gendered embodiment and survival for young people with cystic fibrosis

Social Science & Medicine 53 (2001) 1163–1174

Gendered embodiment and survival for young people withcystic fibrosis

Evan Willisa,b,*, Rosemary Millerc, Johanna Wynd

aSchool of Sociology, Politics and Anthropology, La Trobe University, Melbourne, Vic, Australia 3083bFaculty of Health Studies, De Montfort University, Leicester, UK

cCentre for the Study of Health and Society, University of Melbourne, Vic, Australia 3010dYouth Research Centre University of Melbourne, Vic, Australia 3010

Abstract

In the context of improvements in both longevity and the quality of life for people with chronic disease, this papertakes as its sense of problem the differential life expectancy for young men as against young women suffering from cysticfibrosis. From a qualitative study of the transition to adulthood for young people with the disease, a theory of gendered

embodiment is proposed to explain this differential. The social construction of masculinity and femininity as socialpractices resulted in the former being more conducive to survival than the latter in this case. There were markeddifferences between the young women and young men in attitudes to: the meaning of life, death, career and body image;

all of which affected adherence to medical regimen. # 2001 Elsevier Science Ltd. All rights reserved.

Keywords: Cystic fibrosis; Embodiment; Gender; Adherence to medical regimen; Australia

Introduction

Since the Second World War, significant advances inmedical technology have improved the diagnosis andmanagement of chronic illness. Both earlier diagnosis and

improvements in drug technologies have revolutionisedthe treatment and management of a wide range of chronicillnesses. Survival chances have improved significantlyespecially by controlling secondary infections such as

pneumonia which previously had resulted in the death ofmany patients with weakened defenses against illness.The improvements have had several implications. The

prevalence of these chronic conditions in the communityhas increased as more are diagnosed, and the lifeexpectancy has improved dramatically. As with many

other areas of ill health, the focus has changed some-what from aiming primarily at keeping the patient alive,to attempting to enhance quality of life for people with

these conditions. Quality of life, as a number of authors

have argued, has become a legitimate aim of medicalattention (see Charmaz, 1987; Gerhardt, 1990). In order

to maximise this quality of life, it is important to knowthe effects of the disease on the lived experience ofpatients by the provision of detailed information on the

social impact of the disease on the person concerned andthe effects of medical interventions on the lives ofchronically ill people.One of the most dramatic areas of improvement has

been with cystic fibrosis (CF): the most common singlegene disorder as well as the most common fatalhereditary disorder affecting Caucasians. Estimates of

its incidence vary from one in 2500 Caucasians to one in3300 (NIH, 1997). It is the most common cause ofchronic lung disease in children and young adults. In

countries where Caucasians predominate, it is the mostcommon lethal genetic disease of childhood. In thelargest of these, the United States, approximately 25,000

have been diagnosed with CF at the rate of newdiagnoses of approximately 850 per yr (NIH, 1997). CFaffects the exocrine system in the body; producing mucusthat is abnormally thick and sticky and causing major

problems involving the lungs, pancreas and bowel.

*Corresponding author. Tel.: +61-3-94791684; fax: +61-3-

94792705.

E-mail address: [email protected] (E. Willis).

0277-9536/01/$ - see front matter # 2001 Elsevier Science Ltd. All rights reserved.

PII: S 0 2 7 7 - 9 5 3 6 ( 0 0 ) 0 0 4 1 6 - 0

Mucus blocking the pancreatic ducts results in pancrea-tic insufficiency (the absence of digestive enzymes for the

absorption of protein, fat and carbohydrate), as well asinadequate absorption of nutrients. This can result in avoracious appetite but inadequate weight gain. Mucus

that is thick and sticky sits in the lungs and if notremoved, results in over-inflation of the air sacs causingreduced elasticity. Lung damage is affected also bycontinuous infection of the bronchi leading to gradual

weakening of the bronchi walls, deterioration of thelungs, and death. (see Hopkin, 1998; Orenstein, 1997).As a disease, CF is highly variable in its presentation,

severity and course. Some people with Cystic Fibrosis(PWCF) are hardly affected and may not present until theyare in their second or third decade of life. Most, however,

are more severely affected and may experience gastro-intestinal and/or pulmonary complications from the out-set. The main determinant of both quality of life and

longevity appears to be the severity of lung disease as 90%of PWCF die as a result of these pulmonary complications(NIH, 1997, p. 5). Treatment regimens are complicatedand extensive. They involve physiotherapy and/or exercise

daily to clear mucus from the lungs, combined withantibiotics to reduce lung infection. To maintain anadequate weight, a high-calorie diet is necessary, and to

help the absorption of nutrients PWCFmust take digestiveenzymes with meals. Regular exercise, physiotherapy andcareful nutrition are all conducive to survival.

Prognosis has improved markedly with the improve-ments in the medical technologies of diagnosis andtreatment: physiotherapy, digestive enzymes, antibioticsand nutrition. Before 1939, Jackson (1989, p. 9) reports,

most PWCF died before the age of one year. Lifeexpectancy varies slightly from country to country buthas broadly improved from a median of about seven

years in the early 1960s, 14 yr by the early 1970s toalmost 30 yr in 1995 (NIH,1997, p. 5). Many youngpeople with CF (YPWCF) can look forward to a decade

or more of adult life. A few PWCF have lived out anear- normal life span.

