The threat is coming from inside the house

Annie Hickox balances the value of sharing our personal stories of mental illness with the risk of exposure.

It was never my intention to write about my lived experience of mental illness. 

A year ago, I wrote an article about my daughter’s depression and my experience of this both as a mother and as a clinical psychologist. It took me two years to finish, I broke down in tears a few times while writing it, and at one point I was ready to abandon the project altogether. I asked myself if the pain of reviving memories of this difficult time outweighed the potential value of what I was writing. But my daughter Jane, who has suffered from severe depression, wouldn’t let me off the hook and she encouraged me to get back to writing about my experience. We agreed that if the piece helped even a single reader to feel less alone, it would be worth the effort and uncertainty. With that potential reader in my mind, I pushed myself to finish those last few sentences.  

My account was about my efforts to walk the tightrope of being both a mental health professional and a mother; a line I wobbled off several times, and still do. I wanted readers to know that, despite the shame and sense of failure that I felt in myself and the imposter syndrome I experienced in my workplace, it was still worth talking about my own fallibility openly, while not exposing too much about my daughter’s personal suffering.   

My article was published on The Psychologist website, shared on Twitter and in due course appeared in the print magazine too. While I had expected a few people to read my brief memoir, I was overwhelmed by a stream of public and private messages. These came from mental health and medical professionals, patients, and parents who shared with me their past and current struggles at home with their own young adult children suffering from depression, anxiety, and OCD. Reading each one of these poignant confidences, which tended to start with ‘Thank you for telling your story, now here is my story...’ filled me with a profound sense of humility and empathy for the people who entrusted me with their own raw experiences.

Sharing my story for the first time on social media felt like I was taking a huge risk in the fragile hope that adding my voice as a professional would encourage others to do so. I have the good fortune to be part of a vast and varied mental health twitter community, sometimes known as #madtwitter, #mentaltwitter or #mentalhealthtwitter. This is an extremely diverse and broad group of mental health professionals, patients, and others with lived experience of mental illness. I have always admired people who told their own stories about their own illness trajectories and how they navigated the labyrinth of NHS services that are far too often bewildering, opaque, and infuriatingly inadequate. 

I also heard from many fellow mental health professionals who related their own lived experiences, and the strong sense of shame they suffered when they spoke openly to colleagues about their mental health struggles. Although we are a profession whose work often entails encouraging others to open up and share their trauma and personal pain, it seems we are also a profession who finds it far more difficult to listen to one other recount our own stories. 

Woven into family life

Clinical psychology is based on the scientist-practitioner model, and recognises that informed choice and evidence-based knowledge can help people find the best path to deal with their mental health issues. On social media, most of us see our role primarily as providers of information engaging with allied mental health professionals and service users. I have therefore always steered away from discussing my own family history of intergenerational mental illness, limiting myself to the occasional comment about the impact of my father’s severe mental illness on my early childhood and adolescence. 

Every family that experiences severe mental illness knows how it can sweep in like a tempest, pulling everyone into its force. I grew up in the 1960s, during a time that saw the first generation of modern psychotropic medications. Their unpredictable interactions, the care with which they were prescribed, and the question of who should be doing the prescribing, were frequently overlooked. The clash of diverse and often incompatible medications frequently exacerbated our father’s condition in unpredictable and alarming ways.

The complex triangular relationship between my father’s haunting memories of his childhood trauma, his depression and his psychosis still runs through my mind every day. They left an indelible mark imprinted on every recollection of our childhood and the rhythm of our family life. During his periods of being well, the glimpses of increasing stability and joy during Dad’s days of gradual recovery felt like sea spray from a surf that still held the power to pull him under again. Sometimes as a child I would visit friends and be mystified by those families for whom these psychological forces appeared to be absent and I would wonder, ‘what can that be like?’ 

Decades later, my four siblings and I always return, again and again, to discussions and debriefings about our father’s illness and the imprint that it left on each of us. These recursive reminiscences (and even at times laughing darkly when we recall a particularly vivid episode that would have seemed absurdly comical if it had been portrayed on a television series) continue to provide us with the paradox of the combined pain and balm of shared experience. We knew we were not alone and we are not alone. Mental illness in the family has provided us with a shared language and ease in handling the subject that is, perhaps, unusual. 

