"You don't seem like you have borderline personality disorder," people often say to me.
They mean it as a compliment. I don't fit into their idea of what borderline personality disorder looks like. They think people with BPD will kill you, or burn down your house, or stalk you until you need to file a restraining order. We lie, we manipulate; we're "difficult" and "treatment-resistant." People think we're crazy, in the classical sense of the term.
Over the past eight years, despite several doctors diagnosing me with borderline personality disorder, I resisted identifying with the disease. I latched on to other diagnoses with lesser stigmas — bipolar disorder, major depression, anxiety, post-traumatic stress disorder. This summer, I finally looked up a list of symptoms. It was so in line with my experience that I finally had to concede: I have borderline personality disorder.
The DSM-IV lists nine diagnostic criteria for BPD:
Fear of abandonment. A pattern of unstable and intense personal relationships. Unstable self-image. Potentially harmful impulsive behavior. Suicidal or self-mutilating behavior. Unstable moods, sparked by increased sensitivity to emotions. Frequent displays of temper. Stress-related paranoia or anxiety. Chronic feelings of emptiness.
In order to be diagnosed, patients must meet five of these criteria. I've demonstrated all nine.
Taken on their own, these symptoms probably match the impression most people have of people with borderline personality disorder —unstable, needy, overly intense, difficult to control. Without treatment, that impression is sometimes reality. For several years, I was in and out of hospitals. I went to rehab. I even lived on my own in a Motel 6 for two weeks. I made scary choices right in line with the scary BPD stereotype.
But today, despite a few selfish and unpleasant quirks, I seem pretty "normal." Still, I wish people knew that some of the things I continue to do — the irresponsible, unlikable things — aren't just cold, thoughtless behavior. More often than not, they're behaviors I'm trying to manage but can't always curb. I'm not making an excuse: Treating people poorly, even in small ways, isn't acceptable no matter the cause. But maybe others would be more forgiving if they knew the disorder better.
Here are six things I wish people understood about borderline personality disorder.
1) Interpersonal relationships can be really hard to manage
What comes intuitively to a person without borderline personality disorder isn't always so obvious to those of us who have it.
In school, I had trouble making friends. I was a know-it-all, correcting teachers' grammar and demanding my way with my classmates. One time a potential new friend came over to my house. "I didn't like you at first," I told her over snacks, "but you turned out to be okay."
She told me that story five years later. Even at 9 years old, she knew that my behavior was strange. I said things without thinking and often alienated others.
But at the time, I didn't realize what I was doing. I thought what I was saying was normal. I thought my interactions with teachers were just like everyone else's. As I got older, I learned through practice that people didn't like a know-it-all, that teachers didn't like having their grammar corrected. But changing wasn't easy.
When I was in college, each of my professors would approach me in the first few weeks of the semester. "Can I talk to you?" they'd say, gently. "You have good insights in class, but your delivery can be antagonistic. Try to dial it down, okay?"
I wanted to tell them I was well aware of these problems. I wanted to tell them that every time I lost my temper in class and interrupted a classmate as she made a comment I thought was stupid, I hated myself right after. I wanted to point out what a good job I'd done resisting the 15 other judgmental things I'd wanted to say — how the lecture was boring, the TA was an idiot, the kids thought they knew everything but were wrong about all of it — and by the time that girl made that stupid comment, I just couldn't be diplomatic anymore. But instead, I'd just tell my professors "thank you," and that I would keep their input in mind.
I wasn't trying to be a jerk. But nearly 20 years after my play date, I still don't always know what's right or wrong to say, whether what seems normal to me is offensive to other people. And even when I do know, it can be difficult to keep myself in line.
I'm not asking for pity. You don't have to like it. But I wish people remembered that we all have those kinds of thoughts, and I wish they understood how much harder it is for a person with BPD to control them.
2) Our impulses are really hard to control
Things that feel good in the moment are the hardest to resist because for people with BPD, a want doesn't just feel like a want — it feels like a need. Every impulse feels like an urgent concern that I have to address immediately.
Many of these impulses are self-destructive — the impulse to cut, or sleep with strangers, or skip out on my responsibilities. I've learned to control those impulses, most often by riding out the urge. But it takes a lot of work, and after a bad day I'm often physically and emotionally exhausted from all the effort I've exerted.
Because it feels so good, I give in to the small urges — peeling the callouses off my feet until the skin underneath is pink and raw, changing my clothes four times until I'm wearing exactly what I feel like I need to wear each day. I do these things as a consolation prize for all of the impulses I have to resist throughout the day. If I can't scratch the big itches, I'll scratch the insignificant ones all I want.
3) We experience our feelings more intensely than most people do. Sometimes this triggers self-harming behaviors.
When I got home the summer after my first year of college, I started to feel unbearable sadness.
"I can't do this, Daddy," I'd say, over and over. "It has to go away."
