Illness onset as status passage for people with multiple sclerosis (MS).

Vickers, Margaret H.

MULTIPLE SCLEROSIS (MS) AS LIFE TRANSITION

In this article I explore the passage that a person with multiple sclerosis (MS) makes as they transition from one set of socially identified circumstances to another (Mayrhofer & Iellatchitch, 2005)--that is, when they transition from the role of being a person-without-MS to being a person-with-MS. I present this transition as a status passage (Glaser & Strauss, 1971) involving different interpretations, meanings and phenomena. Glaser and Strauss' (1971) construct of the status passage is used to model the significance of this life change for people with an onset of MS. MS is a disease that can substantially interfere with daily routines, activities, family, social and working lives, as well as the emotional well-being and quality of life of those impacted (Janssens, van Doorn, de Boer, van der Meche, Passchier & Hintzen, 2003). I claim that the onset of MS is a status passage worthy of careful consideration for people with MS, those around them and, especially, for the health professionals who provide them with much needed support.

MS is a degenerative disease of the Central Nervous System (CNS) (Kraft, Freal & Coryell, 1986; Rumrill, Roessler & Cook, 1998), characterised by damage to the myelin sheath which insulates the white matter tracts within the brain and along the spinal cord (Rumrill, Tabor, Hennessey & Minton, 2000). It is often unpredictable in its course and is frequently progressive over time. The most common physiological symptom for a person with MS is fatigue (Kraft et al, 1986; Gregory, Disler & Firth, 1993; Rumrill et al, 1998; Koch, Rumrill, Roessler & Fitzgerald, 2001), with many other symptoms including diminished strength, sensory problems, reduced stamina, bowel or bladder dysfunction, visual impairment, depression, anxiety, pain, cognitive difficulties, and sexual dysfunction (Koch et al, 2001, p. 157; Rumrill et al, 1998; Vickers, 2008; 2009a; 2009b).

Multiple Sclerosis (MS) is one of the most prevalent neurological disorders in the world (Rumrill et al, 1998; Rumrill et al, 2000) with as many as 2,500,000 people in the world having MS. Approximately 500,000 people with MS can be found in the United States (Rumrill et al, 1998) and around 16,000 in Australia (MS Australia, 2005). For the majority of people with MS--around 70 per cent--the course of the disease is characterised by seemingly random cycles of exacerbations (relapses) and remissions (Rumrill et al, 1998, p. 242; Vickers, 2008, 2009a, 2009b). For others, a swift and unrelenting decline in ability can characterise their experience of the disease. For most people, learning that they have MS will lead to significant changes in social attitudes and expectations, life roles, potential for stigmatisation, anticipated exposure to negative, disability-related stereotypes, increased life challenges, and a correspondingly greater need for social support. I claim that the onset of a disease like MS is a significant life passage for the individual concerned that commences before they realise they have MS. I aim to explore the lived experience of the Illness Onset Status Passage here.

METHODOLOGY

This qualitative study was situated in Sydney, Australia. Heideggerian phenomenology was used to capture and share the subjective life experiences of people of people with MS, along with the meanings held by that these individuals (Oiler, 1982; Drew, 1989). The goal of Heideggerian phenomenology is to understand everyday practices (Benner, 1985), and the hermeneutic method outlined in Heidegger's Being and Time (1927/1962) offered a method for the study of day-to-day human activities. Lived experience refers to the German word Erlebnis, literally living through something, bringing the pre-reflective dimensions of human existence to the fore (van Manen, 2003; Raheim & Haland, 2006). Heideggerian phenomenology underscores the importance and value of the informant's reality and the need for the researcher to share that reality with others (Swanson-Kauffman, 1986).

Contact was made with potential respondents through the MS Society of New South Wales (NSW). I was invited to contact members of support groups, which included attending meetings to explain the study and recruit potential respondents. I also placed an advertisement in a neurologist's office, advertising the study and inviting potential respondents to contact me directly. I interviewed 20 respondents, with a total of 21 interviews being conducted. During the interviews, questions were directed toward events in these people's lives and how they were experienced, as well as giving respondents the opportunity to explore meaning (Raheim & Haland, 2006).

Interviews ranged from 1.5 hours to 3 hours in duration and were guided by focus areas that shifted as the interviews progressed. Sixteen women and four men participated in the interviews, a reasonable representation of the sex breakdown of the MS population worldwide, currently at around 3:1. Respondents' ages ranged from 28 to 65 years, with a mean age of 47 years. In all, there were over 43 hours of interview data, including 35 tapes that were transcribed verbatim. This resulted in 1, 222 pages and 335, 258 words of transcribed text. The study was approved by the University of Western Sydney Human Ethics Review Committee as well as the Multiple Sclerosis Society of NSW. Pseudonyms were used for all respondents, people and organisations mentioned during the interviews (Vickers, 2008).

