The 'Surplus Stigma' of Borderline Personality Disorder

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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 about depressionanxiety, schizophrenia, bipolar disorders, eating disorders, and the list goes on. When it came to BPD, however, it was 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 some research shows at least 80 percent improve from the proper treatment, even if some functional impairments persist.

I can recall yet a third individual who noted we are “scary borderlines” with a chuckle. As if this isn’t enough, I have been denied services, as I recounted in my first story. My symptoms have been minimized and overlooked through my attempts to find treatment.

Two international researchers perfectly describe what I, and many others diagnosed 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 often 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 are all over the screen. The term “borderline personality” is often incorrectly used to describe violent, harsh, dangerous or “crazy” individuals. In multiple horror-movies, such as “Fatal Attraction,” the portrayal of Alex has been described as a borderline personality.

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.”

Often, people may undermine the impact of living with a mental illness and the stigma that comes with it. I am often cut short by remarks that invalidate my experiences. My symptoms are trivialized or ignored because, “Everyone gets mad and sad/Maybe I have it because I get angry too!”

I have even suffered from death threats and harassment on my blog, just because I have BPD.

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.

Some research to help shed light on the BPD stigma show 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, those 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 still problematic. It is clearly not helpful to the clinician or patient, nor is it necessary, to continue to associate BPD to such negativity.

Undoubtedly, 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, those 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 life’s emotions through such intense pain. One night, the message replies stopped. Silence. My best friend had died by suicide. I never heard his voice in the present moment voice again.

He was a mental health worker who often 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 and myths 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.

Dr. Marsha Linehan’s widely used model of BPD truly captures the essence of the disorder and what we overcome every day. 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 shocks that emotions send through my body and the trembles and numb fingers that occur at the hint of an emotion, the stigma only adds more pain and shame. It secludes us from the help we need. Don’t be the one to perpetuate the stigma. My emotions may be extreme, but I have been repeatedly told they make me passionate, energetic and beautiful.

 

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How I Found My Strength After My Borderline Personality Disorder Diagnosis

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I’ve thought life was hard for as long as I can remember. I never really fit in. I flocked more towards adults growing up because they made me feel more secure, but I never thought I had a mental disorder.

In 2016, I was diagnosed with borderline personality disorder (BPD). Everything seemed to fall into place as far as understanding why I was the way I was, but the journey only got 10 times more difficult. Since I was now aware of my disorder, it made it harder to cope day to day. I knew I had this condition, but I couldn’t stop my emotions from raging or the thoughts of wanting to end my life. I couldn’t stop those feelings and lies that told me to leave my husband all the time or that I wasn’t good enough. I became more and more frustrated. And as each day passed, more times than not I wish I wouldn’t wake up.

My life changed when I was introduced to a dialectical behavior therapy (DBT) book. I was going to be a part of the DBT group, but no one else had BPD so I felt like more of an outcast. My husband and I decided to do it together in the comfort of our own home. As we read through the book and I filled out the exercises, a lot of life made more sense. But it was all about applying these skills to the situations you struggle with. That was the hardest part. Anyone can read this book and be enlightened by it, but can everyone apply these skills to day-to-day turmoil?

I soon realized I had to find the strength and determination that was inside me. I couldn’t rely on the books and the therapy and the medication alone to save me. I had to save me. I needed the strength to read the book. I needed the strength to go to therapy and talk about things I didn’t want anyone else to know. I needed the strength to take that pill every day — it all started with the want to change. None of those things could’ve helped change me if I wasn’t willing. And as each day comes and goes, I’ve learned more and more about myself and about living in this world. We all have the potential to find our inner strength, but it takes work. And unfortunately, we will be working at it our whole lives. But, that is what is so special about us.

We, as BPD survivors, know how to love deeply and connect in many awesome, unique ways. When we love something, we love that something. And when something makes us sad, we are sad. But, that is what shapes us in our lives. The experiences we go through and the multitude of work we have to get done can continue to make us stronger and stronger.

