The meaning of disability: how women with chronic illness view their experiences.

Learning one has a chronic health condition is a pivotal event in an individual's life. According to Kleinman (1988), the integrity of our bodies is so central to our belief systems that it is often assumed that "...chronic illness is a betrayal of that fundamental trust" (p.45). Charmaz (1995) notes that convictions regarding one's own identity become shaken following diagnosis with chronic illness, frequently altering both self-perceptions and self-concept. In addition, individuals face powerful emotional issues related to chronicity and acceptance of a new lifestyle that may be radically different from the one planned or hoped for prior to diagnosis (Gordon & Benishek, 1996).

Living with a long-term illness often forces an individual to adjust to limitations while incurring a redefinition of self (Hayden, 1993). Due to the unpredictable nature of chronic illness, individuals face an ongoing adaptation process (Kleinman, 1988). For each person, this challenge becomes one of making meaning of the event as one works to redefine one's self in the face of illness (Hayden, 1993). Clearly, making sense of one's illness and finding meaning in this altered state is a complex process. According to Hayden (1993), the need to name the illness experience or bring voice to the event is a critical challenge. It requires recognition that an individual's definition of health shapes his or her understanding and response to chronic illness (Young & Garner, 1993).

In a similar vein, Charmaz (1995) suggests that an individual goes through three stages when adapting to impairments related to chronic illness: (1) the experience and assessment of having an actual impairment; (2) the recognition that one's future will be affected due to this event; and (3) the acceptance of the illness and subsequent move to find harmony between body and self. Therefore, when faced with impending physical and functional losses, individuals are forced to "take stock" and reassess their lives from a new and changing perspective. This "restructuring of life" is an ongoing phenomenon "shaped" by both the events of illness and the commonplace life events unique to each individual (Anderson, Blue & Lau, 1991., p. 101).

Terminology Difficulties

Unfortunately, adaptation to illness may be hindered due to the difficulty inherent in defining terms such as impairment and disability (Harris, 1995; Stone, 1995). Sidell (1997) suggests that the recognition of chronic illness as a social phenomenon is a relatively recent one, resulting from medical and technological advances. Chronic illnesses, by nature, are long-standing problems with limited chance of recovery which may or may not cause visible impairment (Kleinman, 1988; Schreurs & de Ridder, 1997; Sidell, 1997). According to Harris (1995), disability may also be viewed as "a social phenomenon since it allows people to be perceived as a group" (p. 341). Difficulty may arise, though, in determining when an individual meets the criteria for inclusion within the group. Stone (1995) notes that while both invisible and visible disabilities often negatively affect individuals, those disabilities not readily noticeable may be "dismissed" due to the frequently held belief that disability "necessarily entails sitting in a wheelchair" (p. 417).

Societal Views of Illness and Disability

In addition to making meaning of the experience, many individuals are forced to adapt to the illness experience within a social climate that is frequently far from supportive. Goffman's (1963) definitive investigation regarding the concept of stigma was instrumental in denoting attributes society considers discrediting. As suggested by Schneider and Anderson (1980), stigma refers to any physical and/or behavioral characteristics that result in an individual being the victim of preconceived, negative expectations. This concurs with Coleman's (1986, p. 214) thought that not only does stigma result in "downward mobility" for the individual, but it also reflects a societal agreement that his or her differentness is unacceptable. Belgrave (1990) provides a pertinent insight into the interwoven nature of illness and stigma, suggesting that persons with illness typically recognize the potential for stigmatization. They, in turn, may incorporate that knowledge in both in their self-identity and coping strategies.

Early work by Davis (1961) concerning the impact of visible disabilities portrayed deviance disavowal as one strategy to manage strained interactions with others. Wright (1983) discusses the importance of value change in order to cope with physical disability. More recently, Quinn (1994) suggests that women with disabling conditions are at a particular disadvantage because they have to overcome societal views regarding individuals who are different, and also navigate the experience with limited role-models to assist the process. Both Harris (1995) and Stone (1995) describe the ways in which individuals attempt to distance themselves from what they may perceive as a socially undesirable group membership. As Stone (1995, p. 418) notes, "...it is the stigma that most people tend to think of when it comes to deciding whether to acknowledge their own disabilities."

Despite the profusion of literature discussing the social and personal ramifications of more visible disabling conditions (Cahill & Eggleston, 1995; Davis, 1961; Stone, 1995; Yuker, 1988), limited research is available regarding the impact of less visible disabling conditions. Moreover, while research has typically examined attitudes of others towards those considered different (e.g., Katz, Hass, & Bailey, 1988), little is known about the individual's own perception regarding his or her experience. Therefore, the purpose of this study is to examine the meaning women attach to the concepts of disability and illness. More directly, do women with chronic illness consider themselves disabled? Are the two terms (i.e., disability and illness) synonymous for these participants? A second purpose of this investigation is to examine whether illness had affected prior beliefs about illness and disability.

