QUALITATIVE

Paterson et al. / HEALTH

LIVING WITH
RESEARCH
DIABETES
/ November 1999

Living With Diabetes as a

Transformational Experience

Barbara Paterson
Sally Thorne
John Crawford
Michel Tarko

The construct of transformation has been presented in many research studies as the epitome
of living with a chronic illness. Because it has been inadequately defined, however, many
other concepts (e.g., hope, meaning, control) are used in ways that suggest considerable
overlap and correspondence with transformation. This article represents an attempt to expli-
cate the structures and processes of transformation as they were revealed in a qualitative
inquiry into the experience of individuals with Type I diabetes. In the accounts constructed
with participants in this study, the process of personal transformation was significant in the
attainment of healthy outcomes. The authors describe this transformation and examine its
relationship to control and to the valued outcomes of intensified sense of self, meaning, and
mastery.

T he trend among researchers in past decades has been to regard living with a
chronic illness as a burden. More recently, however, several authors have sug-
gested that having a chronic illness can actually be a gift, something that enhances
the quality and meaning of life (Coward, 1990; Coward & Lewis, 1993; Finfgeld,
1995; Halldorsdottir & Hamrin, 1996; LeMone, 1995; E. Lindsey, 1996; Luker, Bea-
ver, Leinster, & Owens, 1996; Yoshida, 1993). They propose that living with a
chronic illness can enable individuals to experience life, themselves, and others in a
way that was inaccessible previously; that is, they can be transformed by the experi-
ence of living with a chronic illness to experience positive and rewarding outcomes.
Critical reflection on this literature sparks a number of troubling questions
about the phenomenon of chronic illness as a transformative experience. The defini-
tion of transformation, including its outcomes, has remained muddied by the vari-
ety of interpretations and overlap with other concepts such as hope, actualization,
and mastery. Transformative processes have not been described beyond vague gen-
eralities, and what has been articulated is not particularly revealing. It remains
unclear, for example, why some people experience transformation and others do
not. Furthermore, the relationship between this process and the current social con-
text in which chronic illness is experienced has not been examined rigorously.

AUTHORS’ NOTE: We gratefully acknowledge funding from the British Columbia Health Research
Foundation.
QUALITATIVE HEALTH RESEARCH, Vol. 9 No. 6, November 1999 786-802
© 1999 Sage Publications, Inc.

786
 Paterson et al. / LIVING WITH DIABETES 787

In this article, we use our findings from a study of expertise in self-care decision
making in Type I diabetes to begin to explicate the structure and process of transfor-
mation within chronic illness. In so doing, we hope to extend the current analysis of
why and how the phenomenon of transformation occurs and to propose some ten-
tative understandings of what it might mean.

LITERATURE REVIEW

Researchers have described transformation as an aspect of living with many

chronic illnesses including cancer, AIDS, arthritis, multiple sclerosis, diabetes,
amyotrophic lateral sclerosis (ALS), stroke, myocardial infarction, chronic pain,
coronary disease, and spinal cord injury. Transformation generally has been
referred to as a product of certain transforming experiences, and it has been largely
defined according to its perceived outcomes rather than its constituent parts or pur-
poses. The outcomes of transformation typically are reported as positive, and it is
assumed that transformation represents a special form of transition from one way
of being to another that is more suited to life with a chronic illness. However, some
researchers have commented on the time and energy demands required by the
transformative process (Coward, 1990; Yoshida, 1993).
Researchers generally refer to transformation in chronic illness as an ongoing
process, entailing growth and learning as new experiences occur. Several have pro-
posed that transformation is an aspect of the cumulation of an evolutionary process
of learning to live with a chronic illness (Johnson, 1988; Johnson & Morse, 1990;
Morse, 1997; Morse & Johnson, 1991; Newman & Moch, 1991). Embedded in this
evolutionary conceptualization is the implication that transformation represents
the adaptive ideal of living with a chronic illness. For example, Newman and Moch
(1991) describe participants with coronary heart disease who underwent a transfor-
mative experience as having “a more fully integrated pattern” than other research
participants.
Two themes are prevalent in the discussion of transformation in chronic illness:
restructuring of the illness experience and restructuring of self. Various researchers
have identified these themes as components of transformation in chronic illness
(e.g., Charmaz, 1991, 1995; Morse, 1997). Some have identified restructuring of the
illness experience as an outcome of the restructuring of self (e.g., Corbin & Strauss,
1988). Still others have presented transformation as arising from the restructuring
of self and the illness (e.g., Fife, 1994).