Finally, I disclose to readers that, at the time of the interviews, I had had MS for over twenty years, and had experienced varying levels of disability over that time. During the interpretation and analysis presented here, I realised that I could still clearly remember my first symptoms of MS, how I had reacted, and how I had felt at the time. Heideggerian phenomenology accepts and encourages the personal knowledge and experience of the researcher. According to Heidegger, the researcher's influence will determine which phenomena, experiences, facts and relationships will enter their consciousness (Moss & Keen, 1981). The researcher's experience is also recognised as necessarily shaping the interpretations made (Osborne, 1990). I was operating from an "inside" perspective. As Wilmot (1975) confirmed, an insider operates on different information and a different perspective than one on the outside (ie one without MS). The locus of information, whether it is inside or outside, is the first central difference in how we attribute meanings to both our own behaviour and the behaviour of others (Wilmot, 1975). It was my own recalled experiences of the onset of MS that highlighted to me that this was a status passage worthy of concern.

ILLNESS ONSET AS STATUS PASSAGE

Erikson (1964) observed the notion of a life passage by identifying various life cycle stages. Erikson showed life unfolding for people in an observable sequence with each new stage being marked by a "crisis". Crisis, in this context, was not a catastrophe, but a turning point in that person's life, often characterised by a period of increased vulnerability (Erikson, 1964; Sheehy, 1974). Sheehy (1974) also documented these predictable crises of adult life as associated with the life cycle. However, unlike the life passages described by Erikson and Sheehy, the passage that people with MS experienced with the onset of their disease is one that is not a necessary part of their life but which results in that person shifting to a new life role, a new bodily awareness, and the need to develop a whole new self and identity as a result of the transition.

I found Glaser and Strauss' (1971) notion of the status passage more helpful to this analysis. Status passages are characterised by important changes in behaviours and consequences for the persons involved (Glaser & Strauss, 1971). Constituent properties of status passages include: the potential reversibility of the passage; the shape of the passage; its desirability; whether the passage is experienced as a collective, in aggregate or solo; whether it is an individual or multiple status passage; and includes the temporal aspects of social mobility associated with many status passages (Glaser & Strauss, 1971). The notion of the status passage had also been examined with reference to the experiences of gay men as they transitioned through life with HIV and AIDS, where six major interrelated properties of the status passage were identified: reversibility, temporality, shape, desirability, circumstantiality, and multiple status passages (Lewis, 1999; Glaser & Strass, 1971). HIV/AIDS is also noted to be an intrusive illness, with individuals affected finding that, once diagnosed, in addition to becoming attuned to a precarious health status, they must also learn that they are living with a highly stigmatised illness (Lewis, 1999). I claim that this is also how it is for people with MS.

When a person learns that they have MS, they exit from their former role as a person-without-MS to a new health role and associated identity of a person-with-MS. Many of the properties of the role-exit process identified by Glaser and Strauss (1971) and, later, Ebaugh (1988) are relevant to this analysis: questions around the voluntariness of the passage, the centrality of the role, its potential reversibility and duration, the degree of control that the bearer has, the desirability of the new role, and the degree of awareness that the bearer has about the new role and all that is associated with it. Certainly, there are likely to be numerous potential status passages for people as they journey through their new lives with MS, many of them negative and very challenging. However, I am concerned here with what I consider to be the first status passage associated with having MS. I have termed this the Illness Onset Status Passage. Importantly, much of this status passage takes place prior to the person knowing they have MS, or knowing much about MS. The Illness Onset Status Passage is the "journey-before-the-journey" of living with MS. Of interest, for a person who experiences the onset of MS, there is no exit from their new role. At the time of writing, there is no cure for MS and so, correspondingly, no possible exit from this role except in death.

Following Glaser and Strauss' (1971) and Lewis' (1999) analyses of the properties of status passages, I examined the experiences reported to me surrounding the onset of MS, including the onset of symptoms and news of their diagnosis (1). Following Glaser and Strauss' (1971) analysis, the relevant properties of the status passage for the Illness Onset Status Passage that I am proposing include: the centrality of the role, shape of the passage, (ir)reversibility, (in)voluntariness, (un)desirability, degree of awareness of the passage, and the characterisation of this as a single (or multiple) status passage described below:

* Respondents shifted in role, forever, from being a person-without-MS to being a person-with-MS;

* The status passage and associated change in health status would affect relationships, social standing, careers, finances, future life choices, stress and anxiety levels, quality of life, and health and wellness;

* The status passage was irreversible;

* The status passage was involuntary;

* The status passage was undesirable;

* The status passage was highly stigmatised;

* The status passage was not socially desirable;

* The experience of the status passage was shaped by initial symptoms, including the seriousness of those symptoms, the speed of onset, and the amount of initial life disruption that resulted;

* The experience of the status passage was shaped by the respondents' lack of awareness, both of having MS, and what having MS might mean;

* Respondents had no control over the illness onset;

* Respondents' were engaged in an individual, single status passage (just one of the multiple status passages that would accompany a future life with MS).

