Moran: Inspiration through empathy: Living with mental illness

Published: July 22, 2010 6:00 PM
Updated: August 05, 2010 8:00 AM

For Lorelei Andrews (not her real name), volunteering to offer support to local individuals living with mental illness is cornerstone to her daily life.

I had a chance to talk with her about her story and the current state of services in Kelowna for individuals living with mental illness.

She has worked as a server, a wedding planner, a full-time student (earning two degrees), and a bridal consultant.

In fact, she started one bridal gallery in Vancouver that has now become the largest in Canada, which may even be the venue for an upcoming television reality show.

However, about five years into her whirlwind career, she began experiencing anxiety.

“I was used to delivering 100 per cent all the time, I required it of myself,” recalled Lorelei.

She came to the point that with so much pressure, she started to think of the sale instead of the client. As a very thoughtful and empathetic person, she felt her self-worth sliding.

What began as a dip in productivity ended up with her entering “self-preservation mode,” and being prescribed various medications to balance out—resulting in a near comatose state for several months.

Lorelei is living with a mental illness. As productive and successful as she was, it struck her where she least expected it. It can happen to anyone: the successful executive, the homeless man asking for change, the young woman serving your coffee.

In fact, one in three Canadians will experience some form of mental illness in their lifetime—one in five will experience it this year.

After several rounds with psychiatrists, hospitalization and group therapy sessions, Lorelei was diagnosed first with bipolar disorder, which involves extreme mood swings.

She has since been more correctly diagnosed with pervasive post-traumatic stress disorder with symptoms of borderline personality disorder.

Lorelei was lucky. She had the drive and motivation to pick herself up and learn about her illness.

After the incorrect diagnosis, she began to self-advocate and attend various meetings and courses regarding mental illness.

While in Vancouver, she was offered a position in providing wellness and recovery planning for individuals with mental illness. “I found I had a talent for translating the doctor talk to regular people” said Lorelei.

She is now living completely organic. With her newfound skill set, she came to Kelowna and started a peer support group session that occurs once a week at the Kelowna and District Branch of the Canadian Mental Health Association.

“Our group is passionate, loving and empathetic, and they are so good to each other. A lot of us are hypersensitive, and with that comes great responsibility to control and manage our emotions,” said Lorelei, who maintains a positive outlook.

“It keeps me well and grounded and balanced; if I’m not living what I’m teaching, things don’t go well.”

What makes this group unique is the focus on mental health, rather than mental illness, which is steeped in stigma. Peers learn how to self-soothe and tolerate stress, as well as about the impact of mental illness in living a happy, healthy life.

“I’m inspired by what I see when I help someone change their perspective about what’s been bothering them. It’s the same thing I used to see in a girl’s eyes when she realized she was wearing the dress she was getting married in.”

To learn more about living with mental illness, and to hear stories such as Lorelei’s, visit the CMHA Kelowna website at www.kelowna.cmha.bc.ca.

***

CMHA Kelowna, in partnership with Interior Health, is also holding a community forum regarding the state of mental health and addictions services, which occurs July 28, 5:30 p.m., at 504 Sutherland Ave.

For more information or to register, contact Charly Sinclair at 250-861-3644 or email charly.sinclair@cmha.bc.ca.

Watch for another story of another member of our community who is living with mental illness in Sunday’s edition of the Capital News and online at www.kelownacapnews.com. The Canadian Mental Health Association is a charitable association, which promotes the mental health of all and supports the resilience and recovery of people experiencing mental illness.

Jamie Moran is the director of promotion and development for the Okanagan branch of the CMHA.

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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.

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Anti-depressants and Depression

I believe that it has. Why? Well, there are a number of reasons that depression is a catch-all diagnosis. One certainly is the influence of the pharmaceutical industry given that billions of dollars are spent on anti-depressants each year. Also, doctors who are not mental health professionals (like GP’s) are prescribing anti-depressants if their patients are “depressed”.

