“Were you abused? Do you think you might be gay? Or perhaps there’s someone in the family with anorexia?”
Such are the types of questions I’ve been asked by probing psychiatrists fishing for an explanation of my mental illness. Some of these questions may well be involved in my coming to rely on a severe eating disorder, but I’ve long been frustrated by the quest for explanation – a sole cause or triggering factor.
Being led down a path of searching for what it was all ‘really about’ never helped me at the critical stage of illness where my life was at risk and behavioural change was the priority. Yet, at the same time, I didn’t want to be viewed only as a body in need of re-feeding and a mind in need of correcting.
I find it hard to see a split between the medical treatment of eating disorders and the psychological work that needs to be done too. It was never enough to be treated as a physical object with only physical needs while disregarding how I felt as a person about making changes to my eating and my body.
See the Person
The dominant method of choice in current mental health practice is to impose preconceived ideas and a juvenile ‘evidence base’ upon the lived experience of those coming for help.
It was also never enough to see ticking a box of ‘gay’, ‘abused’ or ‘in the family’ as seriously addressing the sheer convolution of factors at play in the formulation of a major eating disorder. This isn’t an adequate way to treat any human being, as it trivialises the complexity of existence and fails to appreciate an individual in a holistic manner.
In the rush to intervene and produce clinically measurable and valued results, I’ve seen in my personal and professional experience just how often patients are made to fit into systems as opposed to services being shaped around – and responsive to – individual need. Services that are aimed at treating conditions are not the same as services aimed at treating people who happen to struggle with particular types of problems.
Validation is vital
Marsha Linehan’s theory of the development of emotionally unstable personality disorder proposes a ‘bio-psycho-social’ model in which biologically-based emotional sensitivity is encouraged to thrive in the context of an emotionally ‘invalidating’ environment.
The type of environment that typically springs to mind here is a family home in which abuse of any kind takes place, where emotional responses are denied or dismissed. For example, when in distress or terribly upset, being told that you cannot or do not have due reason to feel that emotion (or failing to be met with an appropriate response from a caregiver) can mean that you come to think of this feeling as unreasonable and not to be trusted.
In my case, I became almost entirely unable to express negative emotion in contexts where I felt it was ‘all in my head’, where I had nobody to validate that my problems were real to me. As well as in the home, we seek validation across a range of social environments. When my difficulties with obsessions and compulsions imposed upon my life to such a degree that I missed a lot of school, the responses from my school were also hugely unhelpful.
Having a total lack of awareness of mental health in general, my school saw me as a bright boy who thought he was too good to turn up to lessons. The failure to understand why psychologically I couldn’t “just walk into classrooms” (as I was clearly able to do physically), undermined the validity of what for me was a very difficult experience. As a result, I assumed that none of my struggles were actually ‘real’ or would be distressing to any reasonable person.
The help-seeking environment is one where the importance of emotional validation is fundamental, and the damage of invalidation can be most pronounced. When somebody is able to come forward and express their concerns in the hope they will be met with support, there are glimmers of self-validation – a realisation that their difficult experiences might well be objectively real.
The response from someone with the power to assist has the potential to powerfully affirm this self-validation and work against the shame that often comes hand-in-hand with the very private experience of mental health problems. When this opportunity is missed however, the implication of feeling unheard is often to self-stigmatise further, which can actively reinforce someone’s difficulties and have potentially damaging consequences.
First, Do no Harm
When I went to see my GP in university to explain how I wasn’t washing, was spending £50 a day on food for binges and was planning to end my life, I was told that bulimia can be seen as an attention-seeking behaviour and that I “looked fine”. At the point when I most needed help, not being offered support helped me feel that my eating disorder wasn’t really that important. Or at least, if I didn’t need support to get better, remaining ill was therefore my fault. Just as in the four years before, when my BMI was considered too low to be given any psychological therapy for my eating disorder, I was withheld treatment.
If my problems weren’t important enough to warrant a helping response in these instances, then when were they? The next step for me was non-suicidal self-injury and overdoses, which like my extreme drive for ever-more shocking thinness was partly me asking for somebody – anybody – to have the knowledge and expertise to hold me and help me.
I’d like to put forward the notion that ‘bad’ help is worse than no help – or more specifically, being actively denied psychological support and not being listened to by professionals is emotionally invalidating – perhaps even more damaging than not seeking help in the first place. Undermining the already-fragile self-conviction that characterises so much of mental illness is ultimately anti-Hippocratic and has been the leitmotif of mine and many others’ experience of mental health services at all levels.
Measure what matters
Thinking of a solution to these concerns brings us back to how professionals need to treat people as people first. The same comes to therapy and treatment. While research into evidence-best practice is vital in the immensely under-researched sphere of mental health, the biggest source of evidence as to what might work for any one person is the person themselves.
Paying attention only to current evidence, rigid diagnostic categories and doggedly following manualised, generic treatments is less compatible with the nature of personhood than an emphasis on the basic necessity of seeing people as individuals.
Individuals feeling seen and understood within the context of a safe and accepting relationship is consistently reported by patients and research literature to be the most valuable element of any form of treatment. As Arthur Miller said, “attention must be paid”.
Reductionist attitudes which treat people as objects and their experiences as invalid if they do not meet current scientifically-validated methods of practice, need to be abandoned in order to protect vulnerable people from harm that is tantamount to emotional abuse. Measuring compassion, validation and Rogerian core conditions may seem basic and less compatible with the current emphases of scientific research, yet these are the factors which colour the relationships in which therapeutic change happens. They are also some of the most pertinent aspects of what it is to be a person.
James Downs is a mental health campaigner and expert by experience. James, who is 26 and from Cardiff, has experienced a major eating disorder from the age of 16. He’s now well into recovery, but faced many barriers and a six year wait to access specialist treatment. He now works as a volunteer to develop eating disorders services, campaigns for changes in policy and awareness alongside studying psychology at the University of Cambridge.
Follow James Downs on Twitter: @jamesldowns
James also blogs over at the Huffington Post
Join us on November 18th in Cardiff at Compassionate Approaches to Mental Heath – a one day experiential event designed to inform, inspire and empower people living and working with mental distress.
Please book now to join us in Cardiff. Limited £35 tickets – sponsored by Welsh mental health and wellbeing charity Gofal – are available for people with personal experience of mental health issues, and their supporters.