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Identity, and Selfi Adapting to Impairment Kathy Charmaz

'I'ltis selec'tir)n trQCe.s relatiortsltilt.s beln,ean bodt' nntl sell . Chrortic' illness frtrt:es nev, relu- t ior tsh ip s bc I v: t' e r t I x t dt' ut t d s el l'. A litnc t i o rti r t g bodt,t'urr no lotrplt'r be token lctr grnnted. SocicLl and pt,rsonal iclcntilt, ure (:otrcepls tlrctt littk tlrc rclation-ship-s bt'tv,een bcrly attdsel. As Katlry CJxtntta:. point.s oul ltere, tJrc bodt, is not the sante es tlrc sel'. Thougltts, httages, and fbel- ings about r-tne'.s body ntat, at'lect ilrc -seLf', and social identif ications ol the body ofien shape persortal iderrtif ic:atiorts. Preswnably lrcalthy peopb nnre or less ussunrc bodily fintctioning arul a hanttony betu,eert bctdt, and self-more so t,hen healtlt artcl f-ir rrcss bloont, less so t,hen cotl('en1s about eppeu,ance and appeal flood cott.sciottsrtess. Irt cotira-st. that hannony be- ttectt bod.t, arrcl ,sell' beconrcs problentatic tt'lten peotrtle are chrotically ill.

Tlil.s paper dran.,s explicitly upon a syrnbolic tttleract ic)nist perspective, which emphasizes tl,te rtteanings ancl intentions people construct t.hrough their interactions. Prior exposure to Language and gestttre-social and cultural ex- perience-is crttcial in this perspective. Sym- bolic interat:tioni-st.s ,rttrrr.r" tha't people draw upon tlrcir exlterience, including their knowl- eclge of- language and gesture, as they interpret tlteir liyes and worlds. Because huntan beincs have language, minds, and selves, *" ci, evaluate ourselves as we would any other ob- iect itt our tvorlds. In this perspective, we are actir)e ogetTts in creating our actions and in de- litting ourselves. Inok for how the interview

The Body, Identity, and Self Adapting to Impairment 95

participants reevaluate tlrcir bodies and them- selves as they experience altered boclies.

Chronically ill people, like anyone else, nuLy observe hov,t others yiew thent but reluse to slrure thut y,ietu. FIere, tlu: soc'iul identificcttion is incctngruent wilh lhe personal identi'f-ita- ticyt. Note the conditiorrs under v,.,hich lhese interview participcLnts acceplecl or rejectecl tlte social identilications thrust upon thent. Surely experiencing bodilv feeling-s -such as f atigue or discomlitrt so great thot they ccuutot be ignored affbcts hotv individuals respond to social itlen- tifications. In lceeTtit'tg tt,ith tlrc ernphasis ort enrcrge n t p ro c e s s e s in sy n tb oli c' il t t e ra t: t i oyt i s nt, Chttmtaz, points otil that chronicalh, ill people fornt irhentitl' goals in relation to tlrcir lpalth as well as Io their lives. These gctal.s nny sltif-t cLrtc! clnnge as their experiences clnnge artd as tltey reiltterprel tlrcir liyes.

5 " , ' i , r . , , c h r o n i c i l l n e s s u n d e - r m i n c s c a r l i e r - a s s t r n r p t i o n s a b o r - r t b o d i l y f u n c t i o r - r i n g , t l ' r e rclation bctr,veen boclv and self, ancl scnse ol' w h o l e n c s s o f b o d v a r n d s e l f ( c f . B t r r y 1 9 8 2 ; B r o d - v 1 9 8 7 ; C h a r m a z . 1 9 9 1 ; 1 9 9 4 a ' , 1 9 9 4 b ; G z r c l o r v 1 9 8 2 ; K e s t e n b a u m 1 9 8 2 ; M o n k s z r n d Frzir-rkenbcrg n.cl.; Mr-rrphy 1987). . .T<r ex- plicate horv the body, identitv ancl self inter- sect ir-r illness, I or-rtline one mocle of living wrth impairment or loss of boclily fr-rnction: aclapting. By adaptir-rg, I me;rn altering life ancl self to accommodate to physical losses and to reunifui body and self accordingly. Adapting implies that the individual acknor'v- ledges impairment and alters life and self in socially and personally acceptable ways. Bodily limits and social circumstances often force adapting to loss. Adapting shades into acceptance. Thus, ill people adapt when they try to accommodate and flow with the expe- rience of illness.

Other ways of living with illness include ignoring it, minimizing it, struggling against it, reconciling self to it, and embracing it (see Charmaz 1991;Radley 1991). Through ignor- ing and minimizing, ill people may preserue the sense of unity between body and self that they had before illness. But constant strrrggle against illness makes preserving it much harder. Not only do people fight illness, but also they fight the identifications that come

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96 Secdon 2 | The Self in Social Context

with it. Lateq, they may reconcile themselves to illness, sometimes for years. Then they tol- erate it-within limits. These people acknow- ledee and attempt working around their ill- ,r"ri, b,rt they n-either accept it as defining them nor do they accept others'pronounce- ments of whom they now should be. In con- trast, embracing illness means seeking refuge in it.

People with chronic illnesses often experi- ence all these ways of living with impairment at different times. All may be necessary and natural responses to their experience, de- pending on their situations. After long years of ignoring, minimizing, struggling against, and reconciling themselves to illness, they adapt as they regain a sense of wholeness, ot unity o{'body and self in the face of loss.

Some people never adapt to impairment; others refuse to admit that they have suffered losses (see examples in Albrecht 1992; Her- z l i c h 1 9 7 3 ; R a d l e y a n d G r e e n 1 9 8 5 ; 1 9 8 7 ; W i l l i a m s 1 9 8 1 a ; 1 9 8 1 b ) . S t i l l o t h e r s a d a p t t o their in-rpziired bodies only long after suffer- ing losses. Many people, however, must adapt time anct ergain zrs they progressively experi- e n c e f a i l i n g h e a l t h , w h e t h e r t h e y s l o w l y d e - cline or rapidly plr-rnrmet during acute epi- socles, crises, or complications. In whatever wer.v pcoplc live rvith imperirment, they prelbr tcl have certain future idcntities over others, zrltl'rough thcir preferences may be wholly un- a t t z i i n a b l e .

Adapting to an irnpaired body means re- solving the tension between body and self elicited by serior-rs chronic illness. It also means defining integration and wholeness of being while experiencing loss and suffering. These meanings of adapting to an impaired body becorne implicit criteria for "success- ful" adaptation with the taken-for-granted proviso that the person also remains as inde- pendent and autonomous as possible. Hence, successful adaptation means living with ill- ness without living solely for it. Adapting to physical loss ebbs and flows and repeats itself in similar forms as further episodes, compli- cations, and additional illnesses occur.

Studying adapration to loss through im- pairment illuminates tensions within con- tinuing metaphors of opposition:l the self versus the body, struggle versus surrender,

the idealized body versus the real, erperr- enced body, social identifications versus self- definitions, objective reality versus subjec- tive experience, struggling with versu.s strug- gling against illness, invisible disabilitv ver'- sus obvious impairment, freedom of bodily movement versus physical constraint ancl cle- pendence, and bodily control versus lo.ss of function. Though quelled before, these ten- sions reemerge with each disruptive episode or r.vith deteriorating social conditions.

Adapting to impairment consists of three major stages. First, it depends upon expen- encing an altered body that in turn lc:ids to defining inpairment or loss and to n-rakins r e a s s e s s m e n t s . W h e t h e r c h r o n i c a l l y i l l p e o - ple objectilv their bodies and stluggle against illness or subjectively integrate their ill bod- ies with self shapes whether or not thev cre- ate a sense of wholeness of body and .self and of their lives. Bodily appearance aff'ects social i d e n t i f i c a t i o n s a n d s e l [ - d e [ i n i t i o n s a n d , therefore, how an individual experiences an altered body. Secor-rd, assessing one'.s altered body, appearance to self and othcrs, and the context of lite resrllts in changing oncls fr-rture identitv accordingly. III people make identitr , trade-ofts, in other worc'ls, opting for one i identitv over another, zrs they lveigh theirsitu- , a t i o n s z r n d l o s s e s a n d g a i n s . E v e n r v h e n . torced to accept a lcsser identity than pre' viouslv. thev often redefine their decisions as p o s i t i v e a n d f i n d v a l u e i n t h e i r r e s t r i c t e d l i v e s . T h i r d , s u r r e n d e r i n g t o t h e s i c k b o d r means the end of the quest for control over illness. At this point, people open themselvej to experiencing their illness; they define unltl of body and self through this experience.