Gender and life expectancy

Despite the apparent gains, improvement in survival

and quality of life has been uneven. The problem takenfor investigation in this paper is the gender differential inmortality amongst PWCF. Why do males experiencethis disease with lower morbidity and mortality rates

then females? Furthermore, should the differential beconsidered an issue of the premature mortality of youngwomen or the extended life expectancy of young men?

Firstly, however, it is necessary to establish that thegender differential in mortality is a real phenomenon.Evidence collected from patient data registries in various

countries with a high incidence of CF, confirm thephenomenon. The largest disparity we have found is in

the Australian state of Victoria with its centre inMelbourne. Data from the Australian Cystic Fibrosis

Data Registry (ACFA, 1994, p. 30) for that state, showsthat while the median survival rate for all young peoplewith CF has doubled since 1969, the prognosis is better

for males, with a median survival rate of 41 yr,compared to only 27 yr for young women; a massive14 yr gap in life expectancy. In the Canadian context themedian survival rate difference in 1985–1989 was 36.7

for males and 27.8 yr for women, a difference of 8.9 yr.Indeed the differential had increased over time: in 1970–1979 it was only 6.4 yr (Corey & Farewell, 1996). Most

recent Canadian data suggest that the gap has beenshrinking (Median survival age for 1992–1996 was 30.0for females and 33.4 for males) but now appears to have

stabilized. (CCFF,1996, p. 2). In the United States, themedian survival rate is 28.4 yr for young men and 25.3 yrfor young women, a differential of 3.1 yr (Rosenfeld,

Davis, FitzSimmons, Pepe, & Ramsey, 1997). In theUnited Kingdom, Jackson (1989, p. 9) reports ‘‘in mostreports the survival rate is slightly higher for boys thanfor girls.’’ (See also Dodge et al., 1993.)

In a detailed analysis of the gender gap, Rosenfeld etal. (1997) used a methodological tool called the Coxproportional hazards regression analysis to compare

age-specific mortality rates and to identify risk factorsthat may explain the gender-related difference insurvival. They found that among PWCF of 1–20 yr of

age, females were 60% more likely to die than males, butbeyond 20 yr of age, the survival rates were notsignificantly different. So it seems the main differenceto focus on is apparent in childhood and teenage years.

What biomedical factors have researchers found thatmight explain this gender differential? Jackson (1989, p.9) argues that the reason for the differential has not been

explained. Corey and Farewell (1996) argue that‘‘poorer survival in females was associated with poorerweight, but the interrelation of declining pulmonary

function, weight maintenance, sex and mortality re-quires further study’’. Rosenfeld et al. (1997) go further:

Nutritional status, pulmonary function and airwaymicrobiology at a given age were strong predictors of

mortality at subsequent ages. Nonetheless, differ-ences in the genders in these parameters as well aspancreatic insufficiency, age at diagnosis, mode of

presentation and race could not account for thepoorer survival among females. Even after adjust-ment for all these potential risk factors, females in the

age 1–20 yr remained at greater risk for death.1

1 In our discussions with clinicians about this phenomenon,

we were told things like ‘well, we can’t find anything biomedical

that would explain the differential; we assume the difference is

social’ } the starting point for this paper!

E. Willis et al. / Social Science & Medicine 53 (2001) 1163–11741164

Another study considered whether earlier chronicinfection with the bacteria pseudomonas aeruginosa (PA)

in young women with CF might explain the differential.(Demko, Byard, & Davis, 1995). After eliminating bothpuberty-related hormonal influences and nutritional

status as explanatory variables, the researchers foundthat the median age for both initial positive culture forPA, and for chronic PA infection was lower for youngwomen than young men, but ‘‘this does not account

entirely for the three-year age in survival according togender’’ (Demko et al., 1995, p. 1046). They conclude ‘‘itappears that the gender gap in survival for CF may be

explained in part by earlier acquisition of a morenoxious form of bacteria by females, but not by greaterimpact of this organism on their lung disease. . . otherunknown factors may contribute to gender differences inthe progression of CF lung disease’’ (Demko et al., 1995,p. 1046).

In this paper, we aim to shed light on this medicalmystery by arguing for a more socially based explana-tion. Based on research on the transition to adulthoodfor YPWCF, we attempt an explanation in terms of

gendered embodiment that goes some way to explainingthis phenomenon. Our research into the experience ofYPWCF focused on understanding how they negotiate

the transition to adulthood. Researchers of youth haveestablished that the processes of transition to adulthoodare increasingly complex. As the traditional ‘markers’ of

adult status (such as marriage, leaving home andestablishing a career) have become increasingly ambig-uous, youth researchers are asking how we define adultstatus (Wyn & White, 1997). Young people with a

chronic life-threatening illness are faced with a morecomplex experience of transition, depending on thedegree of severity of their condition. As a result, we

chose to focus our research on how the YPWCFresemble and differ from their peers. Our findingssuggest that the differences between the males and

females’ morbidity and mortality rates are related totheir patterns of adherence to the normative prescrip-tions of feminine and masculine behaviour appropriate

to young people in general. To facilitate this analysis, wehave drawn upon the concept of gendered embodiment,the explanation of which is considered in the nextsection.