In the sections below I have showcased the lived experience of Illness Onset Status Passage for people with MS as they moved to a new life where all the rules had changed--often, with them having little, if any, knowledge of what was going on.

LIVING THE ILLNESS ONSET STATUS PASSAGE

An Unknown Passage: Lived as "Harmless" Symptoms

The commencement of the Illness Onset Status Passage reminded me of the commencement of the journey experienced by people with unseen chronic illness: this life changing journey also commenced with the experience of initial symptoms, rather than a diagnosis (See Vickers, 2001). When respondents first began to experience symptoms of MS, they often didn't know that anything serious was wrong. They were sharing with me, without realising it, evidence of their "journey-before-the-journey". For many respondents, their Illness Onset Status Passage began with what respondents believed were trivial, seemingly "harmless", symptoms. Certainly, these early symptoms didn't signal the significant life changes one might expect with the onset of a serious, potentially degenerative, neurological disease. Respondents were experiencing what Erikson (1964) described as a "crisis" period, not because it was immediately dangerous, or catastrophic, but because this was a crisis that marked a turning point in their life and signalled a period of increased vulnerability (Erikson, 1964; Sheehy, 1974). However, many respondents believed this to be a "harmless" beginning; their symptoms were seemingly innocuous and, they felt, not threatening. Many remained unconcerned, if somewhat puzzled. Marlene's "Harmless" Symptoms began with tingling in her legs:

MV: Now what about you physically? What happened that you needed to go to the doctor and get tested?

Marlene: Tingling in the legs ... Because I had tingling, not much else was the problem, just the tingling. And that's why I went to the doctors.

Rowena explained some mild difficulties walking as well as having an unusual sensation, a result of the MS, of feeling as if she had golf balls under her feet when walking. Of interest, Rowena didn't immediately see a doctor when this happened. She reported being influenced in not seeking medical advice when experiencing these early symptoms believing, at the time, that it couldn't be anything serious because others couldn't see that there was anything wrong with her:

Rowena: And I ended up coming to work mostly through that because people couldn't really see that I had anything wrong with me. Although it did affect my walking, because the other thing I felt like I had golf balls underneath my feet, so I felt that I was walking on sort of uneven lumps underneath, like really big lumps.

Glen and Ned also had seemingly trivial starts to their Illness Onset Status Passage. Glen described to me how he had been a regular tennis player, prior to his MS diagnosis, and had found that he suddenly couldn't run for the ball the way he used to. Glen had assumed at the time that he was getting older, and less fit. Rather than see a doctor, initially, Glen's response was to go out running to increase his fitness:

Glen: Probably, one of the things that really first made me wonder what was going on is, I played tennis and I found I couldn't run like I used to be able to run. And that probably even went back to little bit earlier than the 70's. And I thought at that stage, "Yes, yes. You are getting a bit old," and so I used go out running around the block to try and get fitter.

Of course, the problem was neither that Glen was getting older, nor that he was unfit. He was experiencing the onset of MS symptoms but, at the time, didn't understand what was happening to him. Ned had a similar experience. As an avid and talented soccer player and sportsman, Ned found that he wasn't able to kick the ball with the same power as usual. Ned sought to improve the situation by training harder, but nothing improved:

Ned: I used to play a lot of soccer. And I had had a break . and when I went back I noticed that I couldn't kick the ball as far as I used to be able to kick the ball. And I thought it was just because I'd had a couple of years out of the game. So I went to the gym and I started working to build up my legs to get them stronger. And despite doing that, like quite an extensive and intensive program, I couldn't build up my leg. I couldn't get it any stronger. And I noticed . as the season went on I was kicking less and less in terms of distance and power. And I still thought it was just leg strength. I didn't think that there was anything wrong.

MV: You could still run around ok?

Ned: I could still run around and there was no problem about that, but I just couldn't kick the ball as hard as I used to. And I just thought it was one of those things, you know, I didn't really think anything of it. I just thought it was something, that I'd been out of the game too long and my leg, something's wrong with my leg and I didn't really get it checked out by anyone because I just didn't think it was that serious. I just thought it was [laughing] one of those things. Tough luck!

Kate found herself walking to the left without wanting or meaning to. She explained how this started to become evident during her morning walks around the bay where she lived. It took her some time to really accept that anything was wrong:

Kate: I think the first thing that I felt, and I really wasn't aware of what was going on, was I started to feel, when I was doing my walk around the bay, I started to feel like I was going to the left. Like walking to the left all the time, and I didn't know what was going on but I just had to be careful . And I thought, "Oh, that's really strange." And then that probably lasted a good month I'd say.

