Advocacy Advocacy for People with Borderline Personality Disorder ANAND PANDYA, MD
Although many of the largest and best known consumer and family mental health advocacy organizations do not restrict themselves to a single diagnosis, over the last few decades an increasing number of disease-specific mental health advocacy organizations have emerged. This column describes the development of a movement advocating for consumers and families affected by borderline personality disorder (BPD) as an example of two trends in the mental health advocacy field: closer ties between advocacy and professional groups and specialization to better address the different needs created by different diagnoses. (Journal of Psychiatric Practice 2014;20:68–70) KEY WORDS: borderline personality disorder, advocacy, National Education Alliance Borderline Personality Disorder (NEA BPD), Treatment and Research Advancements—National Association for Personality Disorders (TARA APD), New England Personality Disorder Association (NEPDA)
Many of the largest and best known consumer and family mental health advocacy organizations, such as the National Alliance on Mental Illness (NAMI), Mental Health America (MHA), the American Foundation for Suicide Prevention (AFSP), and the Depression Bipolar Support Alliance (DBSA) do not restrict themselves to a single diagnosis but rather focus on a range of mental disorders. This “big tent” approach has several advantages. It allows these organizations to continue to serve individuals who receive different diagnoses over time. It produces an economy of scale that permits a more powerful political voice and more effective public relations. It also reduces the population density that is necessary to reach critical mass for local meetings in smaller communities. However, over the last few decades, an increasing number of disease-specific mental health advocacy organizations have emerged. The development of a movement advocating for consumers and families affected by borderline personality disorder (BPD) serves as an example of two trends in the mental
68
January 2014
health advocacy field: closer ties between advocacy and professional groups and specialization to better address the different needs created by different diagnoses. Historical Context As recently as the 1990s, a level of stigma related to BPD persisted even in psychiatric institutions that had become highly sensitized to consumer and family perspectives through their close relationships with advocacy organizations. I can vividly recall receiving sign-outs early in my career and hearing clinicians referring to some suicidal patients as “just borderline” with a dismissive tone that implied that one’s limited capacity for compassionate attention would be better budgeted out to some other suicidal patient who did not have this diagnosis. Although some such comments may have been simple acknowledgments of the limited therapeutic tools that were available for the treatment of this disorder at that time, I can also recall clinicians complaining about coworkers who were “so borderline” with a level of impatience and contempt. The tone of such comments made it clear that the term “borderline” was understood to be an insult, even though at that time it would already have been considered insensitive—if not completely unacceptable—for mental health professionals to refer to someone’s psychosis in such a pejorative way. “Aside from blaming the patient, there was also a culture to blame the family member as well” recalls James Hall, an advocate active in NAMI and the Executive Vice President of the National Education Alliance Borderline Personality Disorder (NEA BPD). Given such negative attitudes held by some mental health professionals, it is not surprising that families had relatively little understanding of the condition affecting their relative with BPD and that Anand Pandya, MD: Associate Clinical Professor, Department of Psychiatry and Behavioral Neurosciences, UCLA School of Medicine, Los Angeles, CA. Sources of support: Dr. Pandya works as a consultant for the National Alliance on Mental Illness. DOI: 10.1097/01.pra.0000442941.93855.25
Journal of Psychiatric Practice Vol. 20, No. 1
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Advocacy those family members who had greater knowledge about BPD were more likely to feel more burdened and to report more depressive symptoms.1 It was in this context that the first advocacy organizations focused on BPD began. Perry Hoffman, President of NEA BPD, recalls that “When we [the advocates] first came together, there was very little optimism about recovery from BPD.” Although NEA BPD was formed in 2001, it was preceeded by two earlier organizations in the 1990s. In 1994, Valerie Porr formed TARA APD (Treatment and Research Advancements—National Association for Personality Disorders). Perry Hoffman recalls that, around the same time, John Gunderson began multi-family groups at Harvard for families affected by BPD, and NEPDA, the New England Personality Disorder Association, was formed in Boston. Hoffman's own initiative to provide training to families in dialectic behavioral therapy (DBT) skills coincides with the beginning of these early advocacy organizations.2 The Relationship Between Advocates and Mental Health Professionals Just as