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Facing Adversity: Authentic Stories of Living and Working with Panic Attacks Jasmin Perrone & Margaret H. Vickers & Lesley Wilkes Published online: 15 May 2013 # Springer Science+Business Media New York 2013 Abstract This paper presents stories of adversity, as voiced by those that live and work with panic attacks. Respondents of this exploratory, phenomenological study, conducted in Sydney, Australia, shared their experiences of living and working with panic attacks. Two themes (and five sub-themes) of their reported lived experiences are presented here, including: A Changed Life (including sub-themes of: a seismic shift; a creeping change, and not knowing); and, Being Alone (with sub-themes of: withdrawing from the world; and professional non-support). Amidst their experiences of panic-related adversity, the 18 respondents reported trying to maintainoften without successtheir working lives and selves. The often profound implications for employees working with panic are discussed, including the urgent need for further research. Keywords Panic attacks . Chronic illness . Mental illness . Phenomenology . Work Introduction Adversity has been defined as a state of hardship or suffering associated with misfortune, trauma, distress, difficulty, or a tragic event(Jackson et al. 2007: 3). We claim that employees living with panic are facing significant, and previously unacknowledged, adver- sity in their life and work as a direct result of living with panic. Presented below are findings from an exploratory, phenomenological study undertaken in Sydney, Australia, where lived experiences of employees living with panic attacks were investigated. Respondents shared Employ Respons Rights J (2013) 25:257275 DOI 10.1007/s10672-013-9222-1 J. Perrone : M. H. Vickers School of Business, University of Western Sydney, Parramatta, Australia J. Perrone (*) School of Business, University of Western Sydney, Locked Bag 1797, Penrith, NSW 2751, Australia e-mail: [email protected] L. Wilkes School of Nursing and Midwifery, University of Western Sydney, Campbelltown, Australia
Transcript

Facing Adversity: Authentic Stories of Livingand Working with Panic Attacks

Jasmin Perrone & Margaret H. Vickers & Lesley Wilkes

Published online: 15 May 2013# Springer Science+Business Media New York 2013

Abstract This paper presents stories of adversity, as voiced by those that live and work withpanic attacks. Respondents of this exploratory, phenomenological study, conducted in Sydney,Australia, shared their experiences of living and working with panic attacks. Two themes (andfive sub-themes) of their reported lived experiences are presented here, including: A ChangedLife (including sub-themes of: a seismic shift; a creeping change, and not knowing); and, BeingAlone (with sub-themes of: withdrawing from the world; and professional non-support).Amidst their experiences of panic-related adversity, the 18 respondents reported tryingto maintain—often without success—their working lives and selves. The often profoundimplications for employees working with panic are discussed, including the urgent needfor further research.

Keywords Panic attacks . Chronic illness . Mental illness . Phenomenology .Work

Introduction

Adversity has been defined as a “state of hardship or suffering associated with misfortune,trauma, distress, difficulty, or a tragic event” (Jackson et al. 2007: 3). We claim thatemployees living with panic are facing significant, and previously unacknowledged, adver-sity in their life and work as a direct result of living with panic. Presented below are findingsfrom an exploratory, phenomenological study undertaken in Sydney, Australia, where livedexperiences of employees living with panic attacks were investigated. Respondents shared

Employ Respons Rights J (2013) 25:257–275DOI 10.1007/s10672-013-9222-1

J. Perrone :M. H. VickersSchool of Business, University of Western Sydney, Parramatta, Australia

J. Perrone (*)School of Business, University of Western Sydney, Locked Bag 1797,Penrith, NSW 2751, Australiae-mail: [email protected]

L. WilkesSchool of Nursing and Midwifery, University of Western Sydney, Campbelltown, Australia

their experiences, sometimes reflecting upon and making sense of them for the first timeduring the interview process. Through their stories, a picture emerged of how profoundlypanic affected their lives, including their work lives.

Anxiety disorders are the most common mental health problem in Australia, affecting14.4 % of people (Australian Bureau of Statistics [ABS] 2007), and anxiety disorders arecomplex (Michael et al. 2007), varying in nature and presentation (Zvolensky et al. 2005).Their characteristics and symptoms often overlap with other medical conditions, and sharecommon features (Nutt et al. 2008), which can make diagnosis difficult. One commonattribute of many, if not all, anxiety disorders is the experience of panic attacks.

Panic attacks are experienced bymany of us. More than one in five people will experience atleast one panic attack in their lifetime (Kessler et al. 2006) and while panic attacks areconsidered a subjective experience (Gupta 1993), with symptoms and intensity varying fromone person to another, they usually also involve a discreet period of intense fear or discomfortthat is experienced in the absence of any real danger (American Psychiatric Association 2000).And while this invisible and often chronic condition is seldom discussed outside clinicaljournals, it is a fact of working life: an estimated 2.9 % of Australian workers will have hadan anxiety disorder for at least 6 months (Waghorn et al. 2005) and this is likely to manifest inepisodes of panic. Researchers have also confirmed that the majority of those with mentalillnesses, such as depression and anxiety, continue to work (Sanderson and Andrews 2006). So,panic is a workplace issue and should be of concern to employers and employees.

Despite the pervasiveness of panic attacks, and the recognised significant burden thatpanic attacks can have on the individual, organisation and community (Roy-Byrne et al.2006), the experiences of people who have panic attacks, especially those who work, havehad scant scholarly attention. To date, very few studies have been located that explore thesubjective experiences of those with anxiety disorders (see, for examples, Haslam et al.2005; Davidson 2005). Related research includes: work stress, burnout, work-load andmobbing (see, for examples, Zapf et al. 1996; Turnipseed 1998; Hobson and Beach 2000;Nagata 2000; Rahe et al. 2002); workplace-related posttraumatic stress disorders (Laposa etal. 2003; MacDonald et al. 2003; Price et al. 2006); labour market participation andemployment patterns for people with anxiety disorders (Waghorn et al. 2005); performanceanxiety problems in professional settings (Fehm and Schmidt 2006); and the role of high jobstrain and job insecurity in increasing the risk of social phobia (Stansfeld et al. 2008).However, to date, no research has been located that specifically explores the day-to-daywork-life reality of employees who experience panic attacks.