Method

It was the researchers' belief that by listening to women with chronic illness discuss their disability experience one would be better able to understand the ways in which individuals construct the meaning of this significant life event. The interview format allowed for each participant to share her experience of illness, rather than focus on a specific set of questions or a theoretical construct. Therefore, while this study was exploratory and descriptive in nature, it does provide us an opportunity to gain an understanding about how illness is viewed and to be made aware of issues counselors need to recognize and address when working with persons with chronic illnesses.

Participants

Participants of this study were 40 women who volunteered to be interviewed about their experiences of living with chronic illness. Eligibility requirements included the necessity of having been diagnosed for at least one year with one of four chronic health conditions: systemic lupus erythematosus (lupus); multiple sclerosis (MS); rheumatoid arthritis (RA); or osteoporosis. These particular illnesses were selected because they affect women to a far greater degree than men (Falvo, 1991; Lewis, 1992) and all of these illnesses are most often diagnosed in adulthood (Beardmore, 1993; Hall, Rohaly, & Shneider, 1993).

In addition, another goal of the study was to examine the life experiences of women of differing ages and from differing ethnic backgrounds. Criterion illnesses were selected that are typically diagnosed at different life points (e.g., MS in young adulthood and osteoporosis in later life). This allowed the researchers to interview participants whose ages ranged from 28 to 79.

Recognizing recruitment was from a fairly non-diverse geographical region, lupus was chosen as a criterion illness for the additional reason that women who are Hispanic and African-American are typically affected in greater numbers (Beardmore, 1993; New Research, 1994). Despite the desire to gain a more diverse sample, the final group of participants included 39 women who were Caucasian and one woman who was African-American. Although the levels of functional limitation differed among participants (e.g., cane, walker, need no assistance), nearly all reported a substantial impact on their lives (e.g., fatigue, extreme pain, unemployment). In addition, six of the participants were diagnosed with more than one of the criterion illnesses (e.g., lupus and rheumatoid arthritis; osteoporosis and lupus). All participants were recruited through newspaper advertisements, announcements at local social services agencies, and recruitment announcements in the offices of local physicians.

Procedures

The interviews were structured around a Multidimensional Systems Model for Lifespan Wellness (Crose, Nicholas, Gobble, & Frank, 1992) that examined six dimensions of health (i.e., physical, social, spiritual, vocational, intellectual, and emotional). A total of five interviewers were involved at various points in the project, but all interviewers used a similar format, asking such questions as, "Why did you chose to participate in this study?;" "Do you think of yourself as a person with a disability?;" "How would you rate your physical well-being?". Consequently, a series of open-ended questions guided the discussions and included inquiries regarding individual thoughts about disability (e.g., "What were your thoughts about people with disabilities before you were diagnosed?"). In addition, one interviewer participated in the majority of interviews, providing a check on the maintenance of corresponding formats. All participants were informed that the purpose of the study was to better assist counselors in understanding the needs of women living with chronic illness. Although a semi-structured interview format was used, the discussions provided flexibility allowing the interviews to be distinct and centered on what each woman found most central to her life. The interviews typically lasted from one to two hours and all were audiotaped.

Data Analysis

Following the interviews, all audiotapes were transcribed and written copies of each interview were printed. Each transcript was then reread in conjunction with the audiotape to verify the transcription as an accurate representation of the actual interview and to correct any transcription errors. At this point, the transcripts were then coded by numbers. The interviewers met and jointly developed a list of common phrases or themes (e.g., view of disability, relationships, etc.) that had emerged from the interviews and would be utilized as an initial guide when reading the transcripts for analysis.

Each transcript was then read independently by two researchers who coded portions of the transcripts according to the initial guide, and also identified additional themes within individual transcripts. These two researchers then met to compare their findings and identify any contrasting perceptions of the data or any divergent themes not included on the initial guide. Then, summary sheets were developed for each transcript.

At this point, all of the data was entered into the statistical program, FolioVIEWS (Folio Corporation, 1994), to identify all references to the theme of disability and/or person with chronic illness. In addition, the researchers continued to examine the literature regarding the meaning of illness and stigma in an effort to identify both the recurring patterns and fit them within prior theoretical and empirical results. The goal was not so much to categorize participant's responses but to provide information pertaining to the manner in which women with chronic health conditions understand their illnesses.