I went to a doctor for medication. I begged him to give me something, anything, to make me feel better.
"There isn't a pill that makes you happy," he said.
"Then why am I here?" I asked.
The six to eight weeks that the doctor told me I had to wait felt untenable. I couldn't live with the feelings I was having — they were just too intense. My depression felt the way I imagine starvation feels: a clawing emptiness, an unrelenting cavity that aches both in your body and your brain. I went from being a capable straight-A student to a person who couldn't leave the house and spent most of her time crying in her dad's lap.
I'd sit at home as day turned into night. As it got darker, my mood got worse. First, I'd feel a twinge of sadness. Over the next hour, that sadness became misery, then hopelessness. The pressure built up inside of me until I felt I might pop like a balloon.
I'd want to cut, like I used to. A razor was the best medication I knew. When the blade bit my skin, I felt an exquisite rush of adrenaline along with the pain. It felt like the cut released more than blood — it released all the terror and misery and desperation I was feeling.
The urge to cut is triggered by depression, and then the depression is intensified by the self-harming behavior as shame and guilt for giving in to an impulsive urge start to emerge. The intense physical pain caused by self-harm can feel like it's making the emotional pain subside, but in reality, it's just setting up for more pain. Intense feelings make people with BPD want to cut, and then the cutting triggers intense feelings of its own, starting the cycle all over again.
4) We're really, really anxious about things that might seem stupid
I'd planned lunch with my grandma for 1 pm on a Monday. When I woke up at 10, a sense of foreboding began to envelop me. I couldn't explain why, but the thought of getting on the train and sitting through lunch made my heart rate race and my breath short. I felt like I just couldn't do it, then tried to convince myself I was wrong. But as noon approached, the time I'd have to leave if I had any hope of meeting her on time, I became absolutely certain that I could not get out of bed. So I decided to just stay at home, in my bed.
At 1 o'clock, Grandma called me. At 1:15, she called again and left a message.
"Hi, sugar," she said. "I thought we were having lunch today? Did you forget?"
I could hear the irritation in her voice. I'd just stood her up. How could I explain that meeting her felt like an impossible task? I couldn't bear to call her and endure her disappointment. So I sent her an email, apologizing, telling her I overslept.
This happens often. Plans are have-to's, and have-to's mean that I can't cancel when I feel too scared to do something. Even something as easy as the subway ride from Brooklyn to the West Village can seem insurmountable to me. I always want to be able to duck out of commitments because the thought of keeping them can feel too scary to handle, even when the consequences are unpleasant.
It's not the right thing to do. In the long run, standing people up and avoiding obligations ruins relationships and even makes my anxiety worse. But it feels good in the moment. More than that: It feels like I don't have a choice.
5) What we really crave is stability
When dating, I'd meet a man I liked. We'd go out on one date, and it would be fabulous — our rapport would be natural and fun, we'd laugh all night.
"I had a great time with you," I'd text him the next day.
"Me too," he'd respond.
That evening, I'd be unable stop thinking about him. I'd want to ask him so many questions. I'd try to resist the urge; over and over, I kept myself from writing a text. But as it got dark and I got more and more worked up, I'd give in and reach out.
"What are you up to?" I'd ask.
Five minutes would pass, with no response. "What does that mean?" I'd think. "Does he not like me?" I wanted to know that he was interested. I needed to know it for sure, and I needed to know it right then.
I'd send him 11 more texts before I went to sleep. He wouldn't respond that night, or the next day, and I'd never hear from him again.
That made me feel rejected — something that's hard for most people to deal with, and even harder for those with BPD. The fear of abandonment, of being alone, is a key aspect of this disorder. So for me, the excitement that many people feel in a new relationship is just scary: I can't stand the uncertainty. When I fantasize, it isn't about the passion at the beginning of a relationship; it's about that night three months in when we're sitting next to each other in bed watching bad TV. I want safety and routine.
6) There's treatment, and we can get better
There's a special therapy developed for people with borderline personality disorder called dialectical behavioral therapy, or DBT. It's very practical, focusing on teaching the patients coping skills to keep in their back pocket, like a neurological cheat sheet to pull out in situations where we want our behavior to be different. There's also talk therapy involved, but most of DBT focuses not on why we feel certain ways, but on how to fix the behaviors that we no longer want to engage in.
Additionally, medication can be really helpful. I'm on a cocktail of drugs that includes an antidepressant, a mood stabilizer, and an antipsychotic. Together, these medications cost me about $400 a month, but they really help me feel stable and regulate my otherwise wildly vacillating moods.
At 26, I've finally graduated college. I have a job. I have a reasonably successful dating life. It's not easy, but after nearly seven years of DBT, weekly therapy, and a strict medication regime, I'm finally pretty "normal."
Eliza Hecht is a writer living in Brooklyn. Her work has been featured in the New York Times.