All that I am, all that I ever was…

I am more than my mental health. I am more than my homelessness. I am more than any one aspect of me. I am Addy. And this is…


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Borderline personality disorder is a hurtful label for real suffering – time we changed it

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by Jayashri Kulkarni, Monash University

Standing in the cold, dark bathroom, she hacked into her wrist with a razor blade and quietly stared at the blood that flowed from the cut. She told herself she was a bad person and deserved the pain.

A part of her felt reassured by the sight of the blood – it showed she was alive – since she felt so dead and empty inside. As she stared at her image in the bathroom mirror, she thought, “I have no idea who that person is staring back at me.”

Such deliberate self-harm is very common in people diagnosed with borderline personality disorder. It takes many forms, including intentional overdoses of tablets with excessive alcohol, risky sexual behaviour, as well as physical self-punishment.

Other symptoms of the disorder include identity disturbances, feeling “dead” inside, rage responses or difficulty regulating emotional reactions to situations, mood swings, constant anxiety and panic, poor self-esteem, memory blanks, dissociation (“out of body” or feeling “unreal”) experiences, problems with concentration, feeling invalid, and fear of being abandoned.

A bad cycle

Between 2% to 10% of the population have some degree of borderline personality disorder, which puts them at high risk of suicide. While it’s poorly understood, we know that it predominantly impacts women.

There’s no medication that specifically treats borderline personality disorder, and it’s associated with a great deal of stigma among both health-care professionals and the general community. Research shows people seeking treatment for self-inflicted harm, including taking medication overdoses, are often seen as “difficult”, a “nuisance” or just indulging in “bad behaviour”.

Rage or diffuse anger is another symptom of borderline personality disorder that’s poorly tolerated by family and health professionals. If the person with the condition repeats self-harming behaviour, frustration among family, friends and health professionals increases and may lead to decreased care.

Since people with the disorder crave reassurance that they are worthy, valid and deserving of care, this rejection sets up a dangerous spiral of increasingly harmful behaviour that’s intended to attract care.

Origins in trauma

About 80% of people with borderline personality disorder have a history of trauma. They may block out recollections of early life trauma, but the impact of their emotional, physical or sexual abuse as a young person is profound and present for many years afterwards.

More specifically, people who were sexually abused as children often feel – wrongly – that they did something wrong, that they are to blame for being abused and that they’re bad people. At a deep level, they believe they deserve punishment; their self-harm acts out this belief.

The rage of people with borderline personality disorder, which often occurs in response to apparently small issues, may actually be a totally justified – a delayed expression of anger with the perpetrator of their abuse. And their memory blanks and out-of-body responses to stress may be attempts to repress recollections of abuse and to escape from trauma.

Not all traumas stem from physical or sexual abuse. Emotional neglect or deprivation can also be difficult for people to identify and define. They can, nonetheless, leave a mark for years to come. About 10% to 20% of people who have borderline personality disorder have no known history of childhood trauma.

Difficult diagnosis

The biology of this poorly understood condition includes the hypothesis that abused or neglected children produce high levels of stress hormones (cortisol) and remain on “high alert” – watching and waiting for the next abusive episode. These stress hormones impact brain circuits and centres that determine anger or emotional control and higher learning.

Deliberate self-harm is very common in people diagnosed with borderline personality disorder. | Rachel Collins/Flickr, CC BY

Women with this condition can also have cortisol-induced cyclical reproductive changes, leading to menstrual cycle-related depression, obesity, diabetes, high blood pressure, increased facial hair, infertility and ovarian cysts. All these long-lasting mental and physical symptoms appear to have their origins in a history of early life trauma with biological brain changes.

There are effective psychological treatments, such as dialectical behavioural therapy, for borderline personality disorder but health professionals have to recognise and explain the condition before appropriate care can be provided.

And many health professionals find it difficult to recognise the condition because different symptoms come and go over time. An overall view of the person’s life is needed to correctly make the diagnosis.

Ill-fitting name

As a diagnostic term, borderline personality disorder not only fails to capture any of the underlying issues and mechanisms involved in producing its symptoms, it also denigrates. In contrast, major depressive disorder describes a serious condition with the key feature of depressed mood explicit in the diagnostic term.

The word “borderline” was used in the 1930s by psychoanalysts to describe patients whose symptoms were on the border between psychosis and neurosis. But today the most common interpretation of the word is that the condition “borders” on being a real illness.

