Abstract
Individuals living with type 1 diabetes (T1D) or type 2 diabetes (T2D) can experience conflict between self-presentation and their symptoms or management regimens. In this article, I explain how these individuals might use their illness management techniques to aid in successfully self-presenting or having their identities verified. Interview respondents associate conflicts brought on by symptoms or management regimens with identity processes and report some instances when illness management enables them to successfully perform identities. Researchers have previously found ways that individuals work to renegotiate or preserve their identities by suppressing or hiding their illnesses. I additionally highlight instances where individuals embrace illness management to successfully perform identities, a process I call integrating illness management into the identity verification process. The importance of research on access to illness management tools and education is emphasized, as researchers aid individuals not only in maintaining good health but also being their best social selves.
Introduction
Appearing as we would like others to see us, or having our identities verified (Burke, 1991; Swann, 1987), is an important part of daily social life. For example, a student may remain seated, quiet, and attentive to convey that they respect and appreciate a professor and their lecture; a supervisor may enforce a timed lunch break policy strictly in the workplace to act as an authoritative figure. But suppose the student must abruptly leave the room to treat their asthma, or the supervisor takes a noticeably extended lunch break to treat a sudden case of low blood sugar brought on by diabetes. Demanding symptoms of chronic illness can potentially interfere with individuals having their identities verified. A body under distress from illness can produce symptoms that demand attention from both the individual inhabiting that body and others around them (Kelly & Field, 1996). These symptoms present challenges for successfully managing both illness and identity performances, or efforts by the individual to demonstrate to others that they are who or what they claim to be (Goffman, 1959). This study is a qualitative examination of how illness management can be part of the identity verification process. The symptoms and bodily changes brought on by chronic illness can be pervasive, and management of symptoms is a reality of everyday life for some individuals. It is therefore important that we understand how identities are managed in the inevitable situation that symptoms arise and conflict with identity performances, particularly in social and public settings.
The identity verification process typically involves interpreting feedback, either from the self or others, so that we may continue or adjust toward performing in line with identity expectations (Burke, 1991, 2006). This feedback is a cue for whether we are performing an identity as expected. We can think of identities themselves as personal traits and values, roles, and group memberships that are internalized by the individual (Burke & Stets, 2009). Identity expectations come from what has been socially deemed normal or acceptable behavior given a particular trait, value, role, or membership. Identities are verified when the feedback we receive from others tells us that we are performing an identity in line with expectations. However, we might also receive feedback signaling that we are not performing an identity as expected, at which point some adjustment must be made. Adjustments typically include changing behaviors to align with expectations, reconceptualizing the identity itself, or abandoning the identity altogether (Burke, 1991).
The identity verification process described reflects other important social processes involved in social interaction, namely, self-presentation (Goffman, 1959) and face (Goffman, 1967; Spencer-Oatey, 2007). Self-presentation sees an individual attempt to convey to others in a public setting that they possess certain social characteristics to evoke a desired response or project a certain definition onto the situation (Goffman, 1959). We can think of these social characteristics as elements of a given identity. Whether an identity is verified brings the individual some positive or negative “social value,” which is labeled face (Goffman, 1967, p. 5). Spencer-Oatey (2007) illustrates the relationship between identity, self-presentation, and face, which is an important relationship in the analysis of interview data for this article. Self-presentation and identity performances both lay claim, which others evaluate, to certain social characteristics. These social characteristics become elements of identity by being socially approved for or expected from given roles or contexts. Therefore, the value attached to these public performances, face, has a social nature because it is derived from the evaluations by others against their expectations of the identity and understanding of the situation. Face is also affective because it might make the individual feel “good” or “bad” depending on the reception of the performance (Goffman, 1967, p. 6; Spencer-Oatey, 2007). This affectivity, whether positive, neutral, or negative, motivates the individual to build upon or modify the performance for future interactions, or engage in “face-work” (Goffman, 1967, p. 12), therefore driving the feedback loop involved in the identity verification process (Burke, 1991).
