‘An ongoing presence’

Newly-appointed PhD student on the Life of Breath project Tina Williams writes:

The patient experiences her illness from within, as a transforming experience impacting all dimensions of life […] She does not compartmentalise the disease, nor does she understand it solely as a set of physical symptoms. Rather, for her, the illness is an ongoing presence that modifies her life. The impact is not only physical but also psychological, social, cognitive, emotional, existential, and temporal (Carel, 2011, 42)[1]

The project is an exciting opportunity for me to contribute to an interdisciplinary research area which lies close to my heart, as well as within my philosophical and clinical experience. My PhD, which I am starting in January 2015, will be concerned with the detailed phenomenological study of the experiences of breathing and breathlessness in physical and mental disorders, as well as in day-to-day existence. It will be situated in the context of both philosophy and medical humanities. In this post, I introduce my background and its relevance to motivating and pursuing this research.

After completing my philosophy BA and MA degrees, focusing on a phenomenological exploration of the biomedical model of depression for my Masters research project, I became very interested in gaining practical experience working with those who experience mental health problems (1 in 4 of us over our lifetime), in effect, applying my knowledge and passion about phenomenology, the study of human experience, to ‘real life’. I undertook counselling skills qualifications, and volunteered for various mental health charities. Due to the NHS focus on evidence-based interventions, I then completed a ‘Primary Care Mental Health’ post-graduate course alongside working for a mental health charity in the north of England under the Improving Access to Psychological Therapies services (IAPT), to be able to practice in the field and contribute to patients’ recovery.

I am now a qualified Psychological Wellbeing Practitioner with experience in using cognitive behavioural self-help interventions for people with panic disorder, depression, anxiety and phobias. This experience leads directly to the Life of Breath project, through backing up my studies with clinical experience in breathing and breathlessness when recognising and treating patients who present with respiratory symptoms. For instance, anxiety disorders, particularly panic disorder, can cause acute respiratory symptoms such as shortness of breath, the feeling of suffocating and air hunger alongside an intense fear of losing consciousness, collapse, and death. This experience of the ‘mental’ disorder isn’t limited to emotional, physiological or psychological symptom patterns; behaviour and social interaction would invariably be impacted upon also.

As an example, the patient may avoid going out to prevent shortness of breath via a panic attack, which negatively reinforces their fear (‘I didn’t have a panic attack because I didn’t go out’), and can lead to worsening suffering or depression through social isolation. The disorder is also situationally embedded; it may be triggered by a specific environment (e.g. exam anxiety), or may stem from bodily sensations which are mistaken for signs that something terrible is about to happen. Treatment options may include breathing exercises, challenging thoughts or behaviour patterns, medication management, and mindfulness (to name but a few).

Such clinical experience, whilst in mental health rather than in a respiratory setting, is highly relevant to this project: in the context of the lived experience of respiratory distress, breathlessness experiences are similar in mental and physical disorders. Indeed, panic anxiety with the main symptom of dyspnoea is frequently experienced by patients with respiratory disorders such as COPD. The rates of comorbidity are higher than with any other mental disorder and patients report greater perceived disability than patients without panic anxiety. This is despite the fact that the pulmonary function tests of both those with and those without anxiety are broadly the same.

This was a difficulty that stood out: ‘medicine could not account for such subjective variation and experience as it is focused on objectivity, by virtue of being ‘predicated on a view of human nature that highly positivist and atomistic’ (Macnaughton, 2014). Phenomenological investigation can overcome such subjective/objective dichotomy by exploring the world of the patient (with inherited, shared notions such as ‘disabled’, offender, etc.), their experience, culture and their frame of reference. Such considerations can also give a voice to patients’ experiences of medical care, which will lead to a greater understanding of the impact of disorders, treatment and issues with medication concordance (and thus treatment failure rates).

Whilst undertaking this work, I repeatedly returned to concepts and ideas informed by my previous studies of phenomenology, particularly within the context of the lived experience of these disorders. Embodiment, self-identity, the ‘lived’ body versus the ‘biological’ body of science, inter-subjectivity, ‘being-in-the-world’: all of these concepts (and more) informed my understanding of how we exist in the world, and how our perceptual experiences as well as our understanding of the world is part of a rich and complex tapestry. This is largely excluded from the language of medicine, but that can be explained through phenomenological study.

Within my professional work, I saw first-hand how ‘mental’ health conditions were not purely psychological dysfunctions or patterns of symptoms. The complexity[2] in their very existence went much deeper than that, and biomedicine failed to capture this. This resonated with my clinical experience: I was fortunate enough to work with women from a range of socio-economic and cultural backgrounds and was able to see how their background and social situation –‘their being-in-the-world’ – shaped their understanding of their disorders and the meanings they attributed to them. Both in Blackburn and Lancaster, two demographically different areas, I worked with patients including domestic abuse survivors, social service clients, and female offenders in partnership with Lancashire agencies such as the probation service. Their experiences and self-understanding fed into not just the onset, presentation, or recovery but the meaning that they attached to the significance of the disorder and its impact on their self-perceptions and self-worth (e.g. physically or mentally disabled, inhibited, damaged, liberated, deeper awareness, and so forth).

Such invaluable experience with such a diverse section of the public alongside issues surrounding the problems with evidence-based short-term interventions further raised questions pertinent to this project and which can be explored through phenomenological research.[3] For instance, why is there such a high rate of smoking among people with mental health issues in offender populations? Why is this unchallenged?[4] Treatment of disorders, along with help for smoking cessation demands an understanding of the varied experiences and social context of the individual in question to better meet their needs and treatment failure rates. The person and their experiences are not reducible to biomedical symptom-counting and measurement. Phenomenological investigations of these lived experiences with the focus on the first-person, embodied and socially-situated person is important in shedding light on these issues.

In short, a phenomenology of breathing and breathlessness is essential to and a large portion of my research project. Philosophical enquiry exploring the first-person experiences in conjunction with examining the overly atomistic and dehumanising gaze of reductionist biomedicine on these experiences will help to achieve a more detailed account of the experiences of breathing and breathlessness, and their treatment experiences.

There is a lack of cultural and philosophical study of breathing and breathlessness, which is part of the rationale for the Life of Breath project. I hope to bring my expertise and knowledge to this important inter-disciplinary project to try to answer some of these issues (and many others). I look forward to starting my research. Thank you for reading!

[1] Carel, H. (2011). Phenomenology and its application in medicine. Theoretical Medicine and Bioethics. 32: 33-46.

[2] Further complexity was added clinically and theoretically in actual treatment as some of these patients also suffered from physical health conditions such as respiratory disease; this could make challenging their thoughts and behaviours difficult and thus ultimately hinder treatment. For instance using ‘cognitive restructuring’ techniques such as challenging the thought that shortness of breath means danger in a patient with severe asthma, or  getting patients to hyperventilate to show that they will not pass out would be wholly inappropriate. Exploring whether their symptoms were the cause of the respiratory disorder or anxiety would have to be explored in an empathic, collaborative (patient-led) manner. Other treatment options such as breathing retraining, mindfulness and behaviour experiments could be offered.

[3] See also this paper on evidence-based psychological interventions from the Australian Psychological Society.

[4] Research shows that smoking actually increases stress and anxiety symptoms, yet clinicians are reluctant to address this as it is generally held that, as smoking relaxes patients, it is the lesser of two evils.