Power, Threat and Meaning: The Line Between Order and Chaos?

Last Friday in the United Kingdom, a group of psychologists (Lucy Johnstone, Mary Boyle, John Cromby, David Harper, Peter Kinderman, David Pilgrim) and Service User campaigners and advocates Jacqui Dillon and Eleanor Longden launched the Power, Meaning and Threat framework: a long awaited and lengthy document offering an alternative to traditional psychiatric diagnosis.

I’d been aware of the framework for some time from personal and professional attendance at events in the world of Mindfulness Based Interventions, where most have a keen interest in humanist and holistic approaches to psychological distress suitable for the many contexts in which we humans live, work, study, play – and suffer.  

More importantly, perhaps, it had also come under my radar because I have at various points had diagnoses of OCD, PTSD and depression.

Power, Threat, Meaning
Briefly, the Power-Threat-Meaning Framework argues that instead of medical diagnostic categories (which are subject to bias and are not always empirically sound) it might be useful to contextualise  human suffering in terms of a framework that asks less “what’s wrong with you?” than “what happened to you?”. In particular, it is hoped this might prioritise trauma-informed care, particularly in diagnoses where there is a high life-time prevalence of adverse childhood events (which is more or less all of them).

To those outside the field, these might seem relatively innocuous, humane questions to ask someone experiencing severe psychological pain, but within professional communities and among groups of service user advocates, the response has been rapid and rough. 

For those with a masochistic gladiatorial interest in watching a professional bloodbath, a quick Twitter hashtag search using #PTMFramework will provide you with a good overview of an ongoing bitter tumult that I don’t intend to rehash here, with a variety of voices (mine included) horrified at the nature of tribalist critical contributions from some and urging sense, caution, pause. 

An astute Twitter commentator used an apt metaphor that for those of us with long-standing, chronic or enduring mental health conditions, watching psychological professionals at eachother’s throats on this was something like watching divorcing parents engaged in a custody battle, with all the resulting potential for re-enacting powerlessness and trauma.

Ambivalence
By rights, I should be a fan of the Power, Threat, Meaning framework – and to an extent I am, particularly of the need to contextualise experience in ways that are sensitive to both an individual's history and their current situation. It resonates with me, both as a professional and a person. I have the requisite background in humanistic, behavioural and mindfulness based approaches, studied Critical and Cultural theory back in the day and have a solid background in the analysis and function of language and discourse which has brought in me quite a lot of love for narrative approaches. I consider allowing space for the construction and re-construction of individual meaning to be very important in recovery from intense psychological distress. 

I have also personally found the diagnosis challenging to reconcile to my life story at various points, and greatly admire the work of Lucy Johnstone and Eleanor Longden, whose work offered me a different way to relate to both my OCD and PTSD in ways I found helpful, particularly in adopting a more self-compassionate stance that situated my experience within the many experiences we find very hard and very human in ways that disrupted my own self-stigma. 

And yet,  even so, the nature of discourse around this new framework feels murky and tricky to me, As much as I want to believe that this approach can be applied skilfully by all, I have deep concerns about the gap between a debate between professionals with the same training if opposing ideologies, and the stark reality of communicating one’s distress in ways that enable good functioning in “real life”.

The Real Danger of Instrusive Thoughts: Harm Obsessions and Safeguarding
And so I share my cautionary tales, as all too common among those of us with OCD as a primary diagnosis. When pregnant with my third son, I had already had extensive treatment for OCD.  Midway through my pregnancy, I noticed a return of some compulsions and a bit more cognitive rigidity.  Being aware of the NICE guidance that suggests a rapid return to “top up” OCD plans in the event of signs of lapse/relapse, I got back on a CBT waiting list and also went about contacting a very highly specialist parent-child interaction specialist in London to seek some additional support around early bonding (because, if I’m honest, I was beginning to obsess again that I needed this or I would be a danger to my son).

On contacting this specialist provider, I outlined to them my history with OCD including intrusive thoughts of harm coming to my children. I explained that I wanted to put in place a plan for when my next child was born to ensure I had the best support possible to prevent depression/negative developmental consequences (e.g. prevent myself from contaminating my children with my pesky feelings).