There is, however, a considerable volume of medical research on anxiety disorders andpanic attacks (see, for examples, Barlow et al. 1994; Baillie and Rapee 2005; Story andCraske 2008); that is, research that is written by clinicians for clinicians. The vast majority ofthis research is grounded in reductionist, positivist, empirical methods, which can result inthe reduction of mental illness to a mechanical or chemical process, with a possible outcomeof this kind of investigation being that the lived experience of those experiencing panic maybe overlooked. Similarly, in the workplace setting, concerns of an employee who might beaffected by panic may be disregarded in favour of an employer’s perspective and how to bestminimize the impact for that workplace (Diener and Seligman 2004). Studies of this naturefrequently focus on attempts to measure the costs of anxiety on lost productivity, and theorganisation’s bottom line (see, for examples: Greenberg et al. 1999; Savoca and Rosenheck2000; Marciniak et al. 2004; Dewa et al. 2006; Sanderson and Andrews 2006). While such aresearch orientation is unsurprising, given the rationalist, capitalist context in which modern,Western organisations operate (Landau and Chisholm 1995; Rees 1995; Vickers 1999,2001), and where efficiency and output are highly valued (Denhardt 1981; Vickers 1999,

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2001; Allen and Carlson 2003), the outcome of such a perspective finds employees who areperceived to be unable to operate at ‘optimal capacity’ (Vickers 1999, 2000, 2001) due to ill-health, being viewed as a “problem”. Employees with any form of a mental illness have theadditional challenge of having to contend with their emotional distress and “irrational” fears(frequent markers of panic attacks), while not conforming to traditional and normativeemployer ideals as to how staff should be when working in rational, bureaucratic organisa-tions (Gherardi 1995, cited in Vickers 2001; Davidson 2005). And those employees unableto conform are often marginalised (Parsons 1951; Vickers 1999, 2001; Peterson et al. 2004).Those with unseen chronic conditions (Vickers 2001) such as panic may then choose toconceal their stigmatising health status to mitigate the impact it might have on theiroccupational identity (Dodier 1985; Fitzgerald and Paterson 1995; Vickers 1995, 2001;Dyck and Jongbloed 2000; Allen and Carlson 2003; Beatty and Joffe 2006).

In response to the dearth of previous research into employee lived experience of panic,initial findings from this exploratory study are presented below. They are intended to assistrecognition, and understanding, of the life and work issues for those experiencing panic.Details of the phenomenological methodology are followed by a portion of a largerphenomenological model, where we explore core themes that emerged from our exploratoryinvestigation into the lived experience of panic. Finally, we conclude with a discussion of theimplications of those findings, including identifying some limitations of this exploratorystudy, and some suggestions for further research.

Methodology

The findings reported here form part of a larger Australian exploratory, phenomenologicalstudy, which aimed to understand the life and work experiences of people affected by panicattacks. The research design is underpinned by the philosophical tenets of phenomenology,as the research was primarily intended to explore the lived experience and the meaning thatthis experience holds for the individual. Phenomenology is especially applicable to accountsof health and illness as it illuminates the private, unexpected and ineffable aspects ofeveryday human experience (Madjar and Walton 1999). We have also closely aligned ourphilosophical methodological approach with a hermeneutic analysis and interpretation(Streubert and Carpenter 1999). Following Heidegger’s and Gadamer’s hermeneutic phenom-enology (as outlined by Van Manen 1990: 180), requires both descriptive and interpretiveanalysis. Lived experience is understood from the data gathered; from language, texts andactions shared. We note that all stories gathered are of value as they form the basis for newknowledge and that, within that, some stories are unique, and others are generalizable with allbeing important in the quest for knowledge (Vickers 2001). We hope that sharing insight intorespondents’ day-to-day life with panic attacks will enable readers to glimpse, through theirstories, the lives of the people who tell them; and to inspire, challenge and change readerunderstandings of the lives of people who have panic attacks (Madjar and Walton 1999).

Purposeful sampling was used, and in-depth, semi-structured interviews were conductedwith 15 women and three men who self-identified that they had experienced at least one panicattack, andwere working at the time of the attacks. The 18 respondents all had very different lifeand work demographic backgrounds. However, despite this, common themes emerged aroundtheir lived experience with panic—regardless of their age, workplace, gender or anything else.At the time of interview, the oldest respondent, Hattie, was 71 years old, and the youngest,Lucy, was in her early twenties. Their occupation, skills and education levels varied and rangedacross a broad spectrum of industries. Respondents were: married, divorced, mothers, fathers,

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grandparents, or without children. Respondents qualified to participate in this study if they hadexperienced at least two panic attacks in their lifetime. However, it quickly became apparentthat episodes of panic were not isolated experiences for any of them, but formed a chroniccondition that had shaped, and continued to shape, their lives. Illness duration for allrespondents was also lengthy, ranging from between 1 and 56 years (Table 1).

Ethics approval for the study was gained from the Human Ethics Review Committee of theUniversity of Western Sydney. All interviews were transcribed verbatim, and analysed usingthematic analysis (VanManen 1990; Creswell 1998). Analysis included a general reading and re-reading the interview transcripts, making of notes around material events, issues, meanings andexperiences, and the subsequent identification and coding of themes and sub-themes thatemerged from the data (Van Manen 1990; Creswell 1998). This process resulted in thedevelopment of a larger phenomenological model, a portion of which is presented here.Shared below are the themes (and associated sub-themes) that emerged from the reportedexperiences of employees living with panic: (1) A Changed Life (with sub-themes: A SeismicShift; A Creeping Change; and, Not Knowing); and, (2) Being Alone (with sub-themes:Withdrawing from the World; and, Professional Non-Support). Each is explored below (Table 2).

