Antenarratives to inform health care research: exploring workplace illness disclosure for people with multiple sclerosis (MS).

Vickers, Margaret H.

INTRODUCTION

Antenarratives to Inform Health Care Professionals

The purpose of this manuscript is to explore the use of antenarratives (Boje, 2001) as a valuable means of presenting health care research to health care professionals. I use antenarratives here to draw attention to crucial aspects of the lived experience of having Multiple Sclerosis (MS), especially as it relates to the self-disclosure of that illness at work. People with disability, especially those with MS, are substantially more likely to be unemployed and/or underemployed than people without disability, and these disadvantages are not simply due to individual functional limitations (Lonsdale, 1986; Barnes, 1991; Barnes et al, 1998; Barnes, 2000; Vickers, 2008; 2009c). Despite disability-related legislation in a number of countries--for example, the USA, the UK and Australia--there have been no significant improvements in employment or labour force participation rates for people with disability (Hernandez et al, 2000; Hernandez et al, 2007a; Hernandez et al, 2007b; Hernandez et al, 2008; Shrey & Hursh, 1999; Smith & Twomey, 2002; BCA, 2007; Barnes, 2000). In the United States, for example, while it has been over 15 years since the passage of the Americans with Disabilities Act and nearly five years since the passage of the Ticket to Work Act, federal and state policy makers still struggle to find solutions addressing the needs of working age adults with disabling conditions and illness (Bolin, 2007).

The retention of employment for people with MS is especially problematic; lower than figures for other people with disability in general, and lower than would be expected even for people with very severe physical disability (Roessler & Rumrill, 1994; Vickers, 2009c). While more than 90 per cent of people with MS have employment histories, with most (60 per cent) still working at the time of diagnosis (La Rocca, 1995; Rumrill et al, 2000), as few as 25 or 30 per cent of people with MS are able to retain employment as their illness progresses (Jackson & Quaal, 1991; Jongbloed, 1998; Roessler & Rumrill, 1994)--and people with MS who leave work are unlikely to return (Rumrill et al, 2000; Vickers, 2008; Vickers, 2009c). People with MS are being disadvantaged more in employment than people with non-MS-related disability, in many cases because of the highly stigmatised nature of MS and the flawed assumptions of employers, rather than actual levels of disability (Vickers, 2009c).

Health care support and services for people with chronic illness are often provided in communities through highly discretionary (even arbitrary) processes (Phillips et al, 2008). One way to improve such processes might be the provision of more useful and high quality information to health care providers, both in the clinical setting and for those developing policy. Improving the support of patients and their families through humanistic and empathic health care provision can be facilitated by better communication of the illness experience and, especially, the issues of concern to those living and working with a chronic and disabling condition such as MS. Humanism in health care management entails serving patients and their families, health care organizations, and the community in which recipients of health care reside (Kilpatrick, 2009). Humanistic health care strives to create environments that support and uplift patients and their families (Kilpatrick, 2009) helping them cope with life and work. Empathic engagement in health care and human services is beneficial, not only to the patients receiving care and support, but for health care providers, administrators, managers, health care institutions and the public at large (Hojat, 2009).

Understanding the experiences, concerns and perspectives of a person with a chronic illness or disability, such as MS, and being able to communicate and respond to this understanding is crucial to improving patient outcomes, both health- and employment-related. Enhancing this empathic engagement in patient care is considered by some to be a critical component of health care education that will assist in achieving humanistic health care (Hojat, 2009). One area where the requirement for useful insights pertaining to the needs of those with chronic illness, such as MS, is that relating to the question of illness disclosure, especially as it pertains to the employment context.

The ability of health care professionals to provide sensitive, informed responses that, rather than seeking to offer "right" advice or a prescriptive solution, highlight the many diverse dilemmas and complexities that will inevitably arise for a person with chronic illness as they progress through their life and work, would be one such valuable humanistic health care outcome. The question of illness disclosure, especially at work, is likely to be something health care professionals would frequently be asked about, especially by the newly diagnosed. It is also an area where the wrong choice might have significant and lasting deleterious outcomes for the person with MS or any other chronic illness, especially in relation to their continued employment. Self-disclosure of illness is a major and complex decision (Vickers, 1997; 2001) with no wrong or right answers, and a myriad of potentially problematic mediating and contextual factors. In this paper I endeavour, via the use of antenarratives, to expose some of these complexities and conundrums, and in a manner that might more usefully inform health care professionals consulted by people with MS about the issues and potentialities that require their most careful attention and well considered choices.

Antenarratives to Interrogate Illness Experience

Antenarratives (Boje, 2001) enable researchers to share the bits and pieces, snapshots, grabs and glimpses of respondent lived experiences that are not bounded by more traditional narrative theory modes of research analysis and presentation. The antenarrative chunks of life shared here support some of the central posits of qualitative research: they are idiographic, that is, focusing on individual experience, more than the general; they attempt to offer some interpretive understanding, rather than a complete, firm, bounded, theoretical explanation; and they rely more on the poetic, than the traditional, linear, even scientific modes of writing. They also offer a useful leaning towards the cognitive and discursive functions of language while also recognising and enabling the emotional and the evocative (Freeman, 2004: 63). I present these antenarratives to depict aspects, perspectives and issues that surround the lived experience of whether or not one should disclose that one has MS at one's place of work, as well as considering why, how and when such a disclosure might, or might not, take place.

