My Mother’s Skull Is Burning: A Story of Stories

Rita, May 1, 2017

Professor Jane Gilgun sent me an email one early morning in March, this year. We have met several times at ICQI. We share common interests. Not only social work and research but also storytelling and poems. Jane invited me to give a TED-like talk at the Social Work Day. I am a researcher in community mental health care in Norway, and I work with service users’ stories. Jane asked me whether I would like to share a story that has shaped who I am and what I do.

I do not know where to start. There are so many stories, my inner library is growing every day, and it intertwines with every new meeting, all the faces that pass by me. The conversations I take a part in, the ones I miss, the ones I hear, and the ones I wished I could have heard many years ago. Stories connect to my research, my writing, my daily life. I cannot live without stories. Narratives are sense-making tools (Tekin, 2011) that organize our lives, put experiences into context, and enable us to make sense of the series of events in our lives. Narrative social work relies on storytelling to promote health and well-being (Baldwin, 2015). Narrative practice entails listening openly and respectfully to service users’ stories, and the person who is listened to can experience an increased sense of insight, meaning, and empowerment. Narratives bring meaning to experience, and they are uniquely and inherently relational.

I am supposed to tell a story that has shaped not only my research but also my teaching, my community work, and who I am. It is a great and perhaps overwhelming task for any one of us. I could be overwhelmed by emotions or by nerves any moment now. In fact, I could become so nervous that I lose words and my voice starts to tremble. I remember Patti Smith singing at the Nobel Prize ceremony in Stockholm, Sweden, last year. Bob Dylan had won the Nobel Literature Prize, and Patti Smith was going to perform “A Hard Rain’s A-Gonna Fall,” a song she had loved since she was a teenager, and a favorite of her late husband.

In her essay, “How does it feel” published in The New Yorker in December 2016, Patti Smith described how she stood before the Swedish King and Queen and some of the great minds of the world, “armed with a song in which every line encoded the experience and resilience of the poet who penned them.” She was stunned by emotions while she was singing, and overwhelmed by nerves. She could not continue her song; she had forgotten all the words. They were a part of her, inside her, but she could not draw them out. She had to stop and ask pardon, and then attempt again.

Another woman I admire is the author Siri Hustvedt who wrote a novel called The Shaking Woman or a History of My Nerves in 2010. Two and a half years after her father died, Hustvedt was going to give a lecture in his memory. She shook so violently, from the neck down, that she could hardly stay on her feet. This shaking repeated itself in public. She had struggled with migraines from childhood, but she had never experienced the shaking before.

Hustvedt’s novel is a personal investigation. Her symptoms took her to a philosophical inquiry into psychiatry and neurology. Was her shaking abstract or anatomical? Could it be diagnosed as depression or nerves? Was it related to traumas or could it have been stress? The possibilities were many.

This story reminds me of my mother. She is 74 years old today and healthy. Life has not always been like that. My oldest brother died in 2006, 39 years old. He had been in occasional contact with mental health services throughout his life; those meetings were never easy for any of us, his family members. My mother comforted the family, and after his death, she held us in her arms. She never shed a tear, and she carried all our sorrow on her shoulders. She did this for 2 long years. She once told me without batting an eyelid, “no parent should survive their children.”

One day my father called me. He said my mother was in a helicopter ambulance on her way to the hospital. He was at home. She wanted me to meet her at the hospital. When I arrived at the hospital, I met my mother who was shaking with nerves and crying. She told me she had felt it for a long time, but she had been afraid of telling us. I asked her what she was talking about; she said, “My skull is burning.” It felt like her head was burning from the inside. She could feel the flames licking her brain.

My mother had several neurological tests. I went with her, and I could see that the doctors thought my mother had become mentally ill. They started asking her questions that confirmed my suspicion. I know, from my work, how clinical interviews transform into psychiatric reports. Information that fits the psychiatric formulation is selected to fit the reports. This includes reformulating information into psychiatric terms and objectifying users through the systematic deletion of their perspectives, obscuring the professional’s participation and fragmenting the client’s experience to fit into the standardized sections of a psychiatric report (Barrett & Minas, 1998; Georgaca, 2013; Hak, 1989). The report then appears to be an objective documentation of the user’s symptoms that supports the diagnosis given and the course of action recommended.

