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23 Things People With Borderline Personality Disorder Want You To Know

It isn't about getting attention.

Borderline personality disorder (BPD) is a mental illness affecting approximately 1.6% of adults in the U.S. Symptoms — usually beginning in adolescence and early adulthood — include emotional instability, extreme reactions, distorted sense of self, chronic feelings of emptiness, self-harm, and suicidal thoughts or attempts. Research on BPD is in fairly early stages, so many people either don't know it exists or don't know what it means. BuzzFeed reached out to six people with BPD — men and women, ages 19-36 — to find out what it's really like.

1. BPD can make it incredibly difficult to regulate your emotions.

"I am extremely sensitive to emotional stimuli — emotional hypersensitivity is the core of my experience of BPD. Because of this, the speed at which my emotions fluctuate is breathtaking, and they tend to be extremes of emotion, such as elation or utter despair. I have to work hard at managing and regulating my emotions. This is very difficult, and sometimes I get overwhelmed." —Andrea Shaw

2. One way people with BPD cope is by dissociating from their surroundings, which means psychologically or emotionally detaching themselves from what's happening to or around them. But this can often be misinterpreted.

"Think of someone who is highly sensitive living in a cruel world. Not only does the cruel world not value sensitivity, but it inflicts trauma. That person experiencing pain will respond in genius ways such as dissociative coping, only to have others interpret this protective response as angry and manipulative. If our community valued sensitivity, and understood our responses to pain, we could enjoy life; we'd want to be present for it." —Mary Hofert Flaherty

3. Dissociation or depersonalization can be incredibly scary.

"Depersonalization is basically a defense mechanism, usually after some kind of trauma, but when you get chronic depersonalization — like I did — you get caught in that state for months. And that's what happened. I wasn't depressed. The best way to describe it would be like this: When you're really high on marijuana, and your hands don't feel like they're yours, or you'll say something and you're like, Did I just say that? That type of thing. It was very frightening, and doctors kept saying it was depression." —Royal Cumings

4. BPD doesn't make people inherently mean or angry.

"Most people with BPD that I've met are very gentle souls; they're very kind people. It's a sensitive brain combined with either trauma or invalidation. A lot of people have the impression that BPD folks are just assholes, just because the people who lash out are the loudest. The quiet ones are either misdiagnosed, or they're just quiet. And there's millions of us. Most us are very decent, sensitive people, and we don't like hurting people. There's this notion that we're all angry." —RC

5. People with BPD can't just choose to be a different way.

"People who suffer with BPD do not choose to be this way. Through lots of research and soul searching I have come to the conclusion that my BPD was caused by a combination of two factors: a genetic predisposition and growing up in an invalidating environment." —Shelley Fisher

6. And they're not doing this for attention.

"I have encountered a large amount of stigma throughout my illness, mainly from people who assume that I have chosen to behave in a certain way for attention (normally surrounding self-harming or suicidal behaviors). I would like to make it clear that choosing to harm myself was a very traumatic experience." —SF

7. People with BPD can go through years of misdiagnoses — and it's incredibly disheartening.

"I was diagnosed bipolar a couple times, major depression, general mood disorders, but nothing felt right. When one doctor finally said it sounded like BPD, and the more I learned about it, the more I read about it, I was like — this is me. Finally I'm home; I have a diagnosis. We know what's wrong and we know what to do now. " —RC

8. So when they finally get the right diagnosis, it can be a huge relief.

"It felt really good to know I wasn't alone in struggling with it. Once I found out it was something a lot of people struggle with, I felt better, because I suddenly felt like it wasn't just me, that I wasn't just the crazy one." —Erika Hanson

9. Once that diagnosis comes, it can still be an exhausting process trying to find help for it.

"It's been a lot of handing off. The first time I got help, the adviser in my high school — in my boarding school — noticed I had cuts and forced me to go to the counseling center, but even there they didn't really know how to help me. Eventually they told me to go home to find a new therapist. I can't even tell you how many therapists I've gone to just because they're like, 'We don't know how to work with you; try this therapist!'" —EH

10. But just one supportive health professional can make a world of difference.

"I eventually developed a life-changing relationship with a psychologist — the first and only mental health professional who competently and compassionately responded to my presentation of BPD. It was this relationship that facilitated my full acceptance of and burgeoning insight into the basic concept of BPD, and its role in my life." — MHF

11. A lot of times, people living with BPD are also living with other disorders — often substance abuse, depression, anxiety, and eating disorders.

