In Which I Out Myself... And Try To Break Stigmas

This is probably one of the scariest things I'm doing ever, and for sure the scariest post I ever wrote on this blog. But it is something I thought about doing for a while, and I discussed it with my therapist in depth to make sure I'm not making any impulsive decisions that I might regret that will be irreversible. I also thought long and hard about why I'm doing it, ensuring the reasons mesh with my values.

So here it is.

I'm doing it.

I'm just going to come out and say it.

I have borderline personality disorder. One of the most stigmatized mental health disorders that there are. (In short called BPD or borderline.)

Why am I telling you this? Especially because there is such a stigma, and it may make some of you permanently change your perception of me? Read on to find out why.

My Story

I remember the first time I heard of the concept of BPD. A friend had a book in her house called "Stop Walking on Eggshells" and she told me it was about people that you have to be so careful around them, like walking on eggshells, otherwise they will blow up and bite your head off. Honestly? It sounded like two of the abusers in my life, that one second they'd be fine but if you took the wrong step they'd snap and become violent, often directed at me. In my mind, the concept of BPD became synonymous with "abuser".

I have a Facebook friend who is very public about the fact that she has BPD and I never understood why she didn't keep that a secret. Why wasn't she ashamed to out herself as being an abuser? Because in my head, that was what having BPD made you.

About 7 years ago something happened that blew my mind and made me rethink every assumption I ever had about BPD. I found out what the diagnostic criteria were (and no, being an abuser is decidedly not one) and realized that I fit them.

This sent me spiraling so badly. If I have BPD what does that make me? Does it mean I'm like my abusers? I fell apart so much, and felt so unstable. I crashed down to the worst mental state I'd ever been in in my life. I knew therapists often hate clients with BPD and so I was afraid that my therapist would want to dump me once she found out that I had it. But when I brought it up with her, instead of confirming or denying it, she more wanted to explore with me my feelings about it. That was how she worked, she helped me figure out things on my own and guided me there, but I felt I needed someone to tell me things, give me advice, teach me skills, and I didn't feel she could do that. Not to mention I wanted someone who I knew, from the get go, was happy to work with a borderline client.

I learned that the gold standard of treatment for someone with BPD is DBT, dialectical behavioral therapy, which is very tool-oriented. So I asked around and looked for a therapist who had experience working with BPD and did DBT. 

Long story short, I ended up working with that new therapist for 6 years and she changed my life. During my first session with that therapist, I told her that I thought I had BPD and she said that whether I do or I don't doesn't matter to her- if I have symptoms that make me think I have it, then she'll work with me on those symptoms, regardless of the label. She said I can go to a psychiatrist for an official diagnosis if I want it for my own knowledge, or if I wanted medication. Within a few days of that initial appointment, I realized that my anxiety was so bad that when I would get a notification of a text message or email, especially from my new therapist, I'd have panic attacks and my legs felt like they were about to collapse under my body. I was not functional at all, and needed to change something desperately. Despite my initial hesitancy for psychiatric medication, it was what I needed. And so I made an appointment for the psychiatrist.

Because I'm always afraid of not being taken seriously, and of having my issues minimized, I went through the list of borderline personality disorder diagnostic criteria and wrote down how they applied to me so I could present my case to the psychiatrist.

Diagnostic Criteria and Treatment  

You need at least 5 of the following 9 to get a diagnosis.

1. Frantic efforts to avoid real or imagined abandonment. This is one of the criteria that causes the most stigma, because people with BPD have a reputation of being manipulative in relationships (sometimes with threats of what they'd do to themselves if they were abandoned) because of the threat of abandonment. But for me it wasn't like that at all. I was constantly afraid of being rejected and abandoned, and because of that, I decided to hide my true self from most people so they wouldn't know enough about me to reject me. And when I was worried someone was rejecting me or would reject me, I made sure to be the one to leave, to end the relationship first, so it would be me doing the abandonment instead of being abandoned. 

2. A pattern of unstable and intense interpersonal relationships characterised by alternating between extremes of idealisation and devaluation. This is called splitting or black and white thinking, and doesn't just affect relationships, but comes up in life in general, having a hard time seeing shades of gray. When someone does something nice for you, you might think they are the most awesome person in the world and if they do some things that bother you you might see them as all bad, and not a nuanced individual. And often this view of people can flip-flop pretty quickly. I had this but I'm really improving a lot in this way.

