Why do we never talk about the harm that can be done by diagnosing someone with a mental illness?

Schizophrenia, schizoaffective disorder, borderline personality disorder, post-traumatic stress disorder, manic depressive psychosis, anxiety, depression, obsessive compulsive disorder, trichotillomania and dissociative identity disorder – the array of labels I’ve been given over the years is dizzying. You’d be forgiven for thinking that I am one of the most mentally ill people you’ll ever meet – yet, in truth, seeing myself as being ill has caused me more harm than good in my life.

Rather than describing myself as ill, I see myself as a survivor. I work inside the mental health system, in the NHS, supporting people in crisis. I also campaign, outside of the system, to try and bring about social change. What I have to say might sound a bit strange for some of you – but I hope you’ll bear with me. On World Mental Health Day, when the media is flooded with talk of mental illness, I’m hoping this is a useful counterpoint.

What if the use of the term “mental illness” is not only perpetuating the stigma and prejudice people face, but actually getting in the way of us understanding and responding to people’s experiences in an effective and humane way? To some, this might seem like a strange question to ask. After all, my diagnosis of diabetes has identified the source of a problem (my tiredness) and helped me access effective treatment. Yet, in the world of mental health, there is something about psychiatric diagnosis which can have a very different impact on individuals and society as a whole.

Over the course of my life, I have experienced grief in many ways. I’ve felt a sad, but warm, sense of loss at the death of an elderly family member – shedding quiet tears at the funeral while accepting the inevitability that death is a part of life. I’ve felt a stab of sadness on hearing about the death of an old friend, closely followed by a flood of memories and regret at losing touch. I’ve felt the unbearable grief at the suicide of one of my best friends, a loss that felt like it had torn out the centre of my soul, draining the world of its colour while leaving me so raw I could hardly breathe.

We each feel grief differently in different situations and at different points in our life. Sometimes grief is bearable, but other times it comes with such a depth of pain that we can struggle to see a way through. Our reactions can be profound, stubbornly refusing to pay attention to what is considered a “normal” response. In grief, there is no right or wrong way. We just grieve.

Imagine if, at those times I felt the grief so intensely, I had been told that I had a mental illness – depression. Given the extent of my distress, and that at times I felt unable to continue living, I may have found it validating in many ways. It might have helped those close to me recognise the severity of my distress, reigniting the compassion that so often ebbs in the months and years after bereavement.

It might have helped me to explain why I was unable to work, giving me access to essential benefits while I was struggling to keep my life together. It might have helped me feel like there was a medical reason that I couldn’t simply put this loss behind me and move on, that it wasn’t my fault. It might have enabled me to feel OK to take the time I needed to heal.

As much as I can see the benefits of a diagnosis, I am concerned that what is lost outweighs what can be gained.

Imagine that, after my appointment with a professional who was willing to listen to my struggles, I receive a copy of a letter sent to my GP that reframes our conversation in medical terms. I barely recognise myself in the letter. Rather than describing our conversation, I see the doctor use words that feel alien to my situation. Certain words stick out. I read that I am “dysthymic” and “had flat affect”. I read that I expressed “suicidal ideation” and that they saw “evidence of rumination on a past bereavement”. I read how I appeared unkempt, demonstrated “poverty of speech” and made limited eye contact.

Initially these are just words on the page, dismissed as medical jargon, but over time I notice that those involved in my care stop talking about my loss and the conversation revolves around developing coping strategies to manage my symptoms.

It feels crazy to talk about rumination and insomnia without speaking of the dreams I have about finding my friend dead in her flat. It’s bizarre to talk about my low mood without the hole in my heart. It’s madness to talk about my suicidal ideation without honestly exploring the pain that makes it so difficult to continue to live in this world. Yet, over time, I get used to it. It becomes the currency of care – the dance I have to engage in to get the help I need. In time, the idea of me being mentally ill becomes more concrete as the context of my distress – the suicide of my friend – becomes relegated to a mere trigger of an underlying illness.

While seeing something as an illness doesn’t have to result in the loss of context, it is so easy for us to turn our heads away from those things that are painful to explore. It’s as if the illness terminology provides us with a collective get-out clause, enabling us to distance ourselves from the messiness of the world under the guise of being helpful and doing the right thing by people in distress. In actuality, I have reason to think that by decontextualising people’s distress we are – unintentionally – causing harm.

I have the privilege to work in the NHS as part of an exciting new team piloting Open Dialogue, an approach to supporting people in crisis that explicitly pays attention to the context of their lives. Instead of seeing people as having an illness, our approach focuses on developing a shared understanding of the crisis – alongside the person and those most important in their life.

Everyone who is in some form of mental health crisis has a story to tell. Our difficulties always happen in a social and relational context. The more I hear people’s stories, and the more I reflect on my own, the clearer it is that so much of what we call mental illnesses can be understood as a reaction to the many things we go through in our lives. From those traumas that can be named – childhood abuse, racism, discrimination, victimisation, poverty, social exclusion and bullying – to those that weave through our lives in subtle ways which may be hard to articulate. From those that are single experiences to those that layer upon one another to slowly ebb away at someone’s sense of safety and sense of self.

Just as we each experience grief in different ways, our response to these circumstances will vary too. From this perspective, there is no sense in saying that some responses are “right” or “wrong”. Such judgements are deeply disrespectful.

To treat the experiences that get called mental illness as an individual issue is madness in a crazy-making world. So, this World Mental Health Day, can we change the conversation? Let’s listen, not label.