Theoretical Framework This article takes a svmbolic interactiodst

pe|spective on identity and draws upol 11; i o s o p h e r S a l l v G a d o w i t t q s z ) c l a r i f i c a t i o n l the ielarion belrveen bodv and self. Persona i d e n t i t y r - e f q r s t o t h e w a y a n i n d i v i d u a l 0 r fines,

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o t h e r s ( s e e H e w i t t l g g ) ' F o l l o w i n g r ' -u L I l c f S \ S g c r - r g w l t L t > 1 2 , . t u r r v Y " ' e - - 1 . B u r k e ( 1 9 8 0 ) , t h e c o n c e p t o 6 1 4 " n 1 i t r t m f l " ' itly takes into account the ways l'op-':)a t o d e f i n e t h e m s e l v e s . W i s h e s ? r€ t o u t w tt o d e f i n e t h e m s e l v e s . W i s h e s ? r€ t u u ' * , f e e l i n g s a s w e l l a s t h o u g h t s ' I t p o s s t " * '

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oeople usually try to turn their wishes into intentions, purposes, and actions. Thus, they are motivated to realize future identities, and are sometimes forced to acknowledge pre- sent ones. However implicitly, they form identity goals, i. e' ,preferred identities that oeople assume, desire, hope, or plan for ichur^ot 1987). The concept of identity soals assumes that human beings cl'eate ileanings and act purposeftrlly as they inter- pret their experience and interact within the world. Some people's identity goals are im- plicit, unstated, and ttnderstood; other peo- ple have explicit preferred identities. Like bther categories of people, some individuals with chronic illnesses assume that thev will realize their preferred identities; others keep a watchful eye on their luttrre selves and e m e r g i n g i d e n t i t i e s a s t h e y e x p e r i e n c e t h e present (see also, Radley and Green 1987).

G a d o w ( 1 9 8 2 ) a s s u m e s t h a t h u m a n e x i s t - ence essentiallv means embodiment and that the self is inseparable fi-om the body. . . .Yet, as Gadow points or-rt, body and self, although inseparable, are not identic:rl. The relation between bocly and self becomes particularly problematic for those chronicallv ill people who realize thzrt thev have sul'ferecl lastine b o d i l v l o s s e s . . . . T h e y r i s k b e c o m i n g s o c i a l l i identified and self-defined exclusively by tl-reir impaired bodies (Bury 1988; Goffman 1 9 6 3 ; L o c k e r 1 9 8 3 ; M a c D o n a l d 1 9 8 8 ) . T h u s , chronically ill people who move beyond loss and transcend stigmatizing negative labels define themselves as much more than their bodies and as much more than an illness ( C h a r m a z 1 9 9 1 ) .

Gadow argues that illness and aging result in loss of the original unity of body and self and provide the means of recovering it at a new level. She assumes that an orisinal unitv e x i s t e d a n d i m p l i e s t h a t l o s s a n d r i c o u e r y o f unity is a single process. Howevel what unity means can only be defined subjectively. Some people may not have defined themselves as having experienced such unity before illness, or as only having partially experienced it. Furthel with each new and often unsus- pected bodily impairment, people with chronic illnesses repeatedly exoerience loss of whatever unity between body and self they had previously defined or accepted. Thus, at

The Body, Identity, and Self Adapting to Impainnent 97

each point when they suffer and define loss, identity questions and identity changes can emerge or reoccur. Throughout this arricle, I deal with the loss of body-self unity and its recovery through acknowledging bodily ex- perience and opening oneself to the qr-rest For harmon,v between body and self.

In order to understand how loss ancl recov- ery of body-self unity occLlrs, we must under- stand ill people's meanings of their bodily ex- periences and the social contexts in which they occur (Fabrega and Mannin g 1972; Ger- h a r c l t 1 9 7 9 ; R a d l e y a n d G r c e n l 9 B 7 ; Z o l a l 9 9 l ) . S r - r c h m e a n i n g s a r i s e i r - r d i : r l e c t i c a l r e - l a t i o n t o t h e i r b i o g r a p h i e s ( B u r - v 1 9 8 2 ; 1 9 8 8 ; 1 9 9 1 ; C o r b i n a n d S t r a u s s 1 9 8 7 ; 1 9 8 8 ; D i n g - w a l l 1 9 7 6 ; G e r h a r d t 1 9 8 9 ; R a c l l c v 1 9 8 9 ; R a d l e y a n d G r c e n 1 9 8 7 ; W i l l i a m s 1 9 8 4 ) a n c l a r e m e d i a t e c l b y t h e i r i n t c r p r c t a t i o n s o f o n - g o i n g e x p e r i e n c e s . P r c s e n t n r c a n i n g s o f t l r c ill body and self develop fion-r, br-rt art,' not determinecl by, past discourscs of nreaning a n d p r e s e n t s o c i a l i d e n t i f i c : r t i c l n s ( B l r r r . n e r - 1 9 6 9 ; G o f h r a r - r 1 9 6 3 ; M e a d 1 9 3 4 ) .

A s c h r o n i c i l l n e s s e n c r - o a c h e s u p o n I i f c , p e o p l e l e a r n t h : r t i t e r o d e s t h e i r t a k c n - l b r . granted preferred identitics as rvell as their' h e a l t h . F u r t h e r t t h e y r - n a y d i s c o v e r t h a t v i s - i b l e i l l n c s s a n d c l i s a b i l i t v c a n l e a v e t h c r n u , i t h a mastel' statLls and overriding stigr-natized ider-rtity. Beceruse ol theirphysical losscs, they reassess who they are and wl'ro they can be- come. Subsequently, they form identitv goals as they try to reconstruct normerl lives to whatever extent possible (Charmaz. 1987; l99l). Frequently, people lvith chronic ill- nesses initially plan and expect to l'esllme their lives unaffected by illness, or even to ex- ceed their prior identity goals. As they test their bodies and themselves, ill people need to make identity trade-offs at certain points, or even to lower their identity goals system- atically until they match their lessened ca- pacities. At other times, they may gradually raise their hopes and progressively increase their identity goals when they meet with suc- cess. Therefore, both raised or lowered iden- tity goals form an implicit identity hierarchy that ill people create as they adapt to bodily loss and change (Charmaz 1987)2.

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98 Section 2 * The Self in Social Context

Fxperiencing an Altered BodY Experiencing an altered bgdy m.ea1s that

oeopl^e with illnesses note physical changes and diminished bodily functions (cf' Char- maz l99l;Kahane 1990; Kelly 1992; Yoshida lg93). Thus, experiencing an altered body means more than having or acquiring one. It means that these people begin to define bod- ily changes or the illness itself as real (if al- ready diagnosed) and to account for how changes and symptoms affect daily life.3 Dis- tressing bodily sensations and impaired functions as well as disquieting feelings about body and self give rise to defining bod- ily changes. The unity of prior embodied ex- perience has been shaken; assumptions about body and self have been jolted (see also, Olesen et al. 1990). At this point, people with illnesses compare their present body with their past body; they assess the differ- ences between then and now, and they meas- ure the costs and risks of ordinary activities. BeFore becoming ill, rnost people took their bodies for granted as functioning instru- n r e n t s o r v e h i c l e s s u b j u g a t e d t o t h e s e l F . T h i s t a k e n - f o r - g r a n t e d i n s t l ' u m e n t b e c o m e s t h e yardstick against which they compare their altcred bodies. A fofly-one-year-old wonran w h o h a d a s t h m a d e s c r i b e d t h e b o d i l y c h a n g c s s h c ' e x p e r i e n c e d r v i t h i n t h e l a s t y e a r :

I really cor-rldn't go {br a r.valk, r-rn-r, the rvay I used to, so I felt like my body had bctrayed me. B1z that time I had, ever-r though I hadn't really been diagnosed, I . . . knew that thinss thal I used to clo eas- ily withor-rt any stiain at all were a chal- lenge. And so I was real arvare of it. And also, probably at that time, I'd probably been running a low-grade fever for a long-tirne, and I knew it. . . . So I mostly felt like my body was sort o[ foreign terri- tory-it was not the body that I knew.