Antenarratives (Boje, 2001: 2) allow for the presentation of fragmented, non-linear, incoherent, collective, unplotted, pre-narrative and speculative texts that sometimes manifest during the telling of lives with disability, especially for those with MS. Antenarratives allow for a reading of texts that allows for an improper storytelling, a "wager" even as to that experience, and they are Boje's response to the crisis of narrative method in modernity; that is, what to do with the non-linear, almost living storytelling that is fragmented and polyphonic (many voiced). Boje's (2001) response was to stretch the traditional boundaries of storytelling by using antenarrative methods for the analysis of stories that may be too unconstructed and fragmented to be analysed with traditional approaches. I propose that the use of antenarratives may enable health care professionals, especially disability care providers and others concerned with the observable differences in employment rates between working age adults with disability and those without, to learn more about the problems experienced by those with disability at work, especially those with MS.

For some time, postmodern researchers have been less concerned with the generalisability of findings than with the degree to which the qualitative data penetrates and shares the essence of the human experience (Denzin, 1997; Rolfe, 2002; Furman et al, 2006). Under the auspices of postmodernism, the nature of texts and their status as representations of social reality may be legitimately treated as unbounded, fragmented and uncertain. Recognising the arbitrary nature of traditional storied representations, enabled me to transgress cherished boundaries and to explore alternatives (Richardson, 1994; Coffee & Atkinson, 1996). Postmodern researchers have long recognised the value of studying the lived, subjective experience of individuals and groups (Alsop, 2002; Furman et al, 2006), and have also grasped that it is legitimate to doubt traditional paradigmatic and methodological boundaries (Richardson, 1994). A postmodernist orientation towards the stories shared here allowed me to seek, uncover, interpret and to attempt to understand the life-world of people with MS--with all of their multiplicitous qualities. I had learned to value and accept multiplicity and fragmentation in people's lives and experience with illness, especially with MS.

The texts presented are also "antenarratives" because they often represented aspects of stories that came "before the narrative". "Ante" combined with "narrative" means earlier than narrative. Antenarratives enable the avoidance of the more traditional narrative requirement for taxonomy, theme, and coherence that would normally require a beginning, middle and end, and a knowable plot (Boje, 2001). Recognising the vagaries of narratives and narrative analysis enables the legitimate recognition and imagination of a life that is essentially formless (Freeman, 2004). The use of more traditional narrative analysis, as seen from this perspective, becomes an imposition of structure on a formless life. An important part of these respondents' stories was a loss of certainty as to what was happening, either at a bodily, emotional or social level. The ante-narratives presented are intended to offer insights into their speculative, un-knowable and fragmented lives. Readers will see that the people depicted were in the middle of things, living their life with MS, while still continuing to create their storied lives. Antenarratives vivying the experience of illness disclosure at work were selected from a flow of lived experience. As Boje (2001) confirms, they go beyond the closure required of traditional narrative (Boje, 2001).

A QUALITATIVE RESEARCH PROJECT

The research question for this qualitative research project was: What is life and work really like for a person with MS? I wanted to share some of the unspoken and, hitherto, largely unexamined physical, psychological, social, careerist, relational, personal and inter-personal life experiences and meanings for people living and working with MS. I took a critical perspective to the research that had rarely been adopted in previous MS-related research, with many studies, in my view, failing to capture the nuanced realities of daily life and work for a person with MS, especially as seen through their eyes (Vickers, 2008; Vickers, 2009a; Vickers, 2009b; Vickers, 2009c).

I undertook in-depth phenomenological interviews with 20 respondents who had MS. Interviews ranged from 1.5 hours to 3 hours in length and were guided by focus areas that shifted as the interviews progressed. Sixteen woman and four men participated in the interviews, which was, coincidentally, a reasonable representation of the sex breakdown of the MS population worldwide, currently around 3:1. Respondent ages ranged from 28 to 65 years, with a mean age of 47 years. In total, I accrued in excess of 43 hours of interview data and 35 tapes transcribed verbatim, which totalled 1,222 pages of text and 335, 258 words for analysis. I included respondents who were still working in different work roles and industries, as well as those who had ceased working altogether but had worked since their diagnosis. The study was approved by the University of Western Sydney Human Ethics Review Committee and the Multiple Sclerosis Society of New South Wales (Vickers, 2008; Vickers, 2009c).