By return of email, I received a whole two lines to say I’d been referred to social services under mandatory reporting as I had mentioned my fears of harm coming to my children, specifically intrusive thoughts around my toddler son being killed in a violent car crash.

As anyone with any knowledge of OCD knows, this action is a highly dangerous one to undertake with someone with intrusive harm-related obsessive thoughts. Overnight I went from fully functioning to completely incapacitated because the pull of that particular obsession was so deep and so strong.

Luckily the whole ordeal only lasted about three days, as a) social services weren’t stupid and b) I had previously had very extensive and committed specialist support to back up my story that OCD wasn’t what the person who had made the referral thought. An emergency session with my previous CBT therapist and a short course ironed it all out within a few weeks. However, given the suicide risk in OCD can be up to ten times that of someone withoutthat diagnosis, the risks could have been significant for another without the supports I had in place. 

OCD at Work
Working away alongside professional colleagues on a short-term project of great importance to me, something happened that amplified my usual OCD triggers. Stressed and sleep deprived, weeks after moving house, away from a breastfeeding toddler for the first time, the demands outstripped my capacities for a brief period. I caught it was a lapse, recognising that I was pulling towards obsessing about losing my mind.

The evidence is pretty clear on managing this. The only way to meet such an OCD fear is to stay with the trigger without engaging in compulsive actions (e.g. trying to self-diagnose myself with some new madness, avoid all my colleagues, leave my job, run for the hills). I knew that OCD likes to attack important things when stress is high, and that any action other than choosing honesty would escalate it over time, so it needed to be nipped in the bud:  I needed to ‘fess up so I could keep doing the work I wanted to do.

What transpired after that was a psychological car-crash in slow motion.  After an initial aborted attempt to explain my situation to a supervisor, I decided that as a good first step it might be good to be willing to commit to exposure by doing something simple that I could do in the professional context. Afterwards, I found myself acutely stressed disproportionate to what I had displayed and realised I needed to really commit to being a bit clearer and more transparent about my accommodation needs.

I talked it through with my therapist and others with OCD, and spoke to a trusted senior colleague I got on well with, who was pretty on board with it and was about to package me up and send me on my way back to work, when someone else became involved who, on hearing the content of my thoughts, seemed to me to clearly be very concerned for my well-being.

Doubts ratcheting up, yet buoyed by the positive exposure with the first colleague, I responded by doing what seemed most sensible and sent through some further details about my presentation and my past to this second colleague.  There were some honest miscommunications based on crossed emails, and with each subsequent response, I overshot myself, indulged in some compulsions, and before I knew it I was on the merry go round again.

As the weeks rolled on without a single conversation between us, I found myself engaging in increasingly desperate attempts to “put it back in the box”.  Some of these were reasonable, some were clearly distressed.  In the middle of it all, I disclosed some stories of my past that I had never told anyone at work previously and when there was no response to this from some involved, spiralled into intense shame and self-criticism for doing so. The people I was speaking to clearly found this OCD rollercoaster very hard to make sense of, even when I provided reports and self-advocacy leaflets and talked it through repeatedly and increasingly obsessively (as no one was responding).  Stuck and lost and afraid, and seeing how relationships were being damaged, I sought mediation to try to resolve it. This did not help, and brought all the additional predictable consequences of workplace conflicts.

By the time this ended, incredibly, I had almost no workplace relationships left. Even people I had believed had genuine time for me were avoiding me in public, literally looking straight through me, cutting me out and off. 

The damage to my personal and professional life as a consequence was profound and though time has passed, I am accepting now it will take me a long time to rebuild my life and confidence in myself as someone who can manage this long-term and chronic condition. 

So…it has to be said..
If this is what happens when you are clear, when you do understand your diagnosis personally and professionally, when you give information about diagnosis and you explain evidence based practices for that diagnosis in cool professional tones, why do we think it would be better without that? For whom? How many seriously distressed people can self-advocate as I did in real world contexts?   