In effect, there’s an invalidation of the illness in its name. This mirrors – as well as possibly enhancing – the feeling of invalidation the person with the condition already suffers.

And all this is not helped by the next word either. To suggest there’s something about someone’s personality that’s disordered – especially as personality is, collectively, the intimate and unique qualities that describe a person – is a devastating blow. And it cuts further into the already diminished self-esteem that people with this condition have.

Why it matters

Diagnostic labels carry a great deal of weight. They describe symptoms, attempt to answer the question of “what is wrong” and lead to a treatment plan. A diagnostic label such as borderline personality disorder with its stigma and propensity to invalidate the person’s suffering clearly has many negative impacts.

A name that captures the origins of the condition, such as complex trauma disorder, could shift the focus from seeing the person as “behaving badly” or not having a “real” illness, to recognising them as a survivor of trauma or abuse. Such a change could improve outcomes for them and their families.

Of course, what’s also urgently needed is clinical research that creates better understanding of the condition, and the development of tailored, effective treatments. But ultimately, prevention of early life trauma would make the biggest difference to the development and expression of this disorder.

In the meantime, changing the label borderline personality disorder to something more sympathetic, even if just informally, may start shifting negative attitudes to people with the condition.


Jayashri Kulkarni is Professor of Psychiatry at Monash University.

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This article was originally published on The Conversation.
Read the original article.


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Day #1: Mi Diagnoses

Over the next twelve days I will be undertaking the “Try Looking At It Through My Eyes” challenge, as devised by Bold Kevin on his blog Voices of Glass.

Normally, the challenges I undertake on this blog are rather shallow little things centered around favourite movies, books and superficial celebrity crushes. This challenge, in keeping with my (and Audrey’s) desire to move this blog ‘back to basics’, has been designed by and for people dealing with mental health issues.

Hopefully it will be as entertaining and enlightening as it will be challenging! :)

~◊~

Day One – “She” (Or if you are male “He”)
Write a short story about someone who has just been diagnosed with your mental illness/condition and who is the age you were when you were diagnosed.  What happened, what were they expecting, what are their feelings etc?

DSM

The Diagnostic and Statistical Manual of Mental Disorders; in case you weren’t aware, I’m not exactly its staunchest supporter! :p

Only day one and I’m already risking a trip to the headmaster’s office for flagrantly flouting the rules. The thing is, no matter how much I love writing fiction, I’m incapable of doing it at the moment due to excuses ranging from fluctuating moods, a downtrodden soul, various forms of exhaustion and a general lack of focus that’s currently affecting every facet of my life.

So, I will tell you the tale(s) of moments in my life when I was diagnosed with various illnesses and the wide-range of emotions that affected me on each of those occasions. Given the vast number of times I have visited psychiatrists/doctors/psychologists since my early twenties, I have chosen to look at only the first time I was diagnosed with various illness(es) and conditions rather than all the times I was re-diagnosed with the same illnesses.

Beginning with the very first time I discussed my mental health with a doctor, which was also the first time I’d discussed it with anyone, way back at the end of the millennium.

April 2000: Depression and Social Anxiety Disorder… (22)

After eight years of on/off self-harm, suicidal ideation, the onset of hearing voices and more fluctuations between mania, depression and self-destructive behavior than a champion stick shaker could shake a stick at, I found myself in a doctor’s office discussing these aspects of my life for the very first time.

I told him the stories behind some of my scars; I shared with him the moments I’d wanted to end my life; I opened up about years of depressed, melancholic thoughts; I admitted to being pathologically incapable of talking to people and of being someone who no-one is capable of loving or liking.

After listening intently, occasionally interrupting my sporadic rambles with pertinent questions, he leaned back in his chair and wrote a prescription for Prozac, believing me to be showing all the symptoms of depression and social anxiety disorder. Although he didn’t categorically proclaim this diagnosis – I’ve noticed over the years very few medical practitioners will tell their client flat-out what their diagnosis is, psychiatrists especially – he referred me to a psychologist and we began weekly appointments.

As I walked around the Ness Islands on that overcast weekday afternoon, my mind wasn’t focused on the disorders he’d mentioned, nor on the medication he had prescribed. All that fear, confusion and uncertainty would consume me soon enough. On that afternoon I felt only relief for finally talking to someone about all the pain and torment that had been festering inside me for nearly a decade.

It is a relief I have never forgotten, nor felt the like of since.