3. Identity disturbance: markedly and persistently unstable self-image or sense of self. This is a little hard to explain but there's a chronic sense of uncertainty about who you are as a person and your core identity. There can be frequent changes in goals, values, and beliefs, feeling like you're not the same you used to be, or a tendency to take on the traits of others in an attempt to define yourself.

4. Impulsivity in at least two areas that are potentially self-damaging (e.g. spending, sex, substance abuse, reckless driving, binge eating). I did not have this symptom.

5. Recurrent suicidal behaviour, gestures, or threats, or self-mutilating behaviour. I didn't have this symptom either. 

6. Affective instability due to a marked reactivity of mood. In other words, major mood swings. Yes. Like one second I'd be fine and then out of the blue I'd feel like the world was over and then I'd be fine and then I'd be panicking and then fine and then lose my temper. Multiple times a day. It was rough.

7. Chronic feelings of emptiness. Yes. Or as I called it, depression.

8. Inappropriate, intense anger or difficulty controlling anger. I think this was one of my symptoms but don't remember exactly. 

9. Transient, stress-related paranoid ideation or severe dissociative symptoms. I had major dissociation but I never knew it was called that. When I get stressed out I often feel like I'm floating away, my vision gets fuzzy, things sound weird, etc... I used to just call it "feeling out of it" but it was actually dissociation. Additionally, I would often feel things "intellectually" but not emotionally, like my emotions were locked away but my brain knew I should feel sad, so there was that surface level sad, but not further inside..

So I had 6 or 7 of the criteria needed for a diagnosis when you only needed 5.

The psychiatrist I went to agreed with my self diagnosis. Yes, I had borderline personality disorder. Interestingly, he asked if we had any family history of bipolar disorder, and when I said I did, he said that BPD is often misdiagnosed as bipolar disorder, and that the biggest difference is that the mood swings, ups and downs, in the fastest cycling bipolar, type 2, is a week up and a week down, but BPD the swings are multiple times a day. Additionally, BPD has abandonment issues that bipolar doesn't.

My psychiatrist recommended 2 things for me. Psychiatric medication to help, at least temporarily, so that I could be functional enough to be able to actually get helped through therapy. I started on Seroquel, an atypical antipsychotic that is used as a mood stabilizer.  

And DBT. Dialectical behavioral therapy.

His office runs group DBT therapy and I joined their intense summer program, which had 3 hour sessions, 2 or 3 days a week (I don't remember), for about 6 weeks.

It was really expensive but I needed it, so I asked for charity to help me cover it.

That DBT course changed my life. It taught me so much about Borderline Personality Disorder and how to deal with it. As I mentioned in my previous post about BPD, DBT was created as a therapy for BPD by Marsha Lineham, and it is comprised of 4 parts- mindfulness, distress tolerance, emotional regulation and interpersonal effectiveness.

It is supposed to be so effective that statistically up to 75 percent of people diagnosed with BPD no longer fit the criteria after a certain amount of years doing DBT. Google is telling me after 1 year but I remember originally hearing it after 5 or 10 years, but maybe these are new statistics.

I learned that borderline personality disorder is caused by the combination of being emotionally sensitive by nature and growing up in an invalidating environment.

I learned that complex PTSD and borderline personality disorder are so similar that some professionals want to even rename BPD as C-PTSD. But at its most basic, borderline personality disorder is a result of trauma. Yes, growing up in an invalidating environment is a trauma. And yes, I got an official diagnosis of CPTSD as well.

Stigmas

When I first got my diagnosis, I was terrified to tell anyone about it, because of how stigmatized it is. Even I believed the stigma, that it was synonymous with abuse, until I learned more about it.

I tried talking about it online in some anonymous forums and I was told the most horrible things. 

• People with borderline personality disorder are unfixable 
• We're impossible to deal with, and that's why even therapists often don't want to work with us as clients
• We are abusers, cruel and manipulative
• That we destroy the people who we are close to
• That we create chaos in everyone's lives around us
• That we are in denial of the issues we have
• And that we aren't willing to work on ourselves and get better
• And probably the worst of all was this person who was saying that BPD isn't a mental illness, but a disorder in our personality and who we are, and there is "no person hiding underneath waiting to come out once the medication kicks in" since the essence of who we are is the problem.

That last thing of all honestly set me spiraling. I turned to the head of my DBT program and asked her if it was true that there was no "normal person hiding underneath waiting to come out" and if it was true that we were in denial of our issues and were unfixable. That was when I learned about the tremendously high "cure rate" of BPD once you learned DBT. I learned how wrong all these incorrect stigmas about BPD were.