The sociology of the body

This paper poses a sociological explanation for thecomplex problem of differential morbidity and morta-

lity. It argues that the reasons for the gender gap inmortality lie in the social organisation of society and inparticular in gender division. Masculinity and femininity

ascribe social meanings to the biological differences andsimilarities between the sexes. We analyse the way in

which these social meanings are taken up, using asociological conceptual framework known as the socio-

logy of the body, focusing in particular on its centralconceptual tool of ‘gendered embodiment’.The last decade has been marked in medical sociology

by the ‘discovery’ of the body as an object of theoreticalattention. The work of Michel Foucault (1976) drewattention to the centrality of the body in social life, atboth the level of individuals and their relationships with

each other, and in the context of social organisation, andespecially institutionalised techniques of social control.Turner (e.g. 1992), by contrast, argues for the phenom-

enology of the ‘lived body’, with the emphasis on‘embodiment’. Foucault, he argues, treats the body as anoutcome or the result of changes in society as a whole

and therefore does not provide an account of ‘livedbody’. The need for a phenomenology of the bodythrough the concept of ‘embodiment’ is a core assump-

tion allowing sociologists to span the dualist divide(nature/culture, mind/body, etc.) in two ways: withoutdescending into biological reductionism and essentialismon the one hand, and the debate about the extent to

which the body is socially constructed on the other.Emphasising ‘embodiment’ has allowed for a focus onhow social contexts have altered and modified the

material biological base (see also Shilling, 1993; Connell,1995). More recent work has also emphasised the needfor empirical as opposed to theoretical elucidation of the

approach (see Nettleton & Watson, 1998; Williams &Bendelow, 1998).Gender is fundamental to embodiment. In our study,

the young people’s social identity tended to centre

around being young men or women who happened tohave CF, rather than vice versa. Connell (1983, p. 17)has argued that embodiment is experienced differently

for men and women: ‘the social presence of a womanand a man are different in kind. While womenconventionally have an image of attractiveness, men

conventionally have a presence dependent on thepromise of power they embody’. An emphasis ondifference between men and women continues to be

reflected in society. All women have to engage in someway with mainstream images of femininity in the massmedia, and with the production of gendered meanings.Likewise do men and images of masculinity

(see Connell, 1995). Although gendered meaningschange over time, there is a consistent theme: the socialpractices of masculinity and femininity involve a

different set of attributes. It is suggested that theseaspects of ‘normative’ femininity are responsible for thefinding that sporting participation amongst women in

the population declines through the teenage years (Dyer,1986). For YPWCF the construction of gender hasadded complexities. Attempts at normalisation may

result in the YPWCF embracing normative masculinityand femininity. Young women are likely to practice

E. Willis et al. / Social Science & Medicine 53 (2001) 1163–1174 1165

femininity in a ‘traditional’ manner, resulting in thembeing less active in their approach to their health and

their lives. The young men also tend to operate in termsof traditional masculine practices which involve taking amore active approach to life and thereby their health.

According to Connell (1983, p. 28), ‘force and compe-tence define men as the holders of power.’ There is amaterial source for this in the practice that actuallyshapes one’s physique, such as boys constantly exercis-

ing, and the usual constraints on girls, or the stress onattractiveness that directs teenage girls’ attention toslimness and diet. Such a finding is replicated elsewhere

(see Macintyre & West, 1991, p. 159; Dyer & Tiggerman,1996; Wertheim, Mee, & Paxton, 1999)The implications of traditional notions of masculinity

and femininity are potentially very negative for thehealth of young women with CF. Constructing andpracticing their gender identity involves YPWCF in a

process of negotiation with their medical regimen. Forexample, although sport may be beneficial for thecondition of CF, many young women are not preparedto place themselves at risk of social disapproval by

engaging in team sports in which they would exhibit‘abnormal’ coughing or occasional spitting. For youngmen, by contrast, spitting is not regarded as a socially

deviant activity on the sporting field but may even be apractice of normative masculinity.In the medical literature, failure to follow the routines

of self-management of the condition (exercise, phy-siotherapy, taking medications, high-calorie diet) knownas the ‘medical regimen’ is called non-compliance.However, as the sociological literature on compliance

suggests, it is inappropriate to simply equate non-compliance with irrationality and vice versa (seeConrad, 1985). Non-compliance is more appropriately

understood from the perspective of the individual,taking account of their ‘embodied subjectivity.’ For thisreason we have preferred the term ‘adherence’ to

‘compliance,’ following DiMatteo, Sherbourne andHays (1993). PWCF develop what Foucault (1988) calls‘technologies of the self ’ in order to survive (see Martin,

Guttman & Hutton, 1988). From this perspective,adherence or non-adherence to medical regimens canbe understood as responses to the requirements ofdiscipline to maintain health, in the light of ongoing

medical surveillance.Conrad (1985, p. 29), for instance, suggests that a

third of patients are non-compliant with drugs and that

this number increases when the regimen is complex,treatment lasts for long periods and there are sideeffects. The regimen suggested for most CF patients is

complex, there is usually no immediate repercussion fornon-adherence, treatment lasts for a lifetime, and somepatients are concerned about side effects. So the lived

experience of CF is one in which non-adherence is likelyto be experienced. Contrary to Conrad’s findings, we

have found that gender differences in adherence/non-adherence, and in the ways in which these are practised,

are significant.