Marlene, Kate, Rowena, Ned and Glen were all beginning an Unknown Passage to a new status, identity, sense of self, and lived experience. For them, the beginning of their passage seemed harmless, as the physical changes were thought to be trivial. However, without them realising it, these putative "harmless" symptoms still marked the commencement of their Illness Onset Status Passage. Weick (1995, p. 4) described sensemaking as, literally, the making of sense (Weick, 1995, p. 4) and involving more than just interpretation of events or experiences, but a creation of meaning (Weick, 1995, p. 8). All respondents reported trying to interpret these initial supposed "harmless" symptoms, but were doing so without full information. Unfortunately, the vulnerabilities of framing, such as incomplete information, can result in a false reality being constructed in the minds of those trying to make sense (Vickers, 2002). Respondents' were contrasting their new physical symptoms with their old ways of being, resulted in them making a disjunctive passage, which refers to situations where the individual attempts to reason or negotiate without help or guidance (Wheeler, 1966, cited by Bradby, 1990)--they were trying to figure it out for themselves. In most cases, they were wrong.

An Unknown Passage: Lived as Alarming Symptoms

For other respondents, their Illness Onset Status Passage commenced with the experience of far more stark markers of a potentially serious health problem. Their Illness Onset Status Passage commenced with profound, alarming bodily symptoms that could not be ignored. Status passages can include changes that can be quite startling, and which may be accompanied by feelings of bewilderment and being overwhelmed--a kind of reality shock (Bradby, 1990). Respondents were facing frightening and (at this point) unexplained bodily changes that could not be ignored. These significant MS-related changes also resulted in seismic shifts in respondents' lives, in some cases, overnight.

For example, Meredith described cognitive problems and nocturnal incontinence. For a woman in her early twenties, this was a shocking experience. She described her changed cognitive abilities as "trying to think through a pea soup fog." She also found herself wetting the bed at night inexplicably and, despite seeing doctors about both these problems, expressed her concern at the time that no-one would listen to her. Meredith shared one especially disturbing experience of forgetting who she was and not knowing how to get home, an experience which baffled both her and her doctors:

Meredith: I said, "I can't think. I can't concentrate. I can't find the words I need to speak. I can't concentrate. I can't remember anything." And the biggest thing that finally made them go and do the MRI and they said, "There is something significantly wrong with you," was I got lost going home one day. But I was in my own street and I didn't know where I was.

MV: Wow. Were you walking or driving? Meredith: I was driving.

MV: And you just didn't recognise where you were?

Meredith: I was in my own street. I knew enough to get to my street. I knew my address and I knew the street that I lived in and I got out the street directory. But I couldn't recognise anything. And I was reading the street numbers, and I'm going, "No, the street numbers are getting bigger. I think I'm going the wrong way. I think I have to go the other way". And I'm going, "No. Those are shops. There are shops here. I don't live in shops. I have to go the other way". And I went back to the doctor's, a psychiatrist at this stage and he said, "I think there is something seriously wrong with you". And I said, "Hello! I've been telling you that for two years!" Meredith's Illness Onset Status Passage included both the anticipations and anxiety experienced prior to knowledge and understanding of what was happening to her, but also showing that she was making some attempt to understand the changes taking place (Bradby, 1990). Meredith's sensemaking here involved, specifically, the concept of invention of or creation of meaning, which often precedes successful interpretation (Weick, 1995). We experience events in terms of what has just occurred; sensemaking is done retrospectively (Weick, 1995; Vickers, 2002), with meaning being attached to these events after the fact (Schutz, 1932/1967). Meredith was trying to make sense of what had happened to her, knowing something was seriously wrong, but not knowing what, or how to respond. Miranda's Unknown Passage also began alarmingly when she lost vision in one eye completely, over just a few days:

Miranda: I had a headache for about 10 days . and the headache was really bad. That lasted for about 10 days and then eventually, basically, I got up to shower and go to the toilet . I thought I could get up and make myself a cup of tea ... So I got up and I sat here and made myself a cup of tea and I just covered my eye and then I looked out of one eye and thought, "Oh, I can't see!" And it was pitch black. It was like thick black smoke and I thought, "I can't see out of that eye." Hilary's Alarming Symptoms commenced with the loss of both motor capacity and sensation in her legs. Within just one day, she found herself with a left leg that didn't work at all and a right leg heading the same way. The shape of all these women's Illness Onset Status Passage was reflected in the speed of change and the profound impact these initial, Alarming Symptoms had on their lives--still without them knowing what was happening to them:

