I wish I had heard of BPD about 5 years ago

[PokeyPuppy]

I'm new here. My adult daughter has BPD. Now that I've heard of it and have read quite a bit about it, I can easily see her alignment with the list of symptomatic behavior. Why, if BPD is so common, do people not know anything about it. Why, when your child is struggling, does it take years to get to the appropriate diagnosis? Why is figuring out the right meds left to a process of trial and error, especially when genetic tests exist to tell us which meds are NOT a good idea for an individual. How many kids DIE because of this crazy slow process?

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[js friend]

Hi Pokeypuppy,

I dont have the answer but I totally agree with you. My udd has never been dx with bpd but to me it has been obvious after doing my own research. We were referred by my gp to go for a mental health assessment and saw a family therapist that concluded after speak to us together and individually my udd was simply trying to find her own way through life and that I was just an overbearing mother.....yet this was from a place that specialised in adolescent mental health!!!
At the time it was mentioned that they wouldnt dx her as she was under18yo and her personality hadnt completely developed yet.....but how was this going to change in the next 2 years I dont know???
I also think they didnt want to say because of the stigma of bpd at the time. I dont know if this has changed now as my udd is now 31yo but it would have been benefical to me if someone had mentioned the possibilty of Bpd in knowing how to manage the behaviours more effectively if nothing else.
When I was a new member on this website there were 2 posters whose children ended their lives. Both were teenagers. I know one was dx with bpd but not sure about the other one.

[kells76]

Hi PokeyPuppy, just want to add my voice along with js friend to welcome you to the group  

You raised great questions. I think at some level, all of us here on BPDfamily.com wish that the pwBPD in our lives was in effective treatment and was healing. Everyone's lives would be so much better that way. I know that even though my husband's kids' mom has done many hurtful things over the years, what I do want for her is to get better.

Not sure if you've heard of the NEABPD (National Education Alliance for Borderline Personality Disorder) before -- they're a fact-based group committed to raising public awareness and using clinical findings to educate people about what BPD is and how to address it. So much of what you asked about tracks with what they mention here in their BPD overview:

Borderline personality disorder (BPD) is a serious mental illness that centers on the inability to manage emotions effectively. The disorder occurs in the context of relationships: sometimes all relationships are affected, sometimes only one. It usually begins during adolescence or early adulthood.

While some persons with BPD are high functioning in certain settings, their private lives may be in turmoil. Most people who have BPD suffer from problems regulating their emotions and thoughts, impulsive and sometimes reckless behavior, and unstable relationships

Other disorders, such as depression, anxiety disorders, eating disorders, substance abuse and other personality disorders can often exist along with BPD

The diagnosis of BPD is frequently missed and a misdiagnosis of BPD has been shown to delay and/or prevent recovery. Bipolar disorder is one example of a misdiagnosis as it also includes mood instability. There are important differences between these conditions but both involve unstable moods. For the person with bipolar disorder, the mood changes exist for weeks or even months. The mood changes in BPD are much shorter and can even occur within the day.

Officially recognized in 1980 by the psychiatric community, BPD is more than two decades behind in research, treatment options, and family psycho-education compared to other major psychiatric disorders. BPD has historically met with widespread misunderstanding and blatant stigma. However, evidenced-based treatments have emerged over the past two decades bringing hope to those diagnosed with the disorder and their loved ones.

They also mention that BPD affects 1.6% of adults at some point in their lives. What I learned in their Family Connections class is that BPD tends to be over-diagnosed in females and under-diagnosed in males, and there is a very high percentage of males in prison who likely have BPD.

And, I learned from the class that even though schizophrenia affects a lower % of persons, it receives a higher dollar amount of research funding than BPD. So, like they mentioned, BPD is very behind in research -- though hopefully catching up. I'd encourage you to dig around the NEABPD website if you're curious about cutting-edge research, and family supports.

js friend raises the issue of juvenile diagnosis. I hope the tides are turning there -- Dr. Blaise Aguirre's book Borderline Personality Disorder in Adolescents may help there. js friend's point is a good one -- so my child can't possibly have BPD at 17 years 11 months but does have it one month later -- really? Aguirre's book does discuss how to dissect "normal" adolescent behavior from "BPD" adolescent behavior, which is helpful.

But -- all of that that might be beside the point when you and your daughter and your family are hurting  

Does she live at home with you, or elsewhere? And does she have any kids? We can start there and see how we can best support you.

