Do we want people to believe that BPD is a real psychiatric illness that they must manage for the rest of their lives, or do we want to promote a message of hope which says, “You can become free of your emotional distress and live the life that you want”?
By presenting BPD as a severe mental illness which can be managed but not cured, the medical model of the BPD label utterly fails to promote hope. Additionally, the medicalized concept of BPD is scientifically broken: It does not describe a valid illness which is consistent across a population.
Why do we keep using BPD if there is so much wrong with it? Is it possible that we would be better off without BPD?
And if BPD is should be abolished, what should replace it?
This article addresses how to replace BPD.
To this question, my first answer is “Nothing” – that we should simply abolish BPD – and my second answer is “Emotional Dysregulation Susceptibility Syndrome”, which I will explore as a hopeful alternative. Let’s discuss these options.
Background: The Medical Model and My Opposition to NEA and “Make BPD Stigma Free”
My central conceptual argument is that Borderline Personality Disorder as defined in the DSM is an unreliable, invalid concept. Given its current popularity, it’s not easy to fight against the prevailing notion of BPD as a valid mental illness. But after speaking to many people who also experience BPD as a flawed, discouraging concept, I am more resolute in this view than ever. If you are unfamiliar with the argument against BPD, please see here, especially Myth #5:
While I prefer to understand people without labels, due to practical considerations I contend that BPD should be replaced by a more hopeful label. This new label should refute the myth of BPD as a life-long mental illness and emphasize vulnerability to stress along a continuum.
My position against BPD directly opposes the thinking of many in the psychiatric establishment, including large organizations like TARA BPD, the Treatment and Research Advancements Association for BPD, and NEA BPD, the National Education Alliance for BPD.
TARA and NEA assert that BPD is a “serious psychiatric illness”, one which they can reliably investigate and for which they will create improved treatments. In my opinion, these medicalized viewpoints represent poor research and outright misinformation.
Let me list and critique some of National Education Alliance BPD’s main positions. I hope the reader will sense how badly NEA’s claims on BPD, which often border on outright lies, fail to meet the criteria for good science and basic common sense.
My Response to NEA’s Misinformation about BPD
1) BPD is an “illness”.
NEA’s position: BPD is a single illness which causes unstable mood and behavior.
Edward’s response: BPD is not one unitary entity that causes anything. BPD is not a single illness because the symptom-cluster that supposedly represents BPD cannot be reliably identified by any biomarkers (genes, brain scans, etc.) nor reliably identified by different psychiatrists across a population, as the NIMH recently admitted.
The way a person understands their world based on past experience leads to unstable mood and behavior.
2) Genes are involved in causing BPD.
NEA’s Position: Scientists generally agree that genetic and environmental influences are likely to be involved in causing BPD.
Edward’s response: This is misleading on so many levels it’s hard to know where to start. Again, BPD is not one reliable entity. And there is no evidence that genes “cause” any of the distress-experiences denoted by the BPD misnomer – such thinking involves the mistaken assumptions that genetic and environmental factors work as separable influences in a quantifiable manner. I have written about these distortions extensively in my article on twin studies (#4).
3) Brain scans provide evidence that biological factors cause BPD.
NEA’s position: There is evidence that biology is a factor in causing BPD, due to imaging studies in people with BPD showing abnormalities in brain structure and function.
Edward’s response: Does NEA think the public cannot understand basic cause and effect? Of course seriously distressed people have observably different brains than “normals”. That doesn’t mean biology or genes cause these differences; neglect, abuse, and lack of love, which are much more prevalent in those labeled “borderline”, inevitably lead to different brain functioning. But that doesn’t even mean those things cause BPD or that BPD is real. Never take a difference for an illness.
4) Biological factors make people more likely to develop BPD.
NEA’s position: The current theory is that some people are more likely to develop BPD due to their biology or genetics and harmful childhood experiences can further increase the risk.
Edward’s response: The current theory is a demonstrably false hypothesis. Constitutional vulnerability to stress may make it easier for some people to become overwhelmed by environmental stress, but that doesn’t mean that BPD is in any way a valid illness, nor that such people cannot become well. Plus biology and genetics do not act alone in the way implied in this reductionist model (see – http://www.madinamerica.com/2015/06/are-dsm-psychiatric-disorders-heritable/ )
5) The prevalance of BPD can be quantified.
NEA’s position: BPD affects 5.9% of adults at some time in their life
Edward’s response: Does anyone really believe that a subjective, descriptive label with no biomarkers can have its prevalence reliably identified to a tenth of a percentile?