Hilary: I woke up one day. I was at university, I was in 2nd year university, and my leg was a bit sore. I had a psych essay due, and I'd never asked for an extension before and I thought "Oh, what the hell." And I didn't feel right. So I found a GP, because I'd never been sick before and didn't have someone I regularly went to. By the time I'd got in to see him, an hour and a half later I guess, my whole left leg wouldn't work. There was no sensory or motor feeling, nothing. He sent me on to some specialist . He obviously just thought, "Push her on, because I can't deal with it." And the guy looked at me and he said, "You're going for an MRI." Because by that time, the right leg was going as well. So, the next morning, an MRI. That afternoon they had a look at it, and by that time I was in a wheelchair. And they said, "Yes, we think it is MS, definitely." There's plaques in my brain and all the way down my spine as well.

Mary's Alarming Symptoms commenced when she found herself unable to speak or walk:

Mary: Yes, yes. It was hard for me to speak. I needed to have two people help me go to the doctor . I was very incapacitated and scared ... I just, I had no option but to stay in the hospital for four months, almost four months . I wasn't able to move and I wasn't able to speak. I had about two words. I mean, you know, may be seven or eight words but --, MV: That's all you could say?

Mary: Yes, but I could only do one word at a time. But even so, I could say, "Yes, or no". And it could change . I could say, "Yes" and I didn't really mean "Yes".

Health status is a role that is central to identity (Lewis, 1999). Where the Illness Onset Status Passage begins in such a dramatic, frightening and profound way, even though respondents still didn't know they had MS, they were experiencing a clear threat to their identity and health status because of the significance, and disruptive capacity of the initial symptoms they were experiencing. Key properties of their Illness Onset Status Passage were now in evidence, even if respondents still didn't know the cause. They were experiencing a shift in health status (even if they may have thought it was temporary), and were learning, for the first time, of the irreversibility, involuntariness and undesirability of such a shift in status in relation to their health. Lewis (1999) confirms that benchmarks and turning points during a status passage serve as important markers of where a passage is going and the speed of change that will be felt. Respondents were living the first stage of their Illness Onset Status Passage as serious symptoms that could not be ignored.

Incomplete Knowledge Lived as Felt Stigma

As respondents continued their Illness Onset Status Passage with MS, at some point all respondents eventually sought help from the medical profession and ascertained a diagnosis. At the point of diagnosis, they changed. Their Illness Onset Status Passage found respondents having shifted from being a person-without-MS to a person-with-MS. The knowledge that they had MS, without necessarily knowing what that meant for them then, or in the future, brought into clear relief their initial symptoms, whether believed to be "harmless" or alarming, that had been present previously, but not understood.

The crises phase that often immediately surrounds a diagnosis is strongly influenced by the sick person's perceptions of events as well as the physiological manifestations of the disease (Wellard, 1998). MS is typically a disease where the prognosis is very uncertain. It is also an illness that is highly stigmatised. At this stage of the Illness Onset Status Passage, respondents now faced both a great deal of uncertainty about their illness and how it might affect them (now that they knew they had it), as well as an overarching sense that MS was highly stigmatised. Goffman (1963) identified the realities of the spoiled identity or an undesired differentness, and Susman (1994, p. 16) showed stigma to be a persistent trait for an individual or group, which evokes negative or punitive responses. Stigma is an attribute that is deeply discrediting (Goffman, 1974) and is a concept which captures a relationship of devaluation rather than being a fixed attribute (Marshall, 1994). Stigma, especially when it relates to certain forms of illness such as MS, tends to define the bearer even though it may not be an obvious, observable trait and stigma carries with it a general sense of moral inferiority, culpability and depravity (Scott, 1974). Whenever stigma is present, the devaluing characteristic is so powerful that it can overshadow other traits and becomes the focus of personal evaluations (Saylor, 1990; Vickers, 2001). It is unsurprising that respondents felt so strongly, and negatively, about their newfound illness status, even before they knew much about it. Paradoxically, learning concrete (but incomplete) information about the existence of their illness might have explained their initial symptoms, but only seemed to make their experience worse.

Many respondents reacted to news of their changed illness status by feeling stigmatised, making frequent references to stereotypical images of wheelchairs and premature death. Miranda confirms:

MV: When you got diagnosed ... tell me how it affected you. What did you think?

Miranda: Well, the first thing you think of is a wheelchair.

Donna also raised the image of the wheelchair while referring to a famous Australian icon and former Olympic athlete, Betty Cuthbert, who also has MS and who is now significantly disabled as a result. Donna reported feeling especially stigmatised when having to share her new found "status" with her manager at work:

MV: Yes, and how did you feel before you went in to, first of all the manager's meeting, with your manager, and then secondly with your group of staff? How did you feel before you went in to tell your manager?