Like others, this woman experienced her body as more than altered-she felt it was alien. Thus, she experienced a radical disrup- tion of body and self. Experiencing this bod- ily alienation leads people to rettrinking ex- plicitly their previously held norions of body and self. This woman and several men with respiratory disease found that rapid weight gain accompanied plummeting physical ac-

tivity. Mirror images of the body further call irito question a previously taken-for-granted self. She said, "So I'm hear,y-I'm hear,y irr n way I've never been before." Experiencins multiple bodily losses in a short period intenl sifies feelings of estrangement, of separation from one's past familiar body, and of loss of self. The body once viewed as a taken-for- granted possession to control and master has spun out of control. At best, the body is now a failed machine, an obstacle to be repaired, overceme, or mastered. At worst, it has be- come a deadly enemy or oppressor (cf. Char- m a z 1 9 8 0 ; 1 9 9 4 b ; G a d o w 1 9 8 2 ; H e r z l i c h 1973; Herzlich and Pierret 1984; Williams 1 9 8 1 a ; l 9 8 l b ) .

When wholly unanticipated, even middle- aged people may view their bodily changes with a sense of betrayal. They may describe their past bodies as "invincible," "indestruc- tible," and "immortal" and express regret and anger about their losses. In turn, their anger and regret intensif,i when ill people feel that their illnesses control them. They have lost control of their body as an obiect thev as- s u m e d t h e y c o u l d m a s t e r : M o r e o v e r , t h e y v i e w t h e m s e l v e s a s o v e r t a k e n b y a n a l i e n force. The woman mentioned above stated:

It has probably slowed me down, and I'm very aware that I hzrve this and if I really want to be as healthv as I can be. it's-it r v i l l c o n t r o l w h e r e i l i v e ; i t w i l l c o n t l o l what kir-rd of work I do; it will control who I can be aror-rnd-l cau't be aror-rnd someone who insists on rvearing per- fume; I can't be around anyone who smokes anything at all; I can't be around people who insist on having certait.r kinds of chemicals.

Perhaps more destructive than the anger is the guilt and shame followed by self-abase- ment that ill people with failing bodies expe- rience: guilt because they share cultural stan- dards of ageless bodily perfection and comect appearance (cf. Glassner 1988); shame be- cause their very existence testifies to a failure to meet these standards. Self-abasement fol- lows and intensifies'the humiliation. Roberl F. Murphy (1987 , p. I I 1) obser-ves:

In mv middle ase. I had become a chang"eling, the loiof all disabled people. They are afflicted with a malady of the

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body that is translated into a cancer within the self and a disease of social re- lationships. They have experienced a transformation of the essential condition of their being in the rvorld. They have be- come aliens, even exiles in their own l a n d s .

For a time, people with chronic illnesses may make firm separations between their im- paired bodies and their self-concepts (cf. C h a r m a z 1 9 9 1 ; R e g i s t e r l 9 8 7 ; W e i t z l 9 9 l ) . That way they can keep their illness separate front themselves and their lives. The extent to rvhich they keep it scparate and their stance about doing so is crucial. By keeping illness separate, they allav clisquieting feelings about themselves ancl their bodies.

Stn-rggling against illness differs from strr-rggling with it. When people struggle a g a i n s t i l l n e s s , t h e y v i e w t h e i r i l l n e s s a s t h e enemy with whom they must battle (cf. Char- maz 1980; 1994b). The.y hope to regain their past identities and to r-estore a now missing sense of self. Usuallv at this point, they can neither fbce nor accept more restricted lives ancl lesser identities than what thev had be- f o r e i l l n e s s .

When people struggle r.r:itft illness, they struggle to keep their-bodies ftrnctioning and therefore, their lives "normal" to whatever ex- tent possible. Hence, they do not give up. In struggling against and with illness, they try to take control over their illnesses and their b o d i e s . G r e g g C h a r l e s F i s h e r ( 1 9 8 7 , p . 1 3 ) d e - scribes how he and his wiFe struggled with c h r o n i c l a t i g t r e s y n d r o m e , i m p l y i n g t h a t t h e y learned to differentiate between body and self, despite their stmggles: "Through the long years of this illness, we have had to struggle every day ro cope with our affliction. rrs the years go by, we are more determined than ever to remain strong. The saying that time heals all wounds is lrue, noi b.iu,rr" wourds, like sand castles, wash away with the first tide but because in time you learn to suruive your wounds." , Thror-rgh struggling with illness, these peo-ple eventually integrate new bodily factslnto

their lives and thelr self-concepti (cf. Char- maz l99l; Corbin and Strauss f987). But un- tll they define the chanees as chronic and ex- Perience their effects aiitv, itt people look for

The Body, Identity, and Setf Adapting to Impairment 99

recovery and can keep illness and therefore their bodies at the margins of their self-con_ cepts (Charmaz 1991; 1994a). Subsequently, they continue to objectify their'bodies and distance themselves from them.a Not onlv do their bodies become objects to mend but ihey are also worksites in which to do it. The situ- ation differs for people who have already struggled with bodily oddities or "psychologi- cal" quirks now redefined and legitimated as bona fide physical symptoms. Their initial di- agnostic relief turns into the sobering experi- ence of adopting their medical label and of defining what it means to them. As they do so, they may make the label their ou'n while simultaneonsly objectiSring their symptoms that fit the diagnostic label. The writer Nancy Mairs (1989, pp. 234-235) redeFines herself and her body as a woman with multiple scle- rosis but also objectifies her body:

N o w I a m w h o I w i l l b e . A b o d y i n t r o u b l e . I ' v e s p e n t a l l t h e s e y e a r s t n ' i n g alternately to repudiate and to control my wayrvarcl body, [o transcend it one rvav or. a n o t h e r , b u t M S [ m u l t i p l e s c l e r o s i s J r i r n s nre right back down into it. "The bod.r,," I ' v e g o t t e n i n t o t h e h a b i t o i c a l l i n g i t . "The left leg is weak," I say. "There's a blurred spot in the right eve." As thor-rgh i t w e r e s o m e o t h e r e n t i t v . r e m o t . e a n d t l ' a i t o r o u s . O r w o r s e , a s t h o u g h i t w e r e i r r - animate, a pr:ison of bone, the dark tower around which Childe Roland rode, wither- shins left, withershins right, seeking to free the fair kidnapped princess: me.

The horror of the unknown-disability and death-prompts the distancing inherent in objectification. Distancing continues as long as the person assllmes that mastering his or her wayward body is necessary to make it acceptable. Relinquishing notions of mas- tering one's body, in contrast, allows a recep- tivity to bodily experience. Arthur Frank (1991, pp. 60-61) reveals the moment when he shifted from objectirying his body to em- bracing it as subject: "I wondered at what the body could still do for me, as diseased as I knew it must be. That day I stopped resenting 'it' for the pain I had felt and began to appre- ciate my body, in some ways for the first time in my life. I stopped evaluating my body and

100 Section 2 * The Self in Social Context

began to draw strength from it. And I recog- niied that this bodY was me."

As ill people objectify their bodies less, they are more open to attending-to the cues their bodies provide. They learn how to pro- tect their bodies and therefore are able to ex- tend their control over their lives. For exam- ple, a woman with lupus erythemato-sus Iearned that she could work at home while she was sick. At home, she could control the temperature, light, seating, and interrup- tions, as well as the pacing of her tasks. When she worked at her clients'offices, she could control little of that. She said:

But see, I've ahvays gone to the client's place tt-l do the work and now when I don't feel good, I'm finding that it's much easier to do it- here at the house. And then I can just do-I can just do it at night; I can do it early in the nrorning. Yeah its too hard to go and sit-sometimes the chairs they n.rake me sit on or the-and it'.s too cold or it's too hot, or it's just real hard. I don't have the patience I used to havc. I lcist tlrat. I used to have a lot of p a t i e n c c ; I c o u l d b e a r a r - r v t h i n g . I d o n ' t t h i n k I w a s e v c n a w a r e o f i t . B u t n o w n t y b o c l y t e l l s n r e . I c u n ' l c o n { r ' o l r n y b o d y .

Bclbre her illness, this woman had ignored boclily discornlbrt. At that time, she had com- nrittecl herself, not only to a demanding work arnd social life but :rlso to a rigorous fitness rotrtine. She had pushed her body to be slim, strong, and taut, as she put it, "like a jungle tiger" She hacl internalized and met the pre- vailing standards for appearance. But as she learned to listen to her bodv. she had to aban- don those standards. Uncontainable sickness lorced adopting other priorities for her body. Like this w()man, other people cease to meas- r,rre their body against past perfection, or past hopes of perfecting it, and begin to live with it. The sick body becomes familiar and per- haps even comfortable. This familiarity and comforl increases if treatments, regimens, or health practices seem to work. If so, the sick body becomes predictable and manageable. The ill person may teel that he or she is be- ginning to unify the altered body and the self. A r t h u r F r a n k ( 1 9 9 1 , p . 8 7 ) i d e n r i f i e s r h i s unity of body and self, "As soon as cancer happened to me, not just to anyone, it ceased

to be random. I am a bodily process, but I arn also a consciousness, with a will and a histsrv and a capacity to focus my thoughts and en- ergies. The bodily process and the conscious- ness do not oppose each other; what illness teaches is their unity."