Results

As suggested earlier, the personal construction of the meaning of illness is value-laden (Kleinman, 1988). It is also emotionally charged due to the likelihood of social stigmatization. Therefore, it was not surprising that many of our participants reacted strongly to the label of disability. In addition, many had considerable uncertainty as to whether chronic illness designated them being persons with disabilities.

Label Difficulties

Although only 29 of the participants responded directly to the question of whether they viewed themselves as a person with a disability, approximately 66% of that group reported that they did not consider themselves disabled. Although 34% indicated that they did think of themselves as persons with disabilities, many referred essentially to disability as being primarily comprised of personal and physical limitations. The remaining women chose to describe their views of illness more in terms of the impact it has had on subsequent events in their lives (e.g., utilizing handicapped parking, attitudinal changes regarding disability). Despite the rather stark limitations that chronic illness had imposed on their lives, many participants appeared to grapple with the meaning of the word disability. As one of the participants with MS reported when asked if she considered herself to have a disability:

"I guess I'm bordering [on having a disability], but I can

still work as well as a lot of them that seemingly don't

have a disability ... I don't feel too much yet, I feel a

little ...".

When asked if she saw herself as a woman with a disability, one of the youngest participants with lupus, stated:

"I guess you might say I am disabled. I can't work. It's

not like somebody--an amputee, you know what I

mean.... ".

Although acknowledging that lupus had imposed some harsh impositions in her life, this participant was still not clear about her role as a person with a disability. One of the older participants also had distinct views concerning the disability label. When asked if she thought of herself as a person with a disability, one woman in her 70s who had lived with RA for over twenty years and had to leave her employment due to it remarked:

[disabled?]" ... not really. Nope, I get around. I think a

person is disabled if either they are on crutches or in a

wheelchair. To me a person that's really disabled is in a

wheelchair and has to be helped in and out of the chair.

That's what I thought was going to happen to me, but

thank the Lord, it didn't."

Most of the women viewed disability as differing from illness in that it was not a constant state or did not require the use of a wheelchair. When asked it she thought of herself as a person with a disability, a woman with MS responded:

"... I guess I kinda have to. I really don't think of

myself as disabled...But there's parts of me that I can't

do what I used to."

This same person had to leave her place of employment due to illness. She described cognitive processing problems along with other physical problems but still struggled to identify herself as disabled. Another woman expressed problems with terminology in this way:

"I say I have rheumatoid arthritis but I don't say that I

am arthritic ... arthritic carries for me a connotation of

crippled or disabled ... I don't think disabled is the right

word ... [If I say] I have arthritis; I'm still in charge of

this. [If I say] I am arthritic; it suggests that it is more

in control of me."

Discomfort with the disability label was a pertinent point for these women throughout this study. Not only did they question whether disability and illness were synonymous; it led some to question whether they, in fact, qualified for this study advertised as "Women with Disabilities." This inability to determine disability was evident in some of the responses to recruitment efforts. Individuals would call but would question their right to participate as demonstrated by the following excerpt:

"...I can't really say that the pain is debilitating, that's

why I said on the phone to you that I'm not sure whether

I really fit into your category of disabled because I don't

think of myself as that way. It's just a matter of tolerating

the aches and pains ..."

One woman with osteoporosis and RA noted:

"...I wouldn't really consider myself someone with a

disability ... it just happened. That just the way it is. It's

not really a disability."

The excerpts reported above were in direct contrast to those women who did see their illness as a disability. For some participants, they found that the identification of illness as disability actually provided some sense of comfort or relief. Terminology had an impact on their sense of control. One woman with MS discussed the importance of letting her family members know that she was having a physically difficult day. She noted that the ability to identify her illness as a disability was instrumental in coping for both her and her husband:

"For a long time, I felt I was not disabled ... I finally grew

to accept that, hey, there is a problem here and I have got

to deal with it. I can't pretend it doesn't exist because

I'm not doing anybody good when I do that..."

But it was the oldest woman in the study who had the most definite views about the labeling. When asked about her thoughts concerning being disabled with osteoporosis, she stated:

"I don't want to be labeled as disabled...Maybe I don't

want to accept the word disabilities. I don't like the

word. I don't want to be branded with it. I don't want to

brand anybody else with it. It doesn't take away from

your ability."

Perceptions of Societal Views

Although one might question each woman's views regarding the meaning of disability and illness, all participants were confronted with also adapting to societal perceptions. The health conditions these women experienced presented some experiences dissimilar to those persons who utilize a wheelchair or have some more visible sign of a disabling condition. Due to the at times invisible nature and remitting pattern of chronic illness, these individuals were faced with issues related to potentially negative judgements by others regarding the reality of their illnesses. One woman highlighted this:

"If I get disability [compensation], I told my husband, I

said, "We're not going to tell anybody." They will say,

"She goes to ball games. She does this, she does that.