I learned that while, yes, people with BPD can be challenging to live with sometimes, that doesn't make us abusive and in denial of our issues. Yes, sometimes people with BPD can have abusive behaviors, but not all, and most of us desperately want to get help and work at it. We're miserable untreated and want anything to feel and get better.

People with BPD can be very emotionally fragile and as brittle as one of those delicate glass figurines but that doesn't mean we make people's lives miserable.

One of the most problematic things I ever heard from a so called "professional" about BPD (her name is Doctor Ramani... and maybe I'm splitting by saying I hate her with a passion over this, but I'm not willing to hear anything else she says because of that) is that people with BPD are very similar to narcissists in that we both lack empathy. I can't even tell you how wrong this is. I know so many people with BPD and if anything, the trait that probably unites them is their empathy and how much they feel for others. So many people with borderline personality disorder end up becoming therapists, and some of the most empathetic people I know are those with borderline. That stereotype is as far from the truth as it can get. In fact, people with BPD often enter relationships with and are abused by narcissists.

And I know that I sound conceited for saying this, but I think I'm a pretty empathetic person and that is one thing people have said they like about me, and I have borderline, so I know that that "theory" is totally baseless. When I was at my lowest point, at the time I was doing the DBT course, I felt like I was not just as easily bruised as a peach, but a peach without even its thin skin and I had nothing protecting me from people's strong emotions.  I felt I was absorbing other people's emotions so much that their sadness or anxiety on top of my own was crippling me and I'd need to take a step back. Many, many people with BPD are activists fighting for the little guy, because they feel their pain and want to do the right thing. Many people with BPD become therapists and do a great job at it. In fact, I know quite a few people like that.

Honestly, some of the best people I know and admire most in the world... have borderline personality disorder.

But when I told some people that I respected that I had BPD, they were trying to tell me that I couldn't, because I... Don't fit the stereotype, basically. And I had to convince them that, yes, I do have it, and one of the top experts on it in my country diagnosed me.

Here's the thing.

I kind of get why some people have a very negative view of people with BPD. One word.

Comorbidities. 

When someone has more than one illness at once, and they compound each other, they are called comorbidities.

Both people with narcissistic personality disorder and borderline personality disorder develop these disorders as a result of growing up in a really problematic background, often abuse... and therefore it is only logical that there will be many people who have both of them. In fact, this study shows that there are a significant amount of people with both.

I am pretty sure that the people that are so negatively stigmatized with BPD are people who have both BPD and narcissistic personality disorder. Because, yes, many of the negative stereotypes people have about those with BPD really fit people who are narcissistic in addition to borderline. 

Refuse to admit they have issues? Yes, narcissists can't admit that they have flaws.
Refuse to get help? Yes, ditto. Because they don't have flaws.
Unable to show empathy? Yes.

Blaming other people for all their issues? Yes.

And when you have issues like a temper, mood swings, etc... and you think you are flawless, you won't apologize if you hurt someone when you lost it, and will blame the other person for making you be that way, and you definitely won't try to make things any better. And that definitely can be abusive. 

The more I learned about narcissism and about BPD, the more I realized that the people that abused me that had BPD also had NPD, and that was the biggest issue of all. It all made sense once I realized that.

And I realize the irony in writing a post trying to break the stigma against BPD while "reassigning blame from BPD onto NPD" but... people with NPD aren't evil people. They are suffering from trauma. And it's essentially a deep seated insecurity which comes out as narcissism. And they need help. But because they're suffering so much from this, they can't admit they need help, and so they suffer. And unfortunately others suffer with them. And it is so hard to treat NPD because it goes against the very nature of what NPD is. 

And so...

Why Get A Diagnosis?

So many people have this view that getting a diagnosis for something is pointless. Especially if there is no medicine to cure it. How does a diagnosis actually change your life? 

This comes up with so many things. BPD. Autism. EDS. 

When I got my diagnosis of Ehlers Danlos Syndrome, I was able to improve my life, despite there not being any medicine to cure EDS. Getting a diagnosis made me understand why my body was doing what it was doing, and then figuring out a way to help my body based on the understanding that that knowledge gave me.

For me, getting a diagnosis, figuring out I had BPD, gave me so much knowledge, which I was then able to use to improve my life and my mental health.

A diagnosis gave me knowledge of language and concepts.

In my year with my first therapist, I had no idea that my "floating off into space" when I was stressed was called dissociation, and the therapist never gave me that name. Had I had that name, I could have learned tools to use to stop dissociation. After doing DBT, and many years of therapy, I have so many tools in my arsenal to help me come back from dissociation, many of them from the crisis management section of DBT, but also ones I learned in somatic therapy, etc...