A Changed Life

For many respondents, the peak of suffering occurred during the early stages of their illness.One possible reason why respondents identified this period as being particularly traumaticwas because it marked the moment when their lives irrevocably changed and all their

Table 1 Respondent demographic details

Name Gender Age Marital Status Length of time with panic attacks

Audrey Female 57 Separated or Divorced 6 years

Charlotte Female 24 Single “As long as I can remember.”a

Chloe Female 26 Single 10 years

Faye Female 59 Married 7 years

Grace Female 56 Married 1 year

Hannah Female 25 Single 6 years

Hattie Female 71 Married 56 years

Helen Female 56 Separated or Divorced 9 years

Jacqueline Female 51 Married 6 years

John Male 47 Married 33 years

Lauren Female 36 De facto 7 years

Lily Female 47 Single 4 years

Lucy Female 23 De facto 7 years

Mack Male 57 Married 7 years

Maya Female 42 Separated or Divorced “A very long time.”b

Ruth Female 57 Single 1 year

Steven Male 45 Married 15 years

Wendy Female 53 Married 41 years

a, bCharlotte and Maya were unable to recall the length of time they had been living with panic attacks.However, they both confirmed their affliction with panic had been with them for many years

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previous assumptions and understandings of their being in the world were shattered. Audreyconfirmed: “the initial period was so devastating.” Chloe concurred: “the first couple ofyears were pretty bad.” For some, their changed life reportedly coincided with othernegative life events which may have contributed to the panic attacks emerging. Forexample, several respondents stated that workplace bullying and/or excessive work andlife demands contributed to their first panic attack. The following section explores theexperience of this shift to A Changed Life during the early stages of their illness. Therespondents’ stories indicated that this transition could occur as: A Seismic Shift; ACreeping Change; or, Not Knowing.

A Seismic Shift

Many respondents were able to give poignant and detailed descriptions of their firstexperience with panic, even many years after it had occurred. They shared their experienceas being one of great trauma, and unlike anything they had experienced before. The firstpanic episodes signified the significant, even seismic, shift in their lives as they transitioned,often abruptly, from wellness to chronic illness, to a life fractured by uncertainty, fear, andstigma. Helen, almost a decade later, easily recalled minute details of her first panic attackindicating the significance of the life-changing event for her:

And I thought I was going to die that night. That was on the 16th of June 2000… Fiveo’clock in the night—Friday night. I was standing in the rumpus room.

These memories were so painful to Helen that she “used to dread coming up to theanniversary.” Helen related that she had come to the uncomfortable realisation that she wasstill emotionally connected to this initial panic event and confessed that “9 years later youshouldn’t be able to [remember] that.” Similarly, Wendy’s narrative confirmed the magni-tude of her initial panic experience and its role in changing her life. After 41 years Wendywas able to vividly recall the particulars of her first panic attack:

My first panic attack, I was in sixth class. So, I would have been 12 … And this classwas really noisy… and everybody was screaming and yelling and shouting. And all ofa sudden I felt like I was having an out-of-body experience … It was like I was on theoutside looking into something. And, ah, [clears throat] the more I sort of thoughtabout it the worse it got. And I turned around to my girlfriend who was sitting next tome … and I said to her, “I think I’m going mental.”

During her sharing of her story, Wendy’s emotions showed clearly: her voiceshook; she coughed to clear her throat; and, her eyes appeared glassy, as thoughshe were on the verge of weeping. Her past experience was so vivid and pressingthat, even after the passage of so many years, she appeared to relive it whiledescribing it during interview.

Table 2 Facing adversity: themesand subthemes Themes Subthemes

1. A changed life • A seismic shift

• A creeping change

• Not knowing

2. Being alone • Withdrawing from the world

• Professional non-support

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For some respondents, their abrupt life shift occurred at work, or during the commute towork. For Jacqueline, the culmination of being bullied by a senior manager at work, as wellas family stressors, resulted in her having her first panic attack on her way to work:

The next day I got dressed, ready for work, got in the car, got two streets away fromhome and started to vomit. I started to dry retch and I thought, “Hang on. I felt alright10 minutes ago.” But I had been thinking about work. So I thought, “I can’t go towork. I just can’t do it.” So I turned around and went home… I got into bed and didn’tget out of bed for 3 days. My husband said I was curled up like a foetus, breathingheavily, telling him I was having a heart attack—all the classic panic attacksymptoms—but I didn’t know.

Jacqueline’s narrative is illustrative as to how panic attacks can instantly disrupt lifepatterns of family life and work. Moreover, because of the abruptness of the change, manyrespondents were left vulnerable, unprepared to deal with any subsequent workplace ram-ifications. Jacqueline’s sudden transition to illness left her husband to explain to her managerabout her workplace absence. And, because of the suddenness of events, there was little timefor Jacqueline and her husband to carefully think through and plan how to communicate thisinformation to her employer. They were disclosure ignorant (Vickers 1997, 2012) and, as aresult, Jacqueline’s husband fully disclosed her very stigmatising condition to her manager,while concurrently reinforcing the negative stereotypes attached to panic disorder: “[Myhusband] told them it was a panic attack. Oh, first he told them I’d gone mental.” Jacquelineinitially said she felt “fine” with her managers and work colleagues knowing about hercondition, and reported feeling supported while on leave—“I had people [from work]coming to visit me … I mean I hate to say it, but everybody loved me.” However, sherevealed later in the interview a very different experience, reporting being pressured intoreturning to work after 3 months of sick leave, then being accused by her employer of owingthem 3,000 dollars to pay for sick leave that, they claimed, she was not entitled to, andmaking demands that she pay this money back. Within 4 months of her (early) return towork, Jacqueline felt the need to resign from her job, given a very unsupportiveworkplace, including managers that were hostile and discriminatory. Readers mightspeculate, as we have, as to whether the visit she received from co-workers was indeedintended to be supportive, and what flawed conclusions co-workers might have drawnwhen seeing her, with her unseen chronic illness and probably looking “fine” if not inthe middle of a panic episode.

Finally, we draw attention to the capacity for a phenomenological model to allow foralternate experiences to legitimately co-exist within an identified theme. While stillexperiencing a swift change, Lily depicted a slightly different experience in that she knewimmediately what was happening to her. She confidently asserted that, regarding her panicattacks onset, she “knew immediately what they were.” When she was asked her how sheknew, she replied:

I think I’d just always known about what panic attacks were because I’ve had … thisbackdrop of generalised anxiety disorder, and also a friend of mine has panic attacks,so I knew about them from him as well. Yes.

What is interesting about Lily’s differing experience (in light of the stigma and shame thatemerged from the stories of others) is that, although Lily knew immediately what washappening to her, it still took her three months to seek any help. She did not confirm exactlywhy this was the case; however, one possible explanation might be that Lily felt ashamed ofher condition, having seen how others might have been stung by the discrediting comments

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and delegitimising actions of those around them, or knowing directly the stigma thatattached to panic disorder.