Donna: I was, at that point, from what I can remember, I was just thinking my life was over anyway . all I was thinking was, "Oh my God, Betty Cuthbert. I'll be in a wheelchair. Oh my God", you know?

Ned also referred to these pervasive and influential stigmatising, negative images:

MV: Did any images come in to your mind when she said MS?

Ned: I thought of death, to be honest, as the first thing, and then I thought wheelchairs. They were the two things that I thought of and that I still sort of, well not the death part, I still think of the wheelchairs obviously but I don't think of dying from it. But I do think of the disabilities.

Learning that one has a chronic and potentially disabling condition such as MS requires the bearer to learn the politics of being a chronically ill person in a world that is focussed on health and ability (Wellard, 1998). We have confirmation here that the status passage of the onset of MS is involuntary, undesirable and highly stigmatised. The undesirable nature of having MS is linked to stereotyped (and often flawed) images of people with MS, evident during initial reactions to diagnosis (Lewis, 1999). Even when respondents didn't know much about MS, what it was, or what a future with MS might hold for them, the images they articulated reflected their immediate fear of a future that they believed would inevitably lead to wheelchair use and/or premature death.

Historical cultural representations of disability are a brutal reminder of how societies concentrate on the defective or abnormal aspects of the bodies and minds of people with disability. Historical responses have included the display of people with deformities at village fairs, and the public display of inmates of "mad-houses" and institutions well into the seventeenth and eighteenth centuries (Barnes & Mercer, 2003). Such displays evolved into "freak shows" by the nineteenth centuries for the public's entertainment, and the development of the so-called "ugly laws" in the USA in the nineteenth and early part of the twentieth century, where social restrictions were placed on those whose physical appearance might offend or frighten "normal" people (Barnes & Mercer, 2003; Bogdan, 1996).

When respondents learned they had MS they felt stigmatised simply because they had MS, as reflected in their responses about wheelchairs and premature death. Felt stigma refers, first, to feeling shame associated with having a chronic illness (Scambler, 1984; Jacoby, 1994; Vickers, 2002). People feel ashamed fundamentally because they see having their stigmatising condition as amounting to an infringement against norms relating to identity or being (Scambler, 1984). It is stigma felt by the individual (Scambler, 1984; Jacoby, 1994; Nijhof, 1995). Unfortunately, nothing exists to protect people from the shame of a stigmatising condition (Kleinman, 1988). For respondents in this study, part of the Illness Onset Status Passage involved learning that they had MS, but this new and incomplete knowledge proclaimed for them, especially at this early stage, a reason to feel shame, a negative shift in identity, and fearful for the future, based on the stereotypical images of MS that continue to pervade our communities.

Living Thrownness

In the early period after diagnosis, especially, people with MS have to cope with the uncertainty that accompanies having a potentially very serious illness. In addition to the uncertainty associated with previously unfamiliar symptoms, the anxiety and distress present prior to diagnosis now carries over into life after diagnosis (Janssens et al, 2003). In a study of health-related quality of life, anxiety, depression, and distress (ie the intrusion and avoidance of thoughts and feelings that related to MS), it was found that recently diagnosed people with MS showed that, even where their level of disability was still relatively low, they evaluated their mental and physical health as being significantly poorer on all scales compared to control groups. They also reported significantly higher levels of anxiety (Janssens et al, 2003).

For people with MS, their Illness Onset Status Passage can result in a transition that places them in a "situation of thrownness" (Heidegger, 1927/1962; Weick, 1995, p. 44)--they are, as I describe it, Living Thrownness. This sense of "thrownness" commences, first, as a result of them having a lack of sufficient useful knowledge about their illness. For example, initially, because of his lack of knowledge about MS, Glen wasn't especially concerned when hearing that he had MS. Glen believed, initially, that the armamentarium of modern medical remedies would simply arrest the illness, and solve the problem. However, as knowledge of what may have lay ahead settled with him, Glen's concerns began to escalate:

MV: So you were 38, in the prime of your working life at that point. When he told that you had MS, what did you think?

Glen: I really didn't know what it was, you know. I thought, "Oh, yes, MS. OK, that's cool. He'll just give me few tablets, I'll take the tablets and well be sweet and off I'll go." Glen soon learned that his original ideas about having MS were not accurate. His responses indicated that he was in the middle of a complex situation, trying to disentangle what he knew from what he didn't, and then making, and revising, his provisional assumptions (Weick, 1995). Glen was Living Thrownness when he found himself unable to easily step back and reflect on his actions or understandings. He didn't have a stable or accurate representation of his new situation, and he didn't know whether any interpretation he might make was right or wrong. His comments show that he was part of the ongoing experience of his status passage and very much "in the middle of things" (Weick, 1995, p. 44). Glen's experience of Living Thrownness continued as he learned that having MS signalled a significant interruption to his ongoing life, especially for a man with a young family to support:

Glen: Well, I guess, because I didn't know what MS was, I probably thought it was like, you know, cancer sort of a thing; that, you know, you've got 3 years to live, or 6 months to live or something like that. But then he [the doctor] explained what it was and he explained you know, "You may finish up in a wheelchair, but that's only a small number of people in the overall", and you know, and he was very confident about the whole thing

MV: You were pretty shocked?

