Resources at US-based TARA National Association for Personality Disorder
Reprinted from the "Borderline Personality Disorder" issue of Visions Journal, 2011, 7 (1), p. 18
Valerie Porr understands pain. When one of her family members was diagnosed with borderline personality disorder (BPD) in 1990, Porr was very confused and upset by the diagnosis. At that time, she found little information about this mental disorder or how it could be treated effectively. Since then, Porr has directed her energy toward increasing awareness of BPD, and promoting healing and change among those affected by it.
BPD is an enormously challenging disorder to live with. People with BPD experience emotional dysregulation (angry outbursts, emotional instability),1 unstable relationships and problems with self-image. They are impulsive, often struggle with intense fears of abandonment, and engage in suicidal behaviour or threats.1 They live in great emotional pain, which causes confusion, fear, anger and exhaustion in the people close to them. Approximately 10% of people with BPD die by suicide.2
In 1994, Porr founded TARA APD (Treatment and Research Advancements National Association for Personality Disorder), a New York City-based not-for-profit organization. TARA fosters education and research in the area of personality disorders, with a focus on BPD. The association advocates for those living with BPD and raises awareness of the disorder through its educational programs, teleconferences and participation in major conferences around the globe. Porr has also written a book on the topic, titled Overcoming Borderline Personality Disorder: A Family Guide for Healing and Change (Oxford University Press, 2010).
In 1993, Porr found hope that BPD could be effectively treated when she heard psychologist Dr. Marsha Linehan speak about dialectical behaviour therapy (DBT). Linehan developed DBT, which combines the strategies of behaviour therapy with Eastern mindfulness practices (i.e., paying attention to the present moment in a non-judgmental way). The approach teaches specific skills that help people better regulate emotions, manage interpersonal relationships and tolerate distress. DBT therapists validate and accept clients as they are, while helping them to develop more adaptive coping strategies.3
Impressed by Linehan's approach, Porr became an "instant advocate" for this method of treatment. With TARA, Porr has created a place where family members of those with BPD can access appropriate resources and learn skills to live better with the disorder. The association is funded by private donations and revenue generated from its membership fees and other services.
The challenge of BPD
Many factors contribute to the complexity of treating people with BPD. On the phone line from New York City, Porr explains that there remains a lack of available evidenced-based treatment, such as DBT, as well as information about cutting-edge research on the disorder.
BPD can begin in youth, and a major obstacle to its treatment is that many youth and adults who have BPD don't receive an accurate diagnosis. Porr says that by the time a person with the disorder, or their family members, contacts TARA looking for help, they have, on average, received five other diagnoses before BPD is detected. "The family knows that something is wrong and attempts to get help," she says. "They get diagnoses of ADHD (attention-deficit/hyperactivity disorder), conduct disorder, oppositional defiant disorder, depression, anxiety, bipolar disorder, PTSD (post-traumatic stress disorder). Then they graduate to borderline."
Additionally, because many people with BPD are misdiagnosed, they are prescribed medications that don't work. Even with a correct diagnosis, while some medication may lessen a symptom for a short period of time, Porr says that meds don't solve the problem.
Porr also notes that people with BPD are seen as very difficult to treat, especially since many therapists don't have the appropriate training in evidenced-based methods, such as dialectical behaviour therapy, to help their clients. She says that often the therapist ends up feeling frustrated because the treatment hasn't worked, and the client gets labeled as "treatment resistant." "If you give people with BPD the wrong treatment, they will often get worse," Porr says. "By the time families get to TARA, they too, feel frustrated, helpless and angry."
Resources at TARA
TARA offers a range of resources to assist people whose lives are affected by BPD. The association operates a helpline where callers are provided with information on BPD and DBT, as well as referrals to effective treatment programs and related resources—including in Canada. TARA receives inquiries from parents, grandparents, partners and siblings from all around the globe.