Initial panic experiences can manifest as sudden and abrupt events—A SeismicShift—immediately thrusting respondents into their Changed Life with panic. However,not all respondents experienced the transition to a life with panic as a swift and sudden shift,as the next sub-theme reveals.

A Creeping Change

For several respondents—Steven, Audrey and Grace—the shift into illness occurred moregradually, but no less profoundly. It was A Creeping Change in their lives; insidious,sneaking up on respondents, initially unnoticed, and still leaving them feeling they had nochance to gather themselves and respond. Audrey explained her experience of this creepinglife change: she went through a period of “gradual realisation” before understanding thatshe had a problem with panic; that it had “snuck up on [her], more or less.”

Grace also remarked that her problems with panic “started out slowly and [she] didn’trecognise it at first.” She continued her story of A Creeping Change, stating that it “sort ofgradually built up from [physical tension] … but it just got worse and worse and worse.”Similarly, Steven recalled panic creeping into all aspects of his life: “it started to creep intomy driving and then catching a train and stuff like that.” Steven’s comment also vivifieshow employees experiencing panic can begin to fear having panic attacks in situations orplaces that have previously been perceived by them as non-threatening. This notion of acreeping foe can then mean, for them, that episodes of panic—and all the associated fear,uncertainty, humiliation and turmoil they might bring—could sneak into any aspect of theirlives, including their working lives, without them noticing.

And awareness of this Creeping Change was reported by respondents as also interferingin their working lives. Many respondents reported becoming extremely distressed about, andduring, commuting to work, because they began to fear having a panic attack, either whiletravelling on public transport or driving on busy highways. Unsurprisingly, these disablingsymptoms then served to constrained respondents’ career options. For example, bothJacqueline and Charlotte reported restricting their career choices to workplaces that werelocated in close proximity to their homes. Such a restriction then became especiallyproblematic for Jacqueline as she found it almost impossible to find causal employmentwithin her local suburban area:

You know, because I do temp work, I limit myself to this area. I mean I could get a jobin the city, I could get a job anywhere with my qualifications, but I just don’t even look…Yes, so it does limit me that way, because I’m not prepared to sit on the motorway intraffic; [Pause] I’m not sitting in traffic for an hour … I know I would end up gettingmyself worked up.

At the time of interview, Jacqueline was still registered with a temporary recruitmentagency in order to try and find work. However, she admitted that although she was stillgetting calls about temporary roles that became available and that she would have beensuited for, they were too far away for her to comfortably travel to. So, at the age of just 51,she considered herself “semi-retired”—purely because of the impact of her panic episodes.Jacqueline’s experiences confirm just how damaging panic attacks could be on the employ-ment, career, and long term financial outcomes of employees with panic attacks. Jacqueline’spanic attacks resulted in her very early, semi-retirement that would have vastly negativelyimpacted her family’s ongoing financial and retirement goals.

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Similarly, Charlotte’s fear of “being stuck in traffic and not being able to get out—nothaving a backup route” also meant her career choices were restricted. Charlotte took thedrastic step of moving house, so she could be 5 minutes away from work, purely because ofher panic, and the fear her panic episodes induced:

Work’s nice and close. I think it’s 4.7 km or something. And I’m like, “Yes!” A5 minute drive, compared with a 40 minute drive.

But this was a not an ideal solution for Charlotte. Charlotte still faced the difficulty ofbeing then trapped in a workplace that she described as “toxic”. For her, to change jobswould also include the added stress of requiring her to move house so she could be close toany new place of employment: “If I was to get another job somewhere else I’d have to upand move again.” As a result, Charlotte would be likely to feel especially vulnerable abouther living and working arrangements, creating still further instability, fear and insecurity inher life.

Not Knowing

The changes brought into the lives of employees with panic were also filled with ahigh degree of confusion and uncertainty—of Not Knowing what was happening tothem. Many spoke of trying to interpret their ambiguous and misleading symptoms,and how the associated uncertainty and confusion around this intensified the traumathey were experiencing. Many also reported long and circuitous pathways to medicaldiagnoses and appropriate support. Mack confirmed that, for him, “the not knowingwas the biggest problem.” The lack of clarity about the illness and its prognosis alsocreated further confusion, as well as feelings of self-blame, preoccupation with theirpanic, and was often characterised by reported feelings of frustration, even despair.Indeed the “deluge of ambiguity often becomes as debilitating as the illness itself”(Boss and Couden 2002: 1352).

Almost every respondent described an initial stage in their lives with panic during whichthey had no vocabulary for naming their problem. It was not unusual for respondents to gofor long periods of time—sometimes months, or even years—without realising that thedistressing mental and physical symptoms they were experiencing were panic attacks.Twelve of the 18 respondents expressed these particular concerns. The associated confusionand uncertainty was exemplified by John, and Mack:

My first experience [with panic], I didn’t know what was happening. I can rememberthat. I couldn’t understand the feeling that I was getting … the feelings were reallyhard to explain, and terrible. (John)My main concern was trying to find out what was wrong with me, because I didn’tknow … I’d never ever seen anybody have a panic attack … I’d never heard of it …So, I didn’t know what was happening to me. So, in that initial [period], probably for3 months, I thought, “I don’t really care what happens to me, at the moment, I just -, Ineed to know.” (Mack).

Many panic symptoms, including chest pain, palpitations, shortness of breath andparaesthesia (numbness or tingling) can mimic a wide variety of different medical conditions(Taylor 2000). Many respondents misinterpreted their symptoms; for example, Hannahinitially believed that her “shortness of breath” during a panic attack was a symptom ofher having an asthma attack, a previously diagnosed illness of hers:

264 Employ Respons Rights J (2013) 25:257–275

Like I said, when I first got [a panic attack] I just chalked it up to asthma, because I had noidea what a bloody panic attack was. I just put it into a really bad case of asthma.

Similarly, Chloe concluded that the tremors and shakes she was experiencing during herpanic attacks had another cause, perhaps related to ageing:

Because I have a nerve tremor as well, and I just thought it must have been a physicalthing that I’ve got as I’ve got older.

