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Borderline personality disorder, or BPD, is a form of mental illness marked by “an ongoing pattern of varying moods, self-image, and behavior,” per the National Institute of Mental Health. People with BPD are often impulsive, and may suffer from relationship problems as a result of the disorder, says the NIMH. They may also experience intense emotional highs and lows; an inclination toward self-harming behaviors like cutting, binge eating, and unsafe sex; difficulty controlling anger; and difficulty trusting others.

BPD is thought to affect about 1.6 percent of the population, though the actual rate may be higher, as BPD is often misdiagnosed, and can occur alongside other mental disorders. The cause of BPD is not yet clear, though there are thought to be genetic and environmental factors which may contribute. Medication is typically not used as the primary treatment for BPD, as the benefits are unclear. Instead, it is usually managed via techniques learned in behavioral therapy.

While borderline personality remains highly stigmatized and often misunderstood, recent cultural conversations around it have helped increase awareness of the disorder. The main character of the TV show Crazy Ex-Girlfriend was recently given a BPD diagnosis, and SNL cast member Pete Davidson has opened up about his struggles with the illness.

Below, we spoke with a 31-year-old woman about her experiences living with BPD.

When were you diagnosed with BPD? What was your experience like before that? Did you know something was off?

I was 26 or 27 when I got an official diagnosis, but starting in my teenage years it was pretty obvious that there was something going on. I had a history of cutting as a teenager, and was in and out of therapy, but I never really had anyone that I saw consistently, which is probably why I got a diagnosis so late. I was misdiagnosed with bipolar, which is pretty common for people with borderline. There’s a lot of overlap with the symptoms.

I always struggled with emotional regulation. I’d have really, really staggering highs and really, really low lows, and sometimes I would have them within minutes of each other. It would be so rapid, and I couldn’t keep track of how or why I was feeling the way I was feeling.

It was always a short trigger with my anger. It would be quick and hot, and it would burn out almost immediately, and then it would start a cycle of guilt and shame afterward. I’d wind up cutting off relationships with friends and boyfriends. Partly it was an “I’ll break up with you so you can’t break up with me” kind of thing. It was also me desperately not wanting to inflict myself on other people.

It sounds like you knew this wasn’t the way other people reacted to things. So how did you perceive your emotions at that time?

When I was a teenager, it was very hard to tell whether it was just being a shitty teenager, or whether your feelings were justified. Before I had my diagnosis, I spent a lot of time trying to figure out why things were somebody else’s fault. But inside, I think I always knew that there was something stronger about my reactions than anyone else’s. Everyone else seemed to be able to roll with the punches.

There’s the normal struggling with your self-image that happens as a teenager, and then there’s an extreme level of it where there’s this perception that nobody likes you. Why would anybody be friends with you. Then you wind up being a shitty friend to people, because you just assume that they don’t want to be friends. I always sort of normalized it for myself, just to feel a little bit more sane. But then there was a little part of me that was always screaming in my brain, like, “This is not normal! You have to stop this!” But for a long time, it felt like there was no controlling it.

So there’s this part of you that is desperate to connect with people and desperate to have a kind and functioning relationship with somebody, but you also feel like there’s no hope for it. How can I possibly get this kind of relationship in my life with the way that I am? It took a very, very long time to figure out that there were things that I could do. As soon as [doctors] started talking about the possibility of me being borderline, I started to look at formal diagnosis criteria online, and reading other people’s experiences with having it, and all of a sudden, my entire life up until then clicked into place. And it felt like, “Oh, okay, this is it exactly.” Getting the diagnosis was a big step in feeling more in control over it. This isn’t who I am, it’s part of who I am. It’s an aspect of me, but I can do something about it because I know what it is.

How did the diagnosis help you learn to manage your symptoms?

Well, as a side note, it’s really common to have other mental health challenges with BPD, and I have a lifelong history of anxiety and depression. Dealing with those things along the way means sometimes it’s more intense, and sometimes my baseline is a little more level, and I can deal with the volatile emotions a little more easily. The highs and lows aren’t as bad. So when my baseline is a little more level, it feels like it’s manageable.

If you look at the statistics, about 70 percent of people with borderline attempt suicide at some point, myself included. And one out of ten successfully commit suicide. So when you start thinking about those sorts of things it does get really daunting. Sometimes I feel like I can manage it, and I can survive it, but there are definitely bad days, where you think, “It would be so much easier for me and for everyone else if I wasn’t here,” which, when I’m having a good day, seems stupid.

There isn’t really medication for it either, right?