I feel grateful that I have always felt able to talk openly and unashamedly to my husband and my children about our family history. My therapeutic work has led me to admire my father even more, the fact that after all of his suffering, and several suicide attempts, he still managed somehow to survive for our mother and for us. He had no means of hiding his vulnerability, and even with our mother’s best efforts to keep the show on the road, there was no way to shelter us from these episodes. This has perhaps been one of the greatest lessons of growing up with a mentally disordered father. Mental illness has always been intricately woven into my family’s life, even for generations before I was born, and it continues to this very day.

Shame and stigma from inside the profession

So talking about mental illness in the family can be a healing, bonding, and educational experience… until it isn’t. 

Things can and do go wrong when we expose our vulnerability and anguish to people outside of our close personal circle, especially on social media. The initially overwhelming Twitter response to my article reminded me of William Styron’s observation of his own depression: ‘the disease engenders lasting fellowship, if nothing else’. And yet, my attention was drawn to a handful of tweets that felt stigmatising and shaming, suggesting that I had ‘medicated’ my daughter, that I myself was ‘probably mentally ill’ and ‘unfit to work as a mental health professional’, and ‘probably on drugs herself’. 

The momentary sting of these few speculative tweets did not last. I knew that they had been written by people who had described deeply distressing experiences with mental health services, and I reflected that my own memoir may have stirred up resentments and anger. As a highly privileged clinical psychologist, I was a ready target.

The stigma was more striking, though, when messages on social media came from a couple of members of my own profession. A clinical psychologist described my article as evidence that I was ‘dragging’ my daughter and family into an apparently self-serving drive to support diagnosis and psychiatry. A psychotherapist chastised me for taking my daughter to her GP, saying, ‘what a shame you went straight to a bio bio bio treatment without considering addressing the root causes’, even though I had written at length in the piece about the profound value that therapy gives to Jane.

When I read these social media messages, I was reminded of the urban legend horror trope, ‘the calls are coming from inside the house’… the creepy phone calls that come from the last place one would expect, the safety of one’s own domain. In this case, the threat was in fact written without the shield of anonymity, by members of our representative body, the British Psychological Society.

I asked myself why the social media comments felt so shaming, when in my day to day life I feel so at ease in discussing my personal experience of mental illness with friends and family. I also thought about why, in contrast, I have always tended to freeze at the thought of talking about it at work, or writing about it publicly. It had always seemed that by keeping my stories hidden, I could avoid the struggle of deciding between what to reveal and what to withhold from the light, to protect.

My own small experience of social media shaming is, of course, personal and anecdotal, but my reaction caused me to consider how we as a profession deal with disclosure of our mental health histories to our fellow professionals. I reflected on the many clinical psychologists who, like me, had lived experience and would also see these brief messages as a telegraphic warning shot that said, ‘Hush. If you try to tell your story we will distort it and use it against you’. So while I completely trust those I am closest to listen to me with understanding and empathy, I am far less certain about what response I will receive from my fellow psychology professionals.

Clinical psychologists with lived experience 

Was I being overly sensitive? I decided to find out a bit more about the prevalence of mental illness in our profession, and whether the sense of being shamed by members of our own profession was common. I discovered that I am in good company. I knew that many studies have shown that a majority of mental health professionals have personally experienced diagnosable mental illness, and that the statistics appear to be consistent across these various reports. But a particularly recent and relevant study is that by Tay et al. (2018) surveying members of the Division of Clinical Psychology (DCP) in the British Psychological Society (BPS); in other words, my own profession. 

Their research indicates that over 62 per cent of us have lived experience of diagnosable mental health problems, with depression and anxiety most commonly experienced. Clinical Psychologists experience high levels of stigma, and while we appear to be comfortable disclosing our experience to our family and friends (68.2 per cent) far fewer of us felt able to disclose to work settings (44.5 per cent). The most negative experience of disclosure was with employers.  

The survey also showed that those of us who have lived experience sought help either from our GPs or from private psychiatrists. Therefore, while the majority of us experience mental health problems, most of us are reluctant to disclose how we feel to our work colleagues. The barriers for seeking help at work include perceived mental health stigma, shame, and negative consequences of disclosure particularly towards our careers. (As an aside, I remember receiving this survey, as a member of the DCP, and briefly hesitating to complete it for fear that somehow my replies would be shared with my employers).