I think The Mighty is a site that can help millions around the world. I am so blessed to be a part of this so I too can post my story. I am a survivor of BPD and continue to survive every day. My prayers are with everyone who fights every day with an illness. Find the strength in you to fight it daily.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Merlas

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Researching My Wife's Borderline Personality Disorder

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I need to get this off my chest.

My wife was diagnosed with borderline personality disorder (BPD) a few years ago, so I did my research to see how I could help make her life and our relationship stronger and better for us both. Personally, I was horrified to see the massive amounts of negativity surrounding the condition — that I’m supposed to “run for the hills.”

I knew my wife had BPD before I married her. She gave me the option to leave, and still does after a bad day. I tell her I love her, how this condition is part of her and we’ll work through it. I will admit it has been a source of stress in our relationship, especially before I came to educate myself on the disorder. I’ve learned to take the time to chose my words wisely, to make sure I give her a little extra space and even sacrifice things I love to benefit her growth. She’s come so far in learning to control the ups and downs of the disorder. Our relationship is strong and growing stronger every day.

So, I strongly encourage those of you who have someone in your life who is living with BPD to educate yourself, instead of running away from them. Run full speed toward them; show them unconditional love and be patient with them. I understand it can be hard and hurtful sometimes, but I do believe that love over all is the best treatment for this disorder. As a spouse, family or friend of someone has this disorder, keep your chin up and fight the good fight.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via jacoblund

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The Loneliness of Living With Borderline Personality Disorder

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Living with borderline personality disorder can be extremely lonely.

Between the stigma, the lack of public knowledge about the disorder, and the associated behaviors – including what’s known as “splitting” on even the closest people in one’s life – BPD can feel isolating.

Though the concept of “mental health days” seems to be growing in popularity, it’s important to recognize that some people require more than the occasional day off every couple of months. With BPD, I never know what to expect; I don’t know what my energy level and moods are going to look like, what’s going to trigger me, or what impulses I’m going to experience each day. Sometimes I wake up in a panic. Sometimes I wake up with optimism and confidence, but a small, upsetting event or too much time spent reading the news leaves me spiraling into a depressive episode. Sometimes I wake up in pain for reasons I don’t even understand.

There’s a reason BPD is sometimes called emotional regulation disorder. When I experience an emotion, it hits me like a tidal wave, and it becomes increasingly difficult – sometimes impossible – to see past it. Sometimes BPD manifests in physical symptoms, even putting me in the emergency room, and that tends to be the only time people take my mental illness seriously.

I know my close friends mean it when they offer their support, but I also know loving someone with borderline personality disorder can be overwhelming – to say the least. It’s one thing to have a meltdown every couple of months, but it’s entirely different to live with a disorder as unpredictable and intense as BPD. To avoid “burdening” those around me, I tend to bottle these feelings, fearful of “overreacting” or pushing people away. I know most people won’t really understand, and I don’t want to bother my friends with my third crying spell this week.

How do you explain to someone the burning feeling of emptiness in your stomach, swimming through your veins, breaking you down from the inside? How do you explain the lack of emotional permanence or the effort it takes to overcome the constant fear that everyone you know and love wishes you were dead? How do you explain that, despite the positive people and events in my life, I spend most of my time fighting the urge to self-destruct or disappear?

Most days, I can’t even really explain it to myself.

With the help of dialectical behavioral therapy (DBT) and medication, I’m learning what works for me. I’m learning skills to more confidently navigate the days I feel most alone and to accept that this disorder makes me unique but not unloveable. I’m learning that not everyone will care to understand the battles taking place in my head each day, but some people will, and those people are worth the risk of rejection or isolation. I try to remind myself that no matter how lonely BPD makes me feel, I am never really alone.

If you know someone with borderline personality disorder, please try to keep in mind the emotional roller coaster they may ride every day, even if you can’t see it. If that person seems dramatic or attention-seeking, understand they are responding the way anyone experiencing pain, moods, and impulses of this intensity would respond. If that person tends to keep things to themselves, consider reaching out to them anyway. Sometimes simple validation and reassurance is more helpful than you could imagine. Caring for someone with BPD can be intense, but the extra effort can also save a life.