I do take antidepressants, and I have anti-anxiety medication for days I know I’m going to need it, and that helps with the side stuff. I know that there’s a pretty large difference between how I feel when I’m on medication and how I feel when I’m off medication, because I went off medication when I got pregnant with my twins, and after I had the girls I had a really, really bad bout of postpartum depression. That’s actually when I self-admitted into a mental hospital.

What led you to self-admit? How long were you there?

I was trying to find a psychiatrist for about six months after I gave birth. I was on Medicaid, and it was very difficult to find qualified doctors that took Medicaid. If they took Medicaid, there were, no exaggeration, six month plus waiting lists, which is obscene. We couldn’t afford out-of-pocket care at the time. So I tried clinic after clinic after clinic, and it was getting more and more frantic in my head. And for the first time in a long time, I was feeling suicidal in a way that was more than just passive. For a long time, the suicidal feeling was like, “Well, if I happened to get hit by a bus, that would probably be fine. I wouldn’t be mad at it.” Which is its own level of crazy. But then I was feeling like it would be 100 percent be better for me to be dead. I hadn’t started making a plan to kill myself, but I could feel it coming.

I finally just started calling around to hospitals, because it started to become obvious that the only way that I was going to get immediate access to care was to check myself in. There was one hospital that I called, and I wound up being put on the phone with the head of their behavioral health department, and she told me about a different hospital that had a women’s ward and a relatively new unit that dealt specifically with pre- and postpartum issues.

I checked myself in there, and I was there for five days, which felt like forever at the time. It turned out to be one of the best decisions I made. It was extraordinarily difficult. It was the first time that I had been away from the kids. But as soon as I checked out, I had a treatment plan and I had a treatment team at the hospital, and I started weekly therapy sessions and check-ins at the doctor. I started a medication that I could take while I was nursing. And I was able to get myself balanced out enough to be receptive to therapy. It was a really, really hard thing to do, but it turned out to be one of the best decisions that I could have made at the time.

What does therapy for BPD look like?

There’s a style of therapy called DBT — dialectical behavioral therapy, a form of CBT — that was designed specifically to treat borderline. You can use it to treat BPD, and to help you manage your life and your symptoms better, but it’s a lifetime thing. There’s no way out of it.

There’s no medication that can be used to treat personality disorders, though you can treat any sideline mental health issues [like depression and anxiety]. Really, the only real way to manage it at this point is with DBT, which just focuses a bit more on mindfulness, and emotion regulation, and how to avoid certain behaviors, like self-harm.

DBT asks you to retrain your brain so the default thing you reach for isn’t self-harm, or substance abuse, or abuse toward somebody else, which, thankfully, has not been a thing for me. It’s challenging. It’s really, really hard.

How has BPD manifested in your romantic relationships?

I always found it to be a positive thing in the beginning of a relationship, because the passions are really high. At the beginning, there’s a tendency to put somebody really high on a pedestal. One of the big components of borderline is that things are very black-and-white. You have to work hard to find a gray area. So when it’s good, it’s really, really great.

I was with this guy J. in my early 20s, and he was incredibly lovely, and I was a lunatic. Things were really, really great at first. We moved in together, he was really supportive, but I could not get it out of my head that I didn’t trust him. For no good reason! I was just constantly paranoid. It was so invasive in our relationship, this idea that if he went out without me, I was like, “He’s cheating on me.” For days after he would go out without me, I would be so mad at him. It would be like a switch flipped, where he was this awesome partner, and then something small happened, and the switch would flip, and I hated him. I would hate him. And then the switch would flip back.

I adored him. That was the really fucked up thing for me, was that I loved him so much, and all I did was sabotage that relationship, and I couldn’t figure out why. In the end, it ruined us. He knew it was coming; I was totally blindsided by the breakup. But in hindsight, I was awful to him in a way that I didn’t realize at the time. It feels really shitty to say, because it doesn’t register as something I would actively do, but I was really manipulative, and borderline emotionally abusive to him at points. At the time it felt like self-preservation, and it hasn’t been until the gift of hindsight that I can see how difficult that must have been for him to deal with.

And that was prior to your diagnosis?

Yeah. You get to a point that you don’t trust your own emotions, and you don’t trust whether what you’re feeling is real. I found that in the years leading up to my diagnosis — and this has, like, tripled after getting a diagnosis — if I get upset about something, I wonder if I’m really justified, if I’m overreacting. BPD leaves you vulnerable to being with people who are abusive, because I tended to justify things boyfriends were doing, thinking I’m overreacting. But, no, they were also not nice humans.

It sounds like BPD could sort of lend itself to being gaslit in that way.

Yeah, exactly. When you don’t trust your own brain to respond appropriately, you start to really wonder whether something somebody else did was really that bad. And sometimes it is that bad, and you just don’t trust yourself to recognize whether it really was.