Through this research, I contribute to literature on the relationship between chronic illness and identity by demonstrating that living with chronic illness may present additional challenges to the individual beyond using social cues, feedback, and affectivity to engage in face-work following performances to have an identity verified. Unmeant gestures, which can cause discrepancy between the ideal definition of the situation and the reality at hand, might occur if an individual conveys “incapacity . . . by momentarily losing muscular control of himself” or “appears nervous, guilty, or self-conscious” among other things (Goffman, 1959, p. 52). Several accounts from the interview data analyzed for this article discuss sudden incapacity or unwanted appearance in public and social settings brought on by symptoms of illness. Individuals living with chronic illness therefore live with an additional potential source of such unmeant gestures that can interfere with social interaction processes. Chronic illness may become more apparent to self and others when bodily changes, limitations, or symptoms are visible (Kelly & Field, 1996), which can influence others’ evaluations of an individual’s performances. Questions may arise about an individual’s potential based on their body (Fox & Ward, 2008), and therefore create uncertainty about the identities they can perform successfully. In addition, when the chronically ill body is the source of these unmeant gestures, the individual cannot simply rely on social cues, feedback, or affectivity as guidance toward what must be fixed in the performance. Rather, the individual may instead need to engage in illness management (Nowakowski, 2016) of some kind. I explore the relationship between illness management and how individuals work to have their identities verified and maintain positive face.
Literature on identity processes often shows illness management and identity verification in opposition to each other. Parts of self and identity must be let go of to accommodate bodily changes and illness management in the long term (Charmaz, 1991; MacRae, 2010). Symptoms and limitations are hidden or ignored so that identities can be performed as they were before illness (Bury, 2001; Hubbard et al., 2010; Vann-Ward et al., 2017). Illness itself must be reframed as normal or under such good control that it does not conflict with an identity (Aujoulat et al., 2008; Maliski et al., 2008). However, in the present study, I argue that illness management can be part of the identity verification process, rather than being ignored or mastered so that conflicts with identity do not arise in the first place. I label such instances of bringing illness management into the identity verification process as integration.
A wide range of responses to challenges involving identity verification brought on by chronic illness has been established in the literature on chronic illness and identity. These responses can be organized into two broader processes: renegotiation (including normalizing, examining identity values, shifting priorities, the life review, and letting go) and preservation (including minimizing and holding on). Renegotiation sees some socially constructed identity (e.g., masculine or feminine) restructured by the individual to accommodate changes to life and body brought on by chronic illness (Maliski et al., 2008). One renegotiation process, normalizing, appears differently across studies. Typically, the individual tries to maintain an identity as expected, either by explaining the illness or condition itself as normal (Maliski et al., 2008), focusing on parts of an identity that have not been challenged by illness (MacRae, 2010), or by minimizing illness symptoms (Bury, 2001; Charmaz, 1991; Hubbard et al., 2010). Examining identity values and shifting priorities are also features of renegotiation, which together see an individual refocus their attention to parts of an identity that now carry the most importance to them considering their illness experiences (Maliski et al., 2008). These features of renegotiation are similar to a process labeled the life review that sees the individual attempt to make sense of, and derive meaning from, their life story. They also celebrate past accomplishments and focus on what can still be accomplished in the present and future (MacRae, 2010). Focusing on what is important and what can still be controlled is captured in another reported process, letting go, which sees the individual accept that parts of the illness experience are out of their control. Letting go gives individuals a sense of empowerment through feeling more able to ask for help and disclose their illness, as well as accepting the illness as a part of themselves (Aujoulat et al., 2008).
Rather than renegotiate identities, some work to preserve certain identities, especially when goals of those identities take precedent over illness management (Charmaz, 1991). To preserve an identity is to keep it as it was before the illness. While reported by some as a feature of renegotiation, minimizing can also be used to preserve identities (Vann-Ward et al., 2017). Minimizing in the context of preservation sees individuals work to hide certain bodily changes, symptoms, or limitations; in the context of renegotiation, the label signals minimizing the meaning of illness if it is controlled or its effects are not strongly felt (Charmaz, 1991). Preserving identities is also reported through a process called holding on, where individuals work to gain a sense of mastery and self-efficacy in relation to illness management so that established identities are kept separate from the illness (Aujoulat et al., 2008). As Aujoulat et al. (2008) demonstrate through the back-and-forth of holding on versus letting go, identity renegotiation and preservation are not linear, independent processes. Instead, the individual might cycle between them before establishing a more consistent sense of self. This process has been called an odyssey of self, where an individual discovers and strengthens their sense of self over time in response to the bodily changes they experience (Charmaz, 1995).