Finally, I disclose to readers that, at the time of writing, I had had MS myself for over 25 years. I was undertaking this research as an "insider" to the phenomenon under review. To that end, and making a variation on an approach used in Erikson's (1994) work, I have inserted my own antenarrative responses to the respondents' texts, written as a person with MS and an experienced researcher in the field. When doing this research, it was not possible to remove myself from this study or to ignore my responses to it; instead, I chose to deliberately inject my own antenarrative responses into this presentation, representing the views of one who has researched, studied and personally grappled with this same issue for years.

ANTENARRATIVES AND ILLNESS DISCLOSURE

Boje (2001) offered eight means of textual analyses that might be given an antenarrative reading. Here, I will focus on Boje's theory of theme analysis (Boje, 2001: 122 ff) in my reading of the antenarratives presented below. An antenarrative approach to theme analysis defines what moves in-between and outside the usual taxonomic classifications. According to Boje, taxonomy cells in traditional narrative theory become little theme cages to entrap stories. The usual narrative theme analysis becomes a foreclosure on storytelling and debases the living exchange. An antenarrative analysis, on the other hand, highlights the storytelling moves and flows beyond the usual narrative theme limits. An antenarrative analysis goes beyond the traditional theme, stepping outside of the usual containment to engage with the fragmentation and ongoing nature of living that is evident in the experiences being shared (Boje, 2001). When interrogating the question of illness disclosure, with all its complexities and nuances, such an approach seemed very useful.

Antenarrative analysis also concentrates on what might lie in between the boxes (or themes), acknowledging and foregrounding the flows between the themes, and noting the intertextual, multi-layered and embedded nature of stories, as well as how they might effectively (if incompletely) reflect the life of the storyteller (Boje, 2001: 124). The respondents in this study, and I as researcher and inquisitor, were picking out fragments of lives and stories (to tell, listen to, share, and relive). The stories were woven into and out of our conversations during the interviews, as well as in my subsequent, post-interview responses to what they had said. Presented below are bits of stories that exemplify what a messy choice the question of disclosure of MS at work can be. The important bits and pieces of the stories can be found at once in the centre of the story, as well as tracing through the story, remaining at the margins of the story, or residing alongside of it. The bits and pieces are evident in both what is said, and what is not said, by them and me.

Respondents tried to "make sense" (Weick, 1995) of their experience, lives, illness and choices as they were talking with me and thinking of their experiences, concerns and expectations. Below I have gathered story fragments to highlight aspects of the lived experience surrounding illness disclosure, rather than offering a complete and saturated "theme" that would imply the possibility of a correspondingly modernist solution. They are, deliberately, bits and pieces of experience that have been shared, contemplated, discussed, relived and remembered by respondents, and responded to by me. Following Boje (2001), I wanted to interpret what was said, as well as what might have been left out, what was remaining on the margins, and what was being thought about during the storytelling, perhaps for the first time, or perhaps not. I was, as Boje (2001: 133) described, focused on what was in these texts, as well as what was between and around them. Such an analysis vivifies the polysemous quality of these texts (ie rich in multiple meaning and interpretations) (Boje, 2001: 133).

The question of disclosure for most people with MS, and indeed any chronic or disabling illness, is a complex and vexed one, offering many decision points before, during and after the point of diagnosis (Vickers, 1997, 2001). Such choices can have significant consequences as a result of the associated spoiled identity (Goffman, 1963) that may accompany a diagnosis of MS (Vickers, 1997; Joachim & Acorn, 2000; Grytten & Maseide, 2005; Gryytten & Maseide, 2006). (1) What is important to note about illness self-disclosure is that once the disclosure is made, it is almost impossible to take the information back. Unfortunately, many people with chronic illness make their disclosure decisions when they are "disclosure ignorant"; that is, they make critical, even life-altering, disclosure choices prior to being fully informed about or having carefully considered what the consequences of their disclosure actions might be (Vickers, 1997, 2001). Goffman (1963) highlighted the continuing difficulties surrounding the choice of disclosure of any potentially stigmatising trait:

To display or not to display; to tell or not to tell; to let on or not to let on; to lie or not to lie; and, in each case, to whom, how, when and where (Goffman 1963: 57).

Some respondents were better able to make sense of, and articulate, their experiences. Some texts are clear and lucid; some are chaotic and ambivalent. This analysis, rather than providing a coherent and complete analysis of a theme in the usual way, offers a means to explore the questions and challenges of lived experience alongside the gaps and exclusions, and the ebb and flow. On Boje's advice, I have not shared whole stories, nor claimed universal logic or complete understanding. Instead, the thoughts, contemplations, meanings and understandings, along with my responses, are shared in a manner that, it is hoped, will inform health care professionals about what issues surrounding the question of disclosure might be brought to the foreground for consideration by those seeking help, rather than offering concrete answers and advice.

Carol Is Losing Her Mind

Carol ran her own design business. She informed me that she had deliberately shied away from disclosing her MS to colleagues because of her fears about such a disclosure being detrimental to her business, which she had taken years to build up. Her business was located in a very small, close-knit industry, where many of her colleagues and competitors knew one another well. Because of this, and because of her unspoken but inferred belief in the stigmatising nature of MS, Carol reported that her professional reputation as a competent provider of services would be jeopardised if word of her having MS went around. She shared her disappointment with one of her colleagues' reactions to Carol's disclosure of MS:

Carol: I told my best client; my number one best client I've ever had, not that long after I got diagnosed. And I've known this woman forever. We used to work together and then she became a client. And since I've told her, she's never given me any work.

