The 'Surplus Stigma' of Borderline Personality Disorder
I wrote the following to spread awareness on the reality and stigma of borderline personality disorder (BPD). A trigger warning may be needed if you have BPD.
A while ago at school, I overheard borderline personality disorder brought up in a conversation between a social worker and some students. I casually lingered to hear the discussion. Within moments, the social worker loudly declared those with BPD are “borderline human” and will “fake pain to manipulate others.” Next, he exclaimed, “I can smell borderlines from a mile away!”
I immediately left the building crying and thoughts spiraled through my head. “Is that what they really think of me? Haven’t they ever thought about what this pain is like through my eyes?”
Another encounter occurred in one of my mental health classes. The instructor thoroughly outlined causes, symptoms, and treatment of depression disorders, anxiety disorders, schizophrenia, bipolar disorders, eating disorders, and various other mental illnesses. When it came to people with BPD, however, they were described as manipulative and untreatable. On the test, a true or false question read, “Personality disorders respond to treatment.” I had to answer false to receive credit, when deep down I knew research shows at least 80 percent manage symptoms from the proper treatment, though some functional impairments persist.
I can recall yet a third individual who noted we are “scary borderlines.” I have been denied services, minimized, and overlooked through my attempts to find treatment.
Two international researchers perfectly describe what I, and many others with BPD, face with the stigma. In the book “Beyond Borderline: True Stories of Recovery from Borderline Personality Disorder,” John G. Gunderson MD and Perry D. Hoffman PhD., explain:
Seldom does an illness, medical or psychiatric, carry such intense stigma and deep shame that its name is whispered, or a euphemism coined, and its sufferers despised and even feared. Perhaps leprosy or syphilis or AIDS fits this category.
Borderline personality disorder (BPD) is such an illness. In fact, it has been called “the leprosy of mental illnesses” and the disorder with “surplus stigma.” It may actually be the most misunderstood psychiatric disorder of our age.
For many years, clinicians spoke and wrote in pejorative terms about patients diagnosed with the disorder as “the bane of my existence,” “a run for my money,” “exhausting,” or “treatment rejecting.” In fact, professionals have often declined to work with people diagnosed with BPD. This rejection by professionals, which has seemed at times almost phobic, has spanned many decades.
The literature repeatedly refers to BPD patients as manipulative, treatment resistant, raging, or malignant, they conclude.
BPD stigma spreads outside clinical settings. Within seconds of searching online, stigmatizing or misleading articles, posts, and videos take over the screen. The term “borderline personality” is often wrongly used to describe violent, harsh, dangerous or “crazy” individuals in media or news reports.
One of the first books I skimmed for a college research paper on BPD was no different. Largely quoted on one of the pages read, “I have never met a borderline patient that I actually liked.”
I have even suffered from death threats and harassment on my blog, just because I have BPD.
Often, people may undermine the symptoms of living with a mental illness and the stigma that comes with it. I am cut short by remarks that invalidate my experiences and the reality of my symptoms. “Doesn’t everyone get angry?” “I got angry the other day—maybe I have it! “Don’t we all experience some stigma and maltreatment in life?” These ideas serve as a form of stigma in their own way. They reframe severe illnesses as nothing more than a problem with weakness, willpower, and an inability to handle what other people can. Some comments are not far from when people say they understand what it is like to have a severe chronic illness because they have had a cold or felt tired before.
I feel like I am trapped in a house alone with my BPD, isolated from the outside world. If I peak my eyes through a window, I see others met with support and understanding as they disclose their bad days, anxieties, or sorrows. But if I disclose my BPD, my symptoms are viewed as an overreaction, scary, needy, or minimized. I don’t know what it is like outside of this window. I feel like I cannot step outside of this “borderline” because those around me will not let me or accept me.
It is certainly not to say that other mental illnesses are not stigmatized or don’t result in difficulty. Rather, mental health awareness cannot stop at more stigmatized, severe mental illnesses, whose symptoms are demonized and different from other more common mental illnesses, like BPD or schizophrenia.
Research to help shed light on the BPD stigma shows these attitudes may hinder the progress made in treatment and damage the doctor-patient relationship. This leads to further consequences. Stigma puts a barrier on mental health resources for BPD. If an illness is viewed so harshly, people who have it may be less likely to reveal struggles and seek out treatment. The negative views against BPD have not only held me back from seeking out services and treatment, but it has horribly triggered my symptoms, heightened my self-hatred, and fueled the painful thoughts and paranoia.