Overall, these studies appear to confirm that our profession has a long way to go before those of us with lived experience of mental illness can feel safe in talking openly with our colleagues about our struggles. And yet, promoting openness about lived experience in the workplace would seem essential in allowing us to feel that it is really okay to speak candidly and without fear about our mental health, and to ask for support when needed. 

We may, no doubt, encounter many barriers in reaching this goal, but two strike me as particularly salient. The first is the emphasis on resilience in the workplace, which conflicts with the message that we should open up and reveal our vulnerability. In the NHS, resilience training is often seen as a way of helping workers ‘bounce back’ and is often equated with success, productivity, and leadership. A second recent barrier is the current view of ‘critical’ psychologists who aim to normalise mental illness (or in their vernacular, ‘distress’) and appear to deny that diagnosis and medication have any significant therapeutic value. Advocates of ‘critical psychology’ suggest that by abolishing diagnosis altogether, the concept of mental illness itself may be eradicated. Abridging and modifying the language we use, it is argued, will result in an elision of the medical model in mental health. 

This is illustrated in the recent BPS Division of Clinical Psychology document, Understanding Depression, eschewing ‘illness’ in order to describe depression in ‘its everyday sense’ as something we experience ‘just as we experience love or joy’. The authors state that ‘we don’t necessarily need “treatment”’, calling instead for practical support and help to make changes. Medication is portrayed in a negative light, depicted as generally harmful and/or ineffective. The report favourably lists non-clinical interventions such as yoga, mindfulness, and ‘healthy environments’. 

For those in our profession who have experienced the crippling effects of severe depression, psychosis, bipolar disorder, or other severe mental health conditions, the current emphasis on resilience and/or normalisation of what for many is a paralysing illness can sound a lot like ‘bootstraps’. Seeing our experiences once again discounted or ignored feels like yet another door closing between us and our colleagues, stifling open discussion of our experiences.  

Signs of change

Would eradicating diagnosis really reduce stigma and shame about our mental health experiences? The accounts of clinical psychologists experiencing shame in the workplace tell a different story. 

In a very poignant and candid letter to The Psychologist (November, 2020), Khadija Rouf describes the ‘real, and as yet, unnamed form of prejudice and discrimination against people who are survivors’. It was Rouf’s experience of being helped by social workers and psychologists that sparked her desire to eventually train as a clinical psychologist, yet she suffered ‘an unhealthy and invasive level of scrutiny during training and ‘assumptions made about my past… silencing and shaming’. Some of her colleagues questioned her professional judgement because of her survivor status, yet ‘they never appeared to question whether they knew enough about victim and survivor experiences’.

Rouf’s experience will resonate with the majority of our profession who have lived experience of mental illness. ‘It’s a strange kind of binary, where a profession built on understanding the human psyche, cannot cope with a person who happens to be both a survivor and a clinician’. It appears that it is not the diagnosis that is shaming, but the attitudes we face when we cross the liminal boundary between hiding and disclosing our mental health difficulties.

Rouf’s words stand out in their own right, but are particularly salient in view of the recent BPS/DCP document, ‘Statement on clinical psychologists with lived experience of mental health difficulties’, published in August 2020. Like Rouf, I welcomed this development, although I felt it was long overdue. This document states clearly that the DCP publicly recognises and supports the ‘unique and valued contribution that lived experience of mental health difficulties brings to individuals working within clinical psychology’. It also acknowledges the stark conflict that arises regarding whether we share our experiences in the workplace. ‘Significant change is needed before individuals are able to feel confident in receiving normalising, compassionate and accepting responses, as opposed to those that are dismissive, denying, attacking, ‘othering’ or marginalising’. The authors state the need for a ‘whole-systems responsibility’ at all levels of the profession.

The DCP’s statement is laudatory, and I applaud courageous clinicians such as Khadija Rouf, Anna Chiara Sicilia, Natalie Kemp, and others who have underlined the powerful potential that the meaning and resonance of this document may have. 

Telling who we really are

We need to be able to talk about our experience and know that the risk of disclosure does not outweigh the benefits of sharing our stories, which are, after all, such an important part of our identity. Lived experience of mental illness in our profession is common; the majority of us have lived experience of diagnosable mental health conditions. In my own case, I grew up with a parent who suffered psychotic depression and mental illness was tightly woven into my childhood. I suffered psychosis during my teen years, and both of my children suffer from anxiety and depression. I do not see it as an asset nor as a drawback, it is simply who I am, and it is who we are. It is indelible, and denying it or minimising it will not erase it. We all need to speak up and to speak out. 