What might also reside on the margins, unspoken, are Carol's fears for her ability to continue as a professional in her chosen field, with others around her making decisions on her behalf, as this woman did, as to her capacities, or otherwise, as a capable professional. One of the biggest determinants of disclosure is the level of trust that the person making (or not making) a disclosure has towards the person they are disclosing to (Crispin, 1993: 300). In just a few lines, we see that Carol trusted the woman she disclosed the MS to; that Carol had believed that they had been friends as well as colleagues. However, Carol's concerns go beyond hurt feelings. She has twice referred to her belief in the negative impact the knowledge of her having MS has had, and might have in the future, especially as it pertains to her business success:

Carol: So, I was very hurt about that, because she's actually a friend as well as a client ... I was thinking, "If all my clients react like this, I'll be out of business".

Carol revealed both hurt and disappointment in this woman's response at a number of levels: (1) that the woman betrayed a confidence; (2) that she did not support Carol as Carol expected a friend and close colleague might have done; (3) that she showed that she no longer trusted in Carol's ability as a competent professional, as evidenced by her no longer giving Carol work; and, (4) Carol's "friend" demonstrated that she did not understand either the gravity or the sensitivity of Carol's MS disclosure. Carol then refers to her own "paranoia" surrounding news of her MS becoming widespread in her industry, signalling the depth of her fear:

Carol: I've been paranoid, quite paranoid, about it coming out.

Tangential to such concerns are Carol's likely concerns with regard to her ability to support herself as a person with a disability in the future, as well as the disclosure and subsequent stigma of the MS hampering her efforts to secure her financial future. Carol's story becomes inconsistent, even ambivalent, as she strives to make sense of her experience and her fears for the future. Carol even remarks that she is "losing her mind" and that she "can't deal with this", such is the gravity of the situation from her perspective.

Carol: I was feeling that despite my best efforts of doing everything I'm supposed to do, I can't control people finding out. Because people who have promised me that they won't, go and say something . And my best friend told someone, and I just couldn't believe it when she told me she'd told this guy, who's in my field. He's one of my competitors, right? And I just said, "You what?" And she said, "Oh look, [name of friend] can be trusted, because he's my husband's cousin". And I thought, "I'm losing my mind. I can't deal with this!"

MV's Response: Carol's "paranoia" seemed completely justified to me. I should emphasise that her reported reactions and fears followed her negative experience with illness self-disclosure to her client and "friend". By the time I met with her, this had already happened: she had told a single person, she had lost business as a result, she had lost a friend, and she was now terrified that her business would be negatively affected as a result of the word "going around" in a very tight-knit industry. I remember how guarded she was when I went to her work premises for the interviews, how quickly and quietly I was shepherded into her rooms and the door firmly closed. I didn't find her response to what had happened surprising at all. I shared her fears that the future of her business might have been in jeopardy.

What continues to haunt me as the years pass, even from those closest to me but also from those around me at work, is the lack of awareness, understanding and sensitivity that others have about an illness like MS. I still also, regularly, grapple with the question of disclosure in my professional space. For instance, I have been asked to do a guest lecture on phenomenology. As I have done much of my phenomenological work as an insider with chronic illness exploring the lived experiences of others with chronic illness, how can I discuss what I do as a researcher without declaring my illness status? While most of my colleagues know I have MS, what will the students I am lecturing to think when they find out? How will that influence their learning? Will they be completely distracted, appalled? Will they "feel sorry for me"? Will they still respect me as an expert, more or less? How will I weave it into the lecture, and at what point? What will the inviting Professor (who I don't think knows I have MS, but I'm not really sure) think? After 25 years with MS, I am still not sure of how best to proceed. And it doesn't ever get any easier to actually say such a stigmatising thing about yourself in front of a group of strangers.

Jason Doesn't Take His Cane

Jason reported that, shortly after disclosing his diagnosis of MS at his former place of employment, he was layed off. Such an experience, unsurprisingly, influenced his thinking about the disclosure of his MS in the future:

MV: You said when you were working in that first place and things started to get very uncomfortable after you told them about your MS. Jason: Yes.

MV: And you suggested that you wouldn't have handled things the same. Would you tell? What would you do differently?

Jason: I initially wouldn't have disclosed at the time that I did. I've looked at it from the point of view of an employer and from the point of view of an employee. And, as an employer [pause], if someone had come to me ... and said, "I've got MS," I'm thinking, and I have to be honest, how empathic would I have been? Because I'd like to think I would have been, but I'd also know that I'm paid by my company and therefore by the shareholders of that company, whoever those shareholders are, to make money . And so knowing that and knowing the kind of company that they were, I wouldn't have disclosed. Because, at the end of the day, they might be nice people between six o'clock at night and eight o'clock in the morning, but between eight in the morning and six at night, they're my boss. They've got to make money, and that's what it's all about. So, I don't think I would disclose necessarily.