Porr, who was trained by Linehan in DBT, has developed an eight-week curriculum based on DBT specifically for families and friends of people with BPD. Porr teaches family members how the brain is affected by BPD and how to implement DBT skills in their environment. TARA doesn't offer treatment for people with BPD, but can direct them to appropriate treatment programs. The association also holds monthly information meetings on specific topics via teleconference.
By becoming a member of TARA, people can receive a BPD journal, relevant CDs, newsletters, notifications of TARA events and other meetings, and a reduced rate on TARA programs. Membership is international.
TARA has chapters in several US cities, and Porr would like to see further expansion. Presently, there are no active chapters in Canada, but Porr is keen on the idea. TARA has a scientific advisory board—which includes several Canadian members—that keeps the association abreast of the latest developments in BPD research, while Porr shares what’s happening on the ground. "When you are dealing with family members and a helpline, it's as though you have your fingers on the pulse of the community," she says.
Recently, Porr has been working with her team to determine how to move forward now that Overcoming Borderline Personality Disorder has been published. The book offers tools that can help family members of people with BPD better understand the disorder and begin to cope with it more effectively. Using her book as a guide, TARA will be holding regular teleconferences that will enable people from diverse locations to come together and discuss the book in a structured way. This will be a fee-based service, with a discount for TARA members. Porr is also working to develop TARA webcasts and plans to offer online courses focused on TARA's DBT-based family programs.
TARA Treatment and Research Advancements National Association for Personality Disorder
National Borderline Personality Disorder Resource and Referral Center
Decreasing anger and increasing compassion
The focus of Porr's work is on helping families gain insight into BPD, develop skills to better assist the person living with BPD and promote relationship repair all around. "It's urgent that the families have effective skills and know how to handle a crisis. BPD has one of the highest suicide rates of any mental illness." TARA helps families acquire skills that will enable them to respond—without fear, anger or causing harm—to someone in distress. They learn how to decrease the emotional intensity of situations, develop problem-solving skills and increase compassion.
"DBT is based on behavioural therapy and Buddhism," says Porr. "What Marsha Linehan has managed to do is teach therapists to think like Buddhists, and that's not easy in our society," she laughs. "And that's what I'm trying to do with families—cultivate compassion."
Van Gelder, K. (2010). The Buddha and the borderline: My recovery from borderline personality disorder through dialectical behavior therapy, Buddhism, & online dating. Oakland, CA: New Harbinger Publications.
Areas for improvement
Porr points out that funding for BPD research is greatly lacking. In 2008, US-based National Institute of Mental Health–funded studies on BPD accounted for less than 1% of the agency’s total budget.1
Porr also challenges the mental health community to work toward improved connections between different research areas. For example, she argues that better links should be made between childhood disorders and BPD. She says that oppositional defiant disorder in a child may be the precursor of BPD and therefore the child might benefit from DBT. Additionally, she notes that many people with BPD suffer from sleep problems, so there needs to be more investigation into the connections between BPD and sleep disorders.
Since TARA was founded, awareness of BPD has improved; however, much more work needs to be done in this regard. Evidence-based treatment such as DBT needs to be more widely available and more affordable.
It is essential to have access to quality networks of information and support when faced with a challenge as complex as BPD. With passion and dedication, Porr has developed a resource that enables people to gain a greater understanding of BPD, as well as skills to better live with it. With TARA, she has helped to build a BPD community that has benefited people around the globe.
About the authorLindsay lives in Vancouver
Porr, V. (2010). Overcoming borderline personality disorder: A family guide for healing and change. New York: Oxford University Press.
Linehan, M. (2003). Dialectical behavior therapy (DBT) for borderline personality disorder. DBT Self-Help.[article]. www.dbtselfhelp.com/html/linehan_dbt.html
Dimeff, L. & Linehan, M.M. (2001). Dialectical behavior therapy in a nutshell. The California Psychologist, 34, 10-13. www.nelft.nhs.uk/_documentbank/DBTinaNutshell.pdf.