Stigma against those with Borderline Personality Disorder (BPD) is endemic and rampant in the medical and mental health professionals. Such stigma is often expressed overtly as well as subtly to patients, impacting their care in dramatic ways.
This stigma needs to stop and it needs to start with not only the public but with providers of all kinds assessing their biases and misunderstandings of this illness and taking responsibility for their actions.
Here I present the research on the most pertinent research surrounding this issue.
The Most Stigmatized Disease
“There may be no other psychiatric diagnosis more laden with stereotypes and stigma than borderline personality disorder.”17
The overwhelming majority of studies indicate mental health clinicians have “negative perceptions of and emotional responses towards patients with BPD.”18 For instance, providers “have been shown to view those with a personality disorder as ‘less compliant,’ ‘less likable’ and ‘more stressful’ to deal with.”4
This is in contrast to other mental health illnesses that “do not usually elicit comparable negative responses to both the patient and to the diagnosis.”10 Unlike schizophrenia and depression, providers view people with BPD “more negatively (i.e., more dangerous, more likely to be socially distanced by the professional)” and respond to them with less empathy7 and in a manner that is “more likely to be belittling, contradictory, or less empathetic.”18
And this is within the mental health provider community itself. Even therapists “hold significantly more negative attitudes, particularly in regards to treating, comfort in treating, and belief that treatment would result in improvement when a person was referred to as ‘borderline’…”6 Furthermore, mental health professionals indicate that patients with BPD generate negative feelings within them including “ feeling uncomfortable, anxious, challenged, frustrated, manipulated, apathetic, and less caring” and further often have “feelings of frustration, inadequacy.”18 Even psychiatrists have “a tendency to view for patients with [personality disorders] negatively.”4
The language describing those with BPD speaks volumes about the stigma inherent in providers and their training. For instance, “pejorative terms used by clinicians to describe BPD including ‘not sick,’ ‘manipulative,’ ‘hateful,’ and ‘angry, noncompliant.’”10
Providers own statements demonstrate that they believe having patients with BPD is “difficult” and “undesirable.”20 For example, providers have stated:
- “In professional circles, borderline is often synonymous with ‘pain in the ass.’”20
- “Well, they’re probably like the least popular patients to work with. Most people don’t like working with them. It’s too much work.”20
- “I know it’s going to be difficult to interact with them… they’ll probably get on my nerves.”20
- “They’re very taxing…”20
- “Not a lot of rewards come from beating your head against the wall with someone.”20
- “Patients are usually high strung and easily tipped off.”22
- “They are a waste of my time.”22
- “The create crisis for themselves and significant others”22
And this language starts from the very education of mental health professionals. In one study, on the education of social workers, the students noted:
- One person stated that BPD had been initially presented “almost as a joke. Someone said something and my professor said ‘oh yup that’s majorly Borderline’.”9
- Another was taught “If you had BPD you would be “screwed” for lack of a better word. You would be deeply unlikable, and most likely un-treatable.”9
- Another relates her experience learning “that they are very challenging to work with, and that as a clinician, you will generally need to “manage” them as opposed to expecting “real” progress.”9
Understanding BPD, Misunderstanding Manipulation
BPD is a complex diagnosis that is unique to each individual – each of who will have different presentations of the disease and histories living with the disease. Furthermore, study after study on BPD shows that this is not just a behavioral disorder but is one that is based in the very neurological and chemical structures of the brain.
Providers often use the stigmatizing language that those with BPD are “manipulative” or “attention seeking.” A perfect example is a provider who states: “I have found people with BPD to be manipulative and I wonder if… BPD is just an excuse for bad behavior and nastiness.”22
Not only are these NOT a part of the diagnosis, they come from a place of grave misunderstanding. Applying those terms to any person with BPD needs to end. They are derogatory, demeaning, devaluing, and dehumanizing, and only serve to place judgment on those who are suffering. “The word “manipulation” functions as a shaming device, framing patient behaviour as moral badness rather than sickness and making the patient personally responsible for symptomatic behaviour.”20
Such misunderstandings around the nature of BPD as an illness leads Many providers [to] consider those with BPD manipulative and not “truly sick.”20 They seem “to believe patients use a high level of intellectual involvement in orchestrating their deviant behaviours, rather than unintentionally acting out of their sickness.”20 In extreme, labeling a person with BPD as “manipulative” allows a provider to dismiss a patient as not really sick at all but to be seen as “morally suspect people.”20 This in turn may serve to exclude them from the very care they need as will be discussed below.