Jason speaks here of what he characterizes as the schizophrenic requirements organizations have of workers that can concurrently be "nice people" outside of business hours but during the working day, the organisation's focus on "making money" becomes paramount, influencing people's behaviours, actions and decisions at work, including perhaps requiring them to be discriminatory towards those who disclose that they have a stigmatizing and potentially debilitating illness such as MS.

MV's Response: I recall the first time (but certainly not the last) when I came face to face with what I have now come to consider (based on my personal experience with MS and around 15 years of research) the most likely reaction of employers and managers when faced with the "problem" (and I am sure this is how most of them see it) of having an employee with MS. I had been working in an industry that was highly competitive, performance oriented and well-paid. After completion of some post graduate study that made me, I thought, even more employable, I made enquiries to return to a place of work which had furnished me with a glowing written reference, and where I had been very successful in the role in which I was employed.

One thing had changed while I completed my studies: I was diagnosed with MS. While I had actually had the disease for at least 8 years prior to diagnosis, I hadn't known it and nor did anyone else. Now I knew and I had not been thoughtful about who I had shared the news with. I deduced that the "word had gotten around" about my new illness status, without me being given any opportunity to put my case, explain my reality and capacity, or allay anyone's fears. I quickly formed the view that flawed assumptions were being made on the part of my previous employer regarding my future capacity in such a role. There was a nil response to my application. Silence. It was the first time--but not the last--that I felt outrage as to what I considered to be classic disability discrimination and a complete injustice. It was also the first time--and also not the last--that I would realise that people, especially at work, might choose not to support me (as I had naively previously assumed they would) but, instead, respond harshly, cruelly, negatively and unreasonably to knowledge that I had MS.

Jason's next antenarrative also shows him contemplating his disclosure decision, and after he had researched his rights as an employee with a disability. He goes on to reveal what he did differently when trying to find another job:

MV: When you went for the interview for that position [the job he currently has], did you disclose? Had you disclosed on your CV, or did you disclose during the interview?

Jason: I didn't disclose that I had MS.

MV: What did you say?

Jason: I said that I had a disability that no longer allowed me to work in the field I had done previously. So essentially I said--because I'd learned that they're not allowed to ask me, they can only ask me about what I write down. So if I open a door, they can push it open. But what they can't do is say, "Oh, yes. You say you've got a disability. So what is your disability?" They can't ask me that.

Evident in Jason's antenarrative is his belief that employers are not legally entitled (and so won't) ask him directly about his disability. This signalled to me that he had not only been researching and making sense of his past experience of bullying and layoff from his previous workplace (See Vickers, 2009c), he had been contemplating the ramifications of his past disclosure choices. Reading between the lines, Jason may have informed himself of his employment rights, but his antenarrative still vivifies his belief that employers can and do circumvent these rights if they choose to. The result was that Jason chose not to disclose that he had MS with his new employer, especially during the recruitment process. Instead, he told these potential employers that he "had a disability", but didn't say what it was. Such actions also reveal his view of the potentially stigmatizing nature of MS, especially when compared to other disabilities, as well as his fears of potentially being discriminated against.

MV's Response: I was, unfortunately, not surprised at all when Jason reported at length to me the blatant discrimination that had taken place at his former place of work. It was classic stuff: immediately after he blurted out his diagnosis was his employer's initial proclamation of all the support he would need. Sadly, this was closely followed by unreasonable demands, discrimination and bullying aimed to push him out. His work targets were raised; he was asked to take on more and more responsibilities; and, in the face of that, his work performance was frequently and formally scrutinized, recorded and critiqued at length. It is very hard for anyone to survive such tactics, and he didn't.

So, it was with great interest that I explored how he had managed to get work again. His disability, while largely invisible, was significant in terms of him being able to get another job. He had impressed upon me his difficulties with being legally blind, and of being unable to walk without a cane. I wanted to know more so I could share his secret with others. What I learned was that Jason quite deliberately didn't inform his new employer of the nature of his disability. When he applied for his job at the call centre, he didn't tell them he couldn't really see, and he didn't take his cane (used for balance while walking) to the interview. Once he got the job, he also didn't tell anyone at work of the nature of his disability, preferring to figure out himself how he would go about doing his job. I was impressed.

Below, Jason notes that his disability was not visible to others, offering another an important component of disclosure choice:

MV: And what did you say to them? "I have visual problems"?

Jason: No, I didn't. [Slight pause] And I didn't, at that time when I went for the interview. I didn't even take my cane.

MV: Right, was that a deliberate choice?

Jason: Yes. I have said that I have a disability, and ... because, like you, I don't look like I have a disability. But, you know, I and you, very much do, and we know it, and we're the only people that know exactly how significant our disabilities are.