I am aware that the research suggests diagnoses do not resolve stigma - and yet, the hardest aspect of this to carry was not lack of understanding around the diagnosis (which I can see is complex and hard to understand without experience) but the lack of warm response to the humanity of telling a traumatic tale from my past.

How many professionals actually believe it is easier to share deep personal histories of trauma to healthcare providers, who don’t understand these patterns of responding to challenge, or in the workplace?  

Have you done it? Have you done it and met with coldness, non-responsiveness, fear? Would you risk this? Really?

Yes, I had a crappy childhood, and I grieve it still. It was genuinely crappy and I have work to do on understanding that and making sense of that story.   Trauma-informed care will always be something I care deeply about. Yet the greater threats to me here and now in terms of functioning and survival are not being met with kindness, care or compassion or seen as still just me, still human when I fall into a hole.  I don’t want to live in the hole. I want to live.  The failure of others to respond with kindness to me sharing the most deeply felt story of my past was absolutely worse than their inability to understand the intricacies of OCD.

The risks of telling your sacred stories and having them treated with stigma, disrespect or not honoured are intense and significant:  old wounds come open and are dug into, and these can be extremely hard to suture.  I am so loved, so supported, so privileged in so many ways – and this nearly destroyed me. I also have a lot of knowledge to buffer me against the belief this was all my fault. Few do. And for all my privilege, it still nearly destroyed me.

We all have deep sadnesses that we don’t necessarily want people we have not chosen to commit to intimately, who we have no guarantee will respond warmly and who may not be able to reciprocate, to know or have access to.  The label at least provides some distance, some dignity, some protection from “being” the experiences, behaviours, memories and sensations we so often abhor within ourselves

Finding Our Tribe In Scarcity
At the moment, it is already extremely hard for people with OCD to access Exposure and Response Prevention therapy which is really critical for the majority of us if we are to overcome serious impacts on our personal, professional and social functioning.

It is already a hard thing to explain to others who see it as quirky and fun, and who assume that if what you’re describing isn’t those things, that’s clearly not OCD but a feature of you as a person, your “personality” (fuel to the OCD fire). 

In addition, because of lack of specialist services in many places and long waiting lists etc,  too many of us are having to go through OCD alone using self-help materials or apps,  perhaps with ad hoc support from international providers and/or others with OCD we have found through charity discussion boards and forums.  This is already hard – but without it, if we had no name for this that would open the door to these life lines, it would be impossible.

How will we manage without OCD as a sign post to show us how to find community, how to understand how this particular behavioural repertoire plays out, how to dial it down, how to survive the chasms, how to arise from the ashes? How could we ever get to a point beyond that, where we could thrive, and live joyfully with it?

Losing the Human in Eachother
At the same time, my heart goes out to individuals who have been given an all-too often stigmatising diagnosis of Borderline Personality Disorder, perhaps even against their will, who speak of how they have never been allowed speak their traumas when they are desperate to, or of how this has been rejected and stigmatised, and I know how much this means to them to not BE that label anymore. To not just be looked through, looked down on, spat on, outcast, ostracised, excluded from the human race.

I know what that’s like now. I also know that it happened without the label, when I just risked being seen as myself.

I am absolutely and utterly haunted by the rejection I met with in sharing the stories of my past – I am not sure I will ever truly get over it.  I always thought my fears that others would respond cruelly or coldly were irrational, that this could never happen to me, that people are basically good and will respond with warmth and care to sadness clearly expressed. But that is not what happened when I spoke… and I have no diagnostic label to blame for that, that was just the incapability of other humans to respond.

Tread Softly
So… Let’s pause. Let’s be very cautious around removing the legal, social and ethical protection that comes with an identifiable disability diagnosis but also around dismissing those who understand that the diagnosis, even with all this, isn’t always a lifeline for all, but can feel like a noose around our necks, pulling tighter every time we speak it.

There is huge human cost to tribalistic professional ideological struggles.  We who suffer have spread our dreams under your feet. Tread softly, because you tread on our dreams.

“Perhaps the most “spiritual” thing any of us can do is simply to look through our own eyes, see with eyes of wholeness, and act with integrity and kindness.”

— Jon Kabat-Zinn