Typically, howeveq, this unity has limits, al- beit unstated, taken-for-granted limits. lll people often believe that they have alreadv suffered beyond tolerable limits. Thus, thev see themselves as having filled their quota of human misery and earned their right to a iust reprieve. They often said, "I've paid my dies fof suffering]." tf so, then new, forebodins symptoms or conditions shock them. Morei over, these people experience the unpre- dictability of their bodies afresh as they grap- ple with new or intensified distress. Their un- ceftain lives and their frail grasp on health again takes center stage. For the past year,3 middle-aged woman with multiple sclerosis had fought constant, debilitating infections. She said:

My body is distressed, and it needs attcn- tion, and l'm workir-rg verry hard to give it that . . . I really feel with MS, I have a m r - r c h b e t t e r h o l d o n i t , h a n d l e o n t t r e M S , nrr-rch better visualization where I'll be in-what I'll do with it in five vears. ten y e a r s , b e c a u s e I c a n a d a p t a s l - g o a l o n g . The problem with infections is that infec- tions going on with MS can alter the dis- ease severely in a negative way, and so I want to get more of a handle on the infec- t i o n s .

AFter being diagnosed and experiencing her condition for over fourteen vears. havius m u l t i p l e s c l e r o s i s w i t h s o m e r e s l d u a l d i s a b i f - ity had become familiar and manageable. This woman had had several

"*tr"m-"ly d.-

bilitating exacerbations but after each one had improved considerably. For lengthy perr- ods, she struggled with keeping her illness contained by maintaining and protecting her body (cf. Charmaz l99l; Monks and Frankenberg, n.d.). Although she always ac- knowledged that her MS could take a down- hill course at any time, she expected to have ups and downs. The belief that she had faced the worst before and improved, gave herhope and caused her to view her MS as predictable and manageable. The infections. however,

Dosed grave uncertainty. She said, "The aging u'ith the MS really doesn't bother me. Aging with chronic infections-the infections can iust screw up your body in so many rvays, and so I'm more frightened by that because it's unknown."

The unknowns of the past echo in the un- ceflainties of the present. Ten years before, this womans MS symptoms had rapidly worsened. She had said then, "I'm just so trightened . . . by the unknowr-rs. If I knew that this was the worst, I could deal with that. But not knowing . . . My legs are getting weaker and I'm so frightened becatrse of the unknowns. My doctor says I may have to go into a 'uvheelchair'. That's my bottom line. I won't so into a chair:"

The Body, Identity, and Self Adapting to Impairment l0l

health, his losses remained masked. Sub- sequently, his wife lost patience with him as his business declined and he withdrew from the family. She sau' him as shirking respon- sibility.

Relatives zrnd Friends may not be arble tc.r fathom debilitating changes in a pcrson who shortly before had functioned with extraordi- nary competence. Youth and beauty render an invisible illness even more invisible. While in her early thirties, a wonlan s youth dis- guised her debilitating arthritis. I-Ier much older boyfoiend sar,i, her as healthy ancl beau- tiful. For years, her constant complaints of p a i n m y s t i f i e d h i m . S h e c o u l d n o t e n f o r - c e h e r i d e n t i t y c l a i m s a s i l l a s l o n g a r s s h e a p - pezrrccl healthy, pretty, ernd able. Because of her appearance, both her private and public i d e n t i t i e s b e l i c d h o w s h e d e l ' i n e d h e r s e l f . S h c s a i d :

I n r a y l o o k l i k c I ' r n h e a l t h y a n c l a l l t h i s stuif and I get-all these gtrys start mak- ir.rg catcalls anc'l I'rn in pain and it .jtrst seenrs incongruor;s. I go, "What ale they w h i s t l i n g a t ? " I u s u a l l y i d e n t i l 1 , r v i t h h o r v I feel, cven thor-rgh I go thr-ough a lot of efforl to make myself look eood, I still i d e n r i i y r r , i [ h l r o r v I f e e l . l r s i i k " h " i ' l g - feeling like an old person in a young per- s o n . . . I t s l i k e o n l y a n o l d p e r s o n i s e n t i - t l e d t o h a v e a l l t h i s p e i n .

By fbur years later, this woman'.s clisabili- ties had become apparent. Although she had long identified herself as in pain and dis- abled, she also had been accustonted to other people noting only her beauty. Being socially identified as diserbled r:ndermined her self- worlh and sense of wholeness. She said:

I think itt real embarassing. You know, like say if someone can see that I can't walk oi something, I'm all stooped over, you know I catch-a glimpse o[ myself in ah, like a window it's very shocking sometimes what I see. [I asked, "In which rvay?" She said:l Well, I can see that, other people can see is that, you know, my leg, I can hardly walk on it. And I feel like somehow I'm not a whole person and . . . people can look at it and feel sympa- thetic, but they can look at you and see you as less than whole, you know. (Char- r r r a z 1 9 9 1 , p . 1 1 1 )

Coping.W.ith Changes in Bodily Appearance

Having ar visibly altered body provides the experiencing person, as well as family and friends, with immediate imases of chanse. Such changes occLlr throughorit the cor-rr-sc"of illness. I uG the term "app-earance" symboli- cally as r"vell as literally since knorvledge of loss can cast new light and force new self-im- ages upon an individual. But not all people w i t h s e r i o u s c h r o n i c i l l n e s s e s h a v e v i s i b l e symptoms and disabilities. Lookine healthv can undermine a persons credibi-iitv witir health practitioneis. Women particularly have difficulty being taken seriously. One woman who had a recent angioplasty, angina, ul 9ld spinal injury and bowel diseasJwastold.by two of her physicians and her phar- m a c l s t , " Y o u d o n ' t l o o k l i k e y o u ' r e o l d e n o u g h lo luyq anything like that hupp".r. You doi'tlook like fhere could be anyihing wrong." Even those closest to ill people"may not understand their conditions and so expect them to function as before. A middle-aged man had an automobile accident while hlv- tng a heart attack. Althoush he sustained some injuries, aFterwards, he looked healthy a n d l i t . H e l o s t w e i g h t , e x e r c i s e d , a n d h i s i n - Juries slowly healed. yet he had residual fa_ tlgue, occasional memorv loss. emotional l*lng., and lethargy from his multiple medi-cations. Because he seemed to have resained

102 Section 2 * The Self in Social Context

She added, "somehow it's almost like a defect to me. And. . . , it's frightening, I guess"' Five vears later her disability was quite marked' b".ur:t" she questioned whether she still was attractive to men, she had several affairs, which she regretted.

Ill people may evince few problernl ?99"t impairment or loss of function until a hidden losi becomes visible. For example, impo- tency can be a problem known only to a man'.s wife unless the marriage dissolves' The ten- sion between invisible disability and visible impairment becomes evident. Lesley Fallow- field and Andrew Clark (1991, p. 66) show how some British women with mastectomies rejected their altered bodies when their breast amputation was visible:

Intetyiewer'. Can you tell me how you felt a b o u t y o u r a p p e a r a n c c s i n c e y o u l o p e r a - t i o n ?

P a t i e n l : M r n , t h a t d e p e n d s - I t h i n k I look OK rvhen I'm wearing my false one, don't yotr? I don't think anyorre cotrlcl tell.

Interviewer: And rvithout your clotlres? Patient: That's rather different-l tend

not to look at rnyself-it upsets me that I don't look like a woman anymore.

Interviewer'. What about when vou're rvith your husband?

P a t i e n t : O h , I d o n ' t l e t h i m s e e m e , o h no. I couldn't. He'd be horrified. I alrvays u n d r e s s i n t h e b a t h r o o m n o \ v .