The study

Consistent with its generative and exploratory nature,

the research employed qualitative research methodswhich would enable young people’s meanings andexperiences of transition to adulthood to be expressed

in their own terms. The research population wasrecruited by snowball means and 40 YPWCF in theAustralian state of Victoria, in the age group 16–20 yr,

accepted the invitation to participate. The group of 19men and 21 women was roughly equally divided inhealth levels assessed according to the Royal Children’s

Hospital (Melbourne) health status index of severity (0–4, where a score of 1 is mild and 4 is severe.) All wereinterviewed in depth by Ms Miller, using a semistruc-tured format and transcribed verbatim. While clearly the

degree of severity of the condition is likely to influencesignificantly the ability of YPWCF to negotiate success-fully the pathway to independent adulthood, the severity

does not in fact determine the social process oftransition; instead the two exist in a complex relation-ship.

From the interviews it was apparent that, evenallowing for severity, there was a very differentexperience of CF according to gender. Thematic analysisshows systematic differences in the attitudes and outlook

of the young women and the young men. The areaswhere the most striking difference in attitude wereapparent related to the meaning of life, death, career,

body image and regimen. These are explored in thediscussion below. We explore key gender differences inthe attitudes, practices and experiences of the YPWCF.

Key interview quotations are given as broadly repre-sentative of the emergent themes.

The meaning of life

The young women are more introspective than theyoung men. They want to be happy, they express anunderstanding of the importance of an appreciation of

life and a need for enjoyment. The importance ofhappiness was very evident in responses from the womento questions about their aims in life:

At the moment the most important thing to me is my

health and getting better. That sort of thing, that’sprobably the most important thing } just being ableto control it. I just like to be happy really. [Female,

17 yr, Health Level 4, (Severe pulmonary disease)henceforth F,17,HL4]


maybe you realise that. . . how special life is. . . howshort it is and how important it is to be happy. . .things like that [F,20,HL4]

yeah that’s what I want to do. . . to be happy basicallyand to be happy and to be healthy [F,19,HL3]

The young men, by contrast, express the meaning oflife in very different terms. There is a greater sense of

active participation and goal-directed behaviour. Sixteenof the 19 young men (84%) mentioned work as a part ofthe meaning of life compared to only eight out of 21(38%) of the young women. The question about their

aims in life drew the following responses:

To enjoy it. To make your life what you want it to be.And to make the most out of it. [M,17,HL2]

Living to the most you can, do everything you canpossibly in life. To meet all your goals. . . Live life

through to 70. [M,18,HL3]

Most of the young men were likely to be more active,and less reflective in their approach to life and they didnot refer to health issues which was a frequent concernof the young women. Uncertainty in the future was more

frequently expressed by young women than young menand more frequently expressed by those with greaterseverity of the disease. That CF was affecting their

future and causing uncertainty was expressed by 57% ofthe women but by only 21% of the men. Converselyonly 21% of the women, compared to 52% of the men

felt that CF would not affect their future. Consistentwith this finding, the young men and young women tookvery different approaches in realising their goals in life.

The young men were more outward looking while theyoung women tended to be inwardly focused.

Death

The respondents were asked questions about theirattitudes to death and dying. These attitudes can have acompelling effect on the experience of living with CF. All

the young people in the study were aware of theirreduced life expectancy. The level of severity of thedisease of the participants did affect attitudes to deathand dying, but so did gender. Those who had not been in

hospital, whether male or female, had a greater sense ofcontrol over their illness. Women are allowed theexpression of feelings and emotions, whereas men are

taught to be active, tough, and to control their emotions(Connell, 1983).Many of the young women, said they ‘don’t worry’

and they ‘try to forget about it’, but went on to talkabout fear and the effect of friends dying:

It’s really hard for me they’ve gone downhill soquickly and I think that maybe that could happen to

me. [F,17,HL4]

I had a friend with, a very close friend with CF, whodied a few months ago, and I think that changed a

lot. One minute she was really, well not reallyhealthy, but, she’s always been a lot worse than me,one minute she was here and we were going out andhaving fun, the next minute she was really sick and

dying and I think that, I don’t know that must havehad an effect, a big effect on me. [F,18,HL3]

For most of the young women, having CF caused fear

and uncertainty which affected how they tried to plantheir futures.

. . .CF people don’t really live much further than their

twenties, late teens and I just always thought, oh well,once I get to twenty-one, twenty-two, twenty-threeI’ll probably be dead. That’s what’s told you, that’swhat happens to you, everyone else, you know, that’s

what the books say, that’s what the doctors say. Imean there’s not much of a life for people with CF.[F,20,HL4]

The young women expressed introspective concernabout dying. They seem to be relatively passive aboutthe course of their health and not experience control

over their illness. Almost all of the young womenexpressed feelings of fear and depression, and uncer-tainty toward the future.

The young men, by contrast, at least to theinterviewer, frequently said they ‘‘don’t think about it’’and did not express the feelings the young women had.One young man talked about his depression and fear

when the first person he knew died, but has sinceapproached the concept of death and dying philosophi-cally:

. . .I don’t think about it that much though. It’s a bittoo deep for me. [M,17,HL2]

When asked if his experience of the death of a large

number of friends would affect his future outlook, oneyoung man replied:

I don’t think so anymore. I just, I mean, there’s beenso many, so many of them that have gone that it’s

almost normal for me now. But yeah, I see kidsyounger than me passing away who I don’t evenknow and so it doesn’t affect me as much any more.

