Part I
Setting the scene
1
A background to mental health and physical activity
Experiencing mental health problems
When Neil Armstrong set foot on the moon and spoke the legendary words, âThis is one small step for man, one giant leap for mankind,â his actions embodied the technological advances of his time. Donned in a space suit protecting him from a hostile environment, Armstrongâs walk on the moon also symbolised, in many ways, that while science may have made significant breakthroughs, there is still so much we donât know, canât change or control. This is not only with regard to outer space and the planetary constellations that surround us. The space within us â physical, psychological, emotional and spiritual â remains an elusive and fascinating area of exploration, and this is certainly the case as we seek to understand and sustain mental health.
For the teams of scientists that supported the Apollo trip, it was possible to record every minute detail of Armstrongâs physiology. However, the data recorded by some of the most sensitive equipment known to humankind was unable to inspire generations of children because this data, though complex and comprehensive, could not communicate to us what it felt like walking on the moon. In contrast, when Armstrong said, âItâs really pretty up here,â those listening on earth began to get an understanding. Isnât it amazing with all the tasks this astronaut had to accomplish that he took time to view the heavens and comment on their beauty? NASAâs aim, of course, was to put a man on the moon and bring him back safely. Their interest probably wasnât on how this individual would describe his experience of the trip. Being human, however, means that collecting facts and figures only represented part of the complex picture of the journey, and gaining a more complete understanding of this journey required Armstrong to describe his experience. Understanding how Armstrong gave meaning to his experiences might not have been essential to maintaining homeostasis, but it is essential if we are to understand the man and support other astronauts.
This kind of perspective informs our approach in the book: it is a perspective which recognises the difference between knowledge and wisdom. As Patricia Deegan (1996, p.91) has observed in the context of mental health, âmost students emerge from their studies full of knowledge but they lack wisdom or the ability to see the form or essence of that which isâ. Wisdom of this kind is fundamental to understanding how physical activity and sport can contribute to recovery among people experiencing mental health problems. For us, this understanding starts with experience. We want to explore the question: âWhat is it like to experience physical activity and sport in the context of mental health?â We also want to begin to appreciate meaning: âWhat does physical activity and sport mean to individuals living with mental distress?â Scienceâs focus travelling deep into the brain with ever-more complex equipment, having a better grasp of the aetiology of mental health and looking for clues at a microbiological level, only provides part of the picture. At times, this focus can come to divert attention and interest away from the person and how he or she experiences the recovery process.
To start this opening chapter, we leave physical activity and sport aside to focus on mental health and illness. We want to focus initially on the question: âWhat is it like to experience mental health problems?â To answer this question, the focus must be directed towards the individual, personal level. Some readers might be able to draw upon their own experiences of mental ill-health, but if you have no experience of mental illness the stories of people who have walked these particular paths can provide important insights. Either way, the following accounts hopefully begin to draw attention to the diverse nature of experiences of mental health difficulties.
Several books exist which are dedicated to presenting and exploring stories of the experience of mental illness (e.g. Karp, 1996; Davidson, 2003) and we recommend these sources as they provide more comprehensive collections than we are able to provide here. In addition to these books, several individuals who have themselves experienced forms of mental distress have written about their experiences and published their accounts in health or social science journals. It is these accounts that we draw on now to give a flavour of what it can be like to experience mental health problems. We present below brief excerpts from the stories of three individuals: Peter Chadwick (2001a), Brett Smith (1999), and Stuart Baker-Brown (2006). Other examples can be found in the work of Patricia Deegan (1996) and Brendan Stone (2009).
Alas thereâs no privacy here⊠no privacy anywhere⊠the cracks in the wall plaster⊠hidden microcameras in them⊠the walls, people listening, listening through them, like they did in Bristol, all the time. The window⊠binoculars on it, cameras with zoom lenses⊠they can see me⊠people watching, watching. The world a prison wherever I go. Horror behind, terror in front⊠but what do they want of me?! Are they trying to puncture my pathetic bloated ego with their pranks, as Sherwin used to do at school? Teach me a lesson? Cure me of my evil sensuous ways? Make me âcome downâ? Under observation, always under observationâŠ
But thereâs a knock on the door. Itâll be Tony McAdam from downstairs. It is. He asks if I have any cigarettes. I say no. Tell him Iâve given up smoking, which I have. He launches into (yet another) anecdote about how he beat up this guy the previous night. I say quickly, âOoooh, fighting, even more frightening than homosexuality!â
He looks at me slightly surprised. I notice for the first time that I sound mad. What a thing to say. I really do, I really sound madâŠ
What a district this is. Hackney. How did I ever come to live here? Nowhere else in London will take you if you have a dog. You canât get a room anywhere. Certainly not in West London anyway. Everybodyâs business is everybodyâs business. No privacy, no-one has any loyalty anymore. Slagging people off, slagging people off, thatâs all it is⊠all the time. And Iâm right in the middle of it. Transparent, invaded, betrayed. Thatâs my life.