We need to share our stories and have them heard and validated by all levels of our profession. Lived experience can be an asset in our work. But our profession’s discomfort, expressed by shaming and silence, is a fault that runs deep, whether in the workplace or on social media. If we work together to remove mental health shaming from our profession, we can begin to tell people who we really are, rather than let them tell us who we are not.

- Dr Annie Hickox, CPsychol, PhD is a clinical neuropsychologist with over 35 years of clinical experience in the NHS and private practice. Find her on Twitter @dranniehickox  

Watch this space for more on lived experience and stigma amongst psychologists...

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Comments

 

 

 

I read Annie Hickox’s original article and admired her courage in writing about her daughter’s problems and the impact on her family. It’s good to hear that she had so many supportive messages. It’s obviously upsetting to receive unsupportive messages, but we know that social media is not the best place for nuanced debates on important and contested issues. Hickox also writes about the very real barriers faced by people with lived experience of mental health problems who work in the mental health system, in ‘talking openly with our colleagues about our struggles’. We can agree that the current emphasis on ‘resilience’, not just in the workplace, but in wider society, is unlikely to encourage anyone to reveal vulnerabilities. However, Hickox’s main concern here is barriers or ‘threats’ from within her profession, likened to ‘….the creepy phone calls that come from the last place one would expect, the safety of one’s own domain’. She locates these threats firmly in ‘the current view of ‘critical’ psychologists who aim to normalise mental illness…and appear to deny that diagnosis and medication have any significant therapeutic value’. As someone who’d probably qualify as a ‘critical psychologist’ and who has produced a fair number of critiques of psychiatric diagnosis and the concept of mental illness, I must take issue with her representation of this group and the threats they supposedly pose.

In general, critical psychologists have questioned many of the assumptions, theories and practices of conventional psychology and, crucially, highlighted their links to the operation of power and to potentially harmful social and economic processes. Inevitably, this includes assumptions, theory and practice about psychiatric diagnosis and so-called ‘mental illness’. But critiques and suggestions for alternatives have been produced not just by critical psychologists, but by many psychiatrists, service users and survivors, and by psychologists who would not think of themselves as ‘critical’. This has being going on for decades, so it’s not clear why just ‘critical psychologists’ should be singled out now and seen as posing such a threat.

Hickox claims that we ‘aim to normalise mental illness’. This is doubly misleading. It takes for granted the very idea (mental illness) that is in dispute. It also links ‘normalising’ with ‘minimising’ – ‘…the current emphasis on resilience and/or normalisation of what for many is a paralysing illness can sound a lot like ‘bootstraps’’. In fact, what critical psychologists, and many others, aim to do is to convey the understandability, intelligibility and meaningfulness of those extreme mental states, emotions and behaviour that are so often labelled as symptoms of a medical type illness. This means highlighting their links not just with people’s particular life experiences, but also with wider power-based social processes such as racism, misogyny, unrealistic social expectations, economic policies and so on. There are many reasons in services and society why these links get obscured and why revealing them may be seen as threatening. If we have to use the word ‘normal’ then the message is not minimising but that, ‘You are reacting normally to damaging circumstances.’

Hickox’s claim that ‘’critical’ psychologists appear to deny that diagnosis and medication have any significant therapeutic value’ is also misleading. Many of us support a ‘drug-based’ rather than ‘disorder based’ approach to medication, but also argue that too little attention is paid to the harms of psychiatric drugs , and that service users are often not enabled to give informed consent or, even if they refuse, can be overuled. Psychiatrist Joanna Moncrieff’s book ‘A Straight Talking Introduction to Psychiatric Drugs’ should probably be required reading for all psychologists working in mental health services, and beyond. As for diagnosis, it’s difficult to argue in conventional terms for the therapeutic value of a system which has amassed so much evidence against its validity, to the point where even its devisers concede its lack of scientific value. But diagnosis, like any system of thought, can fulfil many personal, professional and social functions that some people find helpful.