The doctors wanted to give my mother medication for her sleeping problems and depression, and I cannot remember all the pills they suggested. She described her burning skull repeatedly. She looked so fragile and old, scared, and helpless, while she tried to understand what was going on. I refused, on her behalf, the acceptance of medication. I told the doctors that she had lost her first child 2 years ago, and that she had not given herself time to grieve. She had taken care of all of us; she had forgotten herself. My mother had no other words for the pain of losing her first son; it felt like her skull was burning. I found her description of the incredible pain she felt very understandable.

I agree with the Professor in nursing philosophy, Phil Barker, who does not condemn psychiatric diagnosis per se, “but merely acknowledge the limitations of this way of representing the human experience of problems of living, especially where this is afforded primacy” (Barker, 2001, p. 220).

For many people, the need for care begins because we have to create an understanding of what has happened to us in light of our personal experience. We need to tell stories to make meaning in our life. I took my mother back home from the hospital. Her grieving process could start with the family around her. Without being diagnosed, without all the medication. As time went by, my mother changed her story through the storytelling process of reflecting on her past in the light of the changing present, by which she was also creating her future.

In line with Kinderman, Read, Moncrieff, and Bentall (2013), I think that we

. . .need a revision of the way we think about psychological distress. We should start by acknowledging that such distress is a normal, not abnormal, part of human life — that humans respond to difficult circumstances by becoming distressed. Any system for identifying, describing and responding to distress should use language and processes that reflect this position. . . . There is no easy “cut-off” between “normal” experience and “disorder.” (p. 2)

Let us go back to the stage with Patti Smith at the Nobel Prize ceremony. She was standing in front of the world, without words. She attempted once more, and she sang with great empathy. It is the best version I have ever heard of “A Hard Rain’s A-Gonna Fall.” Smith describes it wonderfully in her essay:

It was not lost to me that the narrative of the song begins with the words “I stumbled alongside of twelve misty mountains,” and ends with the line “And I’ll know my song well before I start singing.” As I took my seat, I felt the humiliating sting of failure, but also the strange realization that I had somehow entered and truly lived the world of the lyrics.

My mother did truly live the world of pain, the world of loss, and she became a new and stronger woman with the years. In Japan, there is an art form called kintsukuroi which means “to repair with gold.” When a ceramic pot or bowl breaks, the artisan puts the pieces together again using gold to create something stronger, more beautiful, than it was before. The breaking is not something to hide. It does not mean that the work of art is ruined or without value because it is different than what was planned. Kintsukuroi is a way of living that embraces every flaw and imperfection. Every crack is part of the history of the object and it becomes more beautiful, precisely because it had been broken (Doyle, 2015). ¹ I think our gold is storytelling and narrative practice.

***

Alec: June 21, 2017

I feel excited about having made a new writing friend. Bengt Karlsson has recently emailed Rita’s story to me, asking on behalf of them both if I’d like to participate in a conversational autoethnography. Knowing Bengt as I do, I chuckle as I read how he thinks this would be a great idea for me, given that I’m a “newly retired university Reader with too much time to just hang around.”

I’ve been trying to figure out how to do retirement increasingly better since starting it when I hit 65 last month, and time is a big issue. I no longer fit into the clock time of work, so maybe I could see Rita and Bengt’s invitation as a call to join them in “Wild Time” (Griffiths, 1999), where people and ideas come together in a playful way outside of fenced-in, institutional clock-, and deadline-watching.

I read Rita’s words about her mother, who’s not that much older than me. Growing old scares me. A few weeks before my final day at the University of Brighton, a professor colleague made contact about research I’d been part of in recent years. He said that he “wanted to catch me before I disappeared into the ether.”

Retirement: the terrible plot line—

Fade into the woodwork

And die.