If you or someone you know needs help, visit our suicide prevention resources page. 

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by marzacz

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What I Want My Friends to Know About My Borderline Personality Disorder

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To those who are close to me,

Please don’t hate me, try to understand me.

I live with borderline personality disorder (BPD) which can be hard to treat, and is in my experience amongst the most stigmatized of mental illnesses. It can be easily misconstrued that we are simply “manipulative” or “attention-seeking.” Borderlines are renowned for their unpredictable emotions, their short-lived intense relationships and their “dramatic” moments, so it is easy to see how these misconceptions came about. But please don’t hate me, try to understand me. BPD is composed of these five main characteristics that interlink and spur each other on, and can make everyday life a constant struggle.

1. Intense fear of abandonment.

I live in constant fear that those I care about the most are going to leave, with no real reason to believe they are going to do so. Something so small as an unanswered text can cause a debilitating panic attack that leaves me unable to breathe or think as the fear takes a hold and leaves me shaking.

It’s utterly exhausting and means happy relationships can be a drain for everyone. I become clingy, possessive and often defensive. The lack of trust, the constant need to prove themselves and the never-ending intensity creates the exact situation I am terrified of.

2. Unstable, intense relationships

People can be terrified of hurting me, too afraid to compromise or to put me in my place for fear of my reaction. Depending on my emotional state and my perception of the world, I can either see those I care about as the most incredible, lovely people in the world, or terrible friends who don’t care if I live or die. It is terrifying and confusing to know that the way you view the ones you care about is distorted and volatile.

I am stubborn in my extreme views and cannot be pushed or persuaded otherwise. It leads to a painful game of pushing people away only to draw them close again — a calm medium never seems to be reached and it’s exhausting. As is common with BPD, everything is seen in black and white, but people can only truly be captured in shades of grey.

3. Reoccurring suicidal or self-harming thoughts and behavior; Impulsive, self-destructive behavior.

When under stress, or in an intensely emotional situation, my illness takes over completely. It pushes me to destructive behaviors I know in my gut are only going to make the situation worse. It’s as frustrating for me as it can be for those who care for me. In these times, due to my intense feelings of guilt, anger, frustration and my inability to regulate my emotions or my distress, suicide often seems like the “best” solution to any complex problem. It’s an urge that I cannot shake or rationalize without a tiring, often long battle with my mind.

4. Extreme mood swings and sudden anger.

As everything is perceived in black and white, my emotions are extreme – it’s as exhausting for me as it can be to those close to me. One second I am happy, bubbly and confident, and with the smallest of triggers I become inconsolably sad, upset or even worse, inconceivably angry. The emotion is genuine, intense and feels like it will last forever, even though it often disappears as quickly as it appears.

Sometimes I get into a mood where I don’t even want to help myself. When I’m hurt or scared, anger is my defense – but it is all-consuming, like a monster that takes over. I lash out at those I care about without caring about the consequences until I’ve calmed down and it is too late and I become overwhelmed with guilt.

5. Shaky sense of self and extreme feelings of emptiness.

There are times when I feel proud of who I am, but it can quickly switch to a deep hatred. At times, I barely know who I am and can’t distinguish if what I am feeling or thinking is rational or not. My lack of a strong core is the way I know that my illness has crept up again. It leads me to feeling volatile and often empty. When the emptiness seeps in, everything seems completely dark, sometimes for weeks at a time, and it feels like nothing can ever make me happy. I’m unable to rely on myself and instead rely on others for my happiness, which is never the answer.

What I hate about this illness the most is its ability to take away my control and prevent me from being me. It makes me a walking paradox, making every single day a rollercoaster. When the illness is bad, it can become all-encompassing and I fear that being close to someone like me is overwhelming and horribly draining. Seeing me hurt, and constantly battling a minefield to prevent hurting me again, creates a situation where no one can win. At times, being close to me seems impossible, and requires a lot of courage. I understand when space is needed as closeness begins to take its toll on happiness, but I hope in the end, I can make any sacrifices worth it.