(Chadwick, 2001a, p. 55. Copyright © 2001, SAGE Publications. Reproduced with permission.)
Upon pinching our pale skin, a barely audible question escapes from our mouth: âHow are we doing?â
Silence. We listen to our breathing â it is shallow and pathetic. âAre we all right?â Slowly we shake our head. We donât want to speak â not today anyway.
âMorning,â we whisper. The word flickers in our consciousness. âHow are we feeling today?â
âNot the best,â is the apathetic reply. âTodayâs going to be another bad one,â we say stoically.
We feel the violence of the vortex gather pace as it screams inside our body. We twist through its complexity and pound on our corporal self. As usual, questions concerning its authenticity bob up and down in our sea of pain. How do we really feel? The word doesnât describe our feelings â does it? Surely itâs unimaginable to those who have not suffered with it? People walking down the street, students, friends â whatever â nonchalantly spew it out. It seems that the word, like a slug slithering innocuously through language and culture, leaves little trace of its intrinsic malevolence. Has it become so common in everyday language? Has it lost its depth, its meaning, and its feeling? Has it been hammered into banality? we think. As always, however, we struggle for answers while our mind becomes a cesspool of ominous thoughts. We become swamped in our(selves).
The torture continues in our head. How can life be filled with such torpid indifference? The little things like taking our dog for a walk in the park on a warm spring day or playing football with our friends just arenât fun anymore. We breathe and walk, we just donât live. We are detached and hollow. Under our blanket of suffocating darkness, we pretend that everything is fine, yet, we rot away from the inside. At times it spews bits out. At times it swallows us whole. At times both. No warning, bang! We move from pain to pain. We have only one future. Please God, help, we plead as our huddled body rocks back and forth.
Confused and afraid, we donât want to talk anymore. âPlease leave,â we gently sob.
(Smith, 1999, p. 264. Copyright © 1999, SAGE Publications. Reproduced with permission.)
As I write these words, I can recall my paranoia and fear building up on a daily basis.
I tried to convince myself that I was under no threat and that my fears were unjustified, but I quickly began to be afraid of everyone and feared that my life was in danger. I did not know what to do. I had no idea that I could have paranoid schizophrenia; I did not even know what schizophrenia was.
Stress and paranoia began to take their toll. I quickly became confused in my thinking and obsessed that I was being followed. Often, when I got back to my bedsit after work I would huddle in the corner of the room in fear.
As the weeks passed and pressure took its toll, I had to take time off work. Anxiety and paranoia were now quickly and devastatingly beginning to run my life, and a deep-rooted illness was setting in.
During this time I had my first and worst psychotic experience. It was an extremely frightening time and still scares me now as I think of it. As I lay on my bed trying to relax, I suddenly found myself in complete darkness. I had the experience of being physically vortexed into my own dark mind. I cannot truly explain what went on, but the feeling of it still terrifies me. I screamed to be let out, and as I screamed I found myself back on my bed with a strange sensation around my head. It was as though I was sucked into my own dark mind away from any life or reality.
(Baker-Brown, 2006, p. 636. Copyright © 2006, BMJ Publishing Group Ltd. Reproduced with permission.)
On reading and re-reading these stories, we find ourselves reflecting on each individualâs experiences, wanting to know more and wondering what happened next. We both feel a range of emotions as we read and reflect on the stories, which may resonate with or be initiated by the vivid descriptions within each account. While each of us responds to different details within the stories, feeling different emotions in different ways, we both find the stories difficult to read or hear â they are troubling and challenging, perhaps because of the degree of suffering they portray. There are some recurring themes which strike us in the stories: a strong sense of fear, how the experiences recounted were experienced as frightening or even terrifying; a sense of isolation, that the teller recounts feeling somehow separated or removed from other people and/or life; a sense of joylessness, a loss of fun, humour, enthusiasm; hopelessness, a loss of optimism or interest in the future; a loss of agency or autonomy, a feeling of being out of control; a sense of inactivity, inertia, feelings of nothingness or emptiness; and, finally, a sense that the experience of distress is total, complete and permeates across many aspects of the individualâs life in profound ways.