MV's Response: Jason points out here that I also don't appear to have any disability, but after having MS for over 25 years, I certainly can confirm that I do, and that it does impact my life and work in numerous ways, none of which are really observable to those around me. As Jason confirms, those with unseen disability have a greater span of choices regarding illness disclosure, but the other side of the coin is that they also battle greater potential for flawed assumptions, misunderstandings, mistreatment and lack of support with regards to their unseen disability, because those around them can't understand what is going on.

Deliberately, Jason states that he didn't take his cane to the job interview, signifying (but remaining unstated) that he didn't want his potential employers to infer or guess exactly what might have been wrong with him, preferring to keep the knowledge of his "disability" to himself, especially prior to securing the job. Jason's antenarrative also points to the questions and choices for people with unseen disability that differ for those with disabilities that can be seen. For anyone meeting Jason for the first time, they would not have known what was wrong with him because his disability could not be seen. Jason chose to use the unseen nature of his disability to hide that he had MS from his future employer during the recruitment process--a choice that seems to have served him well.

Janet Is Independent

Janet: I only work ... three nights a week.

MV: Oh, right ok. So this [the medical tests] just happened to fit in around it?

Janet: Yes, to fit in. See it's like, I come off on Monday. I don't have to go back until Friday.

MV: Right, ok, so this all happened [referring to various MS symptoms and subsequent medical tests]. So, you didn't have to take time off work at that point. Right?

Janet: Yes, that's right, yes. But, once I went to see him [the doctor] on Friday, because I'm off on Monday until Friday night. So I can arrange all these things during my days off without informing the hospital [where she worked].

MV: Without telling anyone.

Janet: Yes.

MV: Did you do that deliberately? Did you not want to tell the hospital at that point?

Janet: No, no [she didn't want to tell them]. Because until they tell me something concrete [about her diagnosis].

MV: Yes, you didn't want to say anything.

Janet: I didn't want to say anything. I couldn't say, "Oh, I went to the hospital, and ... they tell me I might have a brain tumour". And, and it was just that, everybody, I didn't even tell a friend or anything like that. I didn't, I just want to find out myself.

MV: You just wanted to find out.

Janet: Yes. I guess it was because also, that I have independence, living on my own, surviving for 30 years. You know, I never tell them. I never tell them even I have Lupus. I never tell them that I have this eye problem because I recover, you know, twice already. It never affected my work . It's not that I deliberately didn't want to tell them, I just thought ah -,

MV: Did you think that would be a problem if you told them that you had Lupus?

Janet: Did I, at that time? [pause] I never, I don't know why I never even [told them]. It might be that, you know, it is a common disease. It's best not to tell them, maybe. And it doesn't affect me in any way. Why do I tell them?

Janet reported that she didn't tell anyone of her diagnostic tests, at a time when her MS first began to manifest. At the time of her early symptoms, Janet believed that she might have had brain cancer. She didn't tell her employer, or anyone else in her life, about the diagnostic tests she was having, preferring to handle the situation on her own, especially until such time as she knew what was happening to her. Janet's antenarrative raises many questions that trace through her experience of illness disclosure, not just about her choice not to disclose the MS to her employer (and others) when she eventually learned about it, but how her words reveal other important aspects of her identity: her preference for independence; evidence of how she believes knowledge of her illness existence might transform her life in a highly individualistic society; her beliefs about the support she may or may not have received if she did disclose to others; and, her ability and choice to hide her illness diagnosis journey from her employer, for many months, given that hers was also an unseen disability.

MV's Response: I am always impressed by people who, even before they learn of a diagnosis of a serious illness, have the where-with-all to keep all those tests and doctor's visits and confusion to themselves, especially if they are still going off to work at the time. Janet's insight may have been aided by the fact that she worked as a health care professional herself and had, no-doubt, witnessed people dealing with the ups and downs of chronic illness over many years.

You see, what often happens is that people have to take time out of their working day to make an appointment to see a doctor. And often, especially with chronic illnesses that offer vague and uncertain symptoms early on, both the illness onset journey and the diagnostic journey can be protracted and confusing for all concerned. It is not uncommon for people with MS (including myself) to wait many years for a diagnosis that will eventually explain a myriad of unusual bodily manifestations that, over time, seemed diverse and unrelated. And over that same period, there might be inevitable conversations with colleagues at the coffee machine, requests to managers for time away from one's desk for yet another specialist appointment and, then, when the news finally comes, it might be blurted out in a rush of emotion that will inevitably surround the shock of such a life-changing piece of information, without the person giving such a self-disclosure the thought it deserves, especially when it comes to one's future work.

My experience was along these lines. I felt, for reasons I didn't fully understand at the time, quite ashamed, initially, of my diagnosis of MS. I felt myself blush when I told anyone but I didn't quite know why. My subsequent actions, at the time, were based on me subsequently deciding that I had nothing to be ashamed of and, thus, nothing to hide and my initial disclosure choices were informed by this turmoil. So, I told people, lots of them. I convinced myself at the time that it was dishonest not to tell people. What I hadn't understood was that my visceral reaction of shame and embarrassment was based on a pretty accurate gut reaction to just how stigmatizing an illness MS was, even if I wasn't able to articulate or identify this back then - and it was my experience of being "disclosure ignorant".