Glen: Yes, pretty shocked and, you know, I wondered where it's going to go because my wife was, at the time, was pregnant with our second bub, so we were going to have two children.

Ned also demonstrated that Living Thrownness was difficult initially, as he tried to take in what he had been told, having no real knowledge of what MS was at the time, or what having it might mean for himself, and those around him in the future:

Ned: Well, I think she [the doctor] was a bit shocked. I didn't really say anything after she told me, because I didn't really take it in. I couldn't really take it all in. I didn't really know what it was or how serious it was or whatever ... I mean the doctor had told me in the interview when she diagnosed me, "Oh, you've got this progressive decline in your leg and it will mean this. It could mean this; it could mean that." But I didn't really take it in, you know. That first time I was just getting over the shock of the first words that she said really.

Ned's Living Thrownness was evident in his confusion, lack of understanding, and shock. Negative emotions are likely to occur when an organised behavioural sequence (such as seeking a medical diagnosis of new symptoms) is interrupted unexpectedly and the interruption is interpreted as harmful or detrimental (Weick, 1995). In this case, what Ned had believed were weak leg muscles were, instead, primary progressive multiple sclerosis.

In the early phase after diagnosis of MS, people often experience substantial emotional burden. Up to fifty per cent of people in one study reported clinically relevant levels of either anxiety of stress in the period shortly after diagnosis (Janssens et al, 2003). The Illness Onset Status Passage would be likely to impact one's sense of self, self-efficacy, and self-esteem. Learning the diagnosis of a chronic, potentially disabling disease invokes coping mechanisms in direct response to their perceived new experience of Living Thrownness. There are often significant psychological costs associated with news of current and future disability, many of which are based on the able-bodied assumptions of what that might be like (Barnes & Mercer, 2003). Learning that one has a serious, chronic illness is known to demoralise, stigmatise and threaten other life passages (for example career paths) in that person's life (Glaser & Strauss, 1971, pp. 114-115). Donna shared her Living Thrownness with regard to the possibility of cognitive losses that may have arisen in the future as a result of the MS--something she had not previously considered:

Donna: [He said:] "Have you had any cognitive issues?" and I am like, "What? What?" And I got mad at myself because earlier on I would've read that the MS affects your cognitive ability, and can affect your cognitive skills. Of course it could, because it's anywhere in your brain. But that was a piece of information that I feel I chose to ignore. Like, you read something and if it's so appalling to you, you don't remember it? . And that, that killed me, that nearly killed me, really. The thought of me losing my cognitive ability, and cognitive skills, like that is absolutely sickening.

Coping mechanisms include the strategies people adopt as preferred choices among the social, financial and emotional resources that might be available to them (Barnes & Mercer, 2003). Coping with a new diagnosis might come in the form of denial for some. Individuals will often eschew change, whether it is with regard to the role, identity, or self changes (Ashforth et al, 2000). Donna was avoiding thinking about the possibility of cognitive changes that can accompany having MS. Carla was another respondent whose experience of diagnosis was met with minimization and denial:

MV: How did you feel [after your diagnosis] when you went home and what happened after that? Carla: I think, I think, I was in denial for a long time. You know oh -, MV: What sort of things do you mean?

Carla: Just, "Keep on going. Just push yourself and just, just keep doing what you've always done and you'll be alright." MV: Right ok. Did you talk to your husband or your family?

Carla: Oh, yes, yes, yes. ... I, I didn't actually tell people outside the family. I left that up to them. If anyone noticed I was sort of walking funny or doing anything funny, or amongst the family, they were the ones that actually said the words out loud. I couldn't, I couldn't actually say it.

MV: Tell me why you couldn't? Tell me, did you feel uncomfortable? Did you feel embarrassed, afraid?

Carla: I wasn't embarrassed. More afraid probably. I just felt like I couldn't, I just couldn't say it ... I think I was scared more because, I didn't know anything. (Carla)

Two coping tasks are relevant to all life transitions: The management of strain and associated cognitive tasks. The management of strain involves the invocation of coping styles that protect the person's self-esteem and allow him or her to manage the strain created by the transition. This might include both proactive and reactive strategies, including shielding the self, seeking social support, and withdrawing from the problem (Liddle et al, 2004). Both Carla and Donna tried to cope with their Living Thrownness by minimising and denying what was happening to them during this stage of their Illness Onset Status Passage.

