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Visualising mental illness

Could mapping our anxieties generate more understanding and support?

Credit: Jill Simpson. All rights reserved.

What does mental illness look like? We know how it feels; at least I do, having suffered from anxiety and Obsessive Compulsive Disorder (OCD) for many years. But it’s hard to visualise mental illness in the same way we might visualise physical disabilities, and this can make it difficult for people with no experience of mental health problems to empathise or imagine how they affect peoples’ lives.

Everyone experiences periods of anxiety and at normal levels such anxiety is good for us—it helps to keep us safe and responsive to danger. However, when anxiety reaches extreme and uncontrollable levels that are disproportionate to any actual risks or threats, it becomes a mental health problem. People who have never experienced such intense and irrational anxieties might find it hard to imagine how debilitating this can be. So is it possible to visualise personal experiences of mental health problems in a way that is intelligible and meaningful to those who have never experienced them? Making complex accounts of anxiety disorders more visible might help to increase awareness, understanding and empathy among both policy makers and the public.

The word ‘anxiety’ is widely used in public discourse and in popular culture to express almost any kind of personal experience of worry or concern. This makes it difficult for people to gauge what anxiety means when it becomes an issue of mental health, as with OCD. OCD is increasingly used as an adjective to describe someone who is very particular about how certain things are done, but this reduces a serious disorder to a personality trait, internalising the illness and placing responsibility for it firmly on the shoulders of the sufferer.  

In February 2017, for example, an aide to British Prime Minister Theresa May suggested that state benefits in the UK should go to “really disabled people” and not to those “taking pills at home, who suffer from anxiety.” Although the aide was heavily criticised and has since apologised, his comments suggest the existence of a hierarchy in which some disabilities are deemed less worthy of attention and support than others. 

Minimising the significance of anxiety disorders in this way stems not just from the way we talk about them, but also from the invisible nature of much mental illness. Unlike many (but not all) physical disabilities, people with anxiety disorders often show no physical evidence of their existence on their bodies, making it hard for others to understand how they might affect their lives.  My research in critical data studies, combined with my own personal experience of OCD, have prompted me to explore visualisations as a means to communicate these invisible experiences of anxiety in a way that’s accessible and meaningful to non-sufferers. 

Data visualisation is a form of cultural interface; a mediator which allows people to make sense of abstract data and complex analytical processes. The raw data and processing techniques involved remain invisible, but visualisations can communicate trends, patterns and insights from the data in powerful ways. This makes it possible to use the results to help other people make sense of less visible forms of disability, and hopefully encourage awareness and understanding of their impact among policy makers - particularly those responsible for mental health services.

Inspired by an art project called Dear Data I’ve begun to visualise my own experience of OCD by quantifying my compulsions to check and re-check the same thing over and over again. To collect the data I tracked my behaviour for a day, noting every time I checked something, the number of times I checked it, and what it was that I was checking. 

In order to sort through the data I thought about what I needed to communicate to other people in order for them to understand the impact that OCD has on my life. The number of checking incidences was significant, as were the repetitive nature of the checks and the number of times I was compelled to return to re-check things that I had already checked. For the data visualisation to act as an accessible interface it needed to be aesthetically strong but also easy to interpret, inevitably concealing some of the complexity of my experience. In order to re-introduce some personal and contextual detail, and to help users to make a human connection with the data, the visualisation is hand drawn with annotations to describe some of the incidences in more detail.

Making personal experiences of anxiety both visible and public in this way is not something that everyone will want to do.  For many people, disability is a deeply personal and private aspect of their lives, and no-one should be required to make their experiences public in order to receive support from government or other individuals or organisations. However, I’ve found comfort in reading about other people’s accounts of their anxiety disorder, and visualising my own behaviour has helped me to take a step back from it, to see it as a symptom of OCD rather than a personal failing. 

Visualising mental illness might also have the potential to make an impact beyond the individual. In an era of austerity and public service funding cuts in Britain, making experiences of such conditions more visible may be one way to protect vital mental health services. If it’s possible to use visualisations to increase understanding, awareness and empathy among policy makers and the public, it will become harder to dismiss anxiety disorders as unworthy of support. 

Although I’m willing to share some of my experiences more publically, even I don’t want to make everything visible. The data I’ve mapped only represents compulsions which are, ironically, the publicly visible aspect of OCD. I’ve refrained from visualising the obsessive thoughts which drive my anxiety, because I consider these to be private. Yet the visualisation still provides an insight into how OCD impacts my day to day life, particularly in terms of the difficulty I have in completing simple tasks like, locking a door or logging into my emails.

Political considerations are built into all data sets, visualisations and interfaces. Human bias and subjectivity are woven into data through their collection, analysis, interpretation and visualisation. Despite the hype surrounding big data and its potential to ‘objectively’ inform public policy, it usually lacks both depth and context. Big data can be especially misleading because it is big.  So there is value in considering small, rich and subjective data sets alongside the analysis of larger bodies of material. In fact, it’s difficult to see how we could use visualisations to communicate meaningful experiences of anxiety beyond individual accounts, especially because mental illness is an extremely personal and contextual experience. So to understand mental illness it’s important to look at both aggregated data sets and individual stories.

Attempting to quantify a personal experience of OCD inevitably strips away much of its complexity, yet data visualisations do have the potential to communicate some of the ways in which this form of mental illness affects daily life. Even allowing for their limitations, they could certainly be used to encourage greater compassion, deeper understanding, and more empathy towards anxiety disorders and other forms of disability, and to help policy makers and the public see the importance of maintaining and improving mental health services that are publicly-funded, accessible, and comprehensive. 

About the author

Jill Simpson is a PhD researcher in the Sociology department of the University of York and is part of an interdisciplinary research network exploring non-expert user engagement with data visualisations.  Her research interests combine critical data studies, interdisciplinary social research and public engagement through creative practice. 

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