Providers must realize that often people with BPD “they are in excruciating pain that is almost always discounted by others and attributed to bad motives.”2 However, “It is rare that a person with BPD is actually trying to ‘manipulate,’ that is, to manage, control or influence in a subtle, devious, or underhanded manner; or to handle with mental or intellectual skill.”16 Rather, given that “Folks with BPD are usually not skillful in their interpersonal communication styles,… they often can only express their emotional pain by screaming out how much they want to be dead, which is likely true.”16 And while many see Self-harm or threats of suicide as attention seeking or manipulative, such overt expressions are “certainly not subtle or devious” as the definition of manipulation requires.16 Simply said, the term manipulation “implies that [those with BPD] are skilled at managing other people when it is precisely the opposite that is true.”12
More importantly, self-harm “ regulates emotions for many” as they try to cope with the intrapsychic pain inside.16 At times, people with BPD may not have the “ sufficient interpersonal skills, emotional and self-regulation capacities (including the ability to regulate biological systems)” to tolerate distress.15 And those issues may be exacerbated by additional “personal and environmental factors [that] block coping skills and interfere with self-regulation abilities the individual does have.”15
Often the idea that a person with BPD is “manipulative” comes from a person’s (including the therapist’s or loved one’s) “own feelings of being manipulated.”14 “However, it is a logical error to assume that if a behavior has a particular effect, the actor has therefore engaged in the behavior in order to bring about the effect. The labeling of suicidal behavior as manipulative, in the absence of an assessment of the actual intent of the behavior, can have extremely deleterious effects.”14 In other words, manipulation “the fact that the therapist may feel manipulated does not necessarily imply that this was the intention of the patient. It is more probable that the patient did not have the skills to deal with the situation more effectively.”12
The truth is, providers need to realize that “We can all be ‘needy’ when those needs are not being met. People with BPD often have large scale, unmet needs, often the result of traumatic, abusive, and chaotic environments. They often have unmet therapeutic needs, as well, often attributable to not receiving effective, evidence-based treatment. All of us need ‘attention.’ People with BPD may have real problems that elevate the amount of attention they need. They may have poor skills that cause people to withhold attention or give them painful attention. Finally, ‘manipulative’ is the term most misused in this case. All of us, from birth, manipulate the environment to get our needs met. Usually, people with BPD behave in ways that encourage people in their environment to withhold things from them and mistreat them (and often they are in abusive environments to begin with…). They are often the opposite of manipulative, as they are usually impaired at getting their environments to respond to them.”5
Impact Stigma has on Care
All aspects of care are affected by this stigma, from the very provision of services, to how they are treated in different care settings.
Exclusion of services
“Lack of understanding about BPD may lead to stigmatization and exclusion of services.”23
Stigmatizing clinician beliefs that patients with BPD are difficult and possibly at fault for their behaviours often results in providers “passively or actively deny care.”20 They do this in many ways including:
- Saying to people with BPD “you can’t really do treatment.”20
- Openly excluding BPD patients from care, e.g., “I won’t put any borderlines on my case, are you crazy? Are you nuts?”20
- Overtly and actively pruning patients. For example, psychiatrists will fire their clients because the psychiatrist thinks they have BPD, e.g., “How do I treat BPD? I try to find another clinician (laughter).”20
- Setting “inflexible ground rules for patients with BPD or having them sign a behavior contract that was not required with other clients, setting up such rigid conditions, and obviously making such rigid judgments about their behaviour so that the patient felt so insulted leading to the termination of treatment.”20
This again is echoed in the language of providers themselves, as one provider said, “You wouldn’t believe how many THERAPISTS speak so disparagingly about ‘borderlines’ and say how they try to avoid having them as clients.”23
And because some providers label those with BPD as “manipulative” and thus “not really sick” some providers find that they do not “truly need [the provider’s] medical help.”20 Moreover, if the person is seen as not really sick, they are “no longer entitled to the benefits that follow such as sympathy or health care,” and to that end, “Clinicians may then wash their hands” of them.20
And even if patients do receive care, that care is often worse or can do more damage.
