This is a question I think about quite frequently, especially when I am putting myself out there on my social media; I often wonder what some of the people on my friends’ list might think. It’s fairly obvious from a quick Google search that the results are pretty grim, or they may have “Girl, Interrupted” in their minds. Either way, the outlook is not great, to say the least.
So I decided to pick some people off my friends’ list whom I know wouldn’t have read my blog, but know I struggle with mental health issues. I asked them to be brutally honest, knowing they actually didn’t know I have borderline personality disorder (BPD). OK, so it was a bit of a setup, but I fully intended to be honest about what I was doing afterwards. I told them I was going to give them three conditions and they had to respond with their first instincts about that condition, what they knew about it and how they felt about someone with the disorder.
Let’s dive in and see what the results were. The first condition was straight-up BPD. Here are some of the responses:
1. “It’s really crazy like bipolar, isn’t it? I try to avoid those people, which I know sounds bad, but they are too much drama and effort to be around and you only ever hear bad things.”
2. “Oh, it’s where the person is really manipulative and then explodes. One of my friend’s girlfriends had it and she was always playing games with his head.”
3. “I don’t really know except that is one of the serious ones, not like depression that anyone can get.”
4. “Well, I feel sorry for anyone with a mental illness. I don’t really know anything about it except I have heard that people act pretty bad and violent, but I guess it’s not their fault, really.”
Not a great result, but I appreciated their honesty. We moved on to the next condition, without them realizing we were talking about the same thing. This time, I framed the condition more broadly as a “personality disorder.” I was interested to see the difference in responses without them realizing I was talking about the same illness. Once again, this was without judgment and I made that clear to my friends that they could be as brutally honest as possible. So, here we go!
1. “A personality disorder could mean anything, like a psycho or someone who is really crazy, like they switch between personalities or something like that. I don’t know but I would say it’s pretty serious.”
2. “I would say it’s someone who has been abused and they swing between different personality traits. I would watch out for someone like that because I would say they would be fairly sick and need lots of help, but also in a scary way.”
3. Definitely like multiple personalities, the name says it all, that the person has an actual personality disorder, so I would assume they don’t know who they are so they take on personalities and would be really hard to be friends with because you would always be wondering what personality you were dealing with. It’s sad and I feel sorry for someone who has that. I’ll admit, though, I have no idea how you get it or whether you can be cured.
Once again, a pretty grim result. I did expect that from a broader term, like “personality disorder,” because it can be easily attached to more “sinister” mental health issues. When the notion of a “psycho” came up, I wasn’t really surprised. This person has very little understanding of mental health, so their responses weren’t surprising to me.
For the final test, I decided to include what I think BPD should be called. This is just my opinion and I am not a doctor or specialist. However, I have lived with the condition for many years and have experienced the stigma that goes along with it. Because the general public knows little to nothing about BPD, it’s usually a broad stroke of “crazy or unwell” or something along those lines. Unfortunately, the most significant pain and ultimate stigma I have faced is from health care professionals, from ambulance paramedics to emergency room nurses and doctors, and right up to psychiatrists. I would like to say there have just been one or two isolated incidents, but it has happened so many times that I have made a decision to not disclose I have BPD to anyone should I land in the hospital again in the future. I have literally seen the second someone’s demeanour has changed when I have shared my full diagnoses. I could write an entire blog on the traumatizing experiences I have had in a hospital setting.
So, for me personally, I think BPD should be called “complex trauma disorder.” If they want to throw in “personality disorder” somewhere, then by all means, but essentially to me, borderline personality disorder is a name that was given to a complex mental illness at the time didn’t fit the mould of any other mental illness, hence why it sat “on the borderline” and stayed there. Once again, this is how I view the situation.
So, I put this to my friends; what did they think of someone struggling with “complex trauma disorder?” Again, they didn’t know we were still talking about the same illness.
1. “This one sounds really sad compared with the others; the person has been through something awful like abuse and they would need lots of help and support.”
2. “I would be devastated if a friend had this. It would mean they had experienced some sort of severe trauma, probably in their childhood, and it has affected how they are trying to cope now as an adult. They would need all their friends and family around them to make sure they felt loved and supported.”
3. “I am pretty sure I know someone who has this, although I don’t really understand why it’s called a disorder. She was assaulted when she was 21 and now she has so much trouble coping and has depression and anxiety as well. But as far as what you asked, I would feel incredibly sad for someone who has this because it clearly means they have been traumatized and are struggling to cope in life because of it.”
There you go: the polar opposite response to the same condition by merely describing it in a way that reached out to the person’s humanity and compassion. I know all three of these people well and they are good people; they merely lack the understanding, like so many of the community living with mental health issues outside the bubble of depression and anxiety.
When I told them that all three “conditions” were the same illness, and sent one of my blog posts explaining BPD from my point of view, they were shocked. But I found it fascinating that by changing the wording of BPD, it directed their responses in such different ways.
And that is where I feel we still are at with BPD; there are just not enough advocates out there who are speaking from lived experience to be able to correctly articulate how it looks and feels to live with such a complex illness daily. Instead, there is a multitude of articles explaining all the negative and “bad” traits of the illness, written by health professionals who cannot possibly understand what it is like to actually live with BPD.
I still recall marching into my psychiatrist’s office for therapy, telling him the high rates of suicide among men with BPD, and then “add on that I have major depressive disorder (MDD), generalized anxiety disorder (GAD) and post-traumatic stress disorder (PTSD), and I don’t stand a chance!”
I have always researched my own illness and medications, and have absorbed everything I can in order to better educate myself on what is happening with my own health. To me, knowledge is power. Up until then, there was an enormous amount of research to delve into on MDD and GAD, so I assumed the same when I finally got my diagnosis of BPD.
I am one person who plans to take on the world, to try and make a difference in how the general public sees complex illnesses like BPD. But it has to start with one person who is willing to put themselves out there to try and make a change in any way they can. That’s exactly what I plan to do.