So far, I fear this letter has been without hope and it is easy to sit here full of self-pity and excuses for what is sometimes inexcusable behavior, but that helps no one. Thankfully, it is only a myth that BPD cannot be treated. Dialectical behavioral therapy (DBT) is an extremely effective program that allows people with BPD to live happy lives by learning to manage the illness. Fighting this illness is a walk I need to do on my own, by me and for me, but having the love and friendship of those I care about around me makes it easier to reach the ultimate goal of being calm, happy and stable.

By writing this letter to you, I hope you can begin to isolate what is me and what is my illness. Understanding may not take away the hurt, but it does help in taking away the fear. Setting strong boundaries, procedures or contracts helps me know what is and isn’t OK in times of crisis. Keeping in touch with others who support me, both professionally and just from a caring standpoint, can help lift the burden. Above all else, honest communication about what is needed – space and compromise – teaches me to be a better friend, helps me explain what I need and prevents unbearable pain that lack of communication causes on both sides. I promise, even when it seems like I’m not myself, a small part of me is still up there, listening and trying to fight through. I am trying. Please remember that I am more than just my illness and please, don’t hate me, but try to understand me.

Sincerely,

Someone who is more than just their BPD

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Suchota

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wall that says everything matters, nothing's important

The Wall Art That Captures What It Feels Like for Me to Have BPD and PTSD

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On Bell Let’s Talk day, I shared this photo on Instagram and promised a blog post, so here’s that post!

wall that says everything matters, nothing's important

When my friend Audrey and I were downtown looking for street art, we came across this painting that says “everything matters, nothing’s important,” and I immediately felt it completely describes how I often feel living with post-traumatic stress disorder (PTSD) and borderline personality disorder (BPD).

Living with PTSD/BPD is tough, painful, sad, exciting, joyful, happy, and debilitating. At times it feels like “everything matters” — like life is nothing but wonderful. But it can also feel like “nothing’s important” — like life is too painful to continue on. And it switches back and forth like that quickly, constantly. Sometimes it’s even like everything matters and nothing’s important at the same time, and that’s really confusing.

It wasn’t until recently that I’ve started learning more words for feelings; before that, things were just good or bad and there was nothing in between. I still have to challenge myself to figure out how I’m truly feeling. Everything is driven by emotions I don’t understand. I find myself going back and forth between hating people in my life and loving them with my whole heart. Many moments are either dreadful or filled with so much joy that it’s like I might just explode. I think the reason why things seem either good or bad is because when I experience positive or negative emotions they’re to the very extreme.

For example, even with this blog post – when I post it I will likely feel confident and happy. Then, an hour later or a day later I might suddenly hate it, wish I never posted it, feel ashamed of my mental illness, and think people will hate me. Before I know it, I might even switch back to feeling confident and happy. Usually for no reason at all, or maybe I just haven’t dug deep enough to find the answers or reasons yet.

But it’s more than just the feelings. There’s nightmares, flashbacks, and horrible anxiety – one or the other effects me almost every day. I want to work through the memories behind the PTSD symptoms, and I have been trying for years, but disassociation and difficulty trusting people makes that challenging. I can also be impulsive in a variety of ways to cope with the things I feel. Self-harm is one of those ways… one that’s hard for me to talk about.

There have been so many dark moments but so many moments where the light has shone through. And although I greatly dislike that I have to go through all of this and that it often seems impossible to get through, I know I would not be me without these experiences; it allows me to feel empathy, to connect with people, to feel intense creativity and inspiration. Ask me another day, I might tell you how very angry I am and how much I despise having mental illness. But I always come back to the fact that everything matters. Life matters, I matter, and these experiences matter.

This is just my experience and definitely doesn’t describe what everyone goes through with PTSD or BPD, but it is a little glimpse of how I experience the world.

We want to hear your story. Become a Mighty contributor here.

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