Because of the stigma surrounding BPD, there is a lack of compassion such that “The diagnosis of borderline personality disorder has become a pejorative label for difficult patients and suggests that staff may provide stereotypic responses and less empathic care to borderline patients than to other patients.”8
More specifically, “patients whom clinicians disprefer and are less eager to treat (like those with BPD) may be more likely to slip through the cracks of the system, less likely to receive the personal investment of their providers, and overall receive worse care.”20 In Emergency departments, the “staff attitudes toward [patients with BPD] are frequently negative when compared to patients with other diagnoses, and can detrimentally affect outcomes and perpetuate stigma regarding BPD.”11 As one provider said, “Once labelled as BPD, it is hard for a patient to be given an objective assessment …”22
And nurses who find patients with BPD “challenging to work with” and whose attitudes are objectively poorer to those with BPD than other towards other diagnostic groups may respond in such a way that is “counter-therapeutic.”3
Even the anticipation of stigma from providers “has been identified as a factor in people’s reluctance to seek help for a mental illness.”13 Furthermore, this stigma may also result in “Compromised patient-provider relationships and early termination of treatment.”13
This care affects not only mental health but physical health as providers who treat those with mental illness are likely to not take physical symptoms taken seriously and to misattribute physical symptoms to a person’s mental illness and thus not treat the actual physical issue for which they are seeking care.13
Because of the stigma around BPD, many providers won’t disclose or document the diagnosis of BPD which can result in delaying the appropriate treatment for those with BPD. On study found that 57% of psychiatrists failed to disclose BPD and 37% said they did not document the diagnosis, mostly due to stigma.19
Providers believe that “by not using the BPD label they were acknowledging or sidestepping the stigma of the condition. However, from the perspective of patients, open communication was essential for maintaining a therapeutic relationship.”21 Instead many will withhold the diagnosis of BPD in favor of Axis I diagnosis like depression and anxiety or PTSD or they favor a “euphemistic diagnosis” which only served to confuse patients and “prevents a patient from fully understanding their condition.”21
“The results of the lack of direct communications limit[s] patients’ ability to be agents in their own care and to maintain ongoing therapeutic relationships with providers.”21 Furthermore, “A patient who receives a euphemistic label cannot look up their diagnosis…, they cannot research treatment options, and they are also denied an opportunity to question or name their condition, which may be important to their identity.”21
“The paternalistic believe that patients are not always capable of being full agents in their own treatment is a carry-over from turn-of-the-century medical practice. This perspective has been increasingly contested by literature on the importance of participatory communication between clinicians and patients regarding their diagnosis, treatment, and medication side effects, among other components of care.”21 Thus while providers “may be well-intentioned”21 not only does withholding a diagnosis contribute in its own way to reinforcing the stigma surrounding BPD, it may in fact impede the recovery of persons with BPD.
People with PBD experience “social injustices in the form of stigmatization and prejudice, delayed diagnosis and misdiagnosis, limited access to care and/or qualified healthcare providers, and lack of a cure.”23
What Can Be Done?