My partner now is the only relationship I’ve had after my diagnosis. I made a really, really difficult decision early on in our relationship to practice radical honesty. From day one, if I could feel myself pushing away, I was very open with him. I told him, “I am going to look like I’m pushing you away, and what I’m asking desperately is for you to hold me in. This is what it’s going to look like for you. And if you’re open to staying, I’m trying to fight this.”

I knew that this was going to be an important relationship. He has been really proactive on his own, researching BPD and really supportive in terms of trying to find doctors and find therapists. I feel really fortunate. There certainly have been bad days. Plenty of them. But even when I have an outburst, I can almost immediately recognize, “Holy shit that was really bad. That was really awful.” And I think that sense of self-awareness, that truly didn’t come until after I got the diagnosis, has been what has made us able to work through it and sustain our relationship.

How long have you guys been together?

Coming up on five years. I think we got together about six or seven months after my diagnosis. It’s been my longest relationship. We have two kids together and are getting married in October. It’s turned into the type of relationship that, after my early 20s, I wasn’t sure was ever going to happen for me. I wasn’t really sure I was going to ever find somebody that could put up with with some of the stuff that they have to put up with.

Odds are pretty good that you’re going to relapse at some point, and finding someone that can love you through that and help you with that, it really felt like an impossible task. I think it’s important to put out there that it is possible to be in a loving, non-abusive — on either end — relationship with somebody with BPD.

What was the conversation around BPD like when you were deciding to have kids?

I’ll probably get the most emotional talking about this. There’s kind of an unknown about where BPD comes from; they think it’s a combination of nature and nurture. They think there is some amount of trauma in childhood that triggers BPD and other personality disorders. So I kind of almost hope it has more to do with [nurture], because there is a huge fear that this is a really shitty gift that I give my kids.

Out of anybody that I could hurt with the way that I am sometimes, I am desperate to not be that way with my kids, because they deserve a better mom than that. They deserve better, and frankly so does my partner, and so do I. There have been a lot of conversations around whether this is going to be a big issue with raising them. I feel armed with some knowledge and with more awareness than my parents had at the time, to be able to intervene a little earlier if this is anything that I do pass on to them. But that’s the part that I don’t have any control over. I can’t control what what they experience in terms of mental health later on in life.

Which would be true for anyone, really.

Yeah, and I know what my experience was like, and how I felt when I was younger, and how difficult it was to reach out. I hope that if anything positive can come out of having dealt with all of this for so long, I hope that I can at least be a better ear for them. The best thing that I can imagine coming out of a lifetime of suffering is the possibility that I might be able to help someone else suffer a little less.

But again, I don’t have any control over what they end up struggling with. I do have control over how I interact with them. And in teaching myself better coping mechanisms, and ways to not be so reactive, my hope is that I can be a better example. And that really has been very motivating to keep pursuing therapy, and to continue trying to get better so that I can be a better example and better partner. And to just be better, because I deserve to be better.

What has it been like trying to get treatment recently?

I mean, I thought it was difficult in New York. We moved to Missouri, and it’s been even worse. I have been denied access to care by the last two therapists that I’ve seen, the first one because I have BPD. As soon as I told her about it, she said she wasn’t qualified to handle a disorder of that magnitude. She said she could try to find me a referral, but that I couldn’t come to her office anymore.

Then there was a DBT center here, where that’s their entire specialty. I was really, really clear at the beginning — my partner and I share one car, we have two kids on one income, I’m a stay-at-home mom right now. We’re already paying out-of-pocket because they don’t take insurance. So I said, “I’m dedicated to doing this, but I can’t come multiple times a week.”

We had a really great couple of sessions, and then they were like “Okay, here’s the treatment plan that we’re giving you. You need to come in once a week for individual sessions, and we also need you to come in for group sessions a different day every week.” The only group sessions they had were during times my partner was at work, so he would’ve had to get off work early, so we’d take a cut in pay for that, too. And we’d have to coordinate what to do with the kids. I asked if there was anything else we could do. I told them, “We’ll put ourselves into debt.” And she told me, “Well, you know, cancer patients put themselves in debt to go on chemo. What’s the difference?”

I mean, that’s bad too.

Yeah, that’s not any better! And so they told me if I couldn’t come multiple times a week, and I couldn’t pay for both group and individual sessions, I couldn’t be part of the practice. It’s astounding. Thankfully I have all my old handbooks from when I was in therapy in New York, and I can at least do some self-guided stuff while I’m searching for a long-term therapist out here. But it’s really fucking hard. And it is just ridiculous to me the state of mental health care in the U.S. It’s a really, really ugly world.