[M,19,HL2]

Another interviewee had lost two brothers to CF andexpressed shock when his brother, closest to him in age,

died, but he has coped with this by ‘putting it to oneside’ and ‘not worrying’:


It hit me really hard, but you know, just go over thathurdle and keep goin’. I put it to one side a bit, but

never forget sort of thing so it doesn’t worry me, if ithappens it happens, I can’t do much about it really.[M,18,HL3]

Another said:

I don’t know, maybe I’m an emotional rock orsomething. (laughs) I’ve got no idea, just I choose not

to think about it. I mean I’m not the type of personthat will go out of my way to worry about myselfcause you know I’ve got too much on my plate. Idon’t know whether it’s subconscious or what, it’s

just something I don’t do, I don’t worry a lot.[M,19,HL3]

The difference between the two groups was evident inour study. Many (but not all) of the young women

expressed feelings of depression, fear and an uncertainfuture in which they would not invest and theymaintained close links with other young women withCF. The young men acknowledged they were ‘hit hard’

by death but did not express any further feelings. They‘did not think about it’, and did not associate with otheryoung people with cystic fibrosis ‘outside the hospital’.

A sense of denial allowed them to invest in the future inways different to the young women.

Career

There were also differences in career expectations andperceived future of the young men and the youngwomen. One measure was the extent to which they sawthe disease as a factor affecting career choices. Only 17%

of the men compared to 76% of the women took theeffects of the disease into consideration.The following comments by young women in answer

to questions about their future plans suggest that theywere less interested in a formal career and investing inthe future than the young men:

It just depends on what, I haven’t really got anyplans. I just, whatever I decide to do. Don’t know if

I’ll go to university or what. [F,17,HL4]

Preferably something where I’m working for myselfand the hours are right, because it’s sort of hard tohold a normal job if you have to be in hospital, thingslike that. I’d really like to do photography, like have

my own thing. I was just going to do Year 12 andthen do little courses like things I could do fromhome like say, you know, a nail course, things like

that. [F,16,HL4]

Well I don’t know, you get sort of down aboutthings. I just sometimes feel I haven’t done much

with my life. I don’t really know what I’m going to bedoing in a few years from now, if I’ll have a career or

if I’ll still be doing the same things as I’m doing now.[F,20,HL4]

For the young women health was often a greaterpriority than career:

I was looking at more part-time work due to my CFand having CF-that I’d need more time to do physioand to keep my health, keep it 100% because I would

have to put in so much at work and not wanting themto know that I had CF. So I was reluctant to get full-time work and when I did there were doubts in my

mind. [F,19,HL3]

The young men tended to be more definite about theirplans for the future and had higher aspirations forcareers:

This is what I want to do. This is my grand plan.Finish Year 12, get good marks in graphics, go touni. Take a year off maybe (laughs) whatever, go to

uni, do my uni course, get good grades in my unicourse. Go to an established graphics firm, offer themmy services, maybe get employed there hopefully,work there for a year to two years maybe, then once

I’ve gotten experience, branch out and establish myown graphics design firm. That is if I last that long(laughing). [M,17,HL2]

Health was less of a consideration for the young menthan the young women. Although most thought CFwould limit their career and life options, they felt they

could manage as they had managed until now.

Some people choose their careers around the fact thatthey’ve got CF, but I’m not bothering to. I’m justgoing to do what I do and see if I cope with it. If I

don’t, then I’ll pick something else because I’ll feelthat I could, I could do quite a few different thingsand do reasonably well at them, It’s just that music

and science (are) two things that I’ve chosen to do. . .[M,19,HL3]

The young men tended to be planning for the futurewhich involved a career, financial independence and for

some, proving their intellectual ability. Even where theyoung men felt that CF may cause difficulties in theirworking lives, they did not let this interfere with their

choice of career. By comparison the young women werevery concerned about their health, which had played agreater part in their lives than their career choices-

perhaps a realistic attitude, especially for those moreseverely affected with CF.


Body image

This theme relates to the social construction of bodyimage and the differences between socially valued bodyshape for men and women. There is little doubt that the

issue of appearance predominates in the media andgreatly influences young people toward socially ap-proved notions of ‘the body beautiful’. For youngwomen, ‘attractiveness’ is equated with slenderness. For

young men, the emphasis is upon being strong andpowerful.One of the problems for people with CF is malabsorb-

tion of nutrients. Because the pancreas is blocked, thosewith CF tend to be thin and to have difficulty gainingand maintaining weight. A major difference between the

young men and the young women was their body image.The young women were not concerned that they werethin. They were aware that there is a link between health

and weight and so several thought a ‘little more weightin case of illness would be OK but not enough to benoticeable’. They thought their weight was adequatewhereas they looked very thin. The young men on the

other hand were not happy with their body image andwere all keen to increase their size and strength.

R: girls feel more confident if they are thin.

I: Do any of the CF girls try to lose weight?

R: Yeah I know of one that does but I mean I can

understand from her point of view why. . .She is just abig build, like she’s I think it’s not from her eating oranything but I always say ‘don’t lose weight cause it’s

good you know to keep a bit of body fat on ya’ butshe’s lost a bit of weight and she looks really reallygood now, really really healthy and that so I think it’sgood just for her confidence sort of thing [F,16,HL4]

One young woman summed up the female attitude to

body image when describing her sister who has CF andappeared very thin:

She’s got a very nice figure, good figure,yeah.[F,20,HL1]

For the young women, a slender body shape wasregarded as most congruent with health and attractive-ness.