Recognizing Patients’ Efforts
First, providers must realize that those with BPD want to get well and deserve compassion. “People with BPD have intense emotional pain—so much so that 3-10% of people with this disorder die by. Nearly everyone wants to recover.”5 “Given the chance, the majority of people with BPD are willing to try ANYTHING to get better.”23 Most individuals with BPD are “not affecting people’s lives negatively because they want to or because they’re trying to be manipulative, they just want the pain to go away.”20
As with the above sections, those with BPD are treated differently “when a patient with any other kind of severe and possibly terminal diagnosis gets worse, we do not blame them” instead “We look for better treatments and feel sympathy.”5 Yet often with those who have BPD providers will say something like “she clearly does not want to get well.”5 This language “blames a person for the disorder and lack of recovery, and simultaneously shifts the ‘blame’ away from treatment and system failure. It shifts power and responsibility for treatment away from the clinician.”5
Changing the Narrative
“Changing the narrative in cases like this may make the difference between a lifetime of unnecessary suffering and giving someone a life worth living.”5 “The language [providers] use to describe individuals has power”5 and when providers communicate with each other they “should be mindful of how our language communicates [their] thoughts”5 as that language may carry stigma that seeps through the culture. “It is important to remember that individuals require effective treatment and treatment with dignity.”5 “Without person-centered language and good resources, [providers] often lose sight of [their] goals.”5
Education and Training
Then providers must start addressing the systematic and endemic stigma around BPD. Most studies note that this stigma might come from a “lack of education and training about how to understand, approach and treat the patient with BPD”11 This lack of training may “lead to feelings of anxiety or fear and a desire for avoidance and social/clinical distance among practitioners, which can negatively impact patient-provider interactions and quality of care” and “it can lead to less effective treatment and poorer outcomes.”13
To decrease stigma “evidence-based education about borderline personality disorder is necessary.”3 One such form of education can come in the form of “social contact” which is the practice of “hearing first-voice testimonies from people with lived experience of a mental illness.”13 In this way “people with lived experience of a mental illness are seen not as patients but as educators.”13 This type of education “has been shown to disconfirm stereotypes, diminish anxiety [in providers], heighten empathy, make personal connections, and improve understanding of recovery.”13
“Qualitative and theoretical models emphasize the importance of approaching stigma reduction with the goal of culture change.”13 As such research suggests that training for providers be more than “one-off programming” but “a sustained, integrated approach to target stigma from both outward- and inward-facing perspectives.”13 Training should incorporate “interventions that include myth busting” and “focus to target unconscious biases and correct false beliefs that may be negatively impacting care.”13
Providers Projecting Their Own Issues
“When people care about what happens to others, they do not want these others to suffer, but they cannot keep misfortune or suffering from happening; they are likely to blame the victims for their own misfortune and suffering.”14 Thus, providers who care but blame those with BPD also need to face their own issues and insecurities. As one study found “Psychiatrists’ own fear of death is associated with stronger negative attitudes toward BPD patients.”1
In addition, clinicians may be projecting their own sense of being overwhelmed and unsupported and their own feelings of helplessness about caring for people with BPD onto those very patients. In effect their own personal discomfort with treating BPD whether it come from lack of training and education and being unsure how to respond to patients, conflicts with treatment teams, or frustration with the inadequacies of the health system are projected onto those with BPD.22 Instead of recognizing that the lack of access to training, specialized providers, or enough treatment access available to meet the needs of those with BPD, clinicians will often assert that the patients are difficult.5
Borderline personality disorder is the most stigmatized disease. It is referred to in a derogatory fashion by providers across the spectrum. Much of this stigma comes in the form of accusing patients of being “manipulative” and “attention seeking” which convey a fundamental misunderstanding of the illness. This stigma has a negative impact on care. It can limit access to care in general and often results in poorer care. To combat this stigma, providers must recognize the efforts of those with BPD to get well and change the narrative. Providers must also engage in education and training which should work to create a culture change. And ultimately, the providers must look internally at their own issues to address them so they do not project them on those with BPD. Overall, it must be remembered:
“BPD sufferers want to be heard and not judged, and supported without being stigmatized.”23
- Bodner, E., Shrira, A., Hermesh, H., Ben-Ezra, M., & Iancu, I. (2015). Psychiatrists׳ fear of death is associated with negative emotions toward borderline personality disorder patients. Psychiatry Research,228(3), 963-965. doi:10.1016/j.psychres.2015.06.010.
- Brody, J. E. (2009). An Emotional Hair Trigger, Often Misread. The New York Times: Health: Personal Health. Quoting Marsha Linehan. Found at: http://www.nytimes.com/2009/06/16/health/16brod.html.
- Dickens, G. L., Lamont, E., & Gray, S. (2016). Mental health nurses’ attitudes, behaviour, experience and knowledge regarding adults with a diagnosis of borderline personality disorder: systematic, integrative literature review. Journal of Clinical Nursing,25(13-14), 1848-1875. doi:10.1111/jocn.13202.
- Doyle, M., While, D., Mok, P. L., Windfuhr, K., Ashcroft, D. M., Kontopantelis, E., Chew-Graham, C.A., Appleby, L., Shaw, J., Webb, R. T. (2016). Suicide risk in primary care patients diagnosed with a personality disorder: a nested case control study. BMC Family Practice,17(1). doi:10.1186/s12875-016-0479-y. Found at: https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0479-y.
- Erreger, S. & Foreman, A. (2016). “That’s So Borderline” – #LanguageMatters When Talking About Borderline Personality Disorder. The New Social Worker. Found at: http://www.socialworker.com/feature-articles/practice/that-s-so-borderline/.