This research is conducted from a symbolic interactionist perspective, which sees individuals assign meaning to interactions with symbols, objects, and other people to make sense of their social worlds (Blumer, 1962; Stryker & Vryan, 2003). Among the symbols we interact with are the labels given to certain roles, sets of behaviors, traits, and other elements of identities that we internalize (Burke & Stets, 2009). We learn throughout life what we might expect from, and how to interact with, people or objects who have certain labels and identities. However, something pervasive like chronic illness can force us to reconceptualize what a label or identity might entail when behaviors related to illness management are introduced. When thinking about “what a body can do” (Fox & Ward, 2008), we may learn that illness management is a necessary step toward allowing individuals to live and achieve, as presented in the findings of this article.
I use type 1 diabetes (T1D) and type 2 diabetes (T2D) as a case in this study. Individuals living with T1D or T2D might experience low (hypoglycemia) or high (hyperglycemia) blood glucose episodes that create symptoms, such as confusion or disorientation, that may interfere with the goals of the self in that moment by disrupting cognition and behavior (Bonds et al., 2012; Hepburn et al., 1991). As shown in the findings of this study, these episodes, particularly hypoglycemia, can occur suddenly and unexpectedly, regardless of the levels of mastery and self-efficacy (often referred to as “control”) reported by participants. I draw on data from 18 interviews with people living with either T1D or T2D to demonstrate the challenges these illnesses can pose to identity verification, and what actions are taken to address these challenges. While good health and even “survival” are clearly main priorities when managing T1D and T2D, participants also reflect on how symptomatic episodes are intertwined with their identity goals in these moments.
T1D and T2D
T1D is an autoimmune metabolic disorder that destroys the insulin-producing beta cells in the pancreas, resulting in the absence of insulin in the body (Abiola et al., 2016). Because the pancreas is unable to produce insulin, individuals are dependent on a regimen of exogenous insulin to maintain blood glucose control. Such a regimen is carried out via subcutaneous injections (e.g., syringe and vial, insulin pens) or the use of an insulin pump worn 24 hours a day. People living with T1D are often prescribed two different types of insulin characterized by their onset and duration of action: short-acting (bolus) or long-acting (basal). Bolus insulin is administered for immediate control of blood glucose levels (e.g., at meals or in response to a high blood glucose reading), whereas basal insulin is administered once or twice daily to mimic the background secretion of insulin in an individual without T1D as closely as possible (Abiola et al., 2016). The Centers for Disease Control and Prevention (CDC, 2020b) report that of the 34.2 million people living with either T1D or T2D in the United States, only 5% to 10% of these people are living with T1D. T1D is often characterized as a condition associated with youth, likely because roughly three times as many people under the age of 20 are diagnosed with T1D than with T2D (CDC, 2020a). However, recent research shows that over half of new diagnoses of T1D each year are in adults rather than youth (Rogers et al., 2017; Xu et al., 2018). There is currently no known way of preventing on the onset of T1D (CDC, 2020b).
T2D is a metabolic disorder under which either the pancreas secretes an inadequate amount of insulin or insulin-responsive cells cannot use the insulin that is produced properly (insulin resistance), resulting in poor blood glucose control. Oral medications such as Metformin are often prescribed to those living with T2D (along with suggestions for weight loss, healthy eating habits, and physical activity) before resorting to insulin therapy (Abiola et al., 2016; CDC, 2020b; Inzucchi et al., 2014). Diagnoses of T2D make up between 90% and 95% of diabetes diagnoses in the United States (CDC, 2020b). The onset of T2D can be prevented through weight loss, increased physical activity, and healthy eating. Individuals can be alerted to the necessity of these lifestyle changes if they are first diagnosed with pre-diabetes; adopting these changes can cut the risk for developing T2D in half (CDC, 2020b). Pre-diabetes is “an intermediate state of hyperglycemia with glycemic parameters above normal but below the diabetes threshold”; there are no uniform diagnostic criteria across several international professional organizations (Bansal, 2015).