The knowledge that I was black and white thinking and splitting made me sometimes be able to take a step back and see that I was doing that, and then make a conscious effort to stop doing that. In fact, in dialectical behavioral therapy, the dialectical aspect is being able to see two concepts at once and integrate them, and not see all or nothings about situations. 

I would not have gone to DBT had I not figured out I had BPD. 

I know people that had BPD but because they didn't know it was BPD, they were just being treated for anxiety, which was helping only slightly, but not enough. However, once they got that diagnosis, they were able to get on the right meds and get much better.

While there is no medication to treat BPD, many people with BPD do very well on mood stabilizers, sometimes the same ones as used for bipolar, but just that alone isn't enough. Antidepressants and antianxiety meds also help. In order to actually cure BPD, you have to go to therapy, DBT, and relearn the skills. That is why it BPD is under the category of personality disorder, because just medicine won't fix things; you also need to learn important tools in therapy, not to mention healing the abandonment issues, etc.

Validation, Validation, Validation

One of the most important things I learned about BPD is that it is caused by the combination of naturally having intense emotions and growing up being invalidated. 

What is validation? It is acknowledging and accepting feelings without judgment.

We are so quick to judge people's emotions. "Oh, stop being such a drama queen." "That is something stupid to be upset about." "That's not a big deal."

But we need, by nature, to feel seen and heard, and not shut down. 

Emotions are not facts. There is no such thing as a "true" emotion, a right or a wrong emotion. Emotions just are. All emotions are valid. But that doesn't mean all behaviors are ok. You can feel a certain way, but that doesn't mean that what you feel is a fact, and that you are now allowed to behave however your feelings are directing you.

For example, you can "feel no one likes you". Which means feeling alone, unloved, unappreciated, etc... That doesn't mean that it is a fact that that no one likes you. And it doesn't mean that you are allowed to scream at people because of that. You can feel miserable and jealous that someone has more nice things than you... but that doesn't mean they actually do have more nice things, and you aren't allowed to go take things from them. 

Validating someone's emotions does not mean that you are giving them a pass to behave how they want.

When someone has intense emotions by nature (and yes, people are born that way; you can see babies like that from day one), and they are invalidated and told that their feelings are stupid, they become more and more desperate to be heard, and so they learn that the only way to be heard is to make a big freaking deal about something, screaming, freaking out, crying, etc... and that can continue into adulthood... and then you end up with BPD.

One of the ways of healing that cycle is through validation- also external validation, via therapists and loved ones, and self validation, which therapy teaches you, and the DBT tool of radical acceptance helps with that.

Because of how much I learned about the importance of validation, I try to incorporate that into my parenting, especially because some of my kids have more intense emotions by nature, or as I call it "big feelings". I want to make sure that what happened to me doesn't happen to them, and I teach them that they are allowed to feel however they want, that all feelings are welcome in our house, and all feelings matter. Again, all feelings doesn't mean all actions- you can be angry but you can't scream at someone or hit them. You can be sad but that doesn't mean you can wail into my ear.

I've tried explaining to parents I talk to about this that their kid who is really upset that they had a green lollipop and not a red one- it may be something stupid to the parent, but it obviously is a big deal to the kid or they wouldn't be that upset, and they can be validated that they're disappointed and frustrated, even if to the parent the topic seems silly...

A big part of me wonders if my EDS played a part in my developing BPD. (There is a case study I found about someone with both, but I don't know the statistical likelihood.) People with invisible illnesses like EDS, people in pain that don't look like it from the outside, no visible cuts and bruises, can often be accused of faking it and/or making a big deal out of nothing. And when you're suffering in pain and no one believes you or calls you a drama queen, on a regular basis... that is invalidation central there.

How am I now?

Honestly, right now, almost 8 years after starting therapy, and 7 years after my BPD realization and diagnosis, 7 years of using DBT skills and having gone through trauma therapies, and 7 years on medication (currently 2 different mood stabilizers and one antidepressant/antianxiety), I am in the best place mentally that I've been in my life. I can't even begin to tell you how much improved I am.

Within just one year of starting DBT and trauma therapy, I was able to overcome my incredible fear of abandonment enough to make the choice to leave my unhealthy marriage. I'm still shocked when I think about it.

I can't say I never have panic attacks but they are so, so, so much more infrequent than they used to be.

