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ADA, Borderline Personality Disorder, discrimination, labeling, poor science in DSMIV, wastebasket diagnosis, wrong diagnosis
I was apalled the other day when when I read several posts by young women “memoirizing” about ex-lovers with the full-blown speculation in each case that said partner was and is “a borderline.”
Wait just a minute. A person, a human being, is not “a borderline.” Moreover, before writers go off opining and diagnosing and publishing what they view as “personal truth”, they need to be sure they have the facts– all of them. Despite the fact that the DSM IV lists this as a personality disorder, many, many experienced and qualified people absolutely hate the terminology; the forward- looking clinical community is searching for something far less stigmatizing to characterize the ups and downs of the trauma survivor. Eventually this faux disorder will be redacted from the DSM.
There is no more disempowering, stigmatizing diagnosis in all of psychiatry. Moreover, labels– especially this one– maim and kill. I watched my mother, who fit the profile and wore the label, go from being a vibrant young artist, wife and mother to a blob of protoplasm incapacitated by over fifty shock treatments across 15 years. No one ever taught her to grab hold of her inner resources,her creativity and her strengths, which were plentiful.
So it was that on the last day of her life, after decades of being passed out in a chair in our study living from a self-perception as a defective, washed-up human being, when she was angry at me, she walked out of the nursing home to get her hair done. It was too much for her after years of inactivity and smoking; she had a massive heart attack in the chair in the beauty shop and died.
I try to find comfort in the fact that this happened at the precise moment in which she started to take responsibility for herself and that thus she died trying. But this, of course, left me terrified for myself. Terror perpetuated the mythologies of incapacitation that some people said applied to me. Losing touch with my strength, I capsized and floundered, having to rescue myself from fears morphing into beliefs leading to the deadly idea that I didn’t deserve to suck air.
Minus any validation of my strengths, I came dangerously close to checking out myself. But the important thing is that I didn’t and that I got in touch with the real me who is strong and brave, who has endured the unendurable and lived to tell about it– like so many of us with deep-running childhood wounds and patterns of interaction that put us back “there”– in hell.
Some therapists really get off on putting people in a box and shunting them on through the system. In the past decade, especially in the court system in every state, more and more women have been assigned this label and told that they must undergo years of therapy– notably, Dialectical Behavior Therapy or DBT– to even be able to function.
Last year, in a dehumanizing and unethical ambush attempt by a pair of therapists who should be stripped of all licensure, I was force-fed the diagnosis of BPD. We fought it out in Court and I won. I won the right of self-determination– to call myself a writer and a human being with a history of trauma. But don’t think that I don’t fight that tape within that says, “You’re a mess. You’re a sicko. You belong in a mental hospital” night and day.
As a civil rights activist, I have advocated and claimed and perpetuated the idea wherever I can that those diagnosed with Borderline Personality Disorder are in fact trauma survivors whose pain must be validated and whose ability to heal must be reinforced. Thank God I am not alone in this fight:
Here is an excellent excerpt by the webmistress/therapist at GoodTherapy.org:
“Recently, someone asked GoodTherapy.org to include Personality Disorders within our list of Concerns Addressed (this is the list of concerns that people can select when searching for therapists and the list that all members select from when creating their listing). Our decision was a unanimous “no” and we thought it would be fair to explain why and to give our members the chance to make an argument for the use of the “Personality Disorder” diagnosis. I should say that we do support the inclusion of “personality disorder” symptoms in our list of concerns and we are currently working on translating these to fit into our list…. Please feel free to add your comments to this discussion below by clicking on the comments link directly below this post.
The following is our reasoning: We believe that by labeling a person as personality disordered or, in its more gentle form, stating that a person has a personality disorder, we are essentially claiming one’s personality, their person-hood, their essence, is fundamentally flawed. What else are we, other than our personality? Such a diagnosis is very likely, if not absolutely, to produce more shame, worthlessness, and rejection in a person who probably has enough of it already. I don’t care how it is framed, normalized, or expressed: having a diagnosis called “Personality Disorder” says one thing: you are fundamentally flawed.
Please don’t get me wrong, I’m not saying I’ve never worked with people whose inner systems fit the criteria for the DSM categories of Borderline, Narcissism, and others. The difference is that I don’t use the categorical and shaming word “Personality Disorder” to describe a person’s experience and I don’t view people as fundamentally flawed. Deeply wounded, yes, powerfully protected, yes, but fundamentally and irreparably flawed, no.”