L i k e t h e w o m a n a b o v e , o t h e r i l l p e o p l e tried to recluce the effects of visible disability on their pursuits and relationships. And like her. thev could then reduce the effects of it on themselves and their social identities. One m a n o n k i d n e y d i a l y s i s a l w a y s w o r e l o n g sleeves and usually a jacket to hide his dialy- sis shunt. Feelings about visible disability in- fluenced both men s and women s identity goals. When men could not hide or minimize their changed appearance, they oflen with- drew. Hence, their identity goals plummeted. Women withdrew less but dwelt upon ap- pearance issues in the interviews much more than men. They tried to manage their appear- ance to handle their feelings and to bolster their confidence. Nancv Dvson. who had a mastectomy, said:

Wearing bright colors and makeup and pulling-myseTf together before I gobut is

a way of protecting my vulnerability so p e o p l e d o n ' t m a k e a s s u m p t i o n s . I t s l i k e camouflage. It's sort of like the camou- flage is thE door and I can open it or not. It is another way of having control over my disease. I choose whom I share my rulnerability with. (Donn ally 1991, p D5)

Women under fifty evinced much concern about the effects of illness on their appear- ance. I asked a forty-one-year-old woman with lupus erythematosus if her thoughts about her appearance had changed at all in the last five years. She replied with fer-vor:

I hate my body; I hate my body. Mostly b e c a u s e I ' v e g a i n e d s o m u c h w e i g h t and-and then my face breaks out flupus has a characteristic rash]. People look at you like something's wrong fwith your characterl. I don't hate it because its sick; I hate it because its ugly. . . .You're sup- posed to be skinny and pretty."

When changes in appearance are sudden and visible, women miry define those changes as tests ol' their love relationships. A forty- two-year-old woman sulfered ar devastating reoccurrence of mixed connective tissue dis- ease when she was pregnant three years ago. She had not had such a ser-ious episode for eighteen years, long before she had met her husband. During that previous episode, her boyfi"iend had le[t her"and her parents had ig- nored her. She described herselfand hercon- cerns during this second flare-up:

Oh, I was just a disheveled lump, I mean I was a disheveled lump. I'm sort of still a disheveled lump. . . . But it doesn't much matter to me [now]. . . . lT]his was a little bit of a test of me with Bob [husband]. It'.s like, "Here's the worst I can possibly be," you know; "I'm sick; I'm vomiting; I look like crap." And then I gained so much weight, so it's Iike, "Here's the worst I can be. Are you going to leave me now?" you know. "Are you going leave now? When are you going to leave? Are you going to l e a v e n e x t w e e k ? "

Changing Identity Goals Bodily Changes and Identity Goals

Bodily changes prompt changing identity goals. Upward changes allow ill people to en-

tertain possibilities and try new ventures. A successful transplant, cardiac rehabilitation D r o g l ' a m , o l m e d i c a l r e g i m e n m e a n s f e c l i n g betGr and more able. Then people reentered the rvorlds they left or embarke6 ott ,1s11r pur- suits. Thcy readily moved on with their lives when they had alternatives and rvhen their identity goals throughout illness had as- sumed moving beyond it. Thus, these people returncd to work, or if working, increased their rvork hours, pursued sports and hob- bies, and planned to redirect their lives. Men retur-necl to their careers. A few womelt s t a r t e d n e w b u s i n e s s e s . S e v e r a l m e n a n d women went back to school.

B o d i l y c h a n g e s , i n c l u d i n g n o t i c e a b l e i m - p r o r r e m e n t , d o n o t a u t o m a t i c a l l y r e s u l t i n c h a n g e d i d e n t i t y g o a l s . E m o t i o n s a n c l s o c i a l r e l a t i o r r s h i p s i n f l u e n c e c h t t i c e s a n d a c t i o n s . When f'ear of ihilur-e or furtlrer sickness pcr- m e a t e s i l l p e o p l e s t h o u g h t s , t l r e y p r o c e e c l slorvly in forming or char-rging their identity goals. A yollng marriccl woman who hacl had cancer feared a r-ecun-ence. She resisted in- vesting herself in a vah-red pursuit because s h e c o u l d n o t t o l e r a t e t h e p o s s i b i l i t y o f l o s i n g it. Her husbandis income allowecl her to ex- perimcnt with college corlrses and lou,-pay- i n g , p a r t - t i m e j o b s . R e l y i n g s o l e l y o n s e l f l e d some people to measure theil clptions, situ- ations, and bodies carefully when they prized thcir autonomy. These people coulcl r-rot risk becoming imn-robilized. Piradoxically, they risked becoming social captives of their sick b o d i e s . s U n d e r t h e s e c o n d i t i o n s , p e o p l e made changes very slowly and avoided taking risks. Thevlften needeci-substantial encour_ agement to reach for more challenging iden- tity goals. After spells of sickness, they had difficulty imagining themselves going be- yond their current situations. For example, a woman who had lupus erythematosus had wanted just to be able to work enough to re- main self-supporting. Her appalling encoun- ters with eligibility workers and social service employees resulted in her avowals never to oepend on public assistance. She recounted:

I didn't think-didn't have any wide hori- -z.gns. My friend Ken, he told me last year,"Bonnie-, I just can see )iou managihg a business, right?" I said, "Oh, give me a break," you l.now. And he everiprobably

The Body, Identiry, and Self Adapting to Impairment 103

said it to me in February. "You know, Bonnie, you ought to open an office and blah, blah, blah." I said, "Don't even talk about it; I'm not interested in it." But it just happened. One day I had too much work and I said, "Wait a minute." So I got up, called Ihe Times flocal paper] and as I rvas rvalking awav from the phone, I went, "What did I do?" That's the way it all happened. And my friends gave me lmoney] to get started in my business.

In contrast, a downward spiral, or sudden serious episode czrn fot'ce loweling identity goals. Ill people must either adapt because they cannot handle the lives they had-cvcn ir-r the recent past-or they realize that they norv have a tenLlous hold on managing their lives. How do thcy do it? What social context n t f e c t s t h c i r c h o i c e s ?

Certainly, markeclly altered boclilv func- tionir-rg and feeling can undermine pt'esent i c l e n t i t i c s o r l ' o r c e l o w e r i n g i d e n t i t y g o a l s ( s c c , f o r e x z r m p l e , A l b r e c h t 1 9 9 2 ; D a h l b e r g ancl Jaffc 1977; Pitzele 1985; Plotrgh 1986). People with chronic illnesses r-esist lowering their goals if'the.y believe others need them t<r function as before. They put their bodies ancl their lives at risk u,herr they view their idcn- tity lossers as too great or when they remain Llnaware of the extent of their physiczrl Iosscs. For- example, several heart patients aban- doned their diets ancl regimens aftcr a fer'v months because they no longer felt sick. In addition, people who recogrlize but cannot accollnt for their reduced capacities tena- ciously try to fi-rnction. One- middle-agecl woman said, "It was scary at times. I didn't know what was wrong. [I was] not feeling well, and always having to push, push, push. A,lways behind the eight ball, always tired, al- w:lys pushing against this wall of fatigue. And trying to keep up, yoLl know."

The Social Context of Changing Identity GoaIs

Identities bring commitments and respon- sibilities. In turn, how individuals define these commitments and responsibilities in relation to other people deeply affects their identity decisions. Changing identity goals then takes into account (1) the individuals definitions, (2) significant others'views and wishes, and (3) the interactions and negotia-

104 Secdon 2 | The Self in Social Context

fions among them. Once chronically ill peo- ple have altered their lives to accommodate io limited identity goals, it takes substantial support to move beyond them- Given their de-finitions, ill people may only relinquish their identities and their accompanying iden- tity goals when forced to do so. They may de- velop intricate strategies to preserve their identity goals. For years after having been im- mobilized by illness, a single woman had bal- anced her work productivity with her energy limits. When necessary she simply took time off from work to avoid a full-blown exacerba- tion or to regain her energy. By carefully monitoring and maintaining her body, she could realize her overiding identity goal of remaining independent. But keeping bodily needs and identity goals in balance can prove to be arduous. Now maried, this woman has two young children as rvell as Farm animerls to care for in addition to a part-timc univer- sity teaching job seventy miles away. Her identities as motherl wiFe, and teachcr super- sede any illness ider-rtity and cause her to per- severe beyond her bodily limits. Her cl-rildren n e e d h e r ; s h e a n d h e r h t r s b a n d c o m m i t t e d then-rsclves to llot using child car-e. The [an'r- ilys need for her income also tugs i,rt hel es- p e c i a l l y s i n c e h e r h u s b a n d l o s t h i s n r a i n j o b . T h u s , b y r e a l i z i n g h e r i d e n t i t i e s , s h e r i s k s b e - ing forced to relinquish them. She compared h o w s h e h a n d l e d i l l n e s s w h e n s h e w a s s i n g l e with her clll'rent situation, "Going through that whole period in my life when I was real sick, I got verry used to just Iistening to my b o d y a n d h o w i t s f e e l i n g a n d t o t a l l y g o i n g how-by how I rvas feeling from dzry to day. And I can't really, I cant always do that now. Theres sometimes when I have to push it much more than I would l-rave before."

Before her marriage, this woman was a successful independent entrepreneur. Her autonomy combined with her control over employees' work assignments permitted her to take time-outs from work to nufture her body. More frequently, middle-class and pro- fessional men, not women, can fit their work around their bodily needs. Wl-ren they can control the social context of work, thev can realize and further their identitv soals con- cernins it.