Restructuring the Illness Experience

The restructuring of the illness experience has been described as a philosophical
and cognitive shift in how the illness is perceived, from a threat and a struggle to
that of a challenge to be tackled (Barton, Magilvy, & Quinn, 1994; Finfgeld, 1995;
Quinn, Barton, & Magilvy, 1995). This shift is accomplished by reframing what is
realistically possible as well as the losses caused by the disease (Moch, 1990; Paul,
1994). In this context, the strategy of normalization, or reframing what is normal
while acknowledging the limitations associated with having a chronic illness, is a
strategy that fosters transformation. Thorne (1990), however, suggests that some
788 QUALITATIVE HEALTH RESEARCH / November 1999

individuals choose not to normalize because of concerns that this would prevent
them from creating realistic identities.
Mastery of the illness or the ability to control the disease and its impact on one’s
life, being positive about one’s future, and accepting oneself as an individual with a
chronic illness are the foci of restructuring the illness experience (Gloersen et al.,
1993; Johnson & Morse, 1990). The concept of control frequently is introduced in
discussions about restructuring the illness experience. Its applications to the topic
are varied and often confusing. For example, Newman and Moch (1991) state that
the participants in their study who had experienced a transformation had a lesser
need for control than did the other participants. Johnson and Morse (1990), how-
ever, define the transformative process in learning to live with an illness as an
aspect of regaining control. Regaining control, according to these researchers, is
integral to adaptation in illness.
Restructuring of the illness experience has been associated with outcomes such
as appreciation of what is important (Brodsky, 1995), courage (Finfgeld, 1995;
Moch, 1990; Nokes & Carver, 1991; Predeger, 1996), a future orientation toward life
goals (Barroso, 1995, 1996; Derenowski-Fleury, 1991; Paul, 1994), collaborative rela-
tionships with health care professionals (Ferrans, 1994; Nyhlin, 1990; Thorne &
Robinson, 1988), acceptance of the illness as permanent and unpredictable (Folden,
1994; Nyhlin, Lithner, & Norberg, 1987; Powell-Cope, 1995; Schaefer, 1995), and
self-empowerment (Morse & Johnson, 1991; Paterson & Sloan, 1994; Robinson,
1990). Hope is regarded by some researchers as an outcome of restructuring the ill-
ness experience (Folden, 1994; Kodiath & Kodiath, 1995) but by others as that which
gives rise to transformation (Hall, 1994; Paul, 1994).

Restructuring of Self
According to most researchers, restructuring of self in chronic illness emerges from
a need to maintain self-integrity, often perceived as synonymous with health or bal-
ance (Carpenter, 1994; Halldorsdottir & Hamrin, 1996; Kagawa-Singer, 1993; Ken-
dall, 1991; A. Lindsey, 1993; Morse, 1997; Siegel & Krauss, 1991). These researchers
propose that in the restructuring of self, an individual with a chronic illness experi-
ences a transformation in his or her self-identity: The individual shifts from “a vic-
tim of circumstances to [a] creator of circumstances” (Barroso, 1995, p. 44).
The restructuring of self often is viewed as occurring in response to a threat to
self-integrity resulting from the illness experience. Dildy (1996), for example, sug-
gests that the restructuring of self is a cognitive response to the disintegration of the
self in rheumatoid arthritis that enables the individual to experience less personal
suffering and to come to terms with the losses associated with the illness. Corbin
and Strauss (1988) refer to the individual’s ability to transcend the body as the pri-
mary motivation for restructuring of the self. Transcendence generally is described
in terms of euphoric escape from the everyday realities of a chronic illness. For
example, Lindsey (1996) refers to transcendence as a feeling of escapism achieved
through visualization, daydreaming, and fantasy. Thus, it remains unclear from
this literature whether transcendence is an outcome of transformation or a strategy
to effect transformation.
A common proposition is that the self is restructured to integrate the limitations
imposed by the disease; this is deemed necessary to accept and come to terms with
 Paterson et al. / LIVING WITH DIABETES 789

