Getting diagnosed with BPD and looking it up on the internet

The cacophony of misogynistic and uninformed voices drowns out the voices of survivors.

April, 2018.

I was 32 years old. It had been a little over a year since I had separated from my husband. I had attempted to take my life, again.

Doc told me he finally had a diagnosis for me after five years of treatment - borderline personality disorder (BPD).

Doc told me about the symptoms of BPD, and that he had observed these patterns in me. As he explained, I ticked off the list in my head

Fear of abandonment. Tick.

Inability to regulate emotions. Tick.

Self harm. Tick

Self-destructive impulses. Tick.

Unstable relationships. Tick. Tick Tick.

He wasted no time; said there was a group therapy available called mentalization-based treatment and directed me towards it. Before I had gotten home, a pamphlet was already in my inbox. Once I read it, I went over to Google to find out more about BPD...

Disclaimer: The information in the following slides were what I saw back then. They may have changed since then.

70% of patients attempt su1c1de at least once

At the time, I had attempted so many times that I had lost count. Reading that a significant percentage of us ended up attempting repeatedly offered a strange sense of relief. Suddenly, I wasn’t lagging behind. Here, I was just like the majority.

10% of patients die by su1c1de

Ah, so I am on the right track. This is really how it’s supposed to end for me.

It reaffirmed my will to d1e. But, it also validated the despair I was feeling. I wanted to show people around me:

Look, I’m not exaggerating. This is how badly I really want to d1e.

Lifelong, cannot be cured but can be managed with treatment

I felt gutted. Until then, treatment had only helped to certain extent. I could not imagine anything but a life of constant pain. I almost didn’t want to bother continuing on... but my sense of self-preservation egged on:

We have a diagnosis now - finally. The treatment may be more effective. It may work. We have to try.

I headed over to Reddit. I found subreddits, which were support groups for people with BPD (PWBPD) and promptly joined them.

But I also found support groups for

Loved ones of PWBPD

People raised by people with PWBPD

BPD survivors - people recovering from their relationships with PWBPD

On quora, I found downright nasty descriptions of women with BPD - witch, succubus, evil masterminds.

Whenever and wherever I looked up the disorder, what I found was that the voices of those who were around people with BPD were louder and more in number than the voices of the patients themselves.

The stigma was heavy. Some men warned other men not to “put their d1ck in crazy” while one asked, “Is BPD even real?”

Reading all of this while being as fragile as a dead butterfly’s wing left me feeling physically sick. I headed over to Wikipedia, looking for celebrities with BPD thinking what I needed was a success story. I found a list that was largely of criminals and celebrities who died young to su1c1de or drug overd0se.

Eventually, I did find a role model - Marsha Linehan. Not only did she have the disorder, she also created dialectical behaviour therapy (DBT), one of the best treatments for it.

Her story motivated me but also saddened me. Here was a disorder with such a high su1c1de rate and the best treatment for it came from a survivor. The story reeked of dismissal, a common feature in women’s health.

I checked out tv shows and movies with characters with BPD. I sought understanding and instead found manic pixie dream girls - a sexist trope where a man meets a lively candid woman who changes his life.

I’m still waiting to see my experience of BPD accurately represented in the media. Since the diagnosis, I have only ever heard BPD to describe the perpetrator in the whodunnits I like to watch.

The cacophony of misogynistic and uninformed voices drowns out the voices of survivors. It’s why men would ghost me when I would reveal that I had BPD. Or why when I went looking for comfort and validation, I found sexism and misogyny.

The stigma made me feel ashamed of something that had me in its absolute grip. It made me feel like I had a choice in the matter.

Thankfully, the first year of treatment included group therapy, which helped me see value in expression and sharing. And so, a few years ago, I started writing about my experiences with BPD. I have it displayed on all my profiles, and on the header of my website. If I lost an opportunity to work or mingle because of it, it wasn’t an opportunity I’d be happy with anyway.

I see value in sharing my experiences.

A word of caution to those on the fence to not delay in seeking help.

Putting woes into words so you can describe to loved ones what it feels like to spiral.

Going into detail so loved ones can understand the gravity of the emotional turmoil.

Sharing hacks and learnings while building an empathetic and wholesome community.

But most of all, so the young patient looking to get a glimpse of the other side sees hope and the possibility of a future.