Several other respondents misinterpreted physical symptoms during initial panic attacksas signs of heart failure. Mack, Faye and Steven were all admitted to Hospital EmergencyDepartments with suspected cardiac failure. For 4 months Mack—and his doctors—“werequite convinced it was [his] heart” causing his dizziness, chest and arm pains. Fayeremarked that, during her panic attacks, “my heart just feels like it wants to leap out of mychest.” When asked if she knew she was having a panic attack she replied:

No, I didn’t know it was a panic attack. I had no idea it was a panic attack. I come froma family that’s just riddled with heart disease and I thought that I was having a heartattack … So [the staff of the Emergency Department] had me in a [hospital] bed withall sorts of things attached to me. And I was there for about … 5 hours, and they said,“Well, we can’t find anything.”

Respondents who believed themselves to be having heart problems reported beingparticularly terrified, thinking their symptoms life threatening. For Mack, the NotKnowing pushed him to the edge of despair, including the contemplation of suicide:

“Prior to [finding out] what was wrong with me … I was out there. If I needed to goout and jump in front of a bus, I probably would have.

Audrey’s story also highlights the possibility that many people with panic attacks do notrecognise, or understand, what is happening to them. Her case is of particular interestbecause Audrey is an enrolled mental health nurse who manages the care of in-patientswith panic disorders and other mental health conditions. Even with her expert professionalknowledge of the condition, and its symptoms and presentation, Audrey initially failed torecognise the signs of her first panic attack; instead, interpreting her sensations as a“physical thing” perhaps resulting from her being overweight. With hindsight she realised:“Looking back, they were classic panic attack signs.” Here, Audrey—a mental health nursewith years of experience—describes being unable to make sense of her own panicsymptoms:

Researcher: When you started having the panic attacks did it dawn on you that theywere [panic attacks]? …Audrey: [Slight pause] No, not immediately, I wouldn’t say. No. Because … whenyou’re shaking, and when you’re sweating, and when you’re hyperventilating, youimmediately look for a medical physical illness. And you go through the whole process ofwhat you could have and couldn’t have, and I think it’s a gradual realisation …So no, initially it didn’t [dawn on me] as soon as I had one. I didn’t think,“That’s what it is!” No. It snuck up on me, more or less.

Audrey’s response was particularly troubling because it shows the propensity of panicdisorder to baffle and confuse even seasoned and trained clinical experts in the field,magnifying the difficulty those suffering panic episodes might have in securing the supportthey need.

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Being Alone

During analysis, it became apparent that a significant aspect of respondent experience ofBeing Alone was the deliberate—and paradoxical—choices made by many that ensuredtheir own isolation. Many respondents withdrew from work, their community, and thosearound them, deliberately, creating a physical, emotional, and/or psychological space thatisolated them (and their panic) from other people. Paradoxically, respondents reported notwanting to be alone and reached out—frequently without success—to others, includingmedical professionals, for support. The lack of support they reported when they did reachout then served to amplify their growing sense of isolation; many reported struggling withtheir illness, and feeling very much on their own, causing them to withdraw even further.

Respondents used vivid metaphors to convey their sense of isolation, alienation anddisconnection from others when living a life with panic. The metaphors shared a strikingsimilarity:

It was like I landed on Mars and had no idea who I was, where I was, or why I washere. (Hattie)I felt strange—alien; like I was on a new planet. (Faye)I was walking home, I felt quite strange and quite alien to everybody. (Wendy)

The sense of isolation and disconnection from others reported by respondents was notonly conveyed by the use of such metaphors, but was evident in all of their narratives:feeling alone with their panic was one of the most common experiences reported. Thespecific nature of these experiences is presented below within two related subthemes:Withdrawing from the World; and, Professional Non-Support.

Withdrawing from the World

During the worst episodes of panic, it was common for respondents to deliberately isolatethemselves from others, and from the world around them. It was not that these respondentslacked people in their lives, or were not wanted by others—indeed, many respondentsconfirmed the love and support of family and friends. Rather, respondents felt incapacitatedby the crippling effects and overwhelming feelings of panic and anxiety, and consciouslyorganised their lives in order to separate themselves from spaces and/or people that theyperceived as threatening to their fragile mental state.

Many respondents isolated themselves by withdrawing to the perceived safety of theirhome. Hattie’s narrative exemplified an extreme case: During her darkest days with panic,Hattie remained at her home for 4 years. She described this time in her life:

I spent 3 years where I didn’t go out my front door or my back door. I spent 4 yearswhere, I couldn’t get to the letter box and I couldn’t get to the clothes line. Nobodycould do anything about it.

While not as debilitating or as protracted as Hattie’s reported experience, retreating to theperceived safety of their homes was also reported by others. For example, Grace reportedthat she “sort of went to bed and pulled the covers up for a while” and that, “I was reallyalmost confined to the house, because I just didn’t want to go anywhere.”

Given that respondents were all in paid employment at the time of interview, withdrawingphysically from the world invariably meant that many of them needed to take leave fromwork, which could last just a day or two, or for some, many months. For example, Audreytook 8 weeks leave from work and also isolated herself in her home:

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I’d isolate. Take to my bed and stay there when I had that period off work. Take to mybed; watch TV; try and distract myself.

The nature of panic attack symptoms meant that many of respondent absences from workwere sudden, frequent and unpredictable. Additionally, because panic attacks are invisibleand most respondents looked well, absences from work were reportedly sometimes viewedby employers with suspicion (as Jacqueline reported, above). Reasons given by employeesexperiencing panic lacked credibility, and time off was then used by employers as asubsequent justification for dismissal, as Steven reported:

They just said, “You’re having too many days off so we’re going to let you go.”

Upon reflection, while Steven reported feeling “cheated” by his employer, he stillbelieved that disclosing the real reason for his sick leave—his panic episodes—wouldhave made no difference to the outcome. So ingrained was respondent belief in thestigmatisation surrounding panic attacks—that panic was not considered by others tobe a legitimate illness—most respondents chose not to disclose this as their reason fortaking leave: Grace took 6 months leave without pay and told her employer it was“for family reasons”; Lily would say she was “unwell” if she took the “odd sick day”because of panic attacks; and, Audrey returned to work after 8 weeks of extendedleave and was “fairly evasive and non-committal about what [she] was doing.”Audrey’s stated reasoning for keeping her illness concealed was because she felt “itwas less harmful to [her] career, and [her] standing and the respect of the people at[her] work.”