6) BPD is a life-long mental illness.
NEA’s position: People with BPD have BPD for life. (NEA stops short of saying this outright, but they imply it. Their website talks over and over about managing and reducing symptoms in “borderlines” of different ages, never once mentioning the possibility of becoming free of “the illness” or discussing the possibility of full recovery)
Edward’s response: This is one of the most damaging myths being promoted about BPD. Problems that are mislabeled BPD can be fully recovered from; people who once approximated borderline criteria can eventually live a satisfying, emotionally normal life. Many thousands of people have already done so. Getting better is hard work, but people do not have to cope with and manage BPD for life. People need real hope, not the discouraging prospect of a life-long illness.
My Manifesto Against National Education Alliance for BPD
As can be seen, NEA BPD set themselves up as the experts on how to define and treat the BPD “illness”, an illness label they obviously intend to keep. But they may not have considered that former “borderlines” can see through their propaganda.
My position on NEA’s “BPD as a serious psychiatric illness” notion is this:
- Severely distressed people do not have accept the label BPD as an identity nor as an explanation for their problems.
- Emotional problems are not reducible to “psychiatric illnesses”, nor are they the exclusive province of psychiatry.
- Effective help which often leads to full recovery from problems mislabeled BPD already exists. Recovering does not require the assistance of “experts on BPD”, nor does it require DBT and medications, although these can help. Also, people can have their own definition of recovery and a meaningful life.
- Emotional problems mislabeled BPD can be completely healed and do not have to be managed for life.
It’s time to say goodbye to National Education Alliance’s harmful theories about BPD as a life-long psychiatric illness, to end the borrowed time these theories have been living on.
Why Reducing BPD’s Stigma is Doomed to Failure
I also oppose the message of blogs that attempt to put a positive spin on BPD, like “Make BPD Stigma Free”. In my opinion, reducing BPD’s stigma and building “BPD Pride” is doomed to failure. To me, these efforts resemble shifting deck chairs around on the Titanic. Similar attempts to reduce depression’s and schizophrenia’s stigma have foundered miserably; the problem is that reducing complex emotional issues to medical labels explains nothing and fails to empower people.
Two examples of such programs are instructive:
- “Defeat Depression”, a large scale British campaign to reduce the stigma of Major Depressive Disorder, failed to reduce stigma and did not improve outcomes according multiple follow-up studies.
- “Beyond Blue”, an Australian attempt to reduce the stigma of so-called mental illnesses, also backfired. Studies investigating its effect found that those who knew less about mental illness diagnoses, or who were given a diagnosis but rejected it, had better outcomes than similar people who believed they “had a mental illness.” This unsettling finding has been confirmed in John Read’s research (e.g. Models of Madness).
The disturbing conclusion of this research is that accepting that you have a “mental illness” – as opposed to rejecting the medical model of emotional distress – actually decreases the chances of recovery. This shocking Youtube presentation by critical psychiatrist Sami Timimi covers this and other eye-opening facts about “mental illness”:
If Defeat Depression and Beyond Blue failed to destigmatize depression, why should a destigmatization program for BPD succeed? Alongside “schizophrenia”, BPD is the most unreliable, invalid, confusing, harmful, stigmatized, and useless label. Even if BPD were to lose its stigma, it would remain an unreliable term that explains nothing about an individual’s problems.
Abolishing BPD – The Ultimate Goal
Borderline Personality Disorder can and should be entirely abolished. BPD should be consigned to history as a tragically misguided way of
concretizing emotional distress.
Here is how a world without BPD would look:
1) No More BPD Diagnoses: Distressed people would no longer receive the BPD label during hospitalizations or psychiatric consultations. They would be understood as individuals using the Formulation approach to distress (see article #19 here – https://bpdtransformation.wordpress.com/2014/12/04/19-hope-meaning-and-the-elimination-of-borderline-personality-disorder/).
2) Label-Free Treatment: Psychotherapists and treatment programs would help distressed people without viewing them as borderline, no matter how much the client “fit” that outdated term.
3) Label-Free Family Understanding: Families would be helped to support their distressed members without being fed the fiction that their loved one “has BPD.” Parents, siblings, partners, and children would find that their loved ones’s problems can be understood without calling them borderline.
4) A New Research Paradigm: into severe emotional problems would cease to be focused around BPD. It would instead use the emotional dysregulation spectrum concept that I’m going to discuss. There would be more qualitative, experience-focused research, and less quantitative label-focused research.
