Kiera Van Gelder shared with me today an excellent article she wrote about “coming off the couch” and admitting/sharing that you have BPD. It’s time to fight the stigma of BPD.

coming out of the psycho closet

When Merinda Epstein, a Policy and Law Reform Officer of the Mental Health Legal Centre in Melborne Australia, made the decision to “come out” with borderline personality disorder as a consumer advocate, her therapist was horrified. She asked Epstein, “why would you want to talk about that diagnosis in public for? You’ve got a perfectly good psychotic diagnosis to use in public!”

Such unfortunately is the reaction many of us who self-identify as “borderline” encounter. You can be a drug addict, have depression, OCD, schizophrenia, or any other number of diagnoses and people will shake your hand and congratulate you on your courage and honesty. But if you say you have BPD, everyone—from counselors to well meaning friends to even DBT therapists, will prophesize that you’ve just ruined your chances of ever getting a good job, relationship or credit rating. The last thing you ever want to be in the line-up of mental illnesses is borderline. Even if you have it. Perhaps, especially if you have it.I didn’t know this at first. I came to the diagnosis from the twelve step community, where they say “you can’t save your ass and your face at the same time.” I didn’t care what I had, so long as I knew there’d be a solution to it. And the doctor assured me there was, in the form of a new treatment called dialectical behavior therapy (DBT). I called one of my few remaining friends as soon as I got out of the doctor’s office. “Good news!” I gushed “I have borderline personality disorder! And it makes perfect sense!”

There was a pause on the other end of the phone and then Laura shrieked, “there is no f-ing way you are borderline!!” I pulled the phone away from my ear. “Why not?” “Think fatal attraction.. Knives and stalking. Psychobitch from hell. That’s not you!”

My drug and alcohol counselor had a strikingly similar reaction when I told her during my next session. “You are not one of those!” she exclaimed. Both she and Laura begged me not to accept the borderline diagnosis. It wasn’t yet even an issue of going public, as with Epstein. Just self-identifying, just hitching my little wagon of dysfunction to this wildebeest elicited overwhelming negative reactions from others. (Borderlines, I should say here, don’t do well with negative reactions. Which is probably one of the reasons why so few of us “come out.”)And yet, little by little, the trickle is becoming a stream: Borderlines are coming out, voices gathering: Amanda Wang, AJ Mahari, Tami Green, Amanda Smith, Lisa Johnson, Merinda Epstein, to name just some of the most prominent. Go to Facebook, to Myspace, and other social networking sites, and the focus is shifting from message boards with anonymous sufferers to people with real names who are dedicating themselves to advocacy, building community, educating others, and sharing their experience with recovery. In the last year alone, we’ve seen more videos, books, e-books, blogs and public appearances by self-identified borderlines than we have in the past decade combined. Tami Green calls it BPD 2.0. The Borderline Recovery Movement has truly begun.

The thrill is not just that it’s happening, but how invaluably therapeutic the “coming out” process can be when there is the right support. There is more to recovery than treatment. Life is exposure, and challenging the stigma of BPD by “outing” oneself and connecting to others is a powerful technique in transforming shame and building resilience. It is not easy. But we are learning that in standing up and being open about the illness, we are able to challenge and overcome the deep self-hatred and guilt that fuels so much of our BPD symptoms ; that in facing the stigma and surviving the exposure, we are able to deeply accept all aspects of ourselves and others, positive and negative; that through this, we don’t need saviors or caretakers to fix us, but communities and companions to journey with us; that in risking the rejection and braving the pain of having “outed” ourselves, we discover the deep freedom of no longer having to hide; that as we stop fearing the diagnosis, we are no longer controlled by it.

With BPD 2.0 now a reality, a central question becomes: how can treatments and supports help people with BPD navigate the process– should they want to “come out” and connect with others in the recovery process? The answer is actually quite simple. Help us. Stop telling people with this diagnosis that it’s bad or shameful to have BPD. Affirm that when it’s time, it can be a good thing to “come out.” Just look at all the wild and wonderful people who’ve done it so far! Begin to harbor a conviction that borderline personality is not a curse but an opportunity for growth—both for those who have it, and those near and dear. Catch yourself if you start to think of Borderlines as “them”—the incurable, the lepers of psychiatry, the untreatable. If we continue down that route of condemnation, the river will dry up. Those of us who are finally emerging will retreat back into shame and despair. We will cry, why can’t people recover? And then there will be no recovery. We will never hear the voices of those who’ve passed through the fire, or gained the wisdom of transforming these painful symptoms into strengths. We’ll be right back where we started. Without hope.

And yet, that is the furthest thing from the truth. There is actually much more than hope. There is our experience, a serum of courage and strength that we’ll spoon to each other so long as there are mouths willing to open and hands willing to reach out.guest blogger Kiera Van Gelder, MFA, is the author of The Buddha and the Borderline:My Recovery from Borderline Personality Disorder through Dialectical Behavior Therapy, Buddhism, and Online Dating. You can visit her at www.kieravangelder.com.

Remission Common in BPD, but Good Functioning Lags

A substantial majority of patients with borderline personality disorder (BPD) experience remission of symptoms, and their remission tends to be stable over time compared with other mental disorders—but only half of patients also achieve good social and vocational functioning.