There was a striking difference in the attitude of theyoung men to body image and body shaping. Allmentioned wanting to be more muscular and stronger to

conform to normative masculine notions of a healthybody image:

. . .it gets me down in two ways like the fact,compared to everyone else I’m short, then I’ve alsogot the added bonus of being really thin. Me, my calf,

the tops of my legs compared with some, it’s like, twoof my calves would be one of their calves and so on.

That’s a real hassle, plus sort of like the fact that girlsdon’t exactly go for little scrawny guys. So I don’t

know, I don’t know actually. [M,17,HL2]

R: . . . I mean people see you and they say ‘‘oh, a bitskinny and that.’’ That’s about all.

I: So you’d like to be a bit heavier?

R: Yeah.

I: Stronger?

R: Oh yeah, a little bit. Everyone wants to be strong,I think. [M,18,HL3]

Sometimes the desire to exercise was not consciouslyfor health but to live up to expectations aboutmasculinity. Asked if he would like to be bigger, one

young man replied:

Yeah, I would, a lot. I mean it’s a combination ofbody image and strength cause I’m not that strong

and I would like to be a bit bigger, you know, Isuppose it’s not so much of a problem, my physiqueisn’t, because, like I haven’t got a girlfriend, you

know, so I don’t have to worry about that, youknow. I’m not trying to impress anyone, so. . ., butpersonally, strengthwise, you know, I would like to

be a bit stronger. It’s like when I go down to [hisfather’s farm], I coughed my guts out when I wasdown there, chopping wood and stuff like that, youknow, you just think to yourself, you know I’d like

this to be a bit easier, you know, whatever, I’d like tobe able to do this but I can’t. [M,19,HL3]

So attempts to achieve the perceived socially desirable

body image is likely to have implications for morbidityand indeed mortality. Attempting to adhere to norma-tive body image had different (largely unintended)

consequences. For the young women the consequenceswere likely to be more negative for their health andlongevity, for the young men, more positive.

Regimen implications

The systematic differences by gender noted above

resulted in different patterns of behaviour in relation tothe often complicated personal actions necessary tomaintain health and prevent morbidity and ultimately

mortality. For all the young people in the study, theregimen suggested by their doctors to maintain theirhealth involved physiotherapy and/or exercise, and

antibiotics for all. Yet the gender differences in howthis regimen was carried out were striking. Given thatthe young women expressed greater concern than the

young men about their health than their careers, onemight expect that they would be very physically active in


order to promote their health. The opposite was foundto be the case; in practical terms the young women were

much less physically active, ate less, had lower healthgoals, and had a greater morbidity rate than the youngmen.

Exercise

Regular exercise is considered to be a very necessarypart of the regimen for a PWCF. In practice, we found a

substantial gender difference in the amount of exercisetaken. A minority of the participants participated in anyform of exercise and few of those on a regular basis

(14% of women and 37% of the men). The exerciseundertaken by the young men was likely to be moreintense, including activities such as running, weight-

training or basketball daily rather than using an exercisebike for 15min daily. Most young women expressed theknowledge that exercise would be good for their health

but stated that they did not actually exercise. Thefollowing responses to questions about sport andexercise were common:

I hate sport. . . I’ve just never been a sporty person, Ijust don’t like it. No, I’m not sort of a sporty personwhich is hard. [F,16,HL4]

While one young woman was told to exercise everyday, her response to us was:

Well, basically, I just can’t be bothered. I should get

bothered but I just can’t be. [F,20,HL1]

Most of the young women had attempted to exerciseon a regular basis but had been unable to sustain it:

I don’t know. The only thing I really can’t do is a lotof exercise. I suppose yes, I cough a lot more duringthe day too. So doing exercise and stuff sort of puts

me off because I know I’m going to cough too muchand get all wheezy and all the rest of it. [F,17,HL4]

For others the intention, if not the actual achieve-

ment, was present:

I try and do exercise. . . I want to get into swimmingand the exercise bike. . . which I’m going to start.’

[F,20,HL4]

The views and practices of these young womensuggest that they have strong social barriers to main-

taining the exercise component of their regimen.Although their negative views of participating in sportand exercise are consistent with their peers in the non-

CF population (Dyer, 1986) their non-adherence in thisarea is undertaken with an awareness that this will affecttheir health. For the young men, by contrast, male

embodiment involves expressing bodily power andstrength through physical activity. As Connell (1983,

p. 18) argues, masculinity in Western society is primarilylearned through organised sport. For the young men

with CF, this happens to have positive consequences forhealth maintenance and ultimately longevity. Many ofthe male participants were involved in exercise, some in

considerable amounts due to their involvement in teamsports such as soccer and football. Exercise was seen as anormal part of life and for some, a substitute forphysiotherapy. There was a realisation that exercise

improved their health and could be used as a form ofhealth maintenance. One young man, asked if exercisehelped clear his congestion, replied:

sometimes it does, sometimes it doesn’t, depends ifyou get, like you feel puffy, you get half way, youstop and have a cough then I’ll keep goin’ until a bit

more puffy, try and have a cough to shift it, so I dothat and it usually does. [M,18,HL3]

Exercise can be used to keep chests clear:

Yeah, if I wasn’t running at all I’d probably get achest flare-up and need to start getting heavy on the

Ventolin and probably some sort of physio or evengo into hospital. I think the running’d do enough butI mean I’ve got biathlons with footy we do everythree weeks. There’s the swimming and the running

and that’s a variation that the club tries to do and ithelps. . .We do a 2 km swim and then a 3 km run 2 kmswim [M,19,HL2]

Others play team sports:

mostly, heaps of footy practice, I train twice a week

and play on Saturdays. . . and then I try and doweights as well every morning if I’m not working outfor half an hour to an hour. [M,18,HL1]

So for the young men, physical activity and exerciseare a part of their lives, much more than for the youngwomen. No male participants said they ‘weren’t sporty’

or ‘didn’t like sport’. This finding is corroborated by anEnglish study by Bywater (1981, p. 538) who found thatall but one of the young men in a group of 27 youngpeople interviewed were enthusiastic about games, but a

number of the young women showed no interest.Nonetheless, severity was an important factor affectingexercise levels: of the 20 young people at HL 3–4 (serious

lung disease), only three exercised most days or werevery active-one young woman and two young men.