The primary goal of medication regimens for individuals living with T1D or T2D is to help establish optimal control of blood glucose levels, specifically to avoid both hypoglycemia and hyperglycemia. The American Diabetes Association (ADA, 2018) defines blood glucose levels below 70 mg/dL as hypoglycemic. Although individuals are diagnosed with diabetes if they present repeated fasting blood glucose readings above 126 mg/dL, those already diagnosed with T1D or T2D are recommended to keep fasting blood glucose levels between 70 and 130 mg/dL (ADA, 2018). The ADA (2018) also recommends not allowing post-meal blood glucose levels to peak any higher than 180 mg/dL, beyond which point concerns about the bodily effects of hyperglycemia become more serious. Insulin deficiencies in those living with T1D or T2D naturally keep those individuals at risk of hyperglycemia. Both individuals living with T1D and T2D are also at risk of hypoglycemia. Those living with T1D are more prone than those living with insulin-treated T2D (Cariou et al., 2015; Donnelly et al., 2005). Within populations living with T2D, those using insulin self-report experiencing hypoglycemia more often than those using oral medications (Silbert et al., 2018). However, studies using continuous glucose monitoring (CGM) devices instead of or in addition to self-reports suggest that (a) experiences of hypoglycemia among those living with T2D are underestimated in frequency and (b) we may have more to learn about hypoglycemia between populations varying by T2D treatment types (Gehlaut et al., 2015; Levy et al., 2017).
Presuming from these prior studies that individuals living with T1D are more prone to experiencing hypoglycemia than those living with T2D, one might expect those living with T1D to experience such disruptions to their identity performances more often than those living with T2D. Individuals living with T1D therefore might have more instances of symptoms presenting challenges to identity performances to report. However, because individuals living with T1D or T2D are both susceptible to hyperglycemia and hypoglycemia, one might expect that the ways they experience disruptions to identity performances as a result of illness symptoms will not differ significantly. This is an empirical question that I examine in this article.
Method
Study Design
Understanding how participants saw symptomatic episodes intertwined with identity goals required qualitative research. Specifically, conducting interviews that were in-depth, semi-structured, and open-ended let participants explain this linkage. The study began broadly as an exploration of the relationship between T1D or T2D and identities. Thus, the interview guide was informed by different areas of literature on chronic illness and identity, including (a) the potential for illness to interfere with identity performances (Burke, 2006; Goffman, 1959; Kelly & Field, 1996); (b) the experience and impact of diagnosis for the individual (Jutel, 2009; Jutel & Nettleton, 2011); (c) biographical changes brought on by living with and managing illness (Bury, 1982; Charmaz, 1991, 2002a); (d) social aspects of living with illness like support, treatment, and expectations from others (Hatchett et al., 1997; Rook et al., 2011); (e) critical illness-related situations and the social contexts in which they occur (Charmaz, 1991; Kelly & Field, 1996); and (f) how living with illness affects participants’ perceptions of their futures (Charmaz, 1991). As semi-structured interviewing permits, participants brought additional topics into the interviews. The flow of each interview was guided by what respondents spoke about rather than sticking to the order of questions and prompts in the interview guide. As new topics emerged during interviews, I needed to extend my literature search to better understand how interview data spoke to or built upon established social processes and theory. Through this abductive process (Timmermans & Tavory, 2012), I came to understand how interview data could be situated in, and expand upon, literature on how individuals respond to challenges that chronic illness poses to their identities.
Sample
Individuals living with T1D and T2D are an appropriate population for this research because of the potential for symptoms of both hypoglycemia and hyperglycemia to interfere with identity performance and verification. Eighteen such individuals were recruited for interviews. Recruitment drew on my personal network via Facebook, as well as organizations including diabetes support groups, diabetes advocacy organizations, and online diabetes forums. This combination of snowball and convenience sampling was necessary because I did not have access to any list or directory of individuals diagnosed with T1D or T2D, should it exist. Criteria for participation in this research included the following: (a) being at least 18 years of age and (b) having a formal medical diagnosis of either T1D or T2D, which participants were asked to verify near the start of the interview.
Demographic information about the sample is available in Table 1. The sample was predominantly living with T1D (11), White (13), and married (8), with an equal number of females and males. Six of the 18 participants were diagnosed with diabetes at or before age 18; all six of these participants were diagnosed with T1D. One of those six participants diagnosed with T1D before age 18 underwent successful pancreas and kidney transplants at age 44 and reported no longer experiencing the symptoms of T1D.