Adolf Meyer served as a charter member of Clifford Beers’ Mental Hygiene Movement,3 NEPDA benefitted from the early support of a prominent academic psychiatrist. Patricia Woodward, Treasurer of the NEA BPD, recalls that “NEPDA wouldn’t have gotten off the ground without John Gunderson.” However, the subsequent relationship between the BPD advocacy movement and mental health professionals differs from its predecessors. Both NAMI and the Mental Hygiene Movement gained early momentum fueled by outrage at abuse and neglect in the psychiatric system.4,5 In contrast, the organizations within the BPD advocacy movement appear to have maintained more collaborative and mutually respectful relationships with the provider community, emphasizing positive models. This approach may have enabled NEA BPD to receive 8 years of funding from the National Institute of Mental Health (NIMH) to support their annual conference beginning in 2003, just 2 years after it was founded. In 2012, NEA BPD was awarded the American Psychiatric Association Distinguished Service Award. As further evidence of the close relationship between the BPD advocacy movement and the community of mental health professionals, it is notable that the documents of incorporation for “NEA BPD Italy,” an organization
Journal of Psychiatric Practice Vol. 20, No. 1
seeking to replicate the NEA BPD model, were signed in September 2013 not in Italy but at the International Society for the Study of Personality Disorders Conference in Copenhagen. The period during which the BPD advocacy movement developed may have helped the movement avoid antagonism with the psychiatric establishment. NEA BPD emerged at a time when the organization could focus on many positive research developments concerning BPD and therefore it has not had to focus on examples of bad treatment. Robert Friedel described a sea change in attitudes toward BPD as a result of the synergistic effects of effective treatments (both pharmacologic and psychotherapeutic), empirical support for the biological basis of BPD (from genetic and neuroimaging studies), together with the new advocacy organizations.6 Although anti-BPD stigma is still commonplace, the combination of advocacy and research has sensitized many clinicians to have a more hopeful and blamefree approach to individuals and families struggling with BPD. Another notable feature of the BPD advocacy movement has been the degree of collaboration with existing advocacy organizations, most notably NAMI. When James Hall and his wife Diane were first confronted with their daughter’s mental illness, the resources of NEA BPD were not available to them and therefore they received help from NAMI. Although NAMI only added BPD to its focus many years later (in 2006), Jim Hall recalls, “We were quite warmly received. I did not feel the stigma. We were welcome but not generally well understood. Generally people are puzzled [by BPD] so we have been working with Joyce Burland [the author of the NAMI Family-to-Family course] to incorporate more about BPD.” Specialization and Adaptation NEA BPD has developed its own family education course, Family Connections, modeled after the NAMI Family-to-Family course. As with the NAMI Familyto-Family course, Family Connections is a 12-week, 2 hour/week course that is usually co-led by two family members who have lived experience with BPD through an affected relative. Unlike NAMI Familyto-Family, NEA BPD has also trained healthcare providers to serve as leaders of the Family Connections course, blurring the line between peer
January 2014
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
69
Advocacy support and the professional-led multi-family group model that was pioneered by Gunderson. Despite the efforts to replicate the NEA BPD model in Europe, it is unlikely that NEA BPD will ever have the broad reach of “big tent” advocacy organizations such as NAMI. Thus, by collaborating on the development of material on BPD to be included in NAMI materials, NEA BPD has developed a strategy for reaching many individuals who would not be able to take Family Connections in their community. In recognition of the limited distribution of NEA BPD’s more specialized course, a TeleConnections course, an adaptation of the Family Connections course conducted via a weekly conference call, has also been developed. Conclusion Through such adaptations and through strong collaborations, the BPD advocacy movement has made considerable progress in a relatively short period of time. In 2006, NAMI and NEA BPD convened a joint expert focus group. In 2008, NAMI and NEA BPD partnered to obtain Congressional recognition of May as Borderline Personality Disorder Awareness Month through House Resolution 1005.7 More recently, in 2010, NAMI, NEA BPD, and NIMH collaborated on a Congressional briefing on BPD and, in 2011, NEA BPD, NAMI, NIMH, and SAMHSA cosponsored a Federal Partners Meeting to educate
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various government agencies about BPD. Given the relatively small size of NEA BPD, these accomplishments suggest that the mental health advocacy field may benefit from further consideration of advocacy organizations that maintain consistent and close ties to the provider community and the ramifications of more disease-specific specialization.