Unfortunately, sometimes depression is not accurate. Many times when people say “I’m feeling depressed” they are really expressing that they are feeling emotional pain. Sometimes emotional pain is normal, sometimes a great deal of emotional pain is not normal and becomes problematic. When someone is feeling too much emotionally, it is not depression.

Depression is usually a problem when someone is feeling a strong lack of emotions – causing a lack of interest in the usual activities (including sex) that once gave us pleasure. Although many configurations of “depression” exist (because it is a non-specific term nowadays), the configuration in which one lacks emotions is alexythimia, although if one lives without pleasure it’s called anhedonia. I suspect that most people, when they describe being “depressed” are really describing a combination of anhedonia (where they can’t enjoy anything anymore) and social anxiety.

As I said above, another configuration that is referred to as “depression” is when the emotional pain becomes too overwhelming. In this case the person is feeling too much and would possibly beg for anhedonia because, while the pleasure would not be present, at least the pain would go away. I think that BPD probably involves more of this kind of “depression” than other disorders. The constant emotional pain leads people to doing anything to stop it (thus, this site’s name), including substance abuse, sexual promiscuity, risk-taking, self-injury and other seemingly self-defeating behaviors.

How can this be explained? How can someone be in such emotional pain all the time? One explanation comes from the study of u-opiods in the brain. A recent study by Stanley and Siever showed that people with BPD have too few u-opiods (the precursor for natural pain-killing neuro-chemicals) AND have over-active u-opiod receptors. This combination provides a baseline of pain and, when opiods are added, the brain feasts on these pain-killing substances with the over-active receptors. This is why some people with BPD can ingest large quantities of pain killers to seemingly little effect (or less effect than those without the disorder). I have heard people with BPD say they only feel “normal” while taking pain killers.

So, the question here is two-fold: First, are anti-depressants an appropriate treatment for emotional pain that is not really “depression”? And secondly, if not, what is? Low-dose pain-killers?

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Director’s Blog
April 19, 2010
What’s in a Name? — The Outlook for Borderline Personality Disorder

Thomas Insel

In Shakespeare’s “Romeo and Juliet,” the question is posed to illustrate that a name doesn’t define a person’s feelings or intent. In psychiatry, the same may be said of that which we call borderline personality disorder. Noted primarily for symptoms such as impaired mood regulation, unstable relationships with others, and self-harming behaviors, the name “borderline personality disorder,” fails to capture the essence of this serious mental illness.

As currently defined, borderline personality disorder is considered a reflection of an essential aspect of a person’s character that influences his or her way of seeing and being seen in the world. Recent research, however, has shown that symptoms of the disorder aren’t constant and may not always be as enduring as some researchers and clinicians may think. Yet fluctuating moods and behavior also happen to define another mental illness, bipolar disorder, with which borderline personality disorder may be confused….

He concludes with this:

…Whatever the outcome of reclassification efforts, however, we must keep in mind the essence of the question — that “borderline personality disorder” by any other name would still be as real, as disabling, and as necessary to treat, as other serious mental illnesses.

Read the whole post here.

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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>.

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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.

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Randomized Controlled Trial of Outpatient Mentalization-Based Treatment Versus Structured Clinical Management for Borderline Personality Disorder
Anthony Bateman, M.A., F.R.C.Psych., and Peter Fonagy, Ph.D., F.B.A.

Objective: This randomized controlled trial tested the effectiveness of an 18-month mentalization-based treatment (MBT) approach in an outpatient context against a structured clinical management (SCM) outpatient approach for treatment of borderline personality disorder.

Method: Patients (N=134) consecutively referred to a specialist personality disorder treatment center and meeting selection criteria were randomly allocated to MBT or SCM. Eleven mental health professionals equal in years of experience and training served as therapists. Independent evaluators blind to treatment allocation conducted assessments every 6 months. The primary outcome was the occurrence of crisis events, a composite of suicidal and severe self-injurious behaviors and hospitalization. Secondary outcomes included social and interpersonal functioning and self-reported symptoms. Outcome measures, assessed at 6-month intervals, were analyzed using mixed effects logistic regressions for binary data, Poisson regression models for count data, and mixed effects linear growth curve models for self-report variables.