During periods of extreme anxiety, both Chloe and Lily reported staying at home andavoiding contact with others. Both reported not answering the telephone when they feltreally anxious, not wanting to communicate with anyone. Chloe conceded that, “I’ll actuallynot answer my phone for entire days.” She also admitted:

The more they ring me, the more I don’t want to answer the phone, and I start gettinganxious about not having answered their phone call.

The paradox again emerges: Chloe’s isolation rendered her at once relieved, but alsodistressed. The more she tried to “shut out” the world, the more anxious she became. Thetelephone calls were a constant reminder to Chloe of the challenges provoking her anxietythat waited for her on the outside world.

What we term the “Paradox of Isolation” was reported by other respondents too: Steventried to explain his apparently contradictory experience: “It’s a feeling of [being] isolatedand not wanting to be isolated.” In addition to staying confined to the home, respondentsreported considerable effort being directed towards avoiding people, places and situationsthat might trigger their anxiety. However, living a restricted life also intensified theirsubsequent feelings of isolation. The Paradox of Isolation also held particular significancefor the young adults in the study who placed great importance on meaningful socialinteractions. Lucy and Chloe, both in their early twenties, described restricting their socialactivities because of panic. When asked about this, Chloe’s frustration with the limits panicplaced on her social life was clear:

Yes, yes, yes! Definitely, in terms of social activities—especially those involvingfood,1 which would tend to freak me out. I’d just avoid going because I didn’t wantto put myself in the situation of panicking.

1 Chloe’s anxiety and feelings of panic were particularly intense when eating in public.

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Lucy shared similar frustrations, and was unhappy about having to restrict her socialactivities. She also felt that such a disabling condition set her apart from her young friendsbecause they were able to continue with activities that she felt she no longer could:

Because it’s a hard thing, you know, when you’ve been a really social person, to reallychange your lifestyle to a point where you actually have to stop at x-amount of drinks;and you can’t have caffeine; and you can’t go out partying all night, and that sort ofthing. And it’s hard, when all your friends still do that, as well.

Lucy reported her sense of being “other”; feelings of alienation from her friends who shedescribed as still taking part in “normal” activities—that she couldn’t. Charlotte’s narrativealso exemplified this sense of social isolation and feelings of “otherness” that a young adultin her twenties might feel as a result of the limitations arising from this illness. When askedwhat impact panic had had on her social life, she joked:

Oh, I know what that means! [Laughs] I’ve never really had one. I do know what thatmeans, yes. I’d never been to a club—as in a nightclub kind of thing. I get invited, myfriends say, “Oh, we’re having a birthday party,” and I’m like, “No, no. I couldn’thandle the crowds” … I couldn’t handle the trip in and all that kind of stuff. I meanback when I was in school even going to the movies was almost off limits.

While Charlotte used humour to try and make light of her situation, her sense of despairand aloneness were palpable during interview. Later in the same interview, Charlotteconfirmed just how devastating these social restrictions had been on her life. She revealedthat she felt: “Depressed; incredibly depressed; incredibly disappointed.” Of interest, suchcomments were in stark contrast to her behaviour during interview, where she appeareddeliberately upbeat; laughing and joking, and downplaying the seriousness of her illness.Charlotte appeared to be trying to keep her “otherness” invisible, perhaps due to being adept(and well rehearsed?) at wearing a “mask” of normality for others, where she acted well andunaffected by the anguish she may have been experiencing. However, remarks such as theone above, revealed glimpses of a different reality, one including real distress and alienation.Proffering a “mask” of normality and concealing their “otherness” was a common responsefrom participants, particularly when discussing experiences in and around their work setting.For example, Lily said she “always wanted to give the appearance to staff… that everythingwas under control”, and Hattie admitted to wearing “a mask of normality—that I’m nodifferent to anyone else.”

Almost all respondents reported feeling alone; that they were the only ones experiencingsuch frightening and strange symptoms. Grace said: “I was just in it and inside myself.”Lucy described a similar reality: “It would just feel like it’s me and my head, and all thethoughts that are going through it, and I can’t stop them.” Feeling alone with this reality wasvery distressing for respondents, and it increased their sense of “otherness” and isolation.Helen wondered if she was losing her mind:

I thought I was the only one in theworld that felt like this… so youwere very on your own,and that made it very scary too. Because I thought I was losing my mind. I really thought Iwas going crazy … I didn’t know if I was going to die, scream, or just lose my mind.

Professional Non-support

Compounding respondents’ sense of isolation was the paucity of information and resourcesavailable to them about panic attacks, as well as a lack of felt support from the medical

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profession. Many respondents’ felt abandoned by those in the medical profession; thatthey were left to respond to the consequences of their illness on their own.Concurrently, they felt compelled to defend the legitimacy of their illness—even tomedical professionals—who respondents believed should have better understood thecondition and its implications.

The lack of information, resources and professional support available to respondents wasevident in the frequency of stories describing a protracted journey to diagnosis. For example,Hattie recalled that “They didn’t really know what to do about it back then, in ‘57, ‘58.” Sheexplained that it took “4 or 5 years” to get answers about her illness, and she likened herexperience to being “thrown out into the wilderness.” The latter comment from Hattie was aparticularly illuminating metaphor, conveying the sense of isolation many respondentsreported as a result of not having adequate information and support. Being in “the wilderness”vividly portrays the experience of being lost, separate from others, and Hattie’s use of the verb“thrown” suggests Hattie felt, not only ignored and disbelieved, but deliberately rejected, evendiscarded, by those in the medical profession.

It is also disconcerting that the challenges faced by Hattie over five decades ago are stillbeing reported by respondents at the current time. Many spoke of having their illnesssymptoms dismissed by health professionals and living, for months or even years, withthe debilitating impacts of panic attacks before finally receiving appropriate care. Chloe, a26 year old, admitted to struggling alone with her panic for 5 years, reluctant to seek helpdue to feeling “silly” and embarrassed about her condition. Finally, when she foundthe courage to bring her condition to the attention of her General Practitioner,2 theythen “sort of brushed it off.” This insensitive action (or inaction) by her GPconfirmed for Chloe the lack of legitimacy of her illness; she admitted that after thisoccurred: “I never brought it up [with my GP] again.” Similarly, it took Lucy 5 yearsto get a panic disorder diagnosis from her GP. During this time, she was treated fordepression, but “the anxiety part of it wasn’t recognised.” Chloe and Lucy’s experiencesalso highlight how a dismissal by a health care professional can reinforce a person’s decision tokeep their condition hidden, thus further hindering their recovery, and contributing to thatperson’s ongoing sense of isolation, lack of social support and ongoing sense of shameand stigmatisation.

