Borderline Personality Support Group

A lot of us, including me, talk about being misunderstood and mistreated by professionals. I am wondering if others have tried to communicate to authors, website owners, and or noted "experts" about their concerns and problems.

I have, with limited luck. I am a bit frustrated now as I wrote to NAMI about this (twice) and have not heard back.

I also wrote to Glenn Close's new website and again have not heard back. I have had better luck with others, though. At least John Gunderson replied. He seemed to take my views seriously, though kind of patted me on the back in saying something like "I think things are changing." He also does not believe in a name change bc in his view all the research done on "bpd" would then apply to a disordere that does not "exist." I disagree, but..

I had great luck with Alex Chapman, but he already gets it.

Have any of you taken a stand like I have? It is not generally my style, but I felt it necessary after witnessing and being a victim of so much bs

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I have only written the football player that came out saying he had it. The link he provided for info leaned more towards the stigma and not correct information. I never received a reply though.

I've never thought to. I'm still stuck in the accepting stage and wanted to not be found out stage.

Peaches, I wish some famous women would come out with it. I can think of a couple that I bet have it...

Porch, I understand that very well. You are dealing with too much right just with a new diagnosis. I certainly didn't mean to pressure anyone. I don't usually use my full name when I write. I would rather remain anonymous too.

Well, one important person who has is Marsha Linehan, the creator of DBT. I dont know though, someone famous coming out with it could go one of two ways; 1)Educating people on BPD or 2)Providing more info that feeds the stigma like the football player did.

Oh right, of course. I guess I meant someone who is famous for something else, someone that the public likes and cares about. That might help associate positive things with bpd.

I understand what you're saying, I was just mentioning that it all depends on the information they provide when it happens. I would find it fantastic if they came out and had people looking at an accurate side of it. I just know how much inaccurate info there is, especially on the internet. Thats why I have certain sites or info that I direct people in my life to if I choose to tell them, because I know they will go searching on their own anyway. I really dont tell many people anymore though.

I totally agree about info out there. It seems there is more bad than good, I am afraid. I had actualy forgotten about Marsha Linehan when I first posted this. I was thrilled when she came out with her history bc she had already esetablished herself as a repected clinician and researcher. The main negative I have read about her beliefs is that hospitalization should be "as unpleasant as possible" for people with bpd. I think I understand why she said that (to prevent dependence and regression), but I think now it's been quoted by others and legitimizes cruel treatment of those with this diagnosis.

Anyway, thanks for your thoughts.

Hi, I'm new and wanted to lend my 2 cents to this very important topic

CENT #1: I think it's quite painful for someone who's already emotionally raw to be told it's advisable to hide their condition from others. This just adds to the shame and isolation we already feel. Yet that's exactly the advice I've received from family and therapists who, no doubt, only wanted to protect me from others' negative judgments.

CENT #2: John Gunderson's idea that renaming BPD would confuse people seems illogical. Bipolar was called manic depression not so long ago, and everyone -- certainly everyone in the medical field -- knows that these two terms refer to the same illness. If BPD were to be renamed, people would understand us - and the newly diagnosed would understand ourseles -- so much better! What are some ideas for a more accurate moniker? Emotional Dysregulation Disorder?

Yoyogirl,

I think your input is worth more than two cents . I agree on both counts. The first is a shame but true at this point . I think having some positive images and better understanding would help.

Re the second, yes! And DID used to be MPD. His argument is lame, IMO. I think a lot of people think Emotion Dysregulation Disorder is much better. It'd also be nice to have it on Axis One for better insurance coverage and for recognition that it can be ameliorated, cured even.