My staying very active as an autoethnographer, post-retirement (Grant, 2018; Klevan, Karlsson, Turner, Short, & Grant, 2018; Turner, Short, Grant, & Adams, 2018), hopefully signals my need to keep my lamp bright.

I have a further quick look at Rita’s work. Given her apparent narrative interests, I wonder where she stands on storying mental health, so I also download and printed-out her co-written paper from a few years back, “The Lady in the Coffin”—Delusions and Hearing Voices: A Narrative Performance of Insight (Klausen, Haugsgjerd, & Lorem, 2013).

I’ve been fighting for years to get the demedicalization narrative agenda into mental health/nurse education, in the form of promoting lived-experience narratives, and autoethnography, all explicitly critical of the medicalization of human misery (e.g., Grant, 2015; Grant, Biley, & Walker, 2011; Grant, Leigh-Phippard, & Short, 2015; Grant & Radcliffe, 2015; S. Smith & Grant, 2016). Now, often pessimistic about the likelihood of this work impacting much on mainstream institutional psychiatric practice, I’ve got to a point somewhere between the time of burnout and death, where I’m worried about the drying up of email and twitter exchanges from those I regard as demedicalization allies, still in university and practice employment. So what have I left?

What’s left is not even the wry smile,

The hanging onto theory until it’s time to go,

But words are still there.

Words still come.

What’s left is a kind of sadness.

Sadness? Not even that,

But words still come.

Words always soar above the literal.

Words are all that’s left.

I don’t get why people don’t get the oppressive, corporate, and political significance of medicalizing the socio-material problem of human misery. It hurts that in stories of recovery across professional literature and social media, the dominant master narrative of broken-brain illness and its attendant tropes are never seriously challenged.

My wife frequently calls me back to retiree world: “When are you going to stop thinking about work?” Each time she does this, I feel sad and frantic. I keep on reminding her that I’m now an independent scholar. She keeps on reminding me that I’m a husband. This evokes guilt in me. And panic. What time am I ever in? What time should I be in?

My silences

Signal danger for her:

Covert subversion,

Secret in-the-head employment

When I should be walking the dog.

I often have troubled dreams. I dream of my late brother sometimes:

“Retire and have some quality time”

He instructs me again and again,

As he sits vastly, in front of his tv,

(“the biggest screen you can possibly buy”)

Where he remains until it’s time to die.

“Quality time” specters relentlessly haunt my dream time. Quality time is about doing the normative and mediocre, and throughout my life, my family has always tried to pull me back into this. Mediocrity is a dull point between the polar extremes of good and bad; a kind of mid-range thoughtless use of time in the service of cultural conformity that always has mass appeal (Minnich, 2017). A hugely successful way of being in the world, mediocrity certainly excels.

Repeatedly swallowed, normative mediocrity results in a form of cultural obesity that shortens time and clogs the arteries of creativity, difference, and transgression. Fat, clichéd assumptions and ideas grow, don’t they? The fat idea of mental illness, for example, is like a vast, nonshrinking blob of meat sitting behind the kebab shop window of an institutional psychiatry always in cahoots with BigPharma. It feeds and satisfies mental health professionals, the public, and twitterati celebrity-mental health survivors alike. The fat idea of conformity to a normative mental health research agenda takes the fat idea of mental illness as a given, as right, and proper.

In dream time, I think about my brother again:

My brother was very fat.

He had a fat wife.

They fed on fat ideas, which they spewed up again and again.

They swallowed everything.

Fat words popped out of their fat mouths,

Faster than fat food.

Clogging up the space between us

forever.

Undigested half-truths,

plump lies,

celebratory cakes.

Gorging on their unacknowledged mediocrity,

their recipe for knowing me

was always minus my ingredients.

I read Rita’s story properly. “My mother’s skull is burning . . .” engages and moves me. I connect with what she says about the need for mental health workers to listen openly and respectfully to service users’ stories. But as I read her comments about Phil Barker’s mental health nursing philosophical position on psychiatric diagnosis—as a pros and cons choice issue rather than an oppressive act of cultural colonization—I’m taken back to my years of time spent disagreeing in print with him about this position.