CONCLUSION

It is the political task of the social scientist--as of any liberal educator--continually to translate personal troubles into public issues and public issues into the terms of their human meaning for a variety of individuals. It is his [sic] task to display in his work--and, as an educator, in his life as well--this kind of sociological imagination (Mills, 1959; cited in Aptheker, 1960, p. 99).

A chronic illness like MS is unpredictable, insidious, episodic and liable to drag on for years, defying efforts by the medical profession to control it (Curtin & Lubkin, 1990; Register, 1987). It is also frequently associated with a descendent life trajectory as a result of the disease progress and/or associated stigma (Vickers, 2001). Many authors have commented on this, describing chronic illness variously as a challenge, an enemy (Lipowski, 1970-1971; Lazarus & Folkman, 1984), a process (Freidson, 1970) and a "way of life" (Schmidt, 1989, p. 24). Having MS encompasses all of these outcomes and trajectories (Donoghue & Siegel, 1992).

I commenced this article by highlighting the transition that a person with MS goes through when they transition from being a person-without-MS to being a person-with-MS. This is presented here as a form of status passage (Glaser & Strauss, 1971), specifically as the Illness Onset Status Passage. This status passage involves the onset of a disease that can substantially interfere with daily life, family activities, social and working lives, and the emotional well-being and quality of life of those impacted (Janssens et al, 2003). We know people with MS experience a substantial emotional burden in the early phase after diagnosis, many having clinically high levels of anxiety and distress requiring the attention of health care professionals to provide psychosocial support (Janssens et al, 2003). I seek to highlight the lived experience of the Illness Onset Status Passage for people with MS in an effort to display the peculiar troubles and lived experiences that surround that, and to translate them into public issues.

The Illness Onset Status Passage for people with MS commences as An Unknown Passage. This Unknown Passage can be experienced through what are believed to be "Harmless" Symptoms or, conversely, as Alarming Symptoms. In response to these symptoms, respondents all eventually reported seeking a diagnosis, which led to their experience of Incomplete Knowledge Lived as Felt Stigma. Then, respondents' Illness Onset Status Passage shifted to an experience of Living Thrownness, as they tried to cope with the turmoil brought to their lives. Recognising what it might be like for people with MS to live this Illness Onset Status Passage, especially realising that much of the passage is experienced with incomplete or incorrect knowledge of the disease, or no knowledge at all, is important for care givers to understand.

Better understanding of this aspect of a changed life with MS is important for various stakeholders in this picture. First, people newly diagnosed with MS may benefit from a better understanding at the outset of what is happening to them during the illness onset transition, enabling them to more pro-actively participate in the management and understanding of their condition as a result of being better informed. Second, carers, friends and family of people with MS will also benefit by understanding better the lived experience that accompanies having MS, especially during the confusing and often frightening period of illness onset. MS is an especially confounding disease, especially from the perspective of those looking on. Many of the symptoms cannot be seen, and may even sound strange, even fanciful, when described to a person who hasn't experienced them. Carers, family and friends will be able to provide more social, emotional and physical support if they are better informed as to what the illness onset transition experience might be like (or might have been like), including better understanding of the potentially diverse and wide-ranging symptoms that can occur for the people for which they are caring, as well as the psychological and emotional challenges that may accompany them.

Third, health care professionals will also benefit immensely from having a better understanding of the lived experience of the onset of MS, especially those early stages prior to diagnosis. Indeed, better understanding on the part of health care professionals (such as nurses, counsellors and general medical practitioners) of the illness onset experience for people with MS, may well lead to a more expeditious diagnosis, as well as more sensitive and responsive treatment and symptom management. Health care professionals in interaction with people experiencing what might be the onset of MS (and who may be explaining some rather strange and varied symptoms) would benefit immensely from being directed to the correct medical and diagnostic professionals to assist in gaining a swift, accurate diagnosis. Better information in this area would enable health care professionals to maintain an increased sensitivity to the impact and confusion that potentially surrounds those early experiences with a disease such as MS, offering them an ability to provide improved support, care and appropriate service provision for people with MS.

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MARGARET H. VICKERS

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(1) I consider the journey to diagnosis to be a separate, and notable, passage that has been discussed elsewhere (eg Wellard, 1998; Vickers, 2001). I choose not to enmesh the particularities of the diagnostic journey as part of the Illness Onset Status Passage, because I regard the two passages as quite distinct experiences, not to be confused.

Table 1
Living the Illness Onset Status Passage

1. An Unknown Passage:
   --Lived as "Harmless" Symptoms
   --Lived as Alarming Symptoms

2. Incomplete Knowledge Lived as Felt Stigma

3. Living Thrownness