It is true many professionals may lack the skills or background needed to treat a specific group of severe patients, especially considering mental health care lacked tools to treat BPD for a long time. Yet, the negative assumptions and attitudes are problematic regardless. It is clearly not helpful to the clinician or patient, nor is it necessary, to continue to associate BPD to such negativity.
Unfortunately, there are many mental health professionals and people who have the disorder who simply do not understand BPD or even acknowledge it. BPD is in dire need of understanding. It has been estimated multiple times that up to one out of 10 of those with the disorder die by suicide, and up to eight out of ten attempt suicide an average of three times.
Despite the severity, people with BPD are treated like the blacklist of mental health. As a psychology student myself, I aim to draw upon my experiences and passion for psychology to help treat, advocate, and raise awareness for personality disorders. My own struggle certainly serves as inspiration and motivation, but I also lost my best friend and martial arts mentor who had BPD. I loved him with all that is within me — he was the epitome of patience, compassion and kindness, but he endured emotions through such intense pain. One night, the message replies stopped. Silence. My best friend died by suicide. I never heard his voice in the present moment voice again.
He was a mental health worker who helped me make it through my days. After I enrolled in college, my love for psychology and writing expanded even more, and I finalized my decision — I will make a difference to others in similar situations, I will keep his memory alive, and I will pursue the career that I love.
Thankfully, the stigma, myths, and misunderstandings of BPD have been refuted and pointed out by numerous professionals. They have provided evidence-based treatments and models that improve the outcome of the disorder and spread awareness.
Much like some initial responses to the AIDS epidemic, some people try to propose a proper solution to this stigma is to “eliminate” the idea of the disorder or accuse the existence of it to serve only as means to stigmatize a group of people. If we are to make any progress on the research, treatment, and understanding of this very real disorder, we need proper awareness and education, not erasure. We do not need people to fight the stigma by perpetuating even more stigma through minimization and erasure, but rather, we need a real understanding of the science and reality behind BPD. We need to deny this idea of stigma, not deny the very presence, reality, and science of this disorder and those of us who live with it.
Dr. Marsha Linehan’s widely used model of BPD truly captures the essence of the disorder and how at its core, BPD has to do with the limbic system and emotional vulnerability. She created a highly effective BPD treatment known as dialectical behavior therapy.
Borderline personality disorder causes emotional, behavioral, interpersonal, cognitive, and identity symptoms. It is a serious, chronic mental illness characterized by hypersensitive emotions, intense emotional reactivity, and a slow return to emotional baseline.
The hypersensitivity means emotions are easily aroused and may occur from ordinary circumstances that do not typically bother someone without the disorder. The reactions are then noticeably intense and evoke grief instead of sadness, humiliation instead of embarrassment, rage instead of annoyance and panic instead of nervousness. Positive emotions, such as great joy, may also occur easily. Lastly, the slow return to baseline means it may take longer to level out and heal from an emotion. This instability and sensitivity is better explained as a natural range of emotion across various contexts, as opposed to mood episodes or periods of worry or stress.
With this underlying model in mind, specific symptoms consist of extreme reactions and preoccupations toward real or perceived abandonment, rejection, and slights, reoccurring self-harm and suicidal ideations, impulsiveness, chronic emptiness, intense anger, and a distorted sense of identity, self-direction, and image. Splitting in BPD can be broadly explained as extreme shifts between positive and negative thought patterns, because a whole picture is not integrated in the mind. Other symptoms include dissociation, paranoid ideation, and transient hallucination experiences. What seems like typical events to others, such as a brief separation or perceived failure on an ordinary task, may instantly stimulate BPD symptoms.
As Linehan said, “… borderline individuals are the psychological equivalent of third-degree burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering. Yet… life is movement.”
With the heart palpitations, the emotional shocks through my body, and the trembling, numb fingers that occur at the hint of an emotion, the stigma and misunderstanding only adds more pain and shame. It secludes us from the help we need. Don’t be the one to perpetuate stigma and misunderstanding. My emotions may be extreme, but I have been repeatedly told they make me passionate, energetic and beautiful.