References 1. Hoffman PD, Buteau E, Hooley JM, et al. Family members’ knowledge about borderline personality disorder: Correspondence with their levels of depression, burden, distress, and expressed emotion. Fam Process 2003;42: 469–78. 2. Hoffman PD, Fruzzetti AE, Swenson CR. Dialectic behavioral therapy—Family skills training. Family Process 1999;38:399–414. 3. Alexander FG, Selesnick ST. The history of psychiatry: An evaluation of psychiatric thought and practice from prehistoric times to the present, first edition. New York: Harper & Row; 1966. 4. Beers CW. A mind that found itself: An autobiography. New York: Longmans, Green and Co; 1908. 5. Torrey EF, Wolfe SM, Flynn L. Care of the seriously mentally ill: A rating of state programs, second edition. Washington, DC: NAMI; 1988. 6. Friedel RO. Early sea changes in borderline personality disorder. Curr Psychiatry Rep 2006;8:1–4. 7. House Resolution 1005 (110th Congress): Supporting the goals and ideals of Borderline Personality Disorder Awareness Month. April 1, 2008 (available at www.govtrack.us/congress/bills/110/hres1005/text, accessed December 28, 2013).
Journal of Psychiatric Practice Vol. 20, No. 1
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Although many of the largest and best known consumer and family mental health advocacy organizations do not restrict themselves to a single diagnosis, over the last few decades an increasing number of disease-specific mental health advocacy organizations have emerged. This column describes the development of a movement advocating for consumers and families affected by borderline personality disorder (BPD) as an example of two trends in the mental health advocacy field: closer ties between advocacy and professional groups and specialization to better address the different needs created by different diagnoses. (Journal of Psychiatric Practice 2014;20:68–70) KEY WORDS: borderline personality disorder, advocacy, National Education Alliance Borderline Personality Disorder (NEA BPD), Treatment and Research Advancements—National Association for Personality Disorders (TARA APD), New England Personality Disorder Association (NEPDA)
Many of the largest and best known consumer and family mental health advocacy organizations, such as the National Alliance on Mental Illness (NAMI), Mental Health America (MHA), the American Foundation for Suicide Prevention (AFSP), and the Depression Bipolar Support Alliance (DBSA) do not restrict themselves to a single diagnosis but rather focus on a range of mental disorders. This “big tent” approach has several advantages. It allows these organizations to continue to serve individuals who receive different diagnoses over time. It produces an economy of scale that permits a more powerful political voice and more effective public relations. It also reduces the population density that is necessary to reach critical mass for local meetings in smaller communities. However, over the last few decades, an increasing number of disease-specific mental health advocacy organizations have emerged. The development of a movement advocating for consumers and families affected by borderline personality disorder (BPD) serves as an example of two trends in the mental
68
January 2014
health advocacy field: closer ties between advocacy and professional groups and specialization to better address the different needs created by different diagnoses. Historical Context As recently as the 1990s, a level of stigma related to BPD persisted even in psychiatric institutions that had become highly sensitized to consumer and family perspectives through their close relationships with advocacy organizations. I can vividly recall receiving sign-outs early in my career and hearing clinicians referring to some suicidal patients as “just borderline” with a dismissive tone that implied that one’s limited capacity for compassionate attention would be better budgeted out to some other suicidal patient who did not have this diagnosis. Although some such comments may have been simple acknowledgments of the limited therapeutic tools that were available for the treatment of this disorder at that time, I can also recall clinicians complaining about coworkers who were “so borderline” with a level of impatience and contempt. The tone of such comments made it clear that the term “borderline” was understood to be an insult, even though at that time it would already have been considered insensitive—if not completely unacceptable—for mental health professionals to refer to someone’s psychosis in such a pejorative way. “Aside from blaming the patient, there was also a culture to blame the family member as well” recalls James Hall, an advocate active in NAMI and the Executive Vice President of the National Education Alliance Borderline Personality Disorder (NEA BPD). Given such negative attitudes held by some mental health professionals, it is not surprising that families had relatively little understanding of the condition affecting their relative with BPD and that Anand Pandya, MD: Associate Clinical Professor, Department of Psychiatry and Behavioral Neurosciences, UCLA School of Medicine, Los Angeles, CA. Sources of support: Dr. Pandya works as a consultant for the National Alliance on Mental Illness. DOI: 10.1097/01.pra.0000442941.93855.25
Journal of Psychiatric Practice Vol. 20, No. 1
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Advocacy those family members who had greater knowledge about BPD were more likely to feel more burdened and to report more depressive symptoms.1 It was in this context that the first advocacy organizations focused on BPD began. Perry Hoffman, President of NEA BPD, recalls that “When we [the advocates] first came together, there was very little optimism about recovery from BPD.” Although NEA BPD was formed in 2001, it was preceeded by two earlier organizations in the 1990s. In 1994, Valerie Porr formed TARA APD (Treatment and Research Advancements—National Association for Personality Disorders). Perry Hoffman recalls that, around the same time, John Gunderson began multi-family groups at Harvard for families affected by BPD, and NEPDA, the New England Personality Disorder Association, was formed in Boston. Hoffman's own initiative to provide training to families in dialectic behavioral therapy (DBT) skills coincides with the beginning of these early advocacy organizations.2 The Relationship Between Advocates and Mental Health Professionals Just as Adolf Meyer served as a charter member of Clifford Beers’ Mental Hygiene Movement,3 NEPDA benefitted from the early support of a prominent academic psychiatrist. Patricia Woodward, Treasurer of the NEA BPD, recalls that “NEPDA wouldn’t have gotten off the ground without John Gunderson.” However, the subsequent relationship between the BPD advocacy movement and mental health professionals differs from its predecessors. Both NAMI and the Mental Hygiene Movement gained early momentum fueled by outrage at abuse and neglect in the psychiatric system.4,5 In contrast, the organizations within the BPD advocacy movement appear to have maintained more collaborative and mutually respectful relationships with the provider community, emphasizing positive models. This approach may have enabled NEA BPD to receive 8 years of funding from the National Institute of Mental Health (NIMH) to support their annual conference beginning in 2003, just 2 years after it was founded. In 2012, NEA BPD was awarded the American Psychiatric Association Distinguished Service Award. As further evidence of the close relationship between the BPD advocacy movement and the community of mental health professionals, it is notable that the documents of incorporation for “NEA BPD Italy,” an organization
Journal of Psychiatric Practice Vol. 20, No. 1
seeking to replicate the NEA BPD model, were signed in September 2013 not in Italy but at the International Society for the Study of Personality Disorders Conference in Copenhagen. The period during which the BPD advocacy movement developed may have helped the movement avoid antagonism with the psychiatric establishment. NEA BPD emerged at a time when the organization could focus on many positive research developments concerning BPD and therefore it has not had to focus on examples of bad treatment. Robert Friedel described a sea change in attitudes toward BPD as a result of the synergistic effects of effective treatments (both pharmacologic and psychotherapeutic), empirical support for the biological basis of BPD (from genetic and neuroimaging studies), together with the new advocacy organizations.6 Although anti-BPD stigma is still commonplace, the