I still get triggered by things, and get PTSD flashbacks, but at least I'm able to be mindful enough to realize that that is what it is, and let people know that I'm triggered and need my space, and/or need something else, instead of potentially lashing out on other people.

I still go to therapy weekly, but instead of spending most of it on trauma healing, I am able to spend a lot of it on dealing with parenting issues instead of trying to stabilize myself. I often catch myself when I start to go through a shame cycle. I am able to get myself out of dissociative states... usually. If you'd asked me 8 years ago if I thought it would be remotely possible to be feeling and living this way, I wouldn't have thought possible.

Do I still have BPD? Do I still fit the diagnostic criteria?

• Fear of abandonment and black and white thinking in relationships- I thought I didn't really have this anymore, but recently it did come back to bite me in the behind and I almost ruined an important relationship over this. Healing isn't linear, but I'm mostly better there. 
• Splitting and black and white thinking in general? I can't say I don't do this, but at least I'm often able to notice when I'm doing that and try to reign myself in. But if I can't, I often am receptive to hearing that I'm doing that, even if I can't automatically stop doing that.
• Unstable sense of self? I think I no longer have this.
• My mood swings are mostly better, but I'm on mood stabilizers, so I don't know if I can write this one off.
  
• Same with the chronic feelings of emptiness.
• Intense, inappropriate anger... Sometimes, I'll admit. And my therapist is giving me tools to deal with this when it comes up.
• Dissociation, yes. But at least I know how to handle it when it comes up.

So yes, I still have a BPD diagnosis. But I'd recon that by far I do not look like what people think of when they think of when they hear BPD.

Autism?

There's this widely discussed concept that women with autism are often misdiagnosed as having BPD. When I discussed with my psychiatrist (who is an expert on BPD but not autism) he said that the autism traits I had can be explained by BPD.

There is an overlap.

But.

I don't think BPD in autistic people is a misdiagnosis. I think they are common comorbidities. Because autistic people tend to be much more intense emotionally by nature, they end up being incredibly invalidated, regularly. In fact, the most common "treatment" for autism is ABA, which is based on invalidating autistic kids' feelings and shutting them all down. This is why the broader autism adult community considers ABA abusive. But the result of going through that would likely result in autistic people also developing BPD.

Why Out Myself?

Ok, this long post and I still didn't say why I outed myself.

It's the same reason I write so much about Ehlers Danlos Syndrome. 

I only found out about EDS because of a few friends who talked about it... when I was 32 years old! I went through my whole life suffering and not knowing why things were going wrong with my body and blaming myself for it, not knowing how to help myself... but once I learned about EDS I was able to get into the right type of treatment that has improved my life drastically.

I write about EDS so that people can also identify it in themselves and others and get help.

The same goes true for borderline. 

If I hadn't gone and actually read the symptoms of BPD 7 years ago, I never would have realized that that is what I had, never started to go to DBT, never would have become more mentally stable. Having the name for it and the diagnosis actually helped me improve my life so much and my relationships with everyone in my life.

Learning that it was DBT gave me the language I needed to get the tools needed. I can turn to friends of mine in the BPD community and tell them that I'm spiraling, and can they please help me find the right DBT skill that would help me out. They've been awesome like that.

So with this post, maybe some of you will recognize it in yourself, and go get the right type of help for you.

But lastly, it is because I want to break the stigma.

The stigma around BPD causes a bad cycle. The people that are "stereotypically BPD", who are most likely comorbid with something else, are what comes to mind for the population at large when they hear BPD. Because of that, no one wants to be associated with that and accused of all sorts of terrible things, like I was back in the day on that message board. So we keep it a secret. And then the only people known to have BPD are the ones that fit the stereotype. And on it goes.

I'm coming out as having BPD because I want to challenge what you think of when you hear the words borderline personality disorder. I don't mind becoming another face you think of when you hear the phrase, so that maybe you can realize that empathetic, loving, compassionate friends that you love might have borderline and you didn't even notice, because BPD is not the horrible "synonym for abuser" that people think it is.

I am fully and truly aware that some people will change their opinion of me when they hear this. That some people might decide they no longer want to be my friend. Follow my blog. Be friends with me on Facebook.

But those that love me, that I wouldn't want to leave me, already know this about me. And they don't care.

The phrase that comes to mind is- those who mind, don't matter, and those who matter, don't mind.

So yes, there may be repercussions.

But I'm willing to deal with them, if the results are that some people will realize that they likely have BPD and now know to get help and what type, and if maybe, possibly, I changed your preconceived notion about what someone with borderline personality disorder looks like.