Steven also recalled having his panic attacks dismissed by those in the medical profession,and felt that he was left to make sense of his illness. He recounted his experience of going to theEmergency Department, after suffering (and unknown to him at the time) a panic attack, and thehospital staff saying to him, “There’s nothing wrong” and sending him home in a taxi. It wasmonths after this event, when flicking through a book on panic attacks at a bookstore, thatSteven came to the realisation that he was experiencing panic attacks. He recognised hissymptoms in the pages of the text:

No one told me anything until -, I think I was at a bookshop and I saw an Americanbook or something like that and I thought, “Well, that’s what I get.”

Respondents’ sense of isolation was also magnified by their sense of being judged anddelegitimised by those in the medical profession. Judgements were observed in variousforms, and led to feelings of shame and humiliation and, of great concern, a reluctance toseek further help. For example, Wendy, who first started experiencing panic as a child, feltthat her integrity was under attack when her GP suggested she had a motive for being ill:

2 In Australia, a General Practitioner (GP) provides person centred and continuing whole person health care toindividuals and families in their communities (The Royal Australian College of General Practitioners 2011).

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He had no idea. I don’t know if they even knew then. I don’t think panic attacks wereeven thought of then. And he said to me, “You’re only doing it for attention” … And Isaid, “No I’m not. I don’t care what you say; I’m not doing it for attention.”

Helen also encountered negative judgements from her GP, a man she had previouslyrelied upon and trusted with her health care for over 20 years. Helen’s faith in him wasshattered as a result of his response; she felt he had abandoned her when he began to treat herdifferently, suggesting to her that her illness was psychological rather than physical:

He was just a nightmare, he made me feel worse… He wasn’t comfortable in anythingpsychological or emotional. He was good at cutting up, and diagnosing, all sorts ofother things. He didn’t know how to care. He couldn’t empathise; he couldn’t makeme feel safe. I had no confidence in him … At my lowest ebb … all he wanted to dowas send me to a psychiatric hospital. And that was one of my biggest fears.

Although she eventually found a “kind” doctor who made her “feel normal”, the actionsof her former GP had a lasting impact. Her story shows how her negative experience with atrusted and “fabulous” medical practitioner could turn her life into a “nightmare”. Twoyears after this, and still feeling strongly about the perceived injustice, in a chance encountershe confronted her former GP about what he had done:

I said, “Do you realise what damage you did to me? … Now I think you’re a fabulousdiagnostic physician, but you’re hopeless at psychological injuries. Don’t do this tosomebody else, because you’re not good at it.”

Wendy was scathing of the mental health care system in Australia. Her response reflectsmany respondents’ reported experiences:

I really feel mental health is not addressed properly in this country, in particular. Andwe don’t support people with mental health enough, and I just don’t believe thatpeople have the capacity to have that total understanding, and look at you the sameway without saying, “Oh she’s mad.”3

The reported experience of isolation was one where respondents felt as though theywere living in an information vacuum regarding their condition. Many reported havingdifficulty locating information and resources about panic attacks and all respondents’expressed almost identical concerns about the struggles they encountered whenattempting to obtain answers to their questions about panic. This lack of information,they felt, hindered their ability to understand and manage their illness, and alsointensified their sense of “being alone.” Mack confirmed: “Unless you go and see apsychiatrist, I don’t think there’s much help out there at all.” Similarly, Hannah notedthat panic and anxiety disorders are “in the media a bit more—but, no, there is noinformation on how to deal with it.”

Three respondents commented that there was more information available to those whosuffered with depression, compared to panic or other anxiety disorders. Helen confirmed:

3 We highlight that not all respondents had a negative experience with the medical profession during theirdiagnostic and illness journey. Several commented on the fantastic medical healthcare they received. Onceagain, and in keeping with developing a phenomenological model that is representative of the subjectiveexperiences of all those respondents living the phenomenon (Vickers 2001), we find ourselves needing tohighlight quite different experiences—sometimes diametrically opposed—within the same theme. However,this serves to bring a richer, more nuanced, understanding of the lifeworld of employees living with panicattacks.

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I was looking for help. I was looking for support structures. I was looking for something. Imean beyondblue4 wasn’t even around then. There were things for depression, but Ididn’t have depression, I had anxiety, and that was very different. I mean I had friendswho couldn’t get out of bed; I couldn’t get out of bed quick enough. [Laughs] Theywanted to be left alone; I didn’t want to be left alone. It was almost opposite poles. And Icouldn’t find anybody; I couldn’t find anything or anyone who understood this.

Helen’s narrative confirmed her confusion around her condition, and need for usefulinformational support and how the lack in this area made things worse for her. It alsoemphasised her ambivalence with regard to, on one hand wanting to be left alone, whileconcurrently wanting others to help her.

Some respondents also claimed that the lack of access to appropriate healthcare,information and resources, contributed to the severity of their illness. Steven reportedthat his recovery was directly hampered because he was unable to find appropriateprofessional support:

But I think if there would have been better facilities available I probably would havebeen able to get out of it a lot quicker. Maybe I just wasn’t looking in the right places, Idon’t know.

Maya also felt that if she had known earlier what was happening to her, she would nothave struggled as much, especially in her role as a mother:

But I think it did affect me a lot; and I feel that I could have been, maybe a bettermother, if I had known what these things were. Because it’s not really publicised a lot.

Without access to appropriate healthcare and informational support, many respondentsreported an experience of battling their illness alone, something frequently raised by them,and which we observed to be associated with the paradoxical outcome of them withdrawingstill further from the support they so clearly needed.

Discussion and Conclusion

This paper showcases a previously unexamined aspect of employee life—the lived experi-ence of employees with panic attacks. These initial findings have highlighted the negativeimpact that panic attacks can have on many areas of an employee’s life, especially their worklife. What is clear from the stories shared above is that this is a chronic condition with veryserious implications for the life and work of those affected.