It’s ironic that Hickox should imply that questioning medicalisation and diagnosis is linked to ‘shaming and silence’ when evidence suggests that an unquestioned medical approach can make stigma and discrimination more likely (Read et al., 2013). It’s also ironic that she should imply that these criticisms are a barrier to people telling others ‘who [they] really are, rather than let[ting] them tell us who we are not’. Many service users feel that the diagnostic system imposes an identity they do not want, but haven’t any way of resisting. As one woman put it, ‘Service users who identify with their diagnosis – you have pretty much an entire mental health system that agrees and supports your perspective. Those of us who feel utterly hopeless and oppressed by diagnosis – where do we go? (cited in Johnstone et al., 2019, emphasis in original).

Hickox and those who criticise medicalisation seem to have the same goals – that people with experience of both more or less extreme states of distress and  troubling behaviour, should have access to evidence-based knowledge and be able to make informed choices about how they make sense of their difficulties and the kind of help they receive. The value of these experiences should be openly welcomed by our profession. I’d hope that constructive questioning of medicalisation and diagnosis, whose problems are widely acknowledged, as well as suggestions for alternatives, would be seen as a necessity and not a threat to all of this.

Mary Boyle  Professor Emeritus of Clinical Psychology, University of East London

References

Johnstone, L., Boyle, M., Cromby, J., Dillon, J., Harper, D. et al. (2019). Reflections on responses to the Power Threat Meaning Framework one year on. Clinical Psychology Forum 313 (January). 47-54.

Moncrieff, J. (2020). A Straight Talking Introduction to Psychiatric Drugs. The Truth about How They Work and How to Come off Them. (2nd edn). PCCS Books.

Read, J., Haslam, N. & Magliano, L. (2013). Prejudice, stigma and ‘schizophrenia’: The role of biogenetic ideology. In J Read & J Dillon (Eds). Models of Madness: Psychological, Social and Biological Approaches to Psychosis. (2nd edn; pp 157-77). Routledge.

By James Barnes

Firstly, I would like to commend Dr. Annie Hickox for her bravery in bringing
her family’s clearly very distressing experiences of mental health problems into the
public domain. As she rightly points out many professionals in the mental health
arena have their own experiences — of which I am one. A culture in which these
experiences can be safely talked about is clearly in our all our bests interests. About
that, I am in totally agreement.


However, while her article addresses important concerns that we’d all do well
to hold in mind, Dr. Hickox unfortunately goes some way to undermining those very
concerns by presenting a disingenuous account of the views and aims of those she
calls ‘advocates of critical psychology.’ In a way reminiscent of some of the chief
protagonists of the medical model (with whom she is outspokenly allied on social
media) she misrepresents the arguments put forward and presents a misleading
caricature of the position.


Chief among these is the conflation of the critique(s) of diagnostic labels with
the experiences to which they refer. She creates the impression that the reality of the
experiences themselves are being denied, which is of course not the case. The
argument about diagnoses, and the mental illness/disorder label more broadly, is an
argument about the legitimacy of psychiatry’s appropriation of these experiences as
(biological) medical disorders. It is in no way a denial of people’s very real distress.
This fallacious misstating of the position carries with it a caricaturing of the people
who resonate, identify and find healing through the frameworks which presume a
non-diagnostic starting point — most schools of psychotherapy among them. It is
hard, then, to see how she is not doing the very thing she is rightly criticising.


Building on this erroneous premise, she claims that the recent BPS document,
Understanding Depression, denies the severity of the experiences we call
‘depression’, denigrates the use of medication, and advocates only interventions
such as yoga and social support instead. This is patently inaccurate. Pointing out
that low mood lies on a spectrum, in which there is no objective basis for deciding on
a cut off where it becomes a medical illness, is again not in any way to minimise or
dismiss it. Severe, distressing, even disabling low mood can be said to be at the
extreme end of a spectrum that is continuous with ‘normal experience’ — instead of
categorically transforming into a (biological) illness/disorder at an arbitrary point. The
‘normalising’ involved has nothing to do with the severity of the suffering, only with
the category in which we put it. The document also clearly acknowledges the uses of
medication for some people but challenges misleading claims about correcting
chemical imbalances. While some of these views are still up for debate, it is hard to
see them as inherently objectionable.


It is imperative that we understand each other correctly. To present such
misleading views only serves to further distance and polarize people and exacerbate
the dynamics of stigma Dr. Hickox very rightly wants to address.