- Fitzgerald, W. E. (2015). The effects psychiatric labels on psychotherapists attitudes towards potential clients with major mental illness. Massachusetts School of Professional Psychology.
- Fraser, K., & Gallop, R. (1993). Nurses’ confirming/disconfirming responses to patients diagnosed with borderline personality disorder. Archives of Psychiatric Nursing,7(6), 336-341. doi:10.1016/0883-9417(93)90051-w.
- Gallop, R., Lancee, W. J., & Garfinkel, P. (1989). How Nursing Staff Respond to the Label “Borderline Personality Disorder”. Psychiatric Services,40(8), 815-819. doi:10.1176/ps.40.8.815.
- Heightman, L.K. (2014) Origins of clinician bias against people diagnosed with borderline personality disorder. Smith Scholar Works. Theses, Dissertations, and Projects. Smith College. Found at: http://scholarworks.smith.edu/theses/802.
- Hersh, R. (2008). Confronting Myths and Stereotypes About Borderline Personality Disorder. Social Work in Mental Health,6(1-2), 13-32. doi:10.1300/j200v06n01_03. Citing Nehls, 1998.
- Hong, V. (2016). Borderline Personality Disorder in the Emergency Department. Harvard Review of Psychiatry,24(5), 357-366. doi:10.1097/hrp.0000000000000112.
- Kiehn, B., & Swales, M. (2015). An Overview of Dialectical Behaviour Therapy. Found at: http://www.priory.com/dbt.htm.
- Knaak, S., Mantler, E., & Szeto, A. (2017). Mental illness-related stigma in healthcare: Barriers to access and care and evidence-based solutions. Healthcare Management Forum,30(2), 111-116. doi:10.1177/0840470416679413. Found at: http://journals.sagepub.com/doi/full/10.1177/0840470416679413.
- Linehan, M. (1993). Cognitive-behavioral treatment of borderline personality disorder. New York: The Guilford Press.
- Linehan, M. (1997). Dialectical Behavior Therapy (DBT) for Borderline Personality Disorder. The JOURNAL of the NAMI California,8(1). Reprinted at: http://www.dbtselfhelp.com/html/linehan_dbt.html.
- Linehan, M. (2009). Expert Answers on Borderline Personality Disorder. Consults: New York Times Blog. Found at: http://consults.blogs.nytimes.com/2009/06/19/expert-answers-on-borderline-personality-disorder/.
- Nehls, N. (1998). Borderline Personality Disorder: Gender Stereotypes, Stigma, And Limited System Of Care.Issues in Mental Health Nursing,19(2), 97-112. doi:10.1080/016128498249105.
- Sansone, R. A., & Sansone, L. A. (2013). Responses of mental health clinicians to patients with borderline personality disorder. Innovations in Clinical Neuroscience, May-June(10), 5-6, 39-43. Found at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3719460/.
- Sisti, D. et al. (2016). Diagnosing, disclosing and documenting borderline personality disorder: A survey of psychiatrists’ practices. Journal of Personality Disorders.
- Sulzer, S. H. (2015). Does “difficult patient” status contribute to de facto demedicalization? The case of borderline personality disorder. Social Science & Medicine,142, 82-89. doi:10.1016/j.socscimed.2015.08.008.
- Sulzer, S. H., Muenchow, E., Potvin, A., Harris, J., & Gigot, G. (2015). Improving patient-centered communication of the borderline personality disorder diagnosis. Journal of Mental Health,25(1), 5-9. doi:10.3109/09638237.2015.1022253. Found at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4937878/.
- Treloar, A. J. (2009). A qualitative investigation of the clinician experience of working with borderline personality disorder. New Zealand Journal of Psychology,38(2), 30-34. Found at: http://www.psychology.org.nz/wp-content/uploads/NZJP-Vol382-2009-4-Commons-Treloar.pdf.
- Wehbe-Alamah, H., & Wolgamott, S. (2014). Uncovering the mask of borderline personality disorder: Knowledge to empower primary care providers. Journal of the American Association of Nurse Practitioners,26(6), 292-300. doi:10.1002/2327-6924. Found at: http://onlinelibrary.wiley.com/doi/10.1002/2327-6924.12131/full.