Clear evidence has been presented as to some of the difficulties employees with panic mightexperience, especially early in the course of their illness; just getting a diagnosis and medicalrecognition of the frightening symptoms experienced proved frustrating and challenging. Andwithout the clear support and understanding of medical and allied health professionals, thepotential flow-on impacts for employees with panic were numerous: no legitimate illnessdiagnosis to help their understanding of the experience; a lack of access to informational andclinical support to assist managing their condition; and, work-related questions, disbelief andstigma resulting in flawed assumptions and judgements from employers and co-workers. Suchoutcomes also presented ongoing threats to panic sufferers’ ongoing wellbeing, and to their

4 beyondblue is an Australian not for profit organisation that aims to provide awareness, prevention and earlyintervention of depression, anxiety and other related disorders.

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future employment. That there was so much evidence of a lack of recognition of panicdisorder—not just from employers, and family and friends, but by trained medicalexperts—was disconcerting. Such a lack of understanding would certainly make things worsefor employees experiencing panic disorder while trying to maintain employment.

And even when they achieved a diagnosis, respondents’ troubles with panic by no meansended. The symptoms of panic were significant and frightening, and those experiencing panicepisodes tended to withdraw from situations that they felt might bring on a panic episode. Theimplications of this increasing withdrawal were significant and often involved work-relatedactivities, or travel to work. We saw respondents: taking large blocks of unscheduled (sick)leave; moving house to minimise driving to work; avoiding driving so as not to be caught intraffic; avoiding using public transport altogether; avoiding eating in public, being in crowds orother social gatherings; and, still others taking to their beds, or becoming house-bound, perhapsfor years at a time. All of these experiences had direct and negative impacts on these people’scapacity to socialise, to do the work they were employed to do, to get to work, and to otherwiseprovide for themselves, financially and socially, in an adult world.

And respondents themselves recognised early the stigma, and disbelief, surrounding theirpanic disorder, including the lack of understanding as to how seriously they were impacted; thatthey indeed had a legitimate, diagnosed medical condition, and that they needed support inliving with this condition, not exclusion or punishment. Unfortunately, what many of themreported was a strong sense of shame, being stigmatised, and as a result, then being alone tocope with their illness as best they could (often without medical or information support to assistthem), and becoming increasingly alienated and isolated as their life and work journeycontinued. The implications for people experiencing such a life trajectory, especially for theirwork and career, are potentially catastrophic: at one end of the spectrum respondents managedto continue working but only close to where they lived; at the other end, were individuals whobecome completely withdrawn and housebound, isolated completely from work, social andcommunity engagement. Not explored here, and which would be a worthy area for futureresearch, was the financial impact for people so placed: what exactly might the financialimpacts be for them, and their families? How do they pay the mortgage, or prepare forretirement? How do they live, day-to-day? And how many people in Australia (and othernations) are affected? At a time when Australia (and so many other nations) grapple with theheavy burden of an ageing populations, in terms of health care and retirement support, where dothose with panic episodes feature in such an already over-burdened health care service- andwelfare-provision landscape? Panic sufferers are likely to face a life alone with their panic,without the social and professional support that they need, and sacrificing financial, health andcareer goals and plans for their future as a result of feeling trapped by their panic.

Panic is a highly stigmatised condition and, as we have seen, many of those impactedchoose to withdraw from those around them, including their world of work. The work-related limitations that panic conditions might sustain for those who do continue working arelikely to be numerous, including (and not be limited to): people with panic remaining in jobsthat pose a further detriment to their health and wellbeing, such as highly stressful, toxic orbullying cultures due to their panic making it difficult to find other work; panic-relatedtransport and commuting concerns, such as fear of having panic attacks on public transport,or busy freeways, which then may restrict work and career choices; or, foregoing careerdevelopment and promotional opportunities, such as the pursuit of higher education, trainingor higher duties job opportunities needed to progress their careers and enhance their skillbase, but perceived as likely to aggravate their condition.

Panic suffers find themselves in a shrinking world as they gradually cut themselves offfrom people and situations, finding little support, and insufficient information to help them.

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There is frequently a lack of understanding and empathy from those around them regardingthe challenges posed by their conditions. As a result, they fear that others—especiallyemployers—might learn of their condition. Presented above is evidence that employeeswho experience panic are suffering, alone much of the time, fearful, and in silence.They reported specific panic-related difficulties going to work, staying employed, beingat work, moving ahead with their careers and, when employers and co-workers learnedof their condition, being met with derision, and discrimination, vivifying their alreadystrong feelings of alienation, shame and humiliation. Respondents painted a picture oflife with panic being short on social and professional support, with family, friends, andmedical professionals alike finding their condition perplexing, even “silly”. In thelargely unforgiving, economic rationalist, Western work-world, we found little evidenceof sympathy for panic sufferers, and many additional difficulties faced by those whodared to share.

We note several limitations of this very exploratory study that we strongly recommend forfurther investigation. First, this study recruited respondents from suburban Sydney, a largecosmopolitan city in Australia, a developed country, and a location where sufferers of panicattacks could reasonably assume they may be able to access the medical and allied healthservice support they might need (but, that even they had considerable difficulty accessing).What was not investigated at all in this study, and should be in the future, is the lived experienceof panic sufferers in regional and country areas, both in Australia and elsewhere, where medical,social and allied health support provision can be more difficult to access, even for those withroutine and widely understood conditions. We can only guess that the experience for panicsufferers in regional and country areas of Australia, and elsewhere around the world, may wellprove even more alienating, frightening and challenging for those so located.We suggest this tobe an area of further research that is overdue for investigation.

As also noted above, we didn’t explore directly the financial impacts for those experienc-ing panic, such as the long term impacts on their employment, and associated income, andthe specific losses they bore as a result of panic. We remain with serious questions aroundthe long term financial security of those with panic disorder, especially for those with earlyonset of the illness, perhaps resulting to crucial interruptions to schooling, and adultprofessional training and career development that could flow throughout the term of thatperson’s working life. Panic attacks and other anxiety related disorders need to be recognisedby employers and employees as a significant wellbeing issue.

Chronic episodes of panic are one of the most common mental health problems inAustralia (Starcevic 2005) and needs to be recognised for the detrimental impact it has oncommunities, families, workplaces and employees’ wellbeing and quality of life, includingtheir work life. The current lack of research into employee panic attacks, especially withinthe work context, is significant and requires immediate attention. This is so employees, andemployers, might become better informed, and be able to create more sustainable andcompassionate workplaces in support of those with mental health problems, including thosewho experience panic attacks.

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