It has been awhile since I wrote about struggling with Borderline Personality Disorder (BPD), but in honor of Mental Health Awareness and BPD Awareness Months, I’m back with another roundup of what it’s like to live with one of the most stigmatized, severe mental illnesses referred to as the “leprosy of mental illness;” the one doctors in the past have not wanted to treat.
I’ve been in therapy for many years but specifically in treatment for BPD (it took time to be diagnosed correctly) for over four years. I’ve undergone the recommended Dialectical Behavior Therapy (DBT), which is a form of Cognitive Behavioral Therapy (CBT), both group and individual, which have been helpful, but there’s no cure for BPD. As an emotional regulation disorder, it’s always just below the surface of your existence and can be extremely difficult.
Since it revolves around interpersonal relationships, it’s a daily challenge that’s often proves exhausting, and in part explains why I live alone on a small island. Although this lifestyle can be lonely, it’s less painful than navigating the psychological and emotional warfare for me that results from co-existing in traditional society.
Having BPD is like being a person made of glass, wearing the only available flimsy suit of armor when you go out into the world, and then putting on a bunch of (also the only available) bad Trump-orange makeup to disguise the armor because you’re just trying to look human like everyone else. You’re always afraid everyone can see through the makeup to what a freak you look like in this awkward, clinky armor, and when you wear it, it’s constantly scratching and cracking the surface of the fragile glass underneath.
All you want to do is walk around naturally, but glass is too fragile, so you mostly just want to stay home and safe, away from people who’ll damage you. Putting on the armor and having to cover it all up is too much trouble most days. And being around “normal” people just makes you feel even more like a freak.
I’d inevitably say something awkward in line with the murky childhood that led to this disorder in the first place: alcoholic parent, impoverished family two of my siblings died (by suicide and heroin overdose)—suicide is one of the main symptoms of BPD and I’ve been far too close myself. When you’ve been through an adverse past and you’re “neurodivergent,” it’s weird to be around people who talk about recipes, sports teams and zoom meetings.
I’m grateful for the people who manage to stick around, the ones I don’t have to wear the armor for—there aren’t many. But too often I let down the armor for the wrong people. When I think I’ve found someone who understands what it’s like to feel fragile, trust them, and think it’s okay to show real emotions and vulnerability (BPD has a good side—the intensity of its passion, love and humor can be as powerful as its dark side) I end up getting hurt—the surface of my glass is shattered.
In BPD there’s a phenomenon called the “FP” or Favorite Person, which is a double-edged sword where we try to find someone we can trust to understand us so that we don’t have to interact with many others but have a safe relationship space. It can be a taxing relationship and has to involve a lot of communication and boundaries on both sides. It can be a rewarding and fulfilling relationship or tumultuous and disastrous, depending on how both sides engage. It’s probably the reason I’ve had a kind of “best friend curse” since my second grade best friend moved away. I recognize I’m not the easiest person to be friends with, it’s a job for only the strongest person. I feel fortunate to have a few great people who come to visit this island; it’s not fair to ask anyone to stay, and for the last 12 years I’ve found it sort of okay to be on my own.
It's a BPD thing that we’ll remove ourselves from your life so you don’t have to do it for us. Recently I met an amazing woman I was looking forward to getting to know. After nearly a month of not hearing anything and trying to be understanding, I eventually decided she ghosted me: cue the “I’m worthless shame spiral,” where I send a message saying (not in these exact words) like let me end this for you, clearly you don’t want me around. There’s no way to explain the self-loathing aspect of BPD, the anxiety, hate-spiral, and inconsolable inner loneliness from invalidation and various perceived or actual forms of abandonment. Trying to make a new friend is an almost insurmountable mountain.
Wanting to have someone who understands and accepts us is a life goal; sometimes I spend time in BPD group chats online; the downside is seeing the extreme suicidal ideation that can be painful for me as someone who has lost two siblings and often struggles myself.
Living with an emotional dysregulation disorder is a terrible way to exist. I share this perspective as a way to help break down some mental health stigmas and encourage people to be patient with those who suffer with mental illness.
In the meantime, I work hard and do my best to take responsibility for my mental health, focusing on the skills I’ve learned: mindfulness, meditation, and taking one day at a time. The slogan goes “it’s okay not to be okay,” but that doesn’t mean it’s any fun.