A major part of the social context revolves around spouses or partners. In long-term marriages among older couples, loyalty and attachment typically remain unquestioned although spouses may have sharp differences about health monitoring (Johnson 1985). Wives of all ages willingly saw their husbands through crises, even when marriages were shaky. Problems generally arose later as the long-term effects of illness emerged. In con- tras1, support from husbands and-boyfi-iends of middle-aged and younger women was more tentative throughout illness. These men did not take over tasks as readily as wives did, and they abandoned their relationships emo- tionally, if not completely, more quickly than women. Women with illnesses sometimes re- lied on adult children, f iends, and healtlr- care workers for emotional support and prac- tical assistance.

M u l t i p l e c r i s e s a n d d i s a b i l i t i e s t h a t c u t into pivotal roles (e.g. breadwinnet sex part- ner) r-rndermined r-niddle-aged and younger spouses' sLlpport. Previously conflicted mar- riages rnay break at thjs point. Subsequently, taken-for.granted identities as compaltlol-t and parent rnay also dissolve. Conllicts about identity goals may develop in strong relation- ships. Thc type of identity goal and rate and intensitv with which the sick person purslles it can all becon-re poir.rts of contention (see also Peyrot, McMr,rny, zrnd Hedges l9B8; S p e e d l i n g 1 9 8 2 ) . A w o n r a n w i t h m L r l t i p l e sclerosis wants to do vcllur-rteer work in a busy hospital; her husband feels her body cannot handle the stress. A man rvith heari disease waits for his health to improve; his wife be- l i e v e s t h a t h e i s b e c o m i n s a n i n v a l i d a n d s h o u l d g o b a c k t o w o r k . '

Certainly age, gender, work, and marital status shape, but do not determine, the con- text in which chronically ill adults change identity goals. As Alan Radley (1989) stares, what people with chronic illnesses adiust with is as important as whar they adjusi lo. Their ways of changing identity goals and adapting to the changes also reflect the con- tent of their lives and the meanings they at- tribute to their ongoing interactions. Money and help make an enormous difference as to how, when, and why people will or will not lower their identity goals. Single mothers

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often sacrificed their health for sustaining their identities as u.'orkers and parents. Money and help also affect how people feel abor,rt changing identity goals (see, for exam- ole, Albrecht 1992). Possessitlg sufficient-ftrnds

allows older men and women to retire early a socially acceptable disengagement for the affluent. Having financially secure spouses permits others to leave their jobs or to reduce their rt'ork hours. In short, money and help allow ill people more choices about which identity trade-offs to make and when t o m a k e t h e m .

The social context of changing identity goals may itself change. The clesignatecl "pa- tient," financial resoltrces, ancl potential help nrav change and thus result in shifting iden- tity goals. For exzrmple, one older rvclman rvith a mild heart condition felt forced to seek employment when her husbandis health de- clinecl (zrfter two heart attacks and bypass s u r g e r y ) a n d h e l o s t h i s j o b ( a n d h i s p e n s i o n ) three years before his expected retirement. Twci years later, however, she sulfered a small stroke. Though she hzrd little lasting impair- ment, she took the stroke as a warnitrg that she had been under too much prcssr-rre. She then became the clesignated patient in the family. Fortuitously, her husband had be- come re-employed and coulcl again support them. The move of an adult daughter back into their area also meant help with house- hold tasks and errands. Subsequently, this woman relinquished her identity goal of be- ing fully employed.

Identity Goals and Identity Tiade-offs Identity goals emerge and change through

mediation of subjective and social meanings. Hence, ill people sacrifice some identities in Iavor of retaining others. Noted anthropolo- gtst Robert F. Murphy ( 1987) suffered from a progressive paralvsis. He did not endure the professionai and iinancial devastation com- mon to many adults with disabilities because ne could continue to work in a field in which he had alreadv established himself. Nonethe_ less, he felt piessured to remain a productive scholar to validate his worth unld to .o*- mand his colleagues'respect. He writes about returning to teaching in a wheelchair:

The Body, Identity, and Self Adapting to Impairment lO5

Mv overreach beyond the limits of my body was a way of telling the academic world that I r.,"as still alive and doins what I a l w a y s d i d . A n d a l l m y f e v e r i s h i c t i v i - ties in both academia and my communitv w e r e s h o u t s t o t h e w o r l d : " H e y i t ' s t h i s a m e o l d m e i n s i d e t h i s b o d y ! " T h e s e were ways of protecting the identity, for preserving that inner sense of who one is that is an individual's anchor in a tran- s i e n t w o r l d . ( p . 8 l )

Feeling devalued results in weighing inter- a c t i o n a l c o s t s a n d i n b a l a n c i n g n e c e s s i t i e s against possible identity trade-offs. To the ex- tent that these identity issues are direct and explicit, people rvill construrct explicit iden- tity goals. Murphys interactions formed an unspoken yet ur-ryielding mirror that re- flected the renegotiation of his pref'erred identities. Becausc Murphys strainecl inter- actions with acquaintances at work reduced his self-rvorth, he avoided nteetings and re- ceotions. He knerv that he could not condr-rct f i e l d r e s e a r c h s o h e b e c a m e a t e x t b o o k eruthor. lle preserved his sense of self by choosing his activities carefully and by mak- ing identity trade-offs. Murphy viewed text- book ar-rthorship as a lesser identity than eth- nographer bttt also saw himself as "too old" for ethnographic forays, which mitigated his iclentity trade-off. As people shift their iden- tity goals laterally or downwarcl, they mav re- linquish what others view as the more so- cially valued identity. They feel their losses. They think about their lives. They assess the costs and benefits of relinqr-rishing activities and responsibilities and, therefore, identi- ties. When costs to their bodies and intimate relationships exceed relative gains, they give up valued identities. A middle-aged woman related:

I'd come home and I was in such Pain- you have to work lon the job] seven hours t ' u t y o u p u t i n e i g h t o r n i n e . . I t ' s v e r y stressful. But I never succumbed to stress but once or twice. It was doable because I onlv worked three days a week ' ' ' But Alan"fhusband] would come home and I'd bebn the couch in such pain I couldn't set off, too tired to fix dinner and he was iust wonderful. He'd call at work, "Well, what should I bring home tonightZ" And some nights I'd cook, but not many' And

106 Section 2 * The Self in Social Context

so I decided, this isn't a way to live' I don't have to work . . . So it was with great re- sret, and not something I Planned, I iurned in my resignation. It's the best thing I ever did.

Concurrence from others strengthens the person's belief in having made the right .hoi.". The woman above agreed with for- mer associates'appraisals of her appearance. She recalled, "I went to a wine tasting that we put on a couple weeks ago . . . and some of ihe Board members were saying, 'Gee, you look so much better. You were all bent over; you looked terrible.'I did look awful. I need more r-est; you have to pace yourself."

After making identity trade-offs, people often try to redefine their identity choices in positive ways. Similar to other kinds of deci- sion making, they want to view their choices as sound. At this cmcial point, the tension becomes apparent between acknowledging bodily limits and needs and constntcting a preferred identity lor those who must make significant changes of activity and direction in their lives. In order to handle their lives, they must integrate self and illness without having it constrme their self-concepts. Thus, like the won'lan above, they may, in effect, vicw identity loss as identity gain. In cssence then, people can move up their identity hier- archy while thev move down their bodily hi- erarchy.

By this time, these ill people account and care for their altered bodies while viewing themselves as residing in their bodies but not as wholly defir-red by them. Part of redefining personal identity depends upon seeing one's self as more than one's body and the illness w i t h i n i t ( C h a r m a z 1 9 9 1 ) . T h e w o m a n a b o v e defined the place of illness in relation to iden- tity:

Fibromyalgia does not define who Ellen Thomasen is. It's baggage I've got to carry along. We've all got baggage. Some of it's light and some of it's heavy. And we'd like to check it in a locker awhile. And some- times you can do that and sometimes you can't but it's not going to stop me from go- ing on a trip. That's the way I feel.

Simultaneously, she recognized her Iimita- tions and her need to care for her body while

creating her life and facing an uncertain fu- ture. She said, "I wonder if I'm going to be able to be active with my grandchildren . . . I'm wondering-we don't know what the symptoms are going to do, you know. I plan to fight as long as I can. And by fighting-it's an attitudinal thing-it's also resting and do- ing the things you need to do. I don't-I've al- ways been so active that I don't like this at all. But it's doable, you know?"