[Ourworld]

Hi,
I just want to say from a totally non-clinical viewpoint that I think that the mental health world can certainly see signs when a problem is showing up in childhood. While I had no idea about this what-so-ever because I had a quiet child making all A’s there were signs that something was actually wrong and it would have been nice if this had been realized.
They have started trying to reach out to kids that are being trafficked, makes you wonder why they don’t reach out to extremely sensitive kids.
The only reason my child did so well in school was probably because she had a genius-level IQ, but the thing that gets me is her lack of social skills and extreme shyness no one ever mentioned. But the schools don’t even have a child psychologist check on kids every once in awhile to catch potential problems to report to parents for the parents to address, because they are minors!

This in itself is ludicrous! In the very small town where I live out in the hill country, at the elementary school is a behavioral specialists that observes the children and will let the parents know of any concern, so things can be addressed and hopefully corrected sooner rather than later. But instead of something like this, my daughter became affected at age 11 when her father abandoned her, so by the age of 15, she could no longer control her symptoms, did poorly at school her Junior and high school years (and again NO ONE took notice)!

It’s just really sad and pathetic, if you see something in a friend’s child, tell them, they may not care or it could make a huge difference.

[BPDstinks]

Agreed!  I have NEVER heard of this!  I have since researched this heavily, attended NAMI & read all the books I can get my hands on!  I NOW see all kinds of signs that THIS was going on, however, truly never heard of this!  I wish I could say I am better equipped to handle, however, I am still as confused as ever & really miss my pw BPD!

[PokeyPuppy]

She lives with me. She has no children. She wants help. She stays on her meds with reminders from me. She is in therapy. Here's the kicker: Every morning, when she wakes up, she wishes she had not done so. She does not, however, want to kill herself. She just "doesn't want to be here anymore."  However, she feels like she cannot tell that to her therapist, because she fears hospitalization. "I want help. I need help, but I want to stay here. I don't want to be 'locked up'."

So, the therapist is not getting the full picture.

Her boyfriend left her a couple of months ago. It had gotten to the point that he couldn't get through an hour with her without triggering her somehow. That's been really rough. She is a lot better, but still drowning in sadness.

[kells76]

She lives with me. She has no children. She wants help. She stays on her meds with reminders from me. She is in therapy. Here's the kicker: Every morning, when she wakes up, she wishes she had not done so. She does not, however, want to kill herself. She just "doesn't want to be here anymore."  However, she feels like she cannot tell that to her therapist, because she fears hospitalization. "I want help. I need help, but I want to stay here. I don't want to be 'locked up'."

So, the therapist is not getting the full picture.

I haven't mustered the courage to tell my therapist everything yet, either. I can relate to that hurdle. And I think both you and I can at some level understand her fear of "being taken away and locked up" if she "says too much". If I thought that something I said would lead my T to initiate an involuntary hold, I'd be pretty freaked out, too, and reticent to share.

It is promising, though, that she is disclosing those fears to you. How do you typically respond?

Are there any "home visit crisis teams" in your area? Wondering if there are some in-between resources, where they are more than just therapy but won't cart her away to a hospital.

How often does she go to therapy? And does she ever call a crisis hotline/suicide hotline?

Her boyfriend left her a couple of months ago. It had gotten to the point that he couldn't get through an hour with her without triggering her somehow. That's been really rough. She is a lot better, but still drowning in sadness.

Ouch... that's hard for all of you.

I'm learning a lot in the NEABPD Family Connections class I'm currently taking. One way they described BPD is that there are three main factors feeding in:

-increased emotional sensitivity
-increased emotional reactivity
-extended time to return to baseline emotions

Anyone can have any of those factors (I'm sensitive and have a slow return to baseline, but am not very reactive), but a pwBPD will likely have all three.

In terms of sensitivity, a pwBPD might experience something as an 11/10, but someone without BPD would experience the same thing as maybe a 3/10. If you have no "emotional skin" then a "light touch" is excruciating.

In terms of reactivity, something that sets off a pwBPD can be brushed off by a non-BPD.

In terms of baseline, while someone without BPD might be able to recover from a conflict or argument in an hour or so, someone with BPD might take days or longer to come back.

Again, it's really promising that she seems less sad. That's pretty incredible that she is doing better after a few months. Breakups are hard on anyone, so the fact that she is making a little progress is a good thing. I do see a connection between how you describe her and those factors -- maybe someone else could've processed the breakup in a few weeks, but she is taking a long time to return to baseline, and may have taken the breakup in a much more sensitive way than someone else.

...

Can I ask, how old is she?

Does she have a job outside the home, or does she volunteer, take college classes, do any gym/sports?

And does she typically seem to see you as an ally?