I maintained that his work minimized and smoothed over the politics of representation between user-survivors’ lived experiences and mental health academics’ and practitioners’ colonizing accounts of those experiences. I saw this directly illustrated in the romanticized, naïve, and patently false fundamental premise of the Tidal Model (Barker, 2001)—that mental health service users are always entirely in charge of themselves (Grant, 2014). User-survivor accounts on the toxic nature of mainstream psychiatric treatment, including narrative entrapment in diagnosis (Grant, Leigh-Phippard, & Short, 2015), give the lie to such a liberal-humanist, rose-tinted position.

However, I find myself nodding in agreement with Rita’s assertion that stories about human misery give meaning to distress experiences, and that the act of listening and telling is dialogical and relational, aimed at empowering the person who is telling their story and being listened to (Klevan, Karlsson, Ness, Grant, & Ruud, 2016). But I still don’t have much of a handle on what Rita’s implicit narrative (Richardson, 1997, 2001) is around what she takes for granted in writing about mental health issues, and whether this fits with mine. I need to feel less unsure.

So I read “The lady in the Coffin . . .” I like this article too because it coheres with my narrative interests at theoretical and applied levels. I’m also pleased to see that Rita and her writing colleagues regard mental health service user “insight” as mostly toeing the line with the dominant biomedical, “mental illness” accounts about what people are supposed to be “suffering from.”

I connect very much with their position around rescuing patient narratives as meaningful performative dialogic events, but I’m troubled by the subtext. I read this as being about the function of these events in working alongside the dominant biomedical approach, while not robustly troubling its assumptions and vocabulary. Rita and her colleagues say in “The Lady in the Coffin” that they support of the call of Kinderman and his colleagues to drop the language of “mental disorder.” However, this is contradicted in their work by assertions of people experiencing changes to their lives as a result of “severe mental illness” (Klausen et al., 2013, p. 431), and their apparent acceptance of the category term “schizophrenic” as a valid, discrete, ontological phenomenon (Klausen et al., 2013, p. 437).

After two readings, I categorize the article as more liberal-humanist “fair and balanced” than “critical standpoint.” But this judgment troubles me: I wonder if I’m actually being fair; whether the authors intended this reading? I also wonder if I have read their work as they intended, and whether the politics at play in their institutional allegiances and location had anything to do with its conciliatory nature, in seeming to reconcile narrative ways of knowing with biomedical epistemology?

Several interesting, synchronous, things happen during July, in the month since I received Bengt’s email. I am alerted to a release by Justin Karter (2017) of the critical mental health web international platform, Mad in America, about a recent report to United Nations Human Rights Council in Geneva. The report was presented by Dainius Pûras, a professor of Psychiatry from Lithuania, appointed by the United Nations as an independent expert. It calls for an urgent need to prioritize policy innovation at population levels internationally, by targeting social determinants of mental health problems while abandoning a medical model focus on “disorders” and individual “cures.”

I join in a twitter dialogue with U.K. demedicalization champions, Ann Cooke (2014), Lucy Johnstone (2014), and others, about the possible need to rename the term “psychosis.” Such a vocabulary shift would honor the heterogeneous nature of voice hearing and distressing beliefs, in the absence of any empirical support for their location in discrete categories of “mental illnesses.” Such a shift would also reflect the social rather than biological ontological status of these phenomena, and their links to life traumas. Finally, Ann Cooke sends me a URL link to her recent co-written publication. In “Responses to the Publication of the American Psychiatric Association’s DSM5” (Kinderman, Allsop, & Cooke, 2017), Anne and her colleagues conclude that because the origins of human distress are largely social, diagnostic terms should be replaced by straightforward problem descriptions.

I say yes to Bengt and Rita’s invitation in a reply email. I tell them that I feel excited about this collaboration and say also that

It seems to me that what we’re embarking on is: writing writing-stories, writing friendship and writing critical mental health.