5) Abolition of BPD and the DSM: BPD would be abolished from the DSM, as it has already been removed from ICD (Europe’s version of the DSM, from which BPD was recently voted to be dropped). Furthermore, as an unscientific fraud full of fictional illnesses, the entire DSM would be eviscerated.
In time, BPD would be viewed as an outdated relic, a sad symbol of an age where psychiatrists constructed bizarrely misguided labels for emotional distress. People in the year 2200 would look back on “BPD” in disbelief, much as people today look back at centuries-old conceptions of physical illnesses. BPD would be mocked alongside notions of evil spirits released by bloodletting and plagues caused by divine curses.
A BPD-free world is possible. People often underestimate what can be done over long periods of time with sustained, gradual effort. Perhaps BPD’s life is already growing short.
How Would We Understand People Without BPD?
What a scary idea! How could we ever understand people showing “borderline” symptoms without labeling them with BPD?!
How do we understand the problems of anyone we care about?
1) Listen to their story. Learn about what past and present experiences are causing their distress. Develop a shared understanding of their problems based on their history.
2) Learn about what they want to change in the future. Develop a shared understanding of their needs and dreame.
3) Understand fundamental human needs for security, dependence, respect, and independence.
These are the fundamental steps in the Formulation approach to emotional distress, as described here in the story of Emma:
People labeled “borderline” can be effectively helped without labeling them as BPD. But because of the reductionist ideology that has crippled the minds of too many mental health “professionals”, abolishing BPD without a replacement label may be a bridge too far. The Big Pharma profit incentives which maintain the need for medicalization of emotional distress present another obstacle.
The First Step Toward Abolishing BPD – A New Name
Supported by the public’s ignorance about what a precariously perched house of cards “BPD” really is, the profit motives of psychiatrists and Big Pharma will likely block a total abolition of BPD, even though BPD paradoxically never existed and does not exist today. Therefore, I suggest the intermediate step of renaming BPD, something which has already begun to happen for other pseudo-illnesses such as “schizophrenia”.
If done well, renaming BPD would accomplish multiple goals:
1) Undermine the false conceptualization of emotional distress as an illness that is consistent from person to person.
2) Emphasize that emotional distress varies along a continuum and that people labeled “X” are not always “X” (i.e. are not always distressed, but are vulnerable to stress).
3) Reduce stigma by introducing a fresh name without negative connotations.
Despite these hopeful goals, one might argue that replacing BPD with another name would lead to just as much stigma and misunderstanding.
But could a new name truly aspire to be as miserably uninformative as Borderline Personality Disorder?
Would BPD by any other name smell just as bad?
I doubt it.
Japan, Jim Van Os and the Abolition of Schizophrenia
I’ve gone through some brainstorms about what BPD could be renamed, drawing on the campaign against “schizophrenia” for ideas. Many people are calling for schizophrenia to be abolished, and Japan legally abolished schizophrenia about 10 years ago
(Yes, there really are no more “schizophrenics” in Japan. They have a new, less-stigmatizing name for psychotic distress, meaning “integration syndrome” in Japanese, and people undergoing psychotic episodes are no longer called schizophrenic. The entire Japanese government-recording and psychiatric-labeling system for psychosis has been changed. See here – http://www.schres-journal.com/article/S0920-9964(09)00140-6/abstract ).
Jim Van Os, a Dutch psychiatrist, created a website labeled “Schizophrenia Does Not Exist” here: https://www.schizofreniebestaatniet.nl/english/
Van Os renames schizophrenia, “Psychosis Susceptibility Syndrome” , or PSS. The name implies that psychotic experience occurs along a spectrum of severity, involves vulnerability to environmental stress, and that people who have been psychotic in the past are not always psychotic today. In this model, “schizophrenia” as a discrete illness is meaningless and false.
Taking Van Os’s lead, I suggest replacing Borderline Personality Disorder with “Emotional Dysregulation Susceptibility Syndrome”, or EDSS.
The Emotional Dysregulation Susceptibility Syndrome
If BPD were renamed Emotional Dysregulation Susceptibility Syndrome, what would that mean? The EDSS concept would contrast with BPD as follows:
1) Spectrum, Not Illness: EDSS represents a spectrum or continuum of increasing vulnerability to emotional distress. Despite similar appearances, people vary along this spectrum both in degree and kind of distress experienced. People would have more or less “EDSS” in relation to others and themselves at different times. EDSS is therefore not one illness, but a spectrum of related conditions – it refutes the misrepresentation of BPD as an internally reliable illness.