"Borderline is really related to my eating disorder and they're treated concurrently. Restricting and purging have been ways for me to manage these strong emotions that I face, and that I have difficulty regulating. I feel like I can't be happy and I can't be sad, and I just want to be numb, and the behaviors I've used to do that have definitely not been healthy." —EH

12. BPD can make it really hard to maintain relationships.

"BPD has an enormous impact on my personal relationships. Because I am so emotionally sensitive, I can often overreact to things that friends or family do or say and might then behave in a way that is unhelpful to both me and the other person. This makes maintaining friendships very difficult." —Andrea Shaw, email

"The very essence of BPD is that it has a direct impact on your ability to communicate, and maintain relationships with the people closest to you. You pull people in close in an intense relationship, and then with no warning push them away as hard as possible. This cycle repeats over and over again because, until you get treatment, you lack the skills to maintain relationships at a functional level. On top of that, BPD causes a large fear of abandonment — think, 'I hate you, don't leave me!'" —SF

13. But it may even make your emotional ties stronger.

"I've had the privilege of spending most of the past decade in long-term, committed relationships with people — people whom I've loved fiercely, and who have loved me back just as fiercely. BPD provides for a more intense, emotional experience, which, in terms of my romantic relationships, has been more of a gift than a curse." — MHF

14. Trust is hugely important.

"Something that helps is my rock-solid relationship with my husband. He is extremely supportive — I trust him 100% so I don't experience the same relationship problems with him that I do with others." —Andrea Shaw, email

"In my case, BPD stems from childhood trauma — the abuse and neglect I suffered from my father. I was left feeling worthless and unlovable, with major trust issues. I live in constant fear of being rejected by the people I love, and make frantic efforts to prevent it." —Marra Yates

15. So is validation.

"For many years, ever since I was around 12, my parents thought that I was just trying to get attention using my behaviors — self-harm, crying spells, depressive symptoms. They didn't believe I had a problem, so for a long time they didn't support my treatment and didn't want to pay for my treatment. It was really hard; I felt really invalidated for a long time." —EH

16. And patience.

"I am lucky to be in a relationship with someone patient, who will understand when I 'overreact' to things like taking too long to text me back. To me, canceling a dinner date may as well be breaking up. And seeing my best friend spend time with her coworker makes me believe that I am alone and unloved. I can't help feeling this way, but I do my best to not let BPD keep me from living a normal life and forming healthy relationships." —MY

17. Some forms of therapy work better than others — it depends on the patient, and the practitioner.

"Cognitive behavioral therapy doesn't go far enough for me. I'm not dissing it — I think for certain people it works great. In DBT [Dialectical Behavioral Therapy, a specific kind of therapy developed for people with BPD], the skills are aimed at exactly what we deal with. The core of it is mindfulness. It's also much more intensive than other therapies. It's at least a year, and you go twice a week, once in a group or class, and also one-on-one with a therapist. And your therapist is your coach, almost like a sponsor in AA. If you start dysregulating and you're about to freak out or do something stupid — whether it be cutting yourself or drinking or lashing out — you call them and they talk you down. They don't engage with anger, or ignore you, which other people do and only makes things worse. It's basically a rewiring of the brain — and if you practice, practice, practice every day, you'll get good at it. It changes your behavior, and your thinking. It just works for me." —RC

18. But there's often a waiting list for DBT, which can make getting treatment difficult.

"Treatment for BPD in the UK is very patchy and non-existent in many localities. The mainstay of treatment is DBT or a couple of other specialised psychotherapies, and in many areas it just isn't available, or is extremely heavily rationed so that only a tiny proportion of those diagnosed with BPD get access to it. I personally have not had any BPD-specific treatment since being officially diagnosed almost five years ago." —Andrea Shaw, email

"The only really well-known treatment for it is DBT — which, even if you live in a town that offers it, you have to go on a waiting list. Some of it is because they don't have the room, but a lot of it is insurance stuff. For a while I was able to do it, traveling three hours up to Cincinnati, paying out of pocket, and it really helped. But I had to stop for personal reasons, go on disability. I'm back on a waiting list — also waiting for my Medicaid — but I'll at least be eligible again in March. It feels like I'm treading water. I just want to be my old, normal self again." —RC

19. This can make it feel like people with BPD have to fend for themselves.

"When I was diagnosed with BPD and I researched it, I realized that I really needed to get myself some DBT. Sadly the waiting list in my area for this therapy was more than two years, so I decided to buy some books written by Marsha Linehan (the creator of DBT) which were aimed at therapists — and teach myself the therapy." —SF

20. Sometimes the most important factor in recovery is love, support, and reassurance.

"People with BPD want and need to be loved, but their behavior can push and drive the people closest to them away. They end up alone, scared and consequently cannot see the point in continuing. What they need is the support and empathy to get the help they need, and hopefully more sufferers can follow the path I eventually did — to recovery." —SF

21. If we don't talk about BPD — and break the stigma — it might keep people from getting help.

"Stigma is the reason, more so than the actual impediments of symptoms, that I've struggled in my career; and it's the reason BPD research, treatment development, peer support, and community resources are so underfunded." —MHF

22. Visibility matters.

"I really do want to recover, and I'm taking all the steps I can to work toward recovery, and I've seen it happen in other people. It gives me hope that maybe it could happen for me." —EH

23. People with BPD are stronger than you know.

"My extreme emotional reactions are so ingrained in my brain that I can't prevent myself from experiencing them, and instead I have to manage them. Living with BPD is incredibly hard work and anyone who manages to stay alive in the face of such intense pain is a hero in my book." —AS

Find more information on borderline personality disorder here.

Responses have been edited for length and clarity.