the illness. For example, a person with a spinal cord injury must view himself or her-
self as a person with a disability before he or she can truly adapt to having a disabil-
ity (Carpenter, 1994). A strategy that is used to accomplish this goal is the objectifi-
cation of the diseased body (Corbin & Strauss, 1988). Accordingly, an individual
has the capacity to foster an identity that is acceptable, that is, to be transformed by
separating the person of the past from the person of the present. Some have linked
the objectification of the body with outcomes of pride (Ferrans, 1994; Pobl &
Winland-Brown, 1992), confidence (Hernandez, 1995), and less uncertainty
(Johnson & Morse, 1990).
It often is unclear in discussions about the restructuring of self whether mean-
ing is an outcome or a precursor of transformation. For example, Beaudoin (1993)
proposes that the restructuring of self in living with AIDS results in a psychospiri-
tual change that transforms the meaning individuals ascribe to the illness. Fife
(1994), however, states that in the restructuring of self, the individual attempts to
create consonance between self-identity and the identity that is shaped by life
events. This search for meaning culminates in a transformative experience. Many
authors equate meaning with providing reasons or creating purpose for the indi-
vidual to understand and make sense of why illness, suffering, and losses have
occurred (Baker & Stern, 1994).
The findings of research pertaining to transformation in chronic illness are sur-
prisingly inconsistent. Absent from this area of research is a clear definition of trans-
formation and an explication of relationships between transformation and other
illness-related concepts such as meaning and hope. There has been a lack of critical
analysis of both the construct of transformation and the findings of research per-
taining to it. For example, we located only one research report in which the
researchers questioned whether transformation is a socially or personally con-
structed occurrence. Rittman, Northsea, Hausauser, Green, and Swanson (1993)
state that their British participants might have described living with a chronic ill-
ness in positive terms of transformation because of the cultural expectation of
strength in the face of adversity. For the construct to serve any useful purpose in our
understanding of chronic illness experience, therefore, we perceived a critical need
for interpretive and in-depth analysis.

RESEARCH DESIGN

Our study of expert self-care decision making in Type I diabetes used an emergent
design that took general theoretical and procedural direction from grounded the-
ory research in the tradition of Glaser and Strauss (1967) and more recent develop-
ments by Lincoln and Guba (1985) and Thorne, Reimer Kirkham, and MacDonald-
Emes (1997). The research approach entailed simultaneous data collection and
analysis as well as systematic efforts to check and refine developing categories of data
(Charmaz, 1983). The ongoing data collection and analysis directed further litera-
ture review, hypothesis development, sample selection, and interview questions.
For example, when it became clear that some participants were unable to detect
body cues indicating hypoglycemia, we conducted a literature review about hypo-
glycemic unawareness and asked the participants more questions about when and
790 QUALITATIVE HEALTH RESEARCH / November 1999

how this occurred. Analysis of the transcripts was guided by traditional constant
comparative analytic techniques (Glaser & Strauss, 1967).

Sample
The data for this study were drawn from accounts of individuals who were success-
ful in their self-care management; that is, they were able to make trustworthy deci-
sions about diabetes self-care management and to maintain good overall glycemic
control. A total of 12 people volunteered in response to newspaper or Canadian
Diabetes Association newsletter advertisements. Another 10 participants were
nominated by five diabetes internists. All of the 22 individuals who participated
were Caucasian. The 14 women and 8 men ranged in age from 24 to 81 years (M =
43.3). They had been diagnosed with Type I diabetes for 15 to 41 years (M = 30.3). Of
the 22 participants, 10 lived in rural communities and 12 lived in urban areas. All
but 4 of the participants had a high school or postsecondary education. Also, 8 par-
ticipants had one or more diabetes-related complications including nephropathy
(1), retinopathy (5), atherosclerosis (1), and neuropathy (3). The selection criteria
included individuals who (a) were at least 18 years old, (b) were diagnosed as hav-
ing Type I diabetes for at least 15 years, (c) spoke English, and (d) lived in British
Columbia.

Method
Data collection took place over a 2-year period, permitting the researchers to study
the participants’ decision making over time and in a variety of situations. Multiple
data sources to triangulate the data and to describe the processes of decision mak-
ing included a modified “think-aloud” technique, formal interviews, and final
focus group interviews. The modified think-aloud technique of data collection
entailed the use of a handheld, voice-activated tape recorder with which the partici-
pants recorded decisions they made regarding diet, insulin, physical activity, rest,
stress management, skin care, and other diabetes-related issues throughout an
entire 1-week period three times over a calendar year. The primary advantage of the
modified think-aloud strategy is that it reveals the participants’ everyday decisions
in a current manner rather than a retrospective or simulated manner (Fisher & Fon-
teyn, 1995; Fontana & Frey, 1994; Fonteyn & Fisher, 1995).
The participants were interviewed on recruitment into the study, and an addi-
tional three interviews were conducted within 1 week of each think-aloud decision
recording session. Each taped interview was approximately 2 hours in duration. In
the initial interview, the participants detailed their experience with diabetes to date
as well as demographic particulars. In subsequent interviews, interview questions
were generated from pertinent literature or previously collected and analyzed data.
For example, when three participants stated that becoming expert self-care manag-
ers had “added meaning” to their lives and that they had been “changed” in the
experience, we read about transformation in the literature and began to include
interview questions prompting for related issues (e.g., “How does your life now
compare to what it was like before you learned to manage your diabetes?”).
Although the term transformation was used by only one participant, our inquiries
during the final focus group interview confirmed that all participants understood
 Paterson et al. / LIVING WITH DIABETES 791