Ned Needs To Prove Himself

Ned: I think they would be all right about it now. I was a bit worried like in 97, 98 [when he was first diagnosed] because I was, I'd only just gone to the school and I was just an ordinary teacher, who hadn't proved themselves or whatever. But now I'm pretty competent. You know, I've been promoted and I'm a House Master now. So it's quite a senior position and I think I've done it well enough over the last couple of years for people to look at me and say, "Oh, well, he can do the job, no matter if he's walking around with a stick or not". So I feel a little bit more confident now than I would've done five years ago. But I still don't like the thought of it. Because it would mean, probably would mean some form of disclosure. And I mean, you know, it's all right telling your boss, who would presumably keep it confidential but I mean you've got to decide whether you tell your colleagues as well, and then the kids.

Ned, a high school teacher, also chose not to disclose his MS at the school where he worked. At the time of his diagnosis, Ned stated that he felt he hadn't "proven himself sufficiently to his employers, offering his view that his employer didn't yet have sufficient confidence in him to support him if news of his MS was shared with them. Ned signalled his view that support from his employer would be more likely now, several years on, since he had been promoted and had given several years of good service--but he was still not certain. Reading around his stated position, we can see that Ned still has concerns about disclosing the MS: that his boss would "presumably" keep his disclosure confidential (but maybe would not?); that Ned would have to decide how, where and when to tell his other colleagues and the children in the school (and what might their response to that be?); and, importantly, that he "still doesn't like the thought of telling his employer.

Ned also had Primary Progressive MS, which meant that he would most likely experience a slow but steady progressive deterioration in physical capacity, most likely necessitating a disclosure in the future because he would no longer be able to hide his disability. At the time of the interview, Ned had a slight limp. Another concern tracing through his antenarratives was that, because of the progressive nature of his MS, his choice of disclosure would disappear over time anyway, with the timing of his disclosure increasingly moving beyond his control. His remarks showed uncertainty and ambivalence around the question of disclosure, especially as this related to his fears of increasing disability in the future:

Ned: No [he hasn't disclosed his MS], not yet. No, but I mean I'm looking at it. I'm thinking that while my leg is getting worse now, as I said, over the last few months it seems to be getting worse, I'm thinking, "Oh, that might be the next stage".

MV: And how do you feel about that?

Ned: Oh, I don't know [Ned sounds very uncertain]. I don't know. Walking into school with a stick is not going to be a good look ... I mean that's when, that's when I probably would have to disclose, I think, to my employer.

MV's Response: Ned doesn't know, and neither do I. From my experience, and as a high performer, like Ned, in various jobs over many years, I have formed the view that it doesn't matter one whit if you are doing a good job or not. What matters most are the views of the person, flawed or otherwise, who makes the decisions about whether you get that job, or stay employed. These views will often be based purely on what they think (or don't think), know (or don't know) or assume (correctly or incorrectly) about having an employee on the books who has MS. The problem that Ned also has is that, because he has primary progressive MS, it won't be very long before people where he works are asking questions that he will not be able to explain away. At the time of our interview, Ned explained his limp to others as an old football injury. His future experience with a progressive form of MS is unlikely to allow him to continue such a deception for long. Ned is right to be concerned; I would be. And I would be wondering--all the time--who, what, when and where I would need to tell the boss about this, and what would be the reaction.

Miranda Regrets Saying Anything

Miranda's antenarrative was very clear in sharing her belief that she should never have told anyone where she (previously) worked about having MS. After sharing evidence with me of clear discrimination resulting in her termination from her previous place of work (See Vickers, 2009a), Miranda made it quite clear, while describing the discriminatory actions of her previous employer, that she now felt that she should not have told anyone about her diagnosis of MS and that having done so had directly resulted in her termination from her previous place of work. Miranda used the significant and emotive term of "regret" to reflect her feelings about the layoff she experienced from her former employer. What is not said, but can be inferred, were her likely regrets as to how this impacted her continuing life with MS, including her professional identity, future employment opportunities (and lack thereof), financial future (especially her ability to pay her mortgage), and her ability to continue to live independently. Miranda also had a progressive form of MS at the time of the interview.

Miranda: I regret talking about it, Margaret, [sounds upset]. I really should've kept my mouth shut and not said anything.

MV's Response: I have nothing much to add; Miranda has said it in a nutshell. Miranda's inadvertently blurted out disclosure to a colleague substantially and negatively impacted her entire quality of life via her subsequent loss of employment, especially at such a young age. Miranda was in her early 30s when she lost her job as a flight attendant. At the time of interview, she was surviving on a disability pension--while still trying to pay off her home mortgage.