Finding the balance between stmggling with illness and relinquishing identity goali permits ill people to construct valued lives. A woman with multiple sclerosis once felt deep regrets about lost chances and dashed hopei. She feared then "that having MS will affect my life in a negative way," as well as affect her husband and children seriously. Although ten years later she had relinquished some earlier dreams, she had also realized several, includ- ing traveling, which she had expected to forego. Deeply imbedded in her family life, she could now say "I'm comfortable urith w h o I a m , w h e r e I a m . "

Surrendering to the Sick Body Surrer-rdering means to stop pushing bod-

i l y l i m i t s , t o s t o p F i g h t i n g t h e e p i s o d e o r t h e entire illness. The quest for control over ill- ness ceases and the flow with the bodily ex- perience increases. Surrender means aware- ness of ones ill body and a willingr-ress and reliet to flor.v with it (cf. Denzin 1987a, 1987b). A person ceases to struggle against illness and against a failing body at least at this specific time. Through surrendering, the person anchors bodily feelings in self. No longer does he or she ignore, gloss over, or deny these feelings and view the ill body as apart from self.

Conditions for surrender to occur include (l) relinquishing the quest for control over one's body, (2) giving up notions of victory over illness, (3) affirming, however implicitly, that one s self is tied to the sick bodv. Ill peo- ple may surrender and flow with ttie experi' ence in the present but hope for improvement in the future. Yet they are unlikely to enter- tain false hopes. At this point, the person views illness as integral to subjective experi-

ence and as integrated with self (see also Le- Maistre 1985;Monks and Frankenberg n.d.).

Strrrendering differs from being overtaken bv illne ss, resigning oneself to it, or giving up ( c f . C h a r m a z . l 9 9 l ; R a d l e y a n c l G r e e n 1 9 8 7 ) . Being <>vertaken occurs without choice; sur- rendering is an active, intentional process. However siler-rtly and tacitly, ill people agree to surrender. When surrender is complete, the pelson experiences a new unity between b o d y a n c l s e l f . M a r k K i d e l ( 1 9 8 8 , p . 1 8 ) a d v o - cates "r'ecleriming our illnesses as expressions of our own being," to gain authenticity. Like A r t h t r r F r e r n k ( 1 9 9 1 , p . I ) , w h o v i e w s i l l n e s s as "ern opportunity but a dangerous one," Kiclel zrlso recognizes that doing so risks opcning "ourselves to the ftrll and unpre- d i c t a b l e i m p a c t o f t h e u n k n o w n " ( p . 1 9 ) . Hence, ill pcople define their experience as newly ar-rthentic when thev realize that hav- i n g : r n i l l b o d y i s p a r t o f t h e m a n d t h e y a l l o w thenrsclves to experience it. They erlso may clefine their past ways of relating to illness as i n a u t h e n t i c . S e v e r a l p e o p l e e c h o e d t h i s man'.s view, "I was just a phony, pretending I didn't have it fkidney Failure], trying to do everrything everyone else dicl when my body was telling me I cor-rldn't."

Surrenderins also can be distinsuished from becoming-r'esigned and losing hope. Be- coming resigned means yielding to illness, acquiescing to its force, or to the devalued tclentities attributed to it. Such resignatior-r means accepting defeat after struggling a g a i n s t i l l n e s s . W h e n p e o p l e g i v e u p , t h e y lose hope and crumble in*i.d. passivity, de- pression, and debilitv follow. Thev are over- taken by illness. Under these conditions. peo- ple witi chronic illnesses can become much more disabled than their physical conditions warrant. They lose interest in their regimens and, perhaps, in living. As they give up, they gtve in to fear and despair. In contrast, sur- r e n d e r

_ m e a n s p c r m i t t i n g o n e s e l t t o l e t g orather than being overtakJn by illness and d"e- sDair.

- Resisting surrender means holding on

and, with advanced illness, refusing tJdle. :,ear may propel crirically ill people. Whenurey stnrggle against illness and try to impose o^rder upon it and their lives, they ire unlikelyto surrender durins the midst of crisis. But

Tbe Body, Identity, and Self Adapting to Impairment 107

late4, learning to live with residual disability can teach them about surender. As Arnold B e i s s e r ( 1 9 8 8 ) a c k n o w l e d g e s , h e l e a r n e d about surrender through facing defeat. Like many other men, Beisser had earlier be- lieved, then later hoped, that his sustained ef- fort would fbrce change to occur and victoly to prevail. Yet no amount of effort changed the fact of his disability. Beisser (1988, pp. 169-170) reflects:

Defeated on all foonts, I had to learn how to surrender and acceot what I had be- c o n r e , w h a t I d i d n o t w i r n t t o b e .

Learning to surrender and accept what I had not chosen gave me knowledge of a new kind of chanse and a new kind of ex- p e r i e n c e w h i c h l - h a d n o t a n t i c i p a t e d . I t was a paradoxical change.

When I stopped struggling, working to c h a n g e , a r . r d l o u n d m e a n s o f a c c e p t i n g what I had already become, I discovered t h a t t h a t c h a n g e d m e . R a t h e r t h a n f e e l i n g d i s a b l e d a n d i n a d e q u a t e z r s I a n t i c i p a t e d t h a t I w o u l d , I f e l t w h o l e a g a i n . I e x p e r i - enced a sense of'well-beine and a fullness I had not kr.rown before. if.lt ut one not only with myself but with the universe.

This was not the chanse that had been wrought by struggle, woik and effort, but by learning not to struggle, how to give in, to stand aside and let truth emerge. It rvas not the tragic truth I expected at all.

For Beisser, surrender meant stripping away the fantasy of recovery the wish for re- covering former wholeness. Still, surrender allowed for being in the flow of the moment rather than wishing and waiting for a mythi- cal future. No longer could pressing symp- toms, marked disability, and progressive ill- ness be ignored or redefined. When surren- dering, illness merges with subjectivity; itbe- comes subjectivity. Surrendering to illness opens the possibility of transforming the self. By reentering the present anew and flowing with it, ill people gain fresh views of them- selves and their situations. External social mandates melt away as the person gains voice from within. Subsequently, a new sense of wholeness of self can emerge.

When an individual is verv sick, surrender permits unity with the diseased body. Fight- ing illness at this point may amount to fight- ingagainst oneself instead of for oneself. One

108 Secdon 2 * The Self in Social Context

woman struggled against Hodgkin's disease for twelve years; she resisted being con- strained and defined by her illness. During her last hospitalization for a bone transplant, her last hope ofrecovery she realized that her body could handle no more. At that point, she relinquished her struggle and surrendered to illness and death. How do people know when to surrender and to what to surrender? When overtaken by illness, the woman who resisted relinquishing her responsibilities said of sur- rendering:

It means that I don't have-I can't control ir [ill body] and [it means] to look at what it has to teach me. Just . . . let it tell me what it needs to tell me. You know that willingness and that acceptance. . . . So it didn't come instantly, but I was willing to surrender and to look at what was going on. But it did come; it did happen. And I'm always much more at peace after I'm able to do that anlnvay.

Fighting for her meant fighting for control over an unwilling body. Surrender allowed her to Find new integration of body and self. She disclosed, "I become more when I sur- r e n d e r , I m e a n I b e c o m e m o r e ; m y s p i r i t ' s able to grou,. And it can't do that if I'm holding o n t o c o n t r o l . "

In this sense, by Freeing tl-re self trom a cluest for control, it becomes possible to ex- p e r i e n c e t h e m o m e n t a n d t o a l l o w t h e boundaries of self to flow and to expand. Yet self also anchors the person to continuity with past, present, and future. And that an- chor itself becomes problematic while sur- rendering to sickness. Another woman re- flected upon this problematic relationship between body and self:

To me it's fimmersion in illness] sort of moving toward spiritual states where you do lose a sense of self and time as a re- lease. I mean, self is a kind of bondage in a way-so it's wonderful-you move to- ward heaven-to not have that burden But the other thing, of course, is that we are here. I exist as Jane so Jane comes back and wants to exist. So that's the hell- ish side. (Charmaz 1991, p. 104)

Conclusion The process of adapting outlined above of-

fers a window on unity between body and self in illness. Illness presents the possibility of developing new and deeper meanings of the relation between body and self. Such possi- bilities remain more hidden and implicit in ordinary adult life. But as ill people go through and emerge from crises, complica- tions, and flare-ups, they also reenter mun- dane adult worlds. Meanings gained through experiencing surrender may fade and recede into the past. Yet these meanings and their accompanying feelings may be reawakened and remembered when illness progresses and health again fails.