For us, perhaps the most striking theme across the stories is their diversity. Although each story describes the experience of mental health difficulties, the stories are varied and individual both in terms of the particular events and actions recounted as well as the individualâs emotional response to those occurrences. The themes we identify above arise from our perspective on the stories â we see the stories through the lens of our own experience. In recognition of this, and because the stories are so diverse and complex, we encourage you to reflect on the stories from your perspective in order to form your own interpretations and conclusions. What do you feel having read the stories? How would you respond to the experiences recounted in the stories? Our reason for presenting this selection of stories here and now is to allow for this openness, because we understand that mental health and illness can be experienced in many different ways which relate to individual circumstances, biographies, experiences and contexts. We hope that these brief passages provide some insights and provoke some reflection on what is clearly a very personal yet highly distressing and extremely difficult set of experiences.
Attendant to each story â either before or after the events recounted â is likely involvement with mental health services and, therefore, the medical processes of diagnosis and treatment. We would now like to briefly consider this aspect of experience by presenting a further story of one individualâs contact with mental health services which is taken from the writings of Baker-Brown (2007), who was diagnosed with, and treated for, schizophrenia. A further and comparable example may be found in Deegan (1996):
I was unprepared for the weeks after my diagnosis, during which my psychiatric nurse told me that it was very likely that âI would never work again in my lifeâ and that the rest of my life would probably be about âfighting to keep my schizophrenia under controlâ. I had never contemplated not working again and had always assumed that I would gain control over my illness and one day, sooner rather than later, be able to return to work.
These statements from my nurse threw me completely. More was to follow from the trust. My nurse told me that I had âto proveâ that I could function as a normal member of society and that I would not be âa threatâ to anyone. I was shocked by these words and this very poor attitude towards me and my illness. The demoralisation caused by my illness was complete, and soon after receiving my diagnosis I became a broken man. The trustâs lack of proper care and understanding of my needs as a person with schizophrenia, and being treated more as a âconditionâ that needed controlling than a person who needed âunderstandingâ, made sure of that.
(Baker-Brown, 2006, p.637)
This account raises the important issue of how the processes of being diagnosed with and treated for a mental health problem can interact in powerful ways with a personâs understanding of themselves and their goals and aspirations for life. While the previous stories of the experience of mental distress are diverse, varying widely in terms of both their form and content, accounts of what it is like to âbe a mental health patientâ often exhibit a worryingly high level of agreement and consistency concerning the ways in which diagnosis and treatment can in themselves be a damaging experience. It seems to us that a two-level impact is described by many people who have written about mental illness: First, the experience of a mental health problem is in itself traumatic and potentially damaging. Second, the experiences accompanying diagnosis and treatment can â for some people â lead to a second level of trauma and suffering. One result of this can be the loss or denial of the day-to-day freedom and opportunities that many of us take for granted. In this regard, as Chadwick (1997b, p.580) puts it, âthere is no doubt that a psychotic episode leads to severe marginalization, pejorative categorization and disempowermentâ.
A conceptualisation of mental health
In light of these and many other diverse accounts of mental health and illness, what position might we take in terms of conceptualising or defining mental health and illness? While we are reluctant to prescribe a specific definition, a working conceptualisation seems necessary. We are drawn to the broad and humanistic definition of mental health provided by the Department of Health (2003) which states that mental health is âthe emotional and spiritual resilience which enables us to enjoy life and to survive pain, disappointment and sadness. It is a positive sense of well-being and an underlying belief in our own and othersâ dignity and worthâ (p.8). In the United States, a similarly broad definition of mental health is provided in the Surgeon Generalâs Report which sees mental health as âa state of successful performance of mental function, resulting in productive activities, fulfilling relationships with other people, and the ability to adapt to change and to cope with adversityâ (US Department of Health and Human Services, 1999, p.4).
Although we are cautious of using the terms âillnessâ or âill-healthâ in the context of mental health on the basis of the adverse effects such labelling can have on individuals (see, for example, Rogers & Pilgrim, 2005), we find it difficult to talk about our research or describe our research participantsâ backgrounds and experiences without using these terms. This particularly applies to the terms serious mental illness and severe and enduring mental illness because they are routinely used to cover the variety of diagnoses which apply to the individuals with whom we have worked. So while we try to minimise our use of these potentially pejorative terms, when we do employ them we follow the definition of serious mental illness as âa diagnosable mental disorder found in persons aged 18 years and older that is so long lasting and severe that it seriously interferes with a personâs ability to take part in major life activitiesâ (US Department of Health and Human Services, n.d.).
Another way of defining mental health and illness might be on the basis of its aetiology; however, this in itself is a highly contested area. Rogers and Pilgrim (2005) and Chadwick (2009) provide thorough discussions of recent and current debates concerning the causation of mental health and illness. As these authors make clear, arguments have raged over decades â and continue in some quarters â regarding the extent to which mental health is seen as biologically determined (through genetic makeup, for example) or shaped by socio-cultural, environmental, eco...