Sample Demographic Characteristics (N=18).
Data Collection
I interviewed the 18 participants between July 2017 and January 2018; 13 interviews were conducted via the telephone and the other five were conducted in-person at locations both convenient and comfortable for participants. Depth or type of content discussed did not differ noticeably between telephone and in-person interviews. Interviews lasted, on average, about 1 hour. The range of interview times was between 15 minutes and 2.5 hours, with a median time of 1 hour and 2 minutes. Each participant consented to both being interviewed and having their interview audio-recorded. Before in-person interviews, informed consent was requested and obtained in an isolated space. Telephone participants had the consent form read aloud to them and gave me permission to sign the physical consent form on their behalf; an electronic version of the form was emailed to them. Participants were compensated with US$20 each for their time. I transcribed each interview and protected participants by replacing their names with pseudonyms and omitting identifying information in transcripts. All research procedures were approved by the Institutional Review Board at the University of Maryland, College Park.
Analysis
I analyzed the interview data abductively (Timmermans & Tavory, 2012). This required (a) awareness of literature that informed my interview guide and (b) openness to exploring other literature that interview data guided me toward. Note-taking during interviews helped generate follow-up questions and provided a starting point for understanding how the interview data connected with a “background of multiple existing sociological theories” (Timmermans & Tavory, 2012, p. 169). Creating and referencing post-interview memos also facilitated the process of connecting data with theory. Throughout both data collection and analysis, I engaged in several conversations with colleagues and reflective writing sessions guided by the question, “What do I know so far?” This exercise let me better understand what was occurring in the interview data and how it reflected, extended, or conflicted with existing theory and ongoing conversations regarding chronic illness and identity processes (Fryer et al., 2016; Maietta, 2006).
Interview data were open coded, which involved line-by-line coding of transcripts and creating codes that reflected either points of connection between data and theory, or interesting data points that required exploring additional literature to understand their theoretical implications (Holton, 2007; Timmermans & Tavory, 2012). A brief memo was written for each code to describe its theoretical relevance and implications, as well as for each portion of text coded to describe how it fit the selected code(s). These codes and memos were created using qualitative research software, ATLAS.ti 8. Memos were helpful for understanding how different text portions fit codes similarly and differently. They also demonstrated how textual components of different codes connected with one another to paint varying experiences of the emerging theoretical concepts. Coding and memoing also helped show when interview data had reached a satisfactory conceptual depth that allowed me to transition from analysis to the writing phase. Conceptual depth criteria include range (having multiple data points that illustrate conceptual categories), complexity (concepts are part of a rich network with many conceptual connections within), subtlety (the multiple meanings and uses of singular concepts are understood and evident), resonance (conceptual categories connect with other theories and ideas in academic literature), and validity (emerging theoretical concepts can be applied in other contexts) (Nelson, 2017). While range, complexity, and subtlety were identifiable through internal analysis of interview data, resonance and validity required continuously engaging with existing literature as concepts emerged, supporting the use of abductive analysis for this project.
Coding helped reveal that symptomatic episodes posed challenges to identity performances, which guided me toward additional literature on how individuals living with illness manage identities in the face of illness. After reviewing this literature, I further analyzed interview data by diving deeper into text that was coded for challenges to identities. I organized these portions of text according to how illness challenged identities and how individuals responded. This organization revealed that (a) illness can challenge identities in singular moments in addition to the long term, and (b) management of illness can be a response to these challenges so that identities can still be performed successfully and verified. I also analyzed these reported moments to detect any significant similarities or differences between respondents living with T1D and those living with T2D regarding the integration process. Much of the “Findings” section in this article focuses on these momentary challenges and how individuals integrate illness management into achieving identity verification.
Findings
Challenges to identity performances mostly came in the form of hypoglycemia, although hyperglycemia was also discussed. In addition, respondents described how meeting meal and medication regimens posed challenges. Not all challenges to identity performances were met with success. Some respondents described instances when hypoglycemia, hyperglycemia, or regimens contributed to an inability to achieve identity verification. In some of these instances, participants discussed how diabetes management (e.g., checking blood glucose levels, managing hypoglycemia or hyperglycemia, abiding by meal and medication regimens) could have helped them. Other respondents discussed moments when diabetes management played a necessary part in achieving identity verification. Management either allowed respondents to successfully continue identity performances or created a turning point toward verification before more work (e.g., explaining, apologizing) needed to be done.