I’m currently immersed in Laurel Richardson’s (1997, 2001) idea of writing writing-stories (which Richardson (2001, 34) describes as historically positioned “narratives that situate. . .work in academic, disciplinary, community and familial contexts”). Friendship as method, in conversational autoethnography, builds on Lisa Tillman-Healy’s (2003) original idea, which Bengt, Trude, Nigel, Lydia on me worked on recently. (Klevan et al., 2018)

***

Bengt, August 1, 2017

I am trying to express my thoughts and feelings related to what Rita and Alec have written so far. I am happy to be invited to read and respond to the work of Rita. At the same time, I get this disturbing feeling of trying to express my thoughts, feelings, and experiences in a language other than my own. Primarily because I need to think and express myself in a way that feels strange to me, I am struggling to find the precise words that can cover and express what and how I would write in my mother language. I feel in a way that my text is becoming distanced and not precisely expressing what I would like to write. This is influenced by the debate that has been a part of the Norwegian universities and university colleges: that academic writing has to be in English and not in Norwegian. That is the only way to be a part of the international community of science and research and play a leading part in the development of the future in Europe and the Western World.

I read a book during the summer called “As close to life as possible” (Andersen, 2017). Its title is a quotation from Book 1 in the “My struggle” series, written by the Norwegian author Karl Ove Knausgård (2013). The book is an anthology of different Nordic researchers in comparative literature, from Denmark, Sweden, Finland, and Norway. In the introduction, the editor writes that the book emerges from different seminars mostly with English as the preferred language.

All the manuscripts are translated back to the different native languages of the authors in the attempt to strengthen the common ground of the Nordic languages. This is very important, the editor writes, in a time where the Nordic countries are overwhelmed by Anglo-American culture and politics. He exemplifies this with the new trend to translate Norwegian, Swedish, and Danish into English to make sure that everyone in the three countries understand each other. Therefore, the book is written in the origin languages of the authors, in the assumption that readers from the three countries will understand very well the text.

I was very inspired by the words of the editor and I thought of Rita when I read this. The reason is that there is another common, and older, language of Sweden, Finland, Russia, and Norway—the Sami language, with all its different dialects. I do not know if Rita writes and reads the Sami language. What I know is that Rita has her family roots in and from the Sami culture and tradition. Knowing that, I came to think of how Rita feels about writing and expressing herself in English, being aware that it has been a big issue and struggle for the Sami population to read and write their own language in school and as part of their daily living. I thought maybe the title of Rita’s work “My mother’s skull is burning” was inspired by and understood as a metaphoric and concrete way to express her mother’s distress.

Maybe Rita refused, on behalf of her mother, to accept the medication the doctors offered. I thought the medication in a way represents the Western way of thinking—a way of thinking that has been oppressing and colonizing the Sami culture and population over many centuries. I was reminded of the story of the old Sami woman diagnosed as psychotic who met a Norwegian psychiatrist. She told him that she was waiting for a special wind that came blowing into the area where she lived. It came every year at the same time during the spring. When the wind was blowing, she felt so well and nobody needed to worry. The psychiatrist was wise enough to listen to the old women. He left by wishing all the best for her.

This story is also an(other) example of what Rita and Alec are writing: the importance of listening to people’s stories. I would like to add: and to believe and rely in what people are saying. When I write this I feel sick, as if the words are filling my mouth and want to be thrown up or out. How many times have I been writing, saying, and stressing the importance of letting people tell their stories, and at last people are listening, and finally we can try to understand what we have said and what we have heard.

For me, this is crucial in the field of mental health and in every other field of our society, and is politics at micro and macro levels. The former finance minister of Greece, Yanis Varoufakis (2016), has called his latest book: Adults in the Room: My Battle With Europe’s Deep Establishment. Reading the book is another example of how some people (The EU Commission and Ministers) are not at all listening to other people (The Ministers and the Population of Greece), and not believing and acting on their stories. Since 2015, Greece has doubled their unemployment from 13% to 26%, their debt from 110 to 175 billion Euros, and about 900,000 Greeks have moved to other countries to make a living.