What does she get disability for?"

Despite rather severe physical and career limitations, many of the participants had difficulty in determining whether they "deserved" any special treatment such as having reduced social obligations or daily rest periods. Without outwardly visible indications of illness, participants often felt they needed to justify special treatment. Moreover, due to the slow progression patterns of these particular illnesses, questions continued to arise for them regarding illness and wellness. Brooks and Matson (1982) describe the difficulty persons with MS have in adapting to the diagnosis due to the problems related to what degree and whether they are, in fact, sick. One woman with osteoporosis discussed reasons she had stopped attending church:

"...things were being asked of me that I wasn't capable

of doing anymore. They would have bake sales and

would want to know 'will you come to work?' ... I felt

like they felt like 'well, she's always canceling out' ... I

got to feeling like they really didn't understand that I

was really sick and they didn't really, I don't look sick."

A woman with lupus described using a wheelchair at an amusement park:

"...the looks you get from some people when you step

out of the wheelchair and onto the rides was, it's not

really pathetic, it was more, it wasn't disgust, it was

oddity, being different, being singled out as being

different than everybody else and I've never had that

before because I was always, you know just the normal

person."

Surprisingly, one area that appeared to create the greatest conflict for participants regarding their own and others' perceptions of illness revolved around handicapped parking spaces. A woman with both lupus and osteoporosis noted:

"...I have a handicap placard ... I felt so bad when I park in

that spot, then finally I tell myself - I'm talking [about

parking in] handicap spots - that on those days that I'm

so tired that I wonder how I even got out, it's all right to

park in that spot. And on those good days, leave those

spots for someone else."

This same thought was repeated by numerous participants. Within the context of handicapped parking, they appeared to not only minimize their own illness experience, but question their own illness validity. For another woman, despite the long-term difficulties she had faced related to years of illness, the decision to get a handicap placard still loomed rather large for her:

"...I finally broke down and asked my doctor about a

handicap sticker ... [was that a big step for you?] ... yeah,

well I still didn't want the handicap license plate. The

sticker I can not use it or hide it or whatever."

Afraid to be seen as taking advantage of their illness or viewed as nondisabled norm violators, they were most likely to report never using the handicapped parking spaces or waiting until their illness was at its most severe level to warrant special parking. One of the youngest participants, diagnosed with lupus, described her problem with using handicapped parking:

"If the sun's really shining hot that day, then, I will park

in a handicap place.... You get the look. You get the

looks [from others]... I only use it whenever I need to.

Other than that, I won't use it."

A woman with RA provided a similar perspective:

"I have a handicapped parking sticker, but look at me.

On good days I don't use it. On bad days I can still get

out of that car and look good and I have had people

verbally attack me for using the handicap space ... they

will just stare at you like they are chastising you with

their looks...".

So despite the struggles due to the physical components of illness, many of the participants also struggle with the stigmatization that illness brings. Aware that others may judge them harshly, many strive to avoid potential condemnation even when it denies them privileges that they rightly deserve.

Attitude Changes Regarding Disability

Not surprisingly, most of the participants felt that their illness experience had influenced the way in which they now viewed others with disabilities. When asked what they thought about persons with disabilities prior to their own illness, several expressed the idea that they had paid little attention and now wished they had been more understanding or empathetic. While some expressed the idea that little had changed because they felt they had always been sympathetic and concerned about those with disabilities, most believed that there had been a qualitative change in their understanding as a result of their experiences. They discussed really understanding how others felt. One of the older women discussed her changed perspective in this way:

"...back when I was a kid, you'd look at people that was

crippled and all and you didn't feel anything about it,

really, but now I do because I know what they are going

through, the same thing that I had gone through and you

have to feel sorry for them. I take my hat off to people

that doesn't let it bother them too much and they go right

on with life."

Some suggested that they were now far more sensitive to the lack of accessible facilities for persons with disabilities. In addition, some participants suggested that earlier thoughts concerning those with disabilities had been more focused on feelings of pity and this concept was personally disturbing to them now. An example of this mixed feeling was expressed by this woman with RA:

"I never thought I would be one of them...I can only say

that I wanted to help and felt sorry for them."

But she goes on to describe her current views regarding her

own illness:

"I don't want people to feel sorry for me ... no, I don't

want that sympathy all the time. It's not good for me. I

need to be independent."