Results: Substantial improvements were observed in both conditions across all outcome variables. Patients randomly assigned to MBT showed a steeper decline of both self-reported and clinically significant problems, including suicide attempts and hospitalization.

Conclusions: Structured treatments improve outcomes for individuals with borderline personality disorder. A focus on specific psychological processes brings additional benefits to structured clinical support. Mentalization-based treatment is relatively undemanding in terms of training so it may be useful for implementation into general mental health services. Further evaluations by independent research groups are now required.

http://focus.psychiatryonline.org/cgi/content/abstract/8/1/55

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Mentalizing conference call with Drs. Peter Fonagy & Efrain Bleiberg
At the request of participants and the positive response to this November 2009 presentation on the interactive conference call, we are making this tape availalble.

Download conference call

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If Bipolar Disorder Is Over-diagnosed, What Are The Actual Diagnoses?

ScienceDaily (July 29, 2009) — A year ago, a study by Rhode Island Hospital and Brown University researchers reported that fewer than half the patients previously diagnosed with bipolar disorder received an actual diagnosis of bipolar disorder after using a comprehensive, psychiatric diagnostic interview tool –the Structured Clinical Interview for DSM-IV (SCID). In this follow-up study, the researchers have determined the actual diagnoses of those patients.

Their study is published in the July 28 ahead of print online edition of The Journal of Clinical Psychiatry.

Under the direction of lead author Mark Zimmerman, MD, director of outpatient psychiatry at Rhode Island Hospital, the researchers’ findings indicate that patients who received a previous diagnosis of bipolar disorder that was not confirmed by a SCID, they were significantly more likely to be diagnosed with borderline personality disorder as well as impulse control disorders.

Their research involved the study of 82 psychiatric outpatients who reported that they received a previous diagnosis of bipolar disorder that was not later confirmed through the use of the SCID. The diagnoses in these patients were compared to 528 patients who were not previously diagnosed with bipolar disorder. The study was conducted between May 2001 and March 2005.

Zimmerman, who is also an associate professor of psychiatry and human behavior at The Warren Alpert Medical School of Brown University, says, “In our study, one quarter of the patients over-diagnosed with bipolar disorder met DSM-IV criteria for borderline personality disorder. Looking at these results another way, nearly 40 percent (20 of 52) of patients diagnosed with DSM-IV borderline personality disorder had been over-diagnosed with bipolar disorder.”

The results of the study also indicate that patients who had been over-diagnosed with bipolar disorder were more frequently diagnosed with major depressive disorder, antisocial personality disorder, posttraumatic stress disorder and eating and impulse disorders.

Zimmerman and colleagues note that “we hypothesize that in patients with mood instability, physicians are inclined to diagnose a potentially medication-responsive disorder such as bipolar disorder rather than a disorder such as borderline personality disorder that is less medication-responsive.”

In their previously published study that concluded bipolar disorder was over-diagnosed, they studied 700 patients. Of the 700 patients, 145 reported they had been previously diagnosed as having bipolar disorder; however, fewer than half of the 145 patients (43.4 percent) were diagnosed with bipolar disorder based on the SCID. The authors state that the over-diagnosis of bipolar disorder can have serious consequences, because while bipolar disorder is treated with mood stabilizers, no medications have been approved for the treatment of borderline personality disorder. As a result, over-diagnosing bipolar disorder can unnecessarily expose patients to serious medication side effects, including possible impact to renal, endocrine, hepatic, immunologic and metabolic functions.

Zimmerman concludes, “Because evidence continues to emerge establishing the efficacy of certain forms of psychotherapy for borderline personality disorder, over-diagnosing bipolar disorder in patients with borderline personality disorder can result in the failure to recommend the most appropriate forms of treatment.”

Along with Zimmerman, other researchers involved in the study include Camile Ruggero, PhD; Iwona Chelminski, PhD and Diane Young, PhD, all of Rhode Island Hospital and Brown University.

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