There is another side of writing about the importance of listening to people’s stories that we acknowledge in this article: the formal recognition of embedded understandings and hopes. If we turn people’s stories into research and academic writing then the stories are more likely to be attended to and believed in, as, for many, academic writing makes them more believable and trustworthy. I read somewhere that in the whole world, 17,000 academic papers are published daily. I wonder how many stories there are to be told and read.

I also came to think of another paradox in the Andersen (2017) book, “As close to life as possible.” I read the text as an attempt to understand, in all the six books discussed, the authors’ life struggles in a scientific way. In doing that—dissecting and interpreting the author’s life stories—I wonder if the attempt to deeply understand authors’ lives gets lost in academic and scientific vocabularies, which are too far removed from life itself. This is a disturbing feeling I have about the attempt to captures people’s lives in mental health academic and scientific papers: I often feel that the stories of lives are lost. The book Our Encounters With Madness (Grant et al., 2011) was an exception to this and a very inspiring book for me.

Finally, my dearest colleague Marit Borg and I have published a book about mental health recovery (Karlsson & Borg, 2017). While working on it, I felt so happy about trying to write critically about mental health recovery, as it is often conceptualized and understood in an oppressive and cultural colonizing. You have criticized Phil Barker for his position, Alec, and you refer to your work in this article. That makes me happy, and reminds me of the bodily feeling I had meeting you for first time expressing, “You are my soul brother.”

Happiness unites the feelings of connecting and realizing that there is somebody else out there in the world thinking as I do; the feelings of always disturbing, troubling, and challenging the mainstream in the field of mental health; and the feeling of left alone when nobody wants play with you or even choose you for the football team. Diversity is talked up in mainstream mental health, but doesn’t live up to the ideological rhetoric if you are too different. These feelings came to me when I read what you had written, Alec. It reminds me of being called Judas in 1997, when I argued for ending the postgraduate program in psychiatric nursing, suggesting the need for a new multidisciplinary program in mental health care.

These are the stories we live by. Do we need to make them scientific and write them into academic papers to be told, listen to, and believed in? What is the difference between the novel, “My Struggle” and “Our Encounters With Madness”? When is storytelling research, art literature, and autoethnography simply a new form of scientific colonialization of people’s stories of life?

***

Rita, September 15, 2017

Alec, September 23, 2017

I’ve been very excited by the responses from Bengt and Rita over the last week, and have read our developing work several times. I think about Rita’s opening remarks about narrative social work and narrative practice in health at the beginning of our article, and want to add “narrative competence” to her list. We not only need to tell and listen to stories respectfully but also need to strive to develop skill and finesse in doing so (Corbally & Grant, 2016). A lot of what passes for “active listening” by mental/health professionals, and in wider public life, seems to me to be the exercise of what social psychologists call “confirmation bias”—where what we start hearing and seeing is quickly shoehorned into our preexisting theories about the other. At that point, we stop listening.

Reading what Bengt has written has reinforced for me that one of the main things the three of us have in common is our belief in “the importance of listening to people’s stories.” Indeed, our story of stories is about listening to each other and to people more widely, across language, cultures, and time. I have started to think about our meta-story in New Materialist terms (Coole & Frost, 2010; Fox & Alldred, 2017). Maybe, in our emerging work, we are creating new assemblages, flows of affect, capacities, and lines of flight?

When I read again what Rita described as kintsukuroi, or repairing the cracked with gold, my thoughts turn to mental health institutional and professional approaches to “recovery.” It seems to me that such approaches want to bring the repaired cracked back into line so that they don’t stand out as different, and jar (pun intended) with the normative. Sometime in September, I decided to drop the “recovery” word from my writing and speaking, and instead talk about “becoming-other” (Fox & Alldred, 2017), where the pieces of re-storying a life don’t necessarily go back in the same way, where some pieces are thrown away, with newly discovered and unfamiliar pieces crafted into place.