the term to capture changes that had occurred in their process of learning to manage
the disease.
The constant comparative method of data analysis involved interpreting data
inductively generated from fieldwork to support or challenge emerging categories
and theoretical possibilities (Bowers, 1988; Glaser & Strauss, 1967). It included
developing hypotheses as the fieldwork progressed and testing these hypothetical
relationships by means of further data collection and analysis in the search for con-
firming or disconfirming evidence to support or negate the emerging theory (Stern &
Pyles, 1986). Early data were coded with descriptive phrases or words. As more
data were collected, these codes were revised. Emerging categories were developed
from the clustering of codes and by comparing them against each other to ensure
that they were mutually exclusive and covered the range of variations within the
data set (Baker, Wuest, & Stern, 1992). These steps were repeated until the code was
verified and yielded no further properties (Glaser & Strauss, 1967). For example,
several participants indicated that there were times when they resented their diabe-
tes. Initially, we described this behavior as “negative feelings toward diabetes.” As
we gathered more data in the think-aloud recordings, we began to see that some
participants reported such feelings in terms of “not wanting the disease to take over
my life” or “not wanting to be controlled by the disease and living as I’d like to.”
Therefore, in subsequent interviews, we asked the participants how they felt about
having diabetes and what these feelings of resentment represented to them. We dis-
covered that “resentment” would be more accurately represented by the code “con-
trolling the effects of the disease rather than being controlled by the disease.” The
participants decided to live as normally as they could in response to their anger and
resentment that the disease was causing them to live unbalanced lives.
The participants attended a 2-hour focus group interview at the end of the
research in groups of five to eight. During the focus group interview, the research-
ers shared the research findings and sought verification of the interpretations of the
findings (Krueger, 1988; Morgan, 1993; Stewart & Shamdasani, 1990). The partici-
pants in focus groups suggested changes in wording to reflect their actual experi-
ence. For example, the researchers initially had identified a “ritual” of diet and exer-
cise maintained by each participant. The participants objected to the implications of
rigidity inherent in this term, and it was changed to “routine.” Thus, the final inter-
pretations could be understood to reflect a shared understanding of this group of
participants, developed over time and validated in a variety of ways.

RESEARCH FINDINGS

The Experience of Transformation

Transformation was defined by the 22 participants of the research study as “a pro-
found new awareness of what you could be” and “the light dawning that things
could be different” in an ongoing series of steps leading toward “coming to terms
with me as a diabetic and me as the person I wish to be.” They described transforma-
tion as a dynamic evolution, a “hatching out of your shell.” This process was
deemed to be “never complete” and was characterized in terms of an ongoing dis-
792 QUALITATIVE HEALTH RESEARCH / November 1999

covery such as “discovering that I could control my diabetes. It didn’t have to con-
trol me.” Transformation always resulted in significant changes in the participants’
values, beliefs, assumptions, and/or practices in living with diabetes.
The initial transformative experience was described as the most dramatic and
significant in the participants’ experience of living with diabetes. It heralded a new
and enhanced awareness of self in relation to the disease and to caregivers. The ini-
tial transformation occurred when the individual discovered that the person with
diabetes, not professionals or significant others, knows best what works for him or
her. This philosophical shift in the way in which the expertise of the individual was
viewed resulted in a conscious decision to assume control of the self-management
of the diabetes. The initial transformation, therefore, provided a fundamental con-
text for subsequent transformative experiences: “I realized that I would be the one
who made the decisions about what is best for me. Well, after that, there’s been one
revelation after another about how to live with diabetes, to live a normal life like I
want to.”
According to the participants, transformation beyond the initial transformative
experience entailed an ongoing process of preserving and renegotiating the balance
between themselves and their diseased bodies. Although this was seen as a cogni-
tive process, it also was affective (“It can get to be very emotional sometimes”).
Transformation was experienced not as an upward straight trajectory but rather as
plateaus (“periods when everything stays pretty much the same”), accelerations
prompted by new and unfamiliar challenges in living with diabetes, and “times of
retreat.” Accelerations in the transformative process occurred with changes in
response to periods of disequilibrium that followed a decision to address an
illness-related challenge.