Interestingly, not only did many of the participants recount ways in which they had dramatically changed their views regarding persons with disabilities, many also suggested that these changed views were one of the most positive aspects of having a chronic illness. One woman with lupus noted:

"I think having a chronic illness is not all bad ... You really

find out about yourself. A lot of people don't know as

much about themselves as I do at this point ..."

Positive personal growth was felt to be the result of their increased level of empathy over feelings of pity and deeper understanding of others on numerous dimensions of social relationships (e.g., strangers with disabilities, family members, friendships).

Implications for Counselors

This study, while descriptive in nature, highlights some important issues regarding the relationships between women with chronic illness and the meanings they attribute to their health condition. Although we caution against generalizations due to the limited geographical location of the study, small sample size, and homogeneous population, there are a number of factors critical for counselor consideration.

First, counselors need to understand how persons with chronic illness may view their difficulties. Two women experiencing MS may have completely different views regarding their illness as a disability. Understanding how an individual perceives the term disability and recognizing whether a woman thinks of her illness as a disability is critical knowledge for counselors. Assumptions should not be made. Marshak and Seligman (1993) stress the relevance of counselors exploring the meaning individuals attach to their disabling conditions, regardless of whether it is newly acquired or more enduring. Through this process, Marshak and Seligman (1993) note, counselors are better able to address any misinformation clients may have concerning the illness, as well as examine personal explanations of causation. Future research needs to ascertain whether men with chronic health conditions attach similar meanings to illness labels. Differential results may provide differential implications for counselors.

A second issue that needs consideration is the difficulty many of the women had with the label. In some ways, it hindered their acceptance of aids that could actually assist in their daily functioning (e.g., using handicapped parking or using a cane to "prevent" fatigue). It also demonstrated some conflict they had over what constitutes disability. For some it might be denial, or a coping mechanism, or a desire to not use a label that categorizes them in what may be perceived as a stigmatizing descriptor. Some individuals relied on downward comparison in order to preserve their own beliefs in self by identifying others who they believed were in worse condition. Clearly, for others, the uncertainty about whether their illness was a disability stemmed from the invisible nature of their disorders and the resulting communication problems they experienced with others. This led to the occasional belief that others do not understand their situation and/or will not believe them. Counselors may need to not only address this concern on an individual basis, but determine whether communication problems also exist within the family structure. Counselors may need to assess whether family members of persons with less visible chronic illnesses recognize the limitations these conditions often produce (e.g., fatigue, limited stamina and endurance), and their impact on the family as a unit.

Third, while many of the women had rather severe limitations in their lives due to chronic illness (e.g., loss of jobs, inability to complete household chores), these factors alone did not constitute a view of self as disabled. Due to the slow, progressive nature of many of the women's illnesses, they have had time to adapt gradually to the changes that have occurred in their lives. Therefore, they saw these limitations as more of an accommodation to illness, rather than development of an awareness of self as a member of the disability community. As Stone (1995) notes, society as a whole has difficulty accepting nonvisible disabilities as real. Consequently, counselors need to be cognizant of the impact individual and societal views have on the identification of disabling conditions. Perhaps one significant ramification of this difficulty with the label of disability is that it denies or limits potential role models and/or sources of strength one may gain by seeing oneself as a member of the larger disability community. This may also hinder persons seeking rehabilitation services or seeking assistance to maintain employment due to a belief that these services are only for persons with visible disabilities. Rather than focusing on negative stereotyping, counselors may be instrumental in assisting individuals in identifying with others who have gone through similar struggles with chronic illness and/or other disabling conditions.

A final area that needs consideration is the significant implication of long-term illness for devalued self-perceptions. These women faced the issue of feeling ill but looking well. It not only created confusing feelings for the women in their own illness adjustment process but forced them to deal with often more blatant negative attitudes of others. Since many did not appear to be disabled (e.g., utilize canes or wheelchairs), they expressed feelings of not being understood. As discussed earlier, one woman described getting chastised for parking in handicapped parking spots.

Although extensive research has examined attitude formation concerning persons with disabilities, little of this body of literature has addressed potential implications for persons with nonvisible but long-term progressive conditions. In addition, future research may wish to examine if these experiences related to chronic illness differ with gender. Counselors and researchers need to address issues pertaining to individual perceptions of chronic health conditions and the difficulties persons with nonvisible disabilities face. Through these processes, counselors can better assist and support individuals confronted by long-term and difficult health conditions.

Notes

This study was supported in part by a grant from the John Anderson Foundation. We also wish to acknowledge Lois A. Benishek, Catherine Hayes, and Renee Zucchero for their assistance in this investigation.

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Phyllis A. Gordon, Assistant Professor, Department of Counseling Psychology and Guidance Services, Ball State University, Muncie, IN 47306