Thank God for those who break with “mainstream” clinical thinking to challenge these horrific labels, which rank right up there with the mind-numbing doctrine of “original sin” in the shame and guilt we humans have brought to bear on one another.
The young writers were upset with me when I weighed in, commenting that I was “off-topic”, blowing off what I had to say.
The only way to deal with the stigma that sets in in which one is viewed through uninformed and fear-filled eyes is to live against it. To claim one’s personal power, thereby breaking out of the box– to be in the world as who one truly is– a writer, a carpenter, an activist, a whole person. To do this requires, daily, action both physical and mental against the tapes.
This, as I understand it, is how Jews maintained their dignity during the Holocaust. Viewed as vermin by the Nazis, they supported each other, sustaining their cultural and individual identities, refusing to surrender to shame.
Sorry, memoirists who think nothing of exposing family and ex-loves to write a sensational tale: you do not have the right to take another person’s clothes off. Vent your “victimologies”– that you were somehow drawn into a relationship with a person in pain– privately. Own your choices and tell a story that offers hope to the world.
Excellent post, Jenne’.
Might we all learn to challenge people who refuse to challenge themselves when they seek to destroy by seeking to expose.
Labels truly disempower; they can create a problem finding (or keeping) a job, getting married, traveling, and so much more. When they hold the implications and assumptions of something as broad and encompassing as “personality disorder” they strip away all humanness.
I’ve often wondered how people would react if they knew the meanings of the codes on the statements they must submit for health insurance coverage or had access to the notes in all the many files that get created from the time a person is born. I’d like to think people would get upset enough to agitate for and demand change, to insist that more thought would go into the labels’ and codes’ applications.
“Own your choices and tell a story that offers hope to the world.” Imagine!
The clinic where I’ve been going for counseling for the last 10 years changed its name a few years ago from “Middlesex Mental Health Clinic” to “Center for Behavioral Health.” I did a double-take when I walked up to their front door and saw the new sign. “Who changed the name?” I asked my (terrific) counselor. He said it was the decision of the powers-that-be. “But to what end?” I asked. He couldn’t tell me. I don’t think anyone understood how horrified and maligned I felt. Or why. Yes, a rose by any other name smells just as sweet, and the clinic still serves the low-income community as same as it always did. But now I shake my head in dismay. To me, this name change implies that it is our own behavior causing us to react (or feel) inappropriately — not that we are in trouble mentally/emotionally and need help coping and coming to terms with our problems. “Behavioral Health?” What does that mean — that we’re just not behaving properly and we need some tutoring, and if we do learn how to behave we’ll succeed, end of story? It’s ridiculous. We’re not talking after-school detention here, or getting grounded for not doing our homework. It’s beyond ridiculous. It is a substantial step backward. I still cannot imagine educated, caring people coming up with this term.
Hey Laurie- I’m late getting back to you, but I understand your frustration. I had a reaction to the replacement of “mental health” to “behavioral health” on NPR during a piece on PTSD and our troops. Good venting and fodder for yet another post, yes? xxxJenne’
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I am near tears after reading this post. ‘Traits of BPD’ came up in my diagnosis two years ago and I was too terrified to acknowledge it because of the stigma surrounding personality disorders. I have been tackling a handful of other disorders with determination and success, but I pushed this whole BPD thing to the back burner. That is, until my recent breakup.
There is no way I can look back on that relationship (or any of my relationships) without feeling like a monster. So, in a panic to not feel doomed, I started to search for books to help me understand and tackle this disorder. Unfortunately, what I found first were the ‘victimologies’ – books and reviews by non-BPD people whose lives were made hell by people with BPD. I saw the words ‘untreatable’ and ‘destructive’, and I shut down. I thought, ‘So not only do I feel like a monster but I am always going to be like this.’
Thankfully, I stumbled across this post and read these words:
“Deeply wounded, yes, powerfully protected, yes, but fundamentally and irreparably flawed, no.”
I need to believe that I can heal even if, right now, I still feel like I’m healing just to make amends and not necessarily like I deserve to heal. But healing is healing and I just want to thank you for sharing your thoughts on the matter.
Hi– thanks for stopping by. If you would ever like to exchange mail, I’m at jenneandrews2010@gmail.com. I’ll be thinking of you….xxxj