Like last year, when my sugars would go crazy for 3 days and it made no sense at all.
I was determined to get to the bottom of it. . . . I studied my notes and looked for pat-
terns. I found out that on the 1st day of my period, I can expect to be low. On the 2nd
and 3rd days, I can expect to be high. I have steep learning curves after experiences
like that.

When energy required by the transformative process was diverted by pressing

demands (e.g., having a sick child) or when other life goals took precedence, partici-
pants experienced periods of retreat, temporarily reverting back to previous prac-
tices. The participants viewed such periods of retreat as attempts to “regroup” and
“reenergize.”

When my partner was dying, I decided to give my insulin but not to do the [glu-
cometer] readings or care much about what I ate. I knew it was temporary, but I also
knew that I didn’t have the energy then to think about anything but her.

The participants’ descriptions of the structure and process of transformation in

living with diabetes are represented in Figure 1, a model of transformation in
chronic illness. The participants described the transformative experience as a chal-
lenge that led to transformation and a differentiation of self that led to further
transformation.
 Paterson et al. / LIVING WITH DIABETES 793

FIGURE 1: Model of Transformation

Challenges Leading to Transformation

Challenge was a central feature of the participants’ descriptions of transformation
in living with diabetes. The types of challenges that might lead to transformative
experiences were those deemed significant (“beyond what you would normally
794 QUALITATIVE HEALTH RESEARCH / November 1999

expect in the everyday of diabetes”) and presenting new opportunities for viewing
the self and the illness experience. After the initial transformative experience, chal-
lenges leading to transformation were consistently identified as influencing or hav-
ing the potential to influence the participant’s ability to assume control in the self-
management of diabetes. Several participants stated that they made a conscious
decision to see illness-related problems as challenges, not as problems or threats,
because challenges presented more opportunities for growth: “Problems are intimi-
dating. They paralyze you. You’re so worried about what might happen if it isn’t
resolved that you can’t think straight. You aren’t creative.”
Challenges leading to transformation arose in two ways: as a threat to self-
integrity and as a challenge presented to the individual by others. Each challenge
entailed a problem or dilemma with no clear resolution. The lack of an obvious solu-
tion was viewed as an opportunity for learning about and enhancing diabetes man-
agement as well as a situation of risk and vulnerability.

I was aware that I didn’t have the experience to experiment, but I felt that it was the
only way to discover if it was the insulin that was causing me not to feel the warning
signs of hypoglycemia any longer. I was so nervous the first time I tried it.

Threats to self-integrity that were interpreted as challenges often were identi-

fied when the individual encountered a critical situation that appeared to signifi-
cantly threaten the desired balance between the self as the person with diabetes and
the self as the person who wished to live a normal life. A common example was
unanticipated hypoglycemia. Through experience and vigilance, the participants
were able to detect patterns within their bodies’ unique responses and accurately
anticipate their blood glucose levels in most situations and, therefore, maintain gly-
cemic control. Incidents of unanticipated hypoglycemia generally were viewed as
jeopardizing control of their bodies. This threat to self-integrity was embraced as a
challenge, causing the participants to reflect on why this was occurring and to
determine ways in which to return to the balanced lives they desired.

I was shocked that [my blood glucose level] was so low. I couldn’t account for it.
Here I was, imagining that I was having an ordinary day, that I knew what I was
doing. And then this. I wonder if maybe it was the vacuuming. I don’t know why,
but vacuuming seems to be harder on me than other chores around the house. I need
to figure this out, though. I can’t be bottoming out all over the place. I think I will
check my diary and see if vacuuming has caused this to happen before.

Threats to self-integrity that were embraced as a challenge generally were pre-

sented as negative or unsatisfactory experiences in living with the disease. For
example, six participants reported that they had been accused of cheating by health
care professionals because they had abnormal blood glucose levels, although they
had been adhering rigidly to the prescribed treatment regimens. They responded
by questioning their previous assumption that professionals were experts about
what works best for them in diabetes management: “I no longer had faith that [the
physician] knew what was right for me.”
At times, challenges arose that were viewed not as threats to self-integrity but
rather as dilemmas offered by others. For example, five participants were coached
to consider “another way of doing things” by a health care professional and then,
 Paterson et al. / LIVING WITH DIABETES 795