Those were among the findings of a 10-year study of remission and recovery in BPD patients. The study was published online in AJP in Advance on April 15 and will appear in the June print edition of the American Journal of Psychiatry.

“Symptomatically, this is a good prognosis,” said Mary Zanarini, Ed.D., lead author of the study, in an interview with Psychiatric News. “The idea that people with BPD never get better isn’t true. But as much as they get better symptomatically, it’s clear that we need to pay attention to psychosocial and vocational functioning. Just to talk about symptoms isn’t enough.”

In the study, 290 inpatients at McLean Hospital in Belmont, Mass., who met both DSM-III-R and Revised Diagnostic Interview for Borderlines criteria for BPD were assessed at admission using a series of semi-structured interviews and self-report measures. The same instruments were readministered every two years for 10 years.

At the 10-year mark, 249 patients remained in the study. (Of the 41 patients who were no longer in the study, 12 had committed suicide, seven died of other causes, nine discontinued their participation, and 13 were lost to follow-up.)

Recovery was defined as not only remission of symptoms, but being able to function both socially and vocationally. Social functioning was defined as having at least one emotionally sustainable relationship with a friend, spouse, partner, or other non-blood-related individual. Vocational functioning was defined as the ability to perform full-time work competently and consistently.

Study results showed that 93 percent of the patients achieved remission of symptoms lasting at least two years, and 86 percent achieved remission lasting at least four years. However, only 50 percent achieved the full definition of recovery including social and vocational functioning (see chart).

Zanarini speculated that many patients may have temperamental problems—anger and/or extreme abandonment issues—that persist after the remission of symptoms and that hold them back socially and vocationally. “All of our manualized treatments for BPD are aimed at acute symptoms—self-mutiliation and suicidality—and those are the symptoms that remit the most quickly,” she told Psychiatric News.

She said that a rehabilitation model of treatment incorporating training in life skills—use of public transportion, budgeting, personal care, and vocational training—is key to fully addressing the recovery needs of patients who achieve remission of BPD symptoms.

The study’s other notable finding was that despite the difficulty many patients have in achieving full recovery, both remission of symptoms and full recovery, when they do occur, tend to be stable over time. Of those who achieved recovery, only 34 percent relapsed. Of those who achieved a two-year remission of symptoms, 30 percent had a symptomatic recurrence, and of those who achieved a sustained remission at four years, only 15 percent experienced a recurrence.

Zanarini and colleagues noted in their report that those rates compare favorably with remission and recurrence rates for common Axis I disorders studied longitudinally, such as major depression and dysthymic disorder. “[T]he high rate of sustained symptomatic remission and the low rate of symptomatic recurrence after sustained remission are among the most optimistic findings about borderline personality disorder reported to date,” they said.

In an interview with Psychiatric News, Zanarini said, “Depression and bipolar disorder tend to remit quickly but recur much more often. Recovery from BPD is more akin to the process of maturation. It occurs slowly, but once you achieve a certain level, you stay there, and it takes some enormous stressor to push you back.”

Joel Paris, M.D., an expert in BPD, reviewed the study for Psychiatric News. He said that it confirms and extends findings from the Collaborative Longitudinal Personality Disorders Study and the McLean Study of Adult Development. This study found that while symptomatic improvement is sufficient for many patients to stop meeting criteria for the disorder—such as no longer cutting themselves or overdosing—functional improvement is much slower.

“The study suggests that while BPD is by no means incurable, many patients continue to function at a low level for years,” Paris said. “So what are the clinical implications? On the one hand, when we thought that BPD was a life sentence, we avoided treating patients who can in fact be helped. And some people do make a full recovery, going on to live normal lives. On the other hand, other cases are more chronic. If we become too optimistic, we may mislead our patients into expecting the impossible and not provide the supportive and rehabilitative services they need.”

“Time to Attainment of Recovery From Borderline Personality Disorder and Stability of Recovery: A 10-Year Prospective Follow-Up Study” is posted at <http://ajp.psychiatryonline.org/pap.dtl>.

From the LA Times:

Study shows long-term success in recovery from borderline personality disorder
April 15, 2010 |  6:00 am

Borderline Borderline personality disorder has long been considered one of the toughest psychiatric disorders to resolve. There have been many questions about how to best treat the condition, which is marked by unstable relationships, unhappiness, mood changes, impulsive behavior and poor decision-making.

Advances in understanding and treating the condition have been made in recent years, however. And a new study offers hope that recovery, although challenging, can be long-lasting.

Many Zanarini of McLean Hospital in Massachusetts studied 290 hospitalized patients with BPD over 10 years. Half of the patients recovered from the disorder after 10 years of follow-up. Recovery was defined as at least two years without symptoms and both social and vocational functioning. Overall, 93% of patients achieved a remission of symptoms lasting at least two years and 86% for at least four years.

The research suggests that while it may be difficult to achieve recovery, once recovery has been attained it appears to last. While many treatments focus on symptoms, therapy should include work on improving relationships and functioning in the workplace, areas that vastly boost the odds of long-term recovery, the authors said.

The study is published online Thursday in The American Journal of Psychiatry.