
Menu Courey wrote in her journal and told several people that she'd been sexually assaulted. Columbia Police recently began an investigation into the alleged assault.
Her father stressed how important it is to make the environment around all people — not just those living with borderline personality disorder — accepting.
"It’s about just slowing down to observe our emotions and learning to communicate more effectively," he said.
Borderline personality disorder is a fickle illness. Because some symptoms look so much like other disorders, such as bipolar disorder, major depression or anxiety disorders, Fertuck said, it is often difficult for professionals to diagnose.
"With bipolar disorder, the mood changes are not as rapid — someone will be depressed for several weeks, and then they’ll be feeling manic, on top of the world," Fertuck said. "People with BPD tend to not have the really elevated moods; they tend to fluctuate between the negatives emotions."
While not being able to diagnose someone with the disorder can lead to years without proper treatment, the more devastating side of not understanding borderline personality disorder is when the people living with it themselves are not understood.
"It's a sort of blame game," Menu said. "What a lot of people will say is that (the person with the disorder is) very difficult, manipulative and selfish."
He used an analogy to the terminally ill cancer patient who, days before dying, shows some anger. "If you are in excruciating pain, you don’t really care if you show some anger," he said. That's how a person with borderline personality disorder feels at times, though the pain is emotional. And the outward signs of that are often misunderstood, he said.
As recently as 10 to 20 years ago, few therapists knew what to do with a person diagnosed with borderline personality disorder, Kelley said. Since then, the outlook for those living with the disorder has changed dramatically. New treatments and better understanding of the disorder have improved recovery expectations.
"The prognosis is, for some people, actually quite good," Fertuck said. "With the right treatment and support, they might still be struggling with some aspects of life, but they might not have the most severe expression of the disorder, such as suicidal behavior."
Although many psychiatric disorders can be controlled with medication, borderline personality disorder is not affected much by drugs, Kelley said. The Food and Drug Administration has not approved any specific medication for the treatment of borderline personality disorder, according to the National Alliance on Mental Health.
The most successful form of treatment is dialectical behavior therapy, Kelley said. This form of therapy focuses on mindfulness, getting the patient to accept how he or she feels. The treatment has a 50 percent success rate.
Menu thinks that part of reason it's effective is that there's no blame attached to it.
“The person doesn’t fail the treatment," he said, "the treatment fails the person."
Still, finding help is not a matter of just picking up the phone and calling the nearest therapist.
"It's very challenging," Kelley said. "Many therapists don't want to see borderline patients because it's such a difficult diagnosis, and they require more intense therapy."
But Kelley said borderline personality disorder is treatable.
"It's a disorder of the brain. ... It's not a character flaw," she said. "To reduce the stigma associated with it, we have to talk about it."
Even though Menu Courey's battle with borderline personality disorder did not end as hopefully as others, her family is determined to help spread awareness about the disorder through the Sashbear Foundation.
“We needed to go through 20 years of Sasha to find out the things that didn’t work and to embark on this awareness effort," her father said.