with the professional’s support and guidance, began to transform the way in which
they viewed their diabetes management. Two participants stated that the profes-
sional had known that they were ready for transformation before they did. They
stated that the trust they had in the individual’s competence and their confidence
that the professional knew them well “as a diabetic and as a person” were instru-
mental in the decision to entertain a “new way of looking at diabetes.” Three other
participants stated that their respect for individuals with diabetes who appeared to
lead healthy lives had caused them to compare their perspectives regarding diabe-
tes management to the perspectives of these individuals.
Whether one would interpret a new alternative as a threat or a challenge to be
embraced was largely influenced by one’s personality, according to 16 of the par-
ticipants. In particular, they identified “seeing situations as opportunities rather
than as danger,” “being action oriented rather than passive,” and “having a general
sense of personal responsibility for things in your life” as personal styles consistent
with transformation. However, 4 participants thought that those who welcomed
the challenges associated with living with diabetes were likely to be “risk takers” or
people with a high need for personal control. In addition, 1 participant indicated
that she approached diabetes-related challenges cautiously and armed with a great
deal of resource literature: “It’s like I handle all the challenges I face in life, from my
car to my kids.” These various personal styles explained a range of perspectives
with regard to how the challenges associated with the disease could facilitate or
inhibit transformation.
Discovering that they could respond to challenges that originally seemed
daunting encouraged several participants to change how they viewed themselves.
They reported enhanced self-esteem, confidence, self-efficacy, and hope because of
this realization. Transformation did not depend on the satisfactory resolution of a
challenge; significant discoveries occurred no matter what the outcome: “Even if I
was not completely successful, I learned lots and I had the courage to face the
problem.”

Differentiation of Self and Body

Beyond the process of embracing a challenge, the participants also articulated
transformation as an outcome of the differentiation of the self from the body. For the
illness-related problem or dilemma to be viewed not as a threat but rather as a chal-
lenge that could be met, the individual had to believe that the disease and its impact
could be controlled and that the individual no longer was at the mercy of the dis-
ease. This was accomplished by the differentiation of the self. Differentiation of the
self entailed believing and acting as if the individual was the primary agent of the
outcome of the challenge process, perceiving the self as the subject and no longer the
object of the disease. By virtue of the differentiated self, the participant learned to
relate to the body in a way that enabled one to address the challenge before him or
her, to maintain self-integrity, and to learn new ways of being and doing in living
with diabetes, in other words, to be transformed. As one participant explained,

I no longer see myself as the person who is a diabetic. I see that I have diabetes, sure.
But it’s not the whole of who I am. Neither is the fact that I play piano or have big
feet. These things are just part of my life.
796 QUALITATIVE HEALTH RESEARCH / November 1999

Another participant elaborated,

Before, I was convinced that my life was only as good as my diabetes. If my blood
glucose was okay, I was okay. Now, I see it differently. I like my sugars to stay
within a certain range because that way I feel better and I can do what I want to do.
But if my sugars are low or high and I can’t figure out why, I don’t get bent out of
shape. I just try to figure out what happened and I learn from it.

The participants stated that much of the differentiation of self involves being
beside oneself, watching and reflecting on the self and its experiences. They
reported viewing their bodies as if they were “on the sidelines, looking at it from a
distance.” One participant stated that this was akin to “acting like a reporter, paying
attention to every detail of the [illness] experience, making notes, and deciding
what is important.”
By differentiating the self from the body and the body from the self, the individ-
ual attempted to create an illness experience that was independent of the self while
at the same time related to it. The process of self-differentiation required the partici-
pants to review their values, beliefs, and assumptions regarding the relationship of
the self to the body. This review often resulted in new insights and questions such as
the following:

I used to think that if I were just good enough, my blood sugar would always be fine.
Now, I see my sugars as if they are a record of my body. I don’t feel they are a reflec-
tion of who I am or of my ability.

The participants frequently described their transformed selves in terms of a

new appreciation for their expertise as managers of diabetes and their reluctance to
comply with general regimes prescribed by health care professionals. The three
themes characteristic of the differentiated self were that (a) people with diabetes
know their body responses best, (b) each person has unique responses that cannot
be predicted by textbook cases and universal norms, and (c) people with diabetes
have a practical knowledge that is largely inaccessible to those without diabetes.
Viewing the self as in control of and separate from the illness assisted the par-
ticipants in transcending the experiences of the body to focus on life goals, despite
the limitations imposed by the disease. As one participant explained, “I imagine all
things as possible because it’s me who will make it happen.” Viewing the body as an
object that could be controlled enabled the participants to downplay the constant
challenges they faced in living with the disease because they were confident that
they would be able to handle them. Consequently, the transformation that arose
from the differentiation of self from the body led to an enhanced confidence that
they could tackle other disease-related challenges: “I feel more confident that I can
handle the next crisis that comes about. I am more optimistic about my future, about
living the way I want to live.”
The differentiated self resulted in many positive outcomes, primarily a percep-
tion of being healthy. As 1 participant said, “I have a disease and I accept that, but I
am living the way I would like and I am healthy because of it.” Health was inter-
preted as self-enhancement, a sense of meaning, transcendence, mastery, and bal-
ance. The participants defined meaning in a variety of ways. In addition, 7 partici-
pants indicated that their commitment to teaching and supporting others about
 Paterson et al. / LIVING WITH DIABETES 797