Findings are divided into two sections: prevention of identity verification and successfully integrating diabetes management into identity verification. The two main purposes of the first section are (a) to illustrate how both symptoms and expectations surrounding T1D or T2D can interfere identity performances and prevent identity verification, and (b) to underscore how respondents suggested that diabetes management might have been able to mitigate this interference and potentially aid in identity verification. The second section details instances reported by respondents when diabetes management was used not only to address pathological issues but also aided in the identity verification process by allowing respondents to continue or resume successful identity performances.
Prevention of Identity Verification
The suddenness and unexpectedness of hypoglycemic or hyperglycemic episodes were commonly discussed as a reason why these episodes could be so disruptive. The bodily feelings brought on by these episodes (e.g., shakiness, loss of focus) were sometimes enough to disrupt identity performances for respondents. These episodes often require a fast and deliberate management response, which pulled some respondents away from tasks and obligations. In other cases, it was not the occurrence of an episode, but rather the expectation from others of what might occur during an episode that led to assumptions about what the respondent may or may not be able to accomplish in a given role or setting. Some accounts from respondents describe how these episodes prevented identity verification, with several including discussion about how diabetes management might have been able to help achieve identity verification.
Symptoms of hypoglycemia can not only change how the individual feels but how they appear to others as well. One participant living with T1D discussed how sudden hypoglycemia made him both feel and look unprepared when presenting a grant proposal. Despite having prepared for his presentation, an obligation tied to his student identity, a sudden hypoglycemic episode changed both his demeanor and his ability to communicate. Ultimately, he did not receive the grant, and attributed that at least in part to this hypoglycemic episode: I was totally ready . . . I was confident . . . And I got low . . . And then all the sudden you’re standing in front of a bunch of professionals wearing a suit and you look like a kid in your dad’s suit. You’re sweatin’ bullets . . . you’re shaky . . . and then you look unprepared. Because you are unprepared in that moment. You’re not able to put together your words and ideas that adequately represents how you ought to be able to do it.
Accounts like the one above highlight the importance of studying how chronic illness can conflict with identities not only chronically but episodically. Some of the language used by this respondent (e.g., “kid in your dad’s suit,” “ought to be able”) indicates that T1D can create discrepancies between identity performances and how identities “ought to” be performed, or the identity standard (Thoits, 2003, p. 191). Respondents indicated that their efforts to reduce these discrepancies are not always easy or welcome. For example, another participant living with T1D discussed some social consequences of both experiencing and explaining a hypoglycemic episode in front of others: Typically I don’t need it [sugar for hypoglycemia], but I don’t wanna get caught and be in trouble, and then I’m in a big ole meeting with a bunch of professionals, and I’m having a low blood sugar . . . Everybody’s gonna be like, “What’s wrong with this guy?” And so I’m a little bit nervous of that. I don’t want it to be perceived as a handicap . . . or they get the wrong perspective. There’s been times where low blood sugars look like you’re drunk, or you’re on drugs or something. I don’t wanna give a negative perception. “No, no, it was diabetes, I swear” [whiny], you know?
This respondent paints a hypoglycemic episode as an unusual occurrence in the context of his workplace that might challenge his professional identity. He describes being nervous about his colleagues taking issue with his behavior or appearance should he experience hypoglycemia in front of them. A comparison is made to drunken or drug-induced behavior, which most would likely consider unprofessional in the workplace. Social distance is also often preferred from people who exhibit these behaviors (Link et al., 1999; Schomerus et al., 2011), which might mean hypoglycemic episodes can also evoke such a preference. He also worries hypoglycemia and T1D could be seen as “handicaps” or unacceptable excuses for his behavior, as illustrated by his tone when enacting explaining the cause of his hypothetical appearance. Two other participants, notably men, expressed similar concern over T1D being seen as a “weakness,” “vulnerability,” or a “liability.” However, these consequences of hypoglycemia are the “trouble” that this respondent originally notes can be avoided if he has sugar handy in some form. While he expects that hypoglycemia might disrupt identity performances and verification, he understands that managing hypoglycemia can aid these same identity processes. The student highlighted earlier gives a similar account: And I’ve been in this meeting for an hour and a half, and it’s crept down, and I haven’t been paying attention to it because I was engaged with something that was important, and then now I professionally look unprepared. And of course I go, “Oh, I‘m sorry, my blood sugar was low.” But it doesn’t change the fact that you just disrupted something where maybe you were presenting in front of 10 or 15 people, just because you need to go eat some gummy bears.