Appearance issues affect women more heavily than men. However, compared to men, women show greater resilience in the face of illness and greater ability to adapt and []ow with the experience of illness. Men more often than women take an all-or-nothing ap- proach to identity goals. They place a higher stake in recapturing the past and rvith it, their past identities (cf. Charrnaz 1994b). If they c a n n o t r e c l a i m a l l o f t h e i r p a s t i d e n t i t i e s , t h e y d r o p t h e s t r t r g g l e . F a i l i n g t o a c h i c r r e their preterred identitics becomes tzrnta- rnount to complete failure. Under these con- c l i t i o n s , s u c h m e n g i v e u p .

Holl, might adapting affect those rvhose lives are intertr,r,rined with an ill person? Whether they welcome adapting or define it as defeat deoends on their views and intel. ests. Adapting ca.t cause havoc in the lives of people who depend on the ill person ar-rd who cannot or will not renegotiate or relinquish earlier reciprocities. If family and frier-rds be- lieve the proper stance toward illness is strug- gling against it or politely ignoring it, then they will be displeased to witness their ill per- son adapting to it. More likely, however; fam- ily and friends are relieved when the ill per- son begins to adapt. As he or she does so, ear- l i e r a n g e r , s e l f - p i t y , g u i l t , a n d b l a m e d i s s i p a t e . Adapting leads to taking responsibility for self. Hence, spouses and parlners may feel much less need to monitor the ill person and to patrol his or her activities. Moreovet, chronically ill people who adapt do not re- quire their friends and family to construct a

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fictional present and mythical future with thcrr-r. Adapting fosters candor and openness. And ultimately, sun-endering to illness per- mits grave illness and death to be a part of lifc for the strrwivors as r.t'ell as the sick per- s o l l .

Aclapting to intpairment takes people with scrious chronic illness on an odyssey of self ( c f . C l r a r m a z 1 9 9 1 ) . T h e i r b o d i e s b e c o m e alien terrain. Their altered lives can transpott them into untamiliar worlds where they feel e s t r a n g e d . F u r t h e r m o r e , t h e f a m i l i a r b e - comes strange rryhen altered bodies pose new constraints, reqttire careful scrtrtiny, and f o r c e a t t e n d i n g t o t i m e , s p a c e , m o v e m e n t , ancl other people in new ways. By stmggling i y i l f t i l l n e s s r v h i l c c o r . r s t r t r c t i n g t h e i r l i v e s , chronically ill people fcel thert they regain lost c o n t r o l o v e l t h e i r - b o d i e s a n d t h e i r l i v e s . B y regair"ring contr'<>l and ct-rping with bodily changcs, these peoplc lcarn to live with their i l l n e s s e s - A s t h e y d o , t l r e s t r - a n g e b e c o m e s f a - miliar. Because strrrenclering to the sick body strips the jor-nney oI r'otrtinc distractions and obstacles, conditions exist for ill persons to experience self anew and to continuc the od- yssey with renewed clarity and purpose. In this sense then, adapting to impairment fos- ters redemption zrnd transcendence of self.6

Throtrgh stmggle zrnd surrender, ill people paradoxically grow more resolute in self as they adapt to impairment. They suffer bodily losses but gain themselves. Their odyssey leads them t-o a deeper level of awa.".r".-r-of self, of situation, of their place with others. They believe in their inner strength as their bodies cmmble. Thev transcend their bodies as they surrender control. The self is of the body yet beyond it. With this stance comes a sense of resolution and an awareness of tim- ing. Ill people grasp when to struggle and when to flow into surrender. They grow im- pervious to social meanings, including being devalued. They can face tTre unknowi with-- out tear while remainins themselves. At this point, chronically ill people may find them- selves in the ironic position of giving solace and comfort to the'healthy. The'y gai-n pride tn knowing that their selrrel harre b"een put to Iest-a test of characte{, resourcefulness, and wlll. They know they gave themselves to their struggles and lived ihlir lo.r with courase.

The Body, Identity, and Self Adzpting to Impairment lO9

Yet the odyssey seldom remains a single j o u r n e y f o r t h e s e c h r o n i c a l l y i l l p e o p l e . F r e - quently, they repeat their journey on the same terrain over and over and, also, find them- s e l v e s t r a n s p o r - t c d t o u n p l a n n e d s i d e t r i p s a n d l - r e l d c a p t i v e s w i t h i n h o s t i l e t e r r i t o r i e s a s t h e y e x p e r i e n c e s e t b a c k s , f l a r e - u p s , c o m p l i - c a t i o n s , a n d s e c o n d a r y c o n d i t i o n s . S t i l l t h e y m a y d i s c o r r e r t h a t e a c h p a r t o f t h e i r o d y s s e y n o t o n l y p o s e s b a r r i e r s , b u t a l s o b r i n g s p o s - s i b i l i t i e s f o r r e s o h - r t i o n a n d r e n e w a l .

Notes

1 . I a m i n c i e b t e d t o M e i r g a l c t P u r s e r ( p e r s o n a l c o m m u n i c a t i o n , 1 9 9 3 ) f o r t l - r e t e r r m " c o n t i n t r - i n g r n e t a p h o r s o l - o p p o s i t i o r - r . "

2 . W l r i l e c o r - n p l e t i n g a s t u c l v o f t h e e x p e r i e n c e o f c h r o n i c i l l n e s s , I f o r - r n c l t h n t i s s t r e s e r b o u t h a v - i n g a p r o b l e m a t i c b o c l v a r o s e r c p e a t e c l l y . T h i s s t u c l y i n c l u d e d I l 5 i n t e n s i v e i n t e r v i e r v s o f f i f t y - f i v e a d u l t s w i t h s e r i o u s , i n t n r s i v c c h r o n i c i l l n e s s e s . S i x t e e n o f t h e s e r e s p o n d e n t s w e r e lollowecl longitr-rdinzrlly [r-om five years to over a c l e c a c l e . A f t c r a n a l y z - i n g t h e e a r l i e r i n t e r - v i e w s f o r c o n t e n t a b o t r t t h e b o c l y i n i l l n e s s , 2 5 focused intervieu's about the body :rnd self w e r e c o n d u c t e d ( i n c l r " r d i n g l 2 i n t e r w i e r , ' , s w i t h responclents frorn the longitr-rclinal portior.r o1' t h e o r i g i n a l s t u c l y ) o f t r v o t o t h r c e h o u r s i n l e n g t l - r . I a l s o c c l l l e c t e d p e r s o n a l a c c o u n t s o f e x p e r i e n c i n g c l . r r o n i c i l l n e s s a n d d i s a b i l i t y t o e x a m i n e t h e m f o r s t a t e m e n t s a b o t r t t h e b o c l y ( s e e , f o r e x a m p l e , B e i s s e r 1 9 8 8 ; F i s h e r , S t r a u s , C h e n e y , a n d O l e s k e 1 9 8 7 ; F r a n k 1 9 9 1 ; L e M a i s - t r e 1 9 8 5 ; M a i r s 1 9 8 9 ; M u r p h y 1 9 8 7 ; P i t z e l e 1 9 8 5 ; R e g i s t e r 1 9 8 7 ) . G r o u n d e d t h e o r y m e t h - ods provided the strategies for collecting and a n a l y z i n g d a t a ( C h a r m a z 1 9 9 5 ; G l a s e r 1 9 7 8 ; G l a s e r a n d S t r a u s s 1 9 6 7 : S t r a u s s 1 9 8 7 ) . C o n - sistent with the emergent character of grounded theory methods, my analysis evolved as I collected and interpreted data.

3 . O l e s e n e t a l . ( 1 9 9 0 ) r e [ ' e r t o t h i s t y p e o f s e l f - a p - praisal as the selfas knower because a hurting body provides significant reference points in relation to self and illness.

4. When the diagnosis is not understood, objec- tifying the body likely increases and intensi- fies if patients and families also do not understand chronicity. Then ill persons may detach themselves from their impaired bodies and even view their bodily changes as unreal ( M a n n i n g 1 9 9 1 )

5. Physical loss can consume caregivers as well as their patients. Maggie Strong ( 1988, p. 25a)

110 Section 2 | The Selfin Social Context

reveals how her husband's continued physical losses steadily consumed /zer self and body.''' "My sorrow for Teds hearing faded into a growing panic and rage. He was climbing

-ght

into my body. I was climbing right into hii, into his sensory lobes, into his auditory cortex and he into mine. This was a gradual to- tal body transplant in which my own selt would be entirely usurped."

6. I am indebted to Norman K. Denzin (personal communication, 1993) for reminding me of the cultural my'th of redemption after loss fol- lowed by transcendence of self (see aiso, Char- maz, 1991).

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