diabetes arose from the new sense of meaning that they had experienced: “If I can
share what I have learned, then someone else might not have to learn the hard way.”
Another 12 participants stated that meaning was derived from an appreciation “for
what is really important in life” including spirituality. Balance was defined as an
acceptance of the inevitability of changes in living with diabetes and a commitment
to live as well as possible within the constraints of the disease.
Despite its positive outcomes, the participants viewed transformation as a
“double-edged sword.” They stated that prior to the initial transformation, when
they saw the body and the illness as controlling their lives, they might have felt
deprived and curtailed, but they also felt protected and secure. On transformation,
however, they viewed themselves as directing their care. Because of this, they expe-
rienced a dynamic tension between feeling autonomous and liberated and feeling
alone and solely responsible. As one participant articulated it, “I’d just like to throw
someone else the ball for a little while.” Furthermore, participants were concerned
that “what can be found [the transformed self] can also be lost.” Their determina-
tion to maintain their transformed selves was at times a source of interpersonal con-
flict. For example, several reported “becoming aggressive” in the hospital when
their needs and wishes were denied by hospital staff:

After this transformation occurred, I hated being in situations where people would
take away my control, like in emergency departments or the hospital. It’s really bad
with doctors and nurses who don’t really understand that your diabetes isn’t the
same as what they learned in their textbooks. If you let them decide for you, you
wind up getting sicker because your sugars are all out of whack.

Thus, whereas the participants’ accounts illuminated the liberatory and powerful
feelings associated with a transformative experience in managing life with this
complex disease, they also raised the specter of how tenuous and transient positive
outcomes and successes sometimes could be.

DISCUSSION

As described by the participants in our study, transformation was an evolutionary

activity that entailed responding to illness-related challenges and, in so doing,
developing a transformed self that is differentiated from the body and the illness.
Transformation was both an outcome of tackling an illness-related challenge and a
strategy to mediate the impact of illness. This finding might reveal one reason why
the research in this area has produced such contradictory findings. If outcomes of
transformation are not differentiated as to the self-enhancements associated with
being able to tackle a challenge and those outcomes that are specifically derived
from the way in which the challenge is tackled (i.e., by the differentiation of self),
then this might lead researchers to confusing and often misleading findings.
A significant finding of our study was the role of differentiation of self in the
transformative process. Accordingly, in chronic illness, although one must emerge
from the self as a person with a disease to integrate and relate to it, much of the self
must remain embedded in the illness experience. Just as a photographer might shift
the figure and foreground of a photograph to accommodate various moods and
798 QUALITATIVE HEALTH RESEARCH / November 1999

effects, the transformed self in chronic illness takes on the capacity to perceive ill-
ness as the meaning context and not simply the body or the disease. When the indi-
vidual comes to know the body from the perspective of the self, it becomes possible
to consider the diseased body in a more detached and objective manner. As such,
the lived experience of illness contributes to the self in much the same way as
“silences in a melody add to the complete whole” (Zuazo, 1997, p. 56).
The research findings can be interpreted in relation to the constructive-
developmental perspective (Kegan, 1982) in which, behind the self, there exists a
process that creates the self. This conceptualization can help us to understand trans-
formation as a process rather than a discrete entity, as dynamic rather than static,
and as dialectical rather than dichotomous (Kegan, 1982). In the constructive-
developmental perspective, transformation in chronic illness might be interpreted
most usefully as periods of equilibrium followed by periods of instability and a
qualitatively new balance. This could explain why the trajectory of transformation
is not sequential but rather is characterized by plateaus, peaks, and retreats. Rather
than focusing on distinctions between whether an individual has or has not been
transformed by his or her experience, we might use the notion of transformation as
a mechanism to understand essential experiential processes. Therefore, transfor-
mative insights will not, in and of themselves, represent peak adaptation to illness.
Similarly, retreats can be understood as an incremental fluctuation or a “two steps
forward, one step back” approach to dealing with anxiety caused by new learning
(Brookfield, 1991, p. 52) rather than as a regression or an abandonment of the trans-
formative journey.
In its illumination of meaning making as an evolving process, the constructive-
developmental framework offers the liberating notion that it is the process and the
individual’s experience in this process, not the stages or elements, that should be the
focus of the health professional (Kegan, 1982). Therefore, people with diabetes
should not be categorized as transformed or untransformed; rather, they should be
understood as “people evolving.” If we focus our enthusiasm entirely on the trans-
formative elements within their experience, we deny them and ourselves a concep-
tualization that represents a whole and complex phenomenon.
It seems reasonable to infer that health care professionals who care for indi-
viduals with diabetes and other chronic illnesses should support and acknowledge
both their self-management and their differentiation. This will entail giving the
individuals sufficient opportunities to speak about challenges they have encoun-
tered and listening to their accounts. More research is needed to determine the most
effective ways for health care professionals to accomplish these goals.
Our research sample was unique in that it represented experienced, highly
self-directed managers of illness care. Research has demonstrated that individuals
who fit such a profile might have a heightened need to find meaning in the experi-
ence of living with a chronic illness (Baker & Stern, 1994). In his research on people
experiencing terminal cancer, Gregory (1994) demonstrates that people respond to
the illness experience in congruence with who they are, were, and expect to be. It is
unclear whether people who do not express similar needs for autonomy and control
would experience transformation at all or in the same manner as did the partici-
pants in our study. Further research is warranted to investigate the suggestion from
this study that some personality styles might play distinct roles in shaping the
transformation experience.
 Paterson et al. / LIVING WITH DIABETES 799