Bengt wonders whether autoethnography can function as a new form of the scientific colonizing people’s life stories. I’m with Rita here—for me the opposite is more the case: that autoethnographic storytelling underpinned by developing friendship can produce counter-narratives to radically challenge prevailing cultural truths. I think our article is testimony to that, and Rita’s most recent entry on “transitions,” including her surprise about where our story is going, makes me think that we are engaged in a diffractive enterprise (Grant, 2018). We are all materially entangled within an emerging becoming-other text, where we reflect on growing up, and growing older and perhaps wiser, as academics and people, moving and changing in and out of stories. I sympathize with Rita’s description of her early deferral to scientific and professional authority as a younger academic (I was there once too, long ago), but contrast it with my long-standing need to refuse narrative entrapment in colonized and colonizing narratives.

Bengt writes about the possibility of the fact that turning people’s stories into research and academic writing might increase the chances of them being listened to and believed. This has great personal resonance for me. I was involved over September in several important twitter dialogues. I became a supporter of the Beck Road Alliance (BRA; www.jacquidillon.org), the purpose of which is to help survivors of organized childhood sexual abuse and exploitation (CSA/E) in Hackney London, and beyond. BRA believes that the public sharing of abuse experiences shows the “reality of CSA/E (as) a global epidemic which profoundly effects girls and boys.”

In a related way, I was pleased to hear out that the book I co-edited, of firsthand accounts written by stalking victims, is due to be published at the end of next month (Taylor, Grant, & Leigh-Phippard, 2017). There is an urgent need to make CSA/E and stalking “social and publicly-validated realities” (Herman, 1997).

The links between CSA/E and the diagnosis in adulthood of the oppressive, damaging and, as with the Diagnostic and statistical manual of mental disorders (DSM) and International Classification of Diseases (ICD) psychiatric classification systems more generally, scientifically unfounded diagnosis of “Borderline Personality Disorder” (BPD) was also the topic of an often heated twitter exchange that I was part of this month. Understandably passionate and angry people, mostly women, in receipt of this diagnosis engaged in a critical dialogue with mental health professionals and academics.

In summary, the main issue emerging from this exchange was the assertion that people with the BPD diagnosis are consistently re-traumatized as a result of their exclusively negative experiences in psychiatric wards and outpatient clinics. Women wrote that their descriptions of CSA/E and more contemporary experiences of abuse are often ignored, trivialized, or disbelieved, reflecting their “othered” status at the hands of mental health workers, where their integrity and honesty is more generally and frequently called into question.

Moreover, the damaging impact of the BPD diagnosis on people’s opportunities and families can wreck lives and families, intergenerationally. The cruelty to people exposed in the twitter exchange made my blood boil, and caused me several sleepless nights. I saved some of the multivoiced dialogue in a Moments folder in my twitter profile, and reworked this as Battling With Words:

Battling With Words

They write and talk about you as though they were algorithms with legs.

Your “crazy” words against their “professional” ones.

They close ranks to form an impenetrable wall.

Their denial is the inability to hear your suffering,

And if you’re not being stigmatized you’re damn lucky.

But remember psychiatrists are only ever over-qualified pharmacists

How can I prove that I was abused?

He masturbated on me while I was asleep on a mixed gender ward,

But I never reported it.

I wouldn’t have been believed,

And feared repercussions from the guy who did it.

And I was sectioned and couldn’t escape.

BPD is a made up construct,

Used to control, oppress, marginalize and silence.

Scapegoated women are not a “condition.”

Medicalising obscures rather than elucidates,

Makes the purpose of psychiatry clear:

A gift to abusers.

***

Alec, October 2, 2017

Rita and Bengt, we’ve corresponded by email during the last week, and I’m pleased that we are united in liking our respective contributions to this article. I have agreed to write this—my final, short entry to start the process of bringing it to closure. As I sit here at my keyboard, in an autumnal morning in the south coast of England, I am struck by the fact that I have shared with you aspects of my personal, domestic and activist lives which I wouldn’t bother or choose to share with many in my biological family. I feel we have consolidated a becoming-other friendship that reaches far beyond families and the Paraversity, current trends, and troubles in mental health scholarship and practice. This means so much to me.