March 2007: Breakdown… (28)

The only things I can recall about this diagnosis (given my state of mind at the time) are:

1) It happened in Port Fairy.
2) Being prescribed more medication than I’d ever taken before.
and
3) The constant, all-consuming confusion over why (given what was happening at the time) was I not hospitalized?

November 2007: Bipolar… (28)

Following years of erratic behaviour, psychosis, deep depressions, multiple suicide attempts, vicious self-harm and more pain than anyone should have to endure in their lifetime, a psychiatrist in Melbourne diagnosed me Bipolar Type 1.

At the time I was about to venture to Tasmania (a dream destination since my arrival in Australia) to explore the genital isle of Australia. However, following the diagnosis I was thrust into a downward spiral of confusion, anger, pain, despair, depression and the sudden realisation that my life’s dreams would never eventuate. I could forget friends, relationships and being a father. In fact, I could forget about being someone ever again.

I dealt with the diagnosis the only way I knew how to at the time: I drank numerous alcoholic beverages, had fiery conversations with Meadhbh – who encouraged both self-harm and suicide – and turned to my recently established blog to rant about my emotions and try to understand what was happening to me. Entire days were lost to Googling “Bipolar” whilst reading whatever book I could find on manic depression in order to gain some form of understanding about what was happening to me.

It would be years before I had a firm understanding of my illness and have never forgiven that psychiatrist for destroying my only real chance of visiting Tasmania; an island I have yet to visit and now, due to the poverty and isolation in which I dwell, probably never will.

February 2008: Bipolar (again), Social Anxiety Disorder (again) and PTSD… (29)

After returning to the UK, I took advantage of a (relatively) stable period in my moods to integrate into the country’s mental health system. Following several appointments with a mental health team I was referred to Abergavenny Psychiatric Hospital where I was seen by a clinical psychiatrist.

Weeks later, I received the multiple diagnosis of Bipolar Type 1, (severe) social anxiety disorder and – due to the trauma of the abuse I’d received in 2007 – Posttraumatic Stress Disorder. All I can remember feeling at the time was exhaustion, given I was still trying to deal with the debilitating physical effects of Post Viral Fatigue Syndrome and anger, given I was only nine months from my 30th birthday and needed to have my life sorted out by the time the clock ticked over to that date.

These diagnoses (and the resulting medication) would make such stabilisation almost impossible!

December 2011: “There is absolutely nothing wrong with you…” (33)

Following years of unsupported/unmedicated erratic behaviour, mood swings, self-harm, black-outs, psychosis, nightmares, dissociation and homelessness, I was referred to a Mental Health crisis team. It was through my association with this team that I would now prefer to die a slow, painful, self-inflicted death than be involved with any mental health service in the future.

The first person to see me declared after a half-hour session that “there were no mental health problems going on” and that was that.

The second person to see me, following a near two-hour session that explored my life in intricate, intimate detail, reconfirmed my earlier diagnosis of Bipolar Type 1, (severe) social anxiety disorder and PTSD. He immediately began me on a course of medication (lithium) alongside antidepressants and antipsychotics with follow-up blood tests and appointments; all of which I attended.

The third person to see me, after the previous psychiatrist left, told me within fifteen seconds of meeting him that multiple diagnoses of mental illness were “impossible”, justifying this by stating, “what am I supposed to treat?” and from there it was all downhill. My childhood was free of major illnesses, accidents and wasn’t “traumatic enough” to cause mental health problems. What had happened with my sister was instantly discarded because, when I was twelve years old, I should have understood the complexities of her anorexia nervosa and thus any reaction to what was happening to her (and how she treated me) was entirely my fault. Everything that had occurred in my life from 2000 onwards (multiple suicide attempts, self-harm, abuse, manic episodes, depressive episodes, mood swings, PTSD, breakdown etc.) were classified as “unimportant” and his final diagnosis (as he leant back in his chair with a Cheshire Cat sized grin on his face) was that there was absolutely nothing wrong with me, that I had been “play acting mental illness in order to get out of homelessness” and there was “no medication that could help me”. Thus causing him to immediately cessate the lithium I was taking.

Within weeks I was a gambling alcoholic lost in an ocean of self-medicating, self-harming, psychotic behaviour that ultimately prompted a suicide attempt. But true to my word, I have never once returned to a psychiatrist and/or mental health team and (probably) never will again; regardless of how bad things become in the future.