Nutrition

The young women frequently said that they ate a lotbut when specifics were explored a different picture

emerged. They did not eat as well or as frequently asthe male participants: 66% of the women reported a


low-calorie diet compared to 21% the men. Asked if sheate breakfast, one young woman replied:

No (laughs) I usually don’t eat. I mean Mum makesme eat breakfast, but if I had the choice I probably

wouldn’t ‘cause I don’t like eating in the morning‘cause I feel you know, I don’t know I just can’thandle food in the morning. And then at school Idon’t know, I’m not usually hungry at school. But I

make sure I eat something even if it’s just a drink or acake or something like that, but I mainly eat from thetime I get home from school until dinner. [F,16,HL4]

Asked when she started eating for the day, anotherreplied:

When I get hungry (laughs), about lunch time, sort ofaround 11. [F,16 ,HL4]

R: The only thing I don’t really do, oh I do it but Iget bored of, is eating. Like if I’m not hungry I justwon’t eat. And that’s probably my own fault why

I’ve lost the weight, but I think I need a break for awhile.

I: Okay tell me what you eat on an average day. Startwith breakfast.

R: Breakfast, about 2 or 3 cups of coffee. . .But withsugar, so that’s alright, and milk. And recessprobably nothing. Lunch maybe vegemite sandwich,

maybe cheese if I’m in a cheesy mood. After schoolprobably nothing, maybe, maybe not. Occasionally Ido but not very often, because then I can’t really fittea in and I just eat a normal tea, like normal.

[F,20,HL2]

The young men by contrast seem to maintain a

regular diet throughout the day:

Oh, it’s reasonable you know, it’s fairly big. But with

my diabetes I’ve got to eat a lot. I’ve got to have a lotof that and then I’ll eat heaps ‘cause I know if I don’t,you know, I’m going to suffer but, yeah, it’s a fairly

big appetite. [M,19,HL2]

Yep, apple for recess, this is now lunch, say tworounds of sandwiches, maybe chocolate big M [milk],

or a soft drink or cordial glass or what ever. Thensometimes chips or something like that, dependswhat I feel. . . . Afternoon tea, I’m usually home by

then, have chocolate milk, chocolate slice, teausually, vegetables with some sort of meat.[M,18,HL3]

Breakfast, I have a couple of bowls of cereal and thenI have recess, I’ll have probably twice as much as

anyone else and then lunch I have twice as muchagain. Then I come home and I eat again. Mum

always says, you know, don’t eat before tea but I canalways fit tea in, easy. [M,17,HL1]

Sometimes two bits of toast, six weetbix [cereal

biscuits] and orange juice. Then for lunch I mighthave a few rounds of sandwiches, yoghurt, whateverelse I can find and just some icecream or yoghurt and

for tea, whatever mum cooks for tea. Sometimes wehave a roast or steak and veggies.

I: and what about snacks in between?

R: Oh, yeah sometimes I just get a frozen pizza andeat that whole. [M,18,HL1]

There is a very different attitude to eating by the twogroups and a difference in eating patterns. The young

women neither eat as much nor do they appear to havethe same enjoyment of eating as do the young men. Thecultural emphasis on thinness for women has been

linked to the finding that nearly 40% of women reportbeing on strict diets at any one time (Paxton et al., 1990,Centre for Adolescent Health, 1992). The desire for

slimness amongst young women in general, is connectedwith social acceptability (Carroll, Gleeson, Risby, &Dugdale, 1986). In this sense, young women with CFmust openly challenge the social discourse about women

and food by eating large amounts of food in order tohave adequate nutrition

Physiotherapy

This is a crucial component of the health regimen for

people with CF, because of the necessity to maintainclear lungs. This can be achieved either by a physiother-apy technique known as postural drainage, or by the use

of a special device known as the ‘pep’ mask. Young menwere more likely to use physiotherapy as part of theirregimen or than young women. Of the 40 young people

interviewed, 30 did not carry out the suggested medicalregimen (usually once or twice a day)-18 of these werewomen and 12 were men. Of those who did not follow

the suggested physiotherapy regimen, nine did not everuse it, and seven of these were young women. Only tenrespondents were fully adherent with the suggestedphysiotherapy routine-seven of these were men and

three were women.A number of the young women reported periods in

their past of denial of their disease and of stopping their

regimen altogether. This included physiotherapy, pos-tural drainage or pep mask, and for most medication(antibiotics). Asked whether they followed their regi-

mens, these responses were common:

I just didn’t want to do it, I didn’t see the point really.[F,17,HL4]