combination of advocacy and research has sensitized many clinicians to have a more hopeful and blamefree approach to individuals and families struggling with BPD. Another notable feature of the BPD advocacy movement has been the degree of collaboration with existing advocacy organizations, most notably NAMI. When James Hall and his wife Diane were first confronted with their daughter’s mental illness, the resources of NEA BPD were not available to them and therefore they received help from NAMI. Although NAMI only added BPD to its focus many years later (in 2006), Jim Hall recalls, “We were quite warmly received. I did not feel the stigma. We were welcome but not generally well understood. Generally people are puzzled [by BPD] so we have been working with Joyce Burland [the author of the NAMI Family-to-Family course] to incorporate more about BPD.” Specialization and Adaptation NEA BPD has developed its own family education course, Family Connections, modeled after the NAMI Family-to-Family course. As with the NAMI Familyto-Family course, Family Connections is a 12-week, 2 hour/week course that is usually co-led by two family members who have lived experience with BPD through an affected relative. Unlike NAMI Familyto-Family, NEA BPD has also trained healthcare providers to serve as leaders of the Family Connections course, blurring the line between peer
January 2014
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
69
Advocacy support and the professional-led multi-family group model that was pioneered by Gunderson. Despite the efforts to replicate the NEA BPD model in Europe, it is unlikely that NEA BPD will ever have the broad reach of “big tent” advocacy organizations such as NAMI. Thus, by collaborating on the development of material on BPD to be included in NAMI materials, NEA BPD has developed a strategy for reaching many individuals who would not be able to take Family Connections in their community. In recognition of the limited distribution of NEA BPD’s more specialized course, a TeleConnections course, an adaptation of the Family Connections course conducted via a weekly conference call, has also been developed. Conclusion Through such adaptations and through strong collaborations, the BPD advocacy movement has made considerable progress in a relatively short period of time. In 2006, NAMI and NEA BPD convened a joint expert focus group. In 2008, NAMI and NEA BPD partnered to obtain Congressional recognition of May as Borderline Personality Disorder Awareness Month through House Resolution 1005.7 More recently, in 2010, NAMI, NEA BPD, and NIMH collaborated on a Congressional briefing on BPD and, in 2011, NEA BPD, NAMI, NIMH, and SAMHSA cosponsored a Federal Partners Meeting to educate
70
January 2014
various government agencies about BPD. Given the relatively small size of NEA BPD, these accomplishments suggest that the mental health advocacy field may benefit from further consideration of advocacy organizations that maintain consistent and close ties to the provider community and the ramifications of more disease-specific specialization.
References 1. Hoffman PD, Buteau E, Hooley JM, et al. Family members’ knowledge about borderline personality disorder: Correspondence with their levels of depression, burden, distress, and expressed emotion. Fam Process 2003;42: 469–78. 2. Hoffman PD, Fruzzetti AE, Swenson CR. Dialectic behavioral therapy—Family skills training. Family Process 1999;38:399–414. 3. Alexander FG, Selesnick ST. The history of psychiatry: An evaluation of psychiatric thought and practice from prehistoric times to the present, first edition. New York: Harper & Row; 1966. 4. Beers CW. A mind that found itself: An autobiography. New York: Longmans, Green and Co; 1908. 5. Torrey EF, Wolfe SM, Flynn L. Care of the seriously mentally ill: A rating of state programs, second edition. Washington, DC: NAMI; 1988. 6. Friedel RO. Early sea changes in borderline personality disorder. Curr Psychiatry Rep 2006;8:1–4. 7. House Resolution 1005 (110th Congress): Supporting the goals and ideals of Borderline Personality Disorder Awareness Month. April 1, 2008 (available at www.govtrack.us/congress/bills/110/hres1005/text, accessed December 28, 2013).
Journal of Psychiatric Practice Vol. 20, No. 1
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