2) Vulnerability, Not Illness: EDSS represents a heightened susceptibility or proneness to emotional distress, usually correlated with neglect and abuse in childhood. EDSS itself does not cause distressing symptoms; rather, it represents the heightened likelihood of environmental stress causing these distress experiences. Compared to BPD, EDSS gives more weight to what happens around a person, rather than to isolated non-contextual internal experiences. EDSS is a syndrome – again meaning it represents similar-appearing experiences which do not necessarily reflect a consistent underlying illness.
3) Recovery and Freedom, Not Management: EDSS represents a psychological state that someone can be in at a certain time of their life, but can grow out of and be free from at a later time. It is in no way a lifelong condition. With effective help, people have a good chance of moving out of the EDSS spectrum for good. This refutes one of the most damaging lies about BPD: That BPD is a life-long illness.
(If you could rename BPD, what would you call it and why? Or would you keep BPD? Let me know in the comments.)
A Psychodynamic Model of the EDSS Continuum
Drawing on my psychodynamic background, I conceptualize Emotional Dysregulation Susceptibility Syndrome as a continuum marked by a relative deficit of positive self/object images, combined with a predominance of all-bad images of self/other within a person’s mind. The deficit of good internalized experience and the predominance of all-bad self/other images would usually correlate with neglect, lack of love, abuse, or trauma caused by parents and peers in childhood and young adulthood. I developed this model fully here, drawing on the “master theorist” of borderline-spectrum conditions, Ronald Fairbairn:
The deficit of all-good images leads to the inability to comfort oneself when under stress (i.e. emotional dysregulation), and to the increased susceptibility to stress relative to most emotionally-healthy people who had more consistent past and present support. All the other distress experiences commonly labeled “borderline” – e.g. destructive acting out, lack of identity, rapidly shifting moods, extreme rage, splitting, etc. – would be understandable results of having to cope with the missing self-comforting functions that can only be provided by a predominance of good self/other images over bad self/other images, i.e. enough good experiences in one’s past to reassure oneself when under present-day stress.
These distress experiences would also be understood as present-day replayings of past trauma; i.e. as the projection of the all-bad self-object images internalized in childhood onto others in the present, which make the person experiencing EDSS feel that they are “bad” and others are rejecting or unavailable.
EDSS might also be conceptualized as the spectrum encompassing the “Out of Contact” through “Ambivalent Symbiotic” Phases in this 4-phase model:
These descriptions do not represent an illness, but rather a dynamic state of relating to oneself and others at a certain time. One can function at any point along the spectrum from almost Non-EDSS to very severe EDSS – i.e. from approaching a normal range of being able to comfort oneself and function well, with only occasional regressions into serious distress – down all the way to very severe EDSS, in which the distress experiences are constant and severe to the point that normal functioning is not possible. Hopefully that the paradigmatic differences between BPD and EDSS are clear.
You Don’t Have to Accept the BPD Label
I hope these ideas will be encouraging and provoke thought about whether BPD really is valid and useful. Replacing BPD might seem unthinkable now, but there were times when women voting seemed impossible, when black people being free seemed impossible, and when tobacco causing health problems seemed impossible. Radical change can happen. Often, the process leading to a dramatic change is gradual and unseen, like when decades-long pressure building under the Earth’s crust goes unnoticed before an earthquake.
If a small but growing number of people reject the BPD label, this process can build momentum toward renaming and/or abolishing BPD. I encourage everyone reading this who has ever been labeled “borderline” to consider that you no longer have to identify with or accept BPD, period.
If a psychiatrist labels or has labeled you as BPD, or if the voice of people calling you borderline is stuck in your mind, I encourage you to tell them something like this:
“The BPD label you’ve called me is a simplistic checklist of distress factors, factors which anyone under stress for long enough can experience to different degrees. There are no reliable genes, brain-scans, or other biomarkers which can identify so-called BPD. In fact, BPD is in no way a reliable classification; it is an “illness” fabricated out of thin air without a basis in real science.
There is therefore no proof that I have an illness like you say, or that there is anything innately wrong with my brain; most likely, I am reacting in a perfectly logical way to the stresses I’ve gone through. There are other, better ways to understand my problems, and I do not accept the false label of BPD that you are putting onto me. If I get enough help, I can fully recover and live the life that I want.”
Psychiatrists and therapists need to hear this from more of the people they call “borderline”!