Glen Finds Support

Here, I share a more positive perspective surrounding disclosure at work. Glen reported a supportive workplace which might be attributed largely to the sensitivity of his manager perhaps, rather than the organisation as a whole. Initially, Glen also didn't disclose having MS to his employer. However, as is often the case, over time he found that he needed to request some accommodations at his workplace in order to be able to keep working. In his case, he needed to shift into a role where he could sit down to do his work. Fortunately, Glen found support from his manager:

MV: And what did you tell them at the time? Glen: I didn't tell them anything. MV: OK. You hadn't disclosed about the MS to anyone at work .

Glen: No, I hadn't disclosed at that time . I was finding, I'd have to drag my feet around because I was on my feet all day and all that sort of thing. So,... I did approach them and said, "I've got a medical problem and I think I need a job back in head office where I can just sit down." But I didn't tell them I lost the sight in my eye .

MV: Did they know what was wrong with you?

Glen: I told them that I had MS. The reason I did tell them. yes, I felt that I had to tell them up front what it was and if something happened, well, you know from there on, you know, I'd get on with that. But they were really superb. There was one lady, and she was just unbelievable. She was a senior manager. Anything, you know, she did.

MV: Can you give me an example. ?

Glen: ... Well, her object was to make sure that I stayed at work for as long as I possibly could. She said, you know, she said, "I don't know a lot about MS", but she said, "if you have like a problem for two or three months, then have it off and then come back and don't feel your job's going to be, you know, taken away from you, or anything like that."

Of interest, Glen shared that his manager had commented on the possibility that his job might have been "taken away from" him as a result of his disclosure. His antenarrative confirms that both he and his manager had thought about the possibility of discrimination and resulting job loss for him. In this case, the good news is Glen's manager was working to support him against such an eventuality.

MV's Response: I am always delighted when I hear stories of support for people with MS at work. And they do happen. It is just that, in my personal experience and based on what I continue to hear from the field, the negative stories tend to outweigh the positive ones. My own interpretation of Glen's positive circumstances points to Glen's manager and some of his colleagues, as opposed to the organisation, as being responsible for the support he has received at work. I would imagine that, if Glen's manager were to leave or be transferred, that Glen could not necessarily assume that the next manager would be so supportive.

However, once again, on the positive side, because Glen has been working successfully with disability accommodations in place for some time, and with those around them seeming to be comfortable with Glen, his disability, and the accommodations he has in operation to support his disability (colleagues are sometimes not so sanguine about requested accommodations either, thinking that the person with disability is getting "special" treatment), that the likelihood of the positive support continuing is higher than if Glen had to request accommodations without any successful precedent to point to.

CONCLUSION

When doing qualitative research we should create texts that are voyages of creation and discovery--for the author, the respondent, and the reader (Tierney 2003). I have shared antenarratives here to highlight what I believe to be some of the key concerns for respondents surrounding their decision to disclose having MS, especially at their place of work. Using antenarratives enabled me to compress some of the reported lived experiences, to get right to the middle of things and share, in a few key sentences, what was germane in what respondents said, as well as offering clues to what remained unsaid, that may have traced through the heart of their experience, or lurked at the margins, out of sight, but worthy of careful consideration.

It is hoped that the antenarratives shared offer insights to health care professionals as to the issues surrounding questions of illness self-disclosure, especially at work. I have endeavoured to highlight the lived experience, meanings, nuances, fears and concerns of the respondents, and myself, especially with regard to decisions and thinking about choices of disclosure of MS at work. One of the peculiar and useful properties of antenarratives is that they share lived experience, meanings and events in ways that offer segues to other concerns and speculations that are also be worthy of our attention. It is hoped that has been achieved here.

At a time when health care providers are seeking fundamental changes in the way individuals and groups within the organization perceive, think and behave (Scroggins 2006), one way that health care providers can enhance the quality of life of those they serve is, not necessarily to have a list of pat answers to routinely asked questions, but to be able to share insights into the lived experience of illness and disability for those with MS, and in a way that demands that that person go away and think through the conundrums and challenges that may arise for them in the future, rather than uncritically accepting the advice of another, which ultimately may or may not be helpful. Health care providers armed with useful insights which might not be a series of "right" answers or "correct" advice--will be better placed to respond to the needs of people with MS, in ways that contribute to the improvement of activities of daily living, support of continuing employment, and improving access to disease modifying agents, physical aids and symptom treatments (Wu et al, 2007). Presenting the lived experiences of people with MS as antenarratives is one means of ensuring that their needs might be better understood and responded to by health care professionals.

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(1) The questions surrounding stigma for people with MS are complex, important and worthy of further consideration, especially when considered alongside choices of self-disclosure. Having a chronic illness such as MS is often highly stigmatized, especially at work (Vickers, 1997, 2001; Joachim & Acorn, 2000; Grytten & Maseide, 2005; Gryytten & Maseide, 2006). However, once again, I have elected to remain focused on the use of antenarratives as a means of presenting lived experience for health care practitioners, rather than making this article a return to a discussion of stigma for people with MS.