I was at a stage where I was sick of taking a wholeheap of drugs, sick of taking all these tablets and I

thought ‘well forget it, I don’t want to do it anymore’ and that’s why I did get sick. [F,19,HL3]

In the last few months, you know, I just tried to, tried

to pretend that I didn’t have CF. . . It meant notlooking after myself, not, just thinking, you know,I’m not that bad. I’ll be OK, you know. [F,20,HL4]

The young women’s lack of interest and motivation toexercise left them very vulnerable. Such periods of denialwould seem to play a large part of the explanation of thesharp and sudden deterioration in the health of some of

the young women. The young men all expresseddifficulty with maintaining the physiotherapy routineand all organised their own routine varyingly from the

recommended medical regimen, but most of them werelikely to do some physiotherapy.All of the respondents have taken on the self-

management of their medical regimen, most starting atapproximately 14 yr of age. For most, the doctor orphysiotherapist suggested and encouraged this self-

responsibility. Yet the effect of gendered embodimentwas apparent with regard to regimen adherence. Theyoung women were less physically active, ate less,undertook less physiotherapy, and had greater morbid-

ity rates than the young men. A number of youngwomen referred to a period of total non-adherence tothe medical regimen. Some young men who stopped

physiotherapy consciously replaced it with exercise,although the level of exercise may have diminished withtime. None referred to a period of non-adherence where

medication and physiotherapy were abandoned,although one chose not to take antibiotics continuouslyand had never done physiotherapy at home.

Conclusion

The answer to the question of higher morbidity and

mortality rates for young women as compared to youngmen is a complex one. Our qualitative research suggeststhat an important part of the explanation may lie in the

differing embodiment through the social practices ofmasculinity and femininity. These young people sociallyconstructed their identity firstly as young men andwomen, and only secondly as people living with CF. The

consequence was attempts at adherence to the prescrip-tions of normative masculinity and femininity. Wherethese prescriptions conflicted with the requirements of

the medical regimen for CF, the latter often took secondplace. The disjunction in adherence requirements fornormalising in relation to the social practices of

femininity as against adherence to medical regimenswas greater for the young women than it was for the

young men. Our argument is that the greater disjunctionfor the young women is key in accounting for the gender

gap in survival.Our research showed systematic differences in young

men and women’s experience of CF. The young men in

the study were likely to maintain a more positiveattitude in their everyday experience of living with thedisease. This experience appears to be the result of thesocial practices of masculinity } in particular an

avoidance of expression of emotions about death andinvestment in their future. It also involved physicalactivity which helped to maintain health.

Young women in this study were less likely toexperience living with CF positively. This appeared tobe the result of the social practices of femininity which

entailed a degree of passivity to their situation and anemphasis on the attractiveness of a slender body shape.The outcome of this was often a deep emotional reaction

to death, a decline in health status and a lack ofinvestment in the future. The lack of physical activityand the need to look attractive rather than be active hada powerful effect on morbidity. One of the consequences

of gendered embodiment is that it legitimates behaviourfor young men that is conducive to their health while atthe same time tending to involve practices for young

women that endanger their health, reducing their lifeexpectancy.Previous researchers have sought to account for the

gender difference in survival in physiological terms(poorer weight, declining pulmonary function, weightmaintenance, nutritional status, and airway microbiol-ogy especially chronic infection). Our research suggests,

in addition, the need to include a socially basedexplanation (on the terrain of gender rather thanbiological sex) which may account for, or indeed

highlight, the physiological differences noted. Certainlyour results, analysed in terms of gendered embodiment,point to a complex interaction between the social and

the biological in determining the experience of livingwith CF.There is an increasing body of evidence that particular

social practices of masculinity may be injurious to health(such as alcohol abuse, see Fletcher, 1993) andcontribute to a lower male life expectancy in general.In the case of CF, however, other particular social

practices of masculinity (like exercising) may in fact beprotective of health of the young men. A similarargument may exist with the social practices of

femininity. While in the general population, these socialpractices may be protective of the health of women, inthe specific instance of CF, our findings suggest that

femininity may have injurious effects.But should the gender gap in survival with CF be

thought of as premature mortality for young women or

excess life expectancy for young men? Our qualitativestudy suggests that the gap is more explained in terms of


the premature mortality for women. Further researchcould utilise other research methodologies (such as

more quantitative design) to explore the complexrelationship between gendered embodiment and healthoutcomes.

And last, there is the issue of the generalisability ofour results. Why should the gender disparity beapparently so much larger in a Victorian and Australiancontext? Our study was not a comparative one, but

sought within the paradigm of qualitative healthsociology, to account for the differences we found inthe specific geographical context. Such a comparative

study could be pursued. The answers should be soughtin how such gendered embodiment varies in differentsocial and cultural contexts.

Acknowledgements

This paper is dedicated to the memory of SimonRhoden (son of Rosemary Miller) who died fromcomplications due to CF on 8/8/00, aged 25.

The project was funded by the Research andDevelopment Grants Advisory Committee of theAustralian Commonwealth Government’s Dept. of

Health, Housing, Local Government and CommunityServices. We are grateful to Dr. Tony Olinsky, Directorof the Thoracic Unit at the Royal Children’s Hospital in

Melbourne, for technical assistance especially in devel-oping scoring of severity of the illness against which toassess transition. The overall research is directed atassisting in improving practice; to provide assistance to

young people with CF in conjunction with their familiesand medical advisers in facilitating the pathway toindependent adulthood.

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