To me, borderline personality disorder (BPD) is one of the most misunderstood and maligned diagnoses out there. Openly identifying yourself as having BPD and talking about what it’s like takes incredible vulnerability. So I was feeling both proud of myself and somewhat afraid when I took the stage along with four other panelists at a large conference this summer to talk about mental health and our experiences with therapy.
The talk went well, we had some great questions and I finished the hour feeling like it was worth it, as I do most times when I speak out about my experiences with BPD. I even managed to introduce some basic ideas of neurodiversity, saying “I don’t hate my BPD. There are good elements to it.”
That all turned sour when one man came up to chat with us after the panel was finished. I was busy trying to help a young woman figure out how to find a therapist who would meet her needs, when I overheard him:
“No real borderline would say that. They all hate borderline and would do anything to get rid of it.”
I felt a flood of cold anger. I was angry at the misconceptions about borderline. I was angry at a society that finds it acceptable to diagnose a complete stranger. But mostly, I was angry I felt like I couldn’t do anything to change this man’s mind, to show him BPD is not a monolith of miserable, malicious people.
But what I can do is tell my story here, to as many people as possible. I can say what it’s like for me to live with BPD.
It seems most people think BPD is just a disorder that makes people angry, manipulative and abusive. When asked to imagine someone with BPD they might think of “Girl, Interrupted,” or picture someone who hurts themselves for attention, yells and screams at the slightest provocation or has impossible rules and expectations.
This is not my experience with BPD.
There are a few hallmark characteristics of the disorder that show up for most people who have it, and these are usually the most misunderstood. While many people are aware of the intense anger that often comes with the disorder, there are some other traits that look very different. Here are the ones that are most prevalent in my life, and the ways they can be positive.
1. Emotional dysregulation
Perhaps the most iconic element of BPD is what’s called emotional dysregulation, but I like to think of it as living without an emotional skin. Compared to nearly everyone else I know, I feel my emotions more. Everything is intense for me. Small things feel overwhelming, big things can leave me so stimulated I shut down entirely and sometimes I get big emotions for no particular reason. That means I react a lot. I cry a lot. Sometimes when plans change at the last minute I can’t follow through because my emotions are too busy flipping out. It’s not an easy way to live, but it’s also not an attempt to be manipulative. Having strong emotions most certainly isn’t abusive. It’s simply different, and it can be managed with good support and resources.
2. Lack of identity
Many people with BPD have a hard time forming a solid sense of identity. I have this problem and often try to make up for it by throwing myself into activities, relationships, jobs and school. I try form my identity by being good at something. I can never entirely tell for myself what my character traits are or what my values and priorities should be. That means I have a very hard time with change and sometimes will hold on to relationships for too long. It can also lead to serious shifts of opinion once I start to see the bad in something.
From the outside it might seem like I am flighty or have serious difficulties with relationships, but internally it feels completely different. I spend a lot of time trying to figure out whether I’m being reasonable or whether a friend or partner is behaving in a mean or unacceptable way. I try extremely hard to see good and commit to my relationships, so when I’ve decided someone shouldn’t be in my life anymore I have many, many reasons. While the shift may seem sudden from the outside, internally I’ve likely overthought things for a long time. This is also not a problem that is impossible to solve. Careful consideration of my values and motivations has given me a much better sense of what I want out of my life and how to pursue it in a healthy manner.
3. Self harm and impulse control
It’s also incredibly common for people with BPD to have impulse issues, including problems with self-harm. After spending more time in therapy, I have better coping skills, which means I’ve been self-harm free for a year. BPD is not a life sentence of self-harm.
4. Chronic emptiness
Chronic emptiness is one of the experiences of BPD that’s hard to explain. Much of the time I feel numb. I don’t have those strong emotions, or I don’t see the point in trying to manage my life. I can have a hard time socializing because it feels as if my whole body is heavy and weak, my mind is dulled with depression and other people don’t understand. To be real, this is one of the symptoms I can’t find any positives in, but one of the ways I combat it is by going back to my strong emotions and accepting these elements of myself. Hating my BPD will only make the pointlessness and despair worse.
It seems like people have never heard this word, but most people have experienced at least mild dissociation at some point in their life. If you’ve ever driven home and then realized you can’t entirely remember how you got there, you’ve dissociated. It’s the experience of disconnecting from your body or immediate surroundings. When I’m having a particularly bad episode, I feel as if I can’t move my body. I have a hard time speaking because my mouth doesn’t feel like it belongs to me. But, none of this means I’m ignoring anyone or being manipulative or hating the world. It’s my mind’s way of dealing with intense stress, and sometimes it’s very helpful. I’ve learned ways to bring myself back to reality.
After so much lived experience, when someone tries to tell me what a real person with borderline looks like, I can’t help but laugh. BPD is a widely varied disorder. I want to tell that man who questioned my diagnosis there are times when having BPD is actually really cool. Most of the time I like my life.
That’s not to say there haven’t been some absolutely awful times. But in the last 20 years the treatment for BPD has improved hugely, and remission is possible. That means I can manage most of the negative symptoms and appreciate the positive. I don’t just feel bad emotions intensely, but happy ones too. I have passions stronger than most people I know, and have almost beautiful reactions to plays, music and media. My strong emotions help me to feel empathy, and because I have some fears of abandonment, I work incredibly hard to be a kind and caring person.
It’s entirely inappropriate to ever tell another person how they should feel about their own mental health, and even worse to say you must be miserable if your brain is different. My brain is not entirely typical, but that doesn’t mean I hate myself. I want to combat that stigma by openly embracing my own mind.
Follow this journey on We Got So Far to Go.
The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about your mental illness. How did you react, and what do you want to tell people who hold his misconception? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.