From our perspective, the notion that transformation may be regarded as the
ideal experience in chronic illness and held up as an expectation to all those with
chronic illnesses should be treated with considerable caution. The idea of transfor-
mation is fundamentally pleasing to heath care professionals who struggle to find
purpose and reason for the suffering and loss that they witness in those who experi-
ence chronic illness. Because of this, they might inadvertently communicate the
assumption that individuals who have not experienced transformation are not suc-
cessful in their adaptation to living with the disease. From our perspective, there
might be many reasons why transformation is not experienced by everyone. Indi-
viduals with a sense of self-integrity as passive recipients of care might not feel the
need to respond to the types of circumstances perceived by participants of this
study to be threats. Similarly, individuals who are unwilling or unable to expend
the energy required by the transformative process because of other pressing priori-
ties might be expected to interpret challenges differently from those whose primary
focus is illness management. Research is required to identify those who embrace or
negate challenge as a transformative experience. In addition, further research needs
to be conducted into possible correlations between the transformative process and
the effectiveness of certain self-management practices.
Our research included only participants with Type I diabetes. Diabetes might
be unique among chronic illnesses in that glucometers provide instant concrete
feedback about a critical aspect of the body’s status, thereby assisting individuals in
managing and mediating the impact of the disease. Further research should investi-
gate the validity of the Model of Transformation in other chronic illnesses, particu-
larly those without obvious self-regulatory feedback mechanisms such as ALS and
multiple sclerosis.

CONCLUSION

The preceding discussion was an attempt to clarify both the structure and process of
transformation in living with a chronic illness, specifically Type I diabetes. The
research findings supported transformation as an evolving nonlinear process in
which the individual learns to restructure the self and the illness experience
through the differentiation of the self. One contribution of this research was to prob-
lematize the relationships among and between concepts such as adaptation and
control in the transformation process. Clearly, the translucent boundaries among a
range of concepts in the chronic illness literature make it difficult to establish the
commonalities and variations among individual experiences.
The major significance of this research lies in the articulation of transformation
as the result of a conscious decision to identify and interpret a challenge and, in so
doing, to create a new relationship with the illness and with those who provide
health care. Contrary to previous research depicting transformation as an ethereal
experience achieved only if one lives long enough with a chronic illness, the find-
ings of this research point to transformation as a means of mediating the impact of
disease by altering one’s cognitive and affective response to it. This research will
assist health care professionals in creating the context in which an individual can
best approach the complex questions of self and identity within illness.
800 QUALITATIVE HEALTH RESEARCH / November 1999

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Barbara Paterson, R.N., Ph.D., is an associate professor in the University of British Columbia School
of Nursing. She has conducted several studies of expert decision making by people with long-standing
chronic diseases, particularly diabetes.

Sally Thorne, R.N., Ph.D., is a professor in the University of British Columbia School of Nursing. She
has published books and articles concerning the chronic illness experience and how people with chronic
illnesses negotiate health care.

John Crawford, R.P.N., M.A., Ph.D., is an instructor at Douglas Community College in Burnaby,
British Columbia, and functioned as a co-manager of the research project on which this article is based.
He is a doctoral student at the University of British Columbia.

Michel Tarko, R.P.N., is an instructor at Douglas Community College in Burnaby, British Columbia,
and functioned as a co-manager of the research project on which this article is based. He is a doctoral
candidate at the University of British Columbia.