He describes how experiencing hypoglycemia, and needing to manage it, can challenge or prevent identity verification. Although managing his hypoglycemia allowed him to resume his identity performance, he still felt he caused a disruption and could not maintain a professional identity. Apologizing and explaining the situation also did not alleviate the disruption in his eyes. In summary, both experiencing and explaining hypoglycemic episodes can create difficulty when trying to achieve identity verification.
While living with either T1D or T2D can leave individuals prone to hypoglycemic episodes, respondents living with T2D more often reported meal and medication regimens that challenged or prevented identity verification. Timing of meals and medications as well as dietary restrictions meant that some participants could no longer identify as “impromptu,” or “fly by the seat of their pants” in daily life. A respondent living with T2D discussed an example of how adjusting to his meal and medication regimen created identity challenges: . . . my body has gotten very accustomed to eating at a certain time or within a range of time, and my meds to keep my whole metabolism and everything else being consistent . . . We were out on the East End with family and friends . . . And we were planning to take a meal, and I was not prepared to be out that long, so I didn’t have my meds with me. But a lot of the people I was with are very impromptu people, so the day was changing constantly. So by the time I needed to eat . . . my wife buried her fingernails into the dashboard of the car because I was doing a significant over-the-limit on the [expressway] going back to the house to get meds and food.
Earlier in our interview, this respondent said he had “thought of [himself] as an impromptu individual” before he was diagnosed with T2D. The change in his sense of self over time was a cumulative process made up of instances like these that challenged this personal identity of his, something he labeled a “learning process.” Here, he tried to remain impromptu through abiding by his meal and medication regimen but needed to speed home to do so. He ultimately described the transition to a new, “structured” personal identity: But as the disease progressed, and my need for medication, and meals, and everything else being monitored, I have come to lead a fairly structured life. So my meal times are fairly consistent, my med times are very consistent, and my activities are somewhat limited, and again, very structured.
Although this respondent needed to make this transition, his T2D management efforts were an essential part of trying to maintain his “impromptu” person identity.
While respondents tried to integrate management efforts into the identity verification process, others they encountered had expectations of whether these efforts would enable them to take on a given role or identity. For example, a respondent living with T1D discussed treatment she received during a master’s degree program interview. Her interviewer questioned her ability to perform her work in the program while managing her T1D: And they’re like, “So, if we’re in the jungle of Buton, and you ran out of insulin, what would you do?” . . . I would try to make it to the village doctor first, but Type 1 [diabetes] is not like a first world disease. People all over the world have it, and they deal with it in different ways. Obviously I would go on shots [insulin injections] when I was there. I would be as manageable as I could be . . . I feel like that kind of ruled me out in a way . . . even if it didn’t rule me out, it was just kind of demeaning . . . Who cares? Let me tell you about the work that I can do, and the work that will get me into—that I can do for this program, and why I want to be in this program.
This respondent felt her management efforts, including switching from an insulin pump to injections, would enable her to perform the work of an art conservation student more easily. Yet she feels having to manage T1D at all might have hurt her chances of acceptance into the program. Others’ expectations of what illness management entails can lead to assumptions about whether an individual can take on an identity, as this respondent feels she experienced here. In this case, it was assumed that taking on this particular student identity might be too difficult for her.
Sometimes others can be more understanding or forgiving, as another respondent living with T1D found. However, he still remarks that diabetes management can aid in identity verification despite successfully addressing a hypoglycemic episode: When I was going to school, I had a hypoglycemia in my calculus class. And I messed up . . . I answered Question 1 in Question 2, Question 2 in Question 4. I ended up getting a C- that exam . . . And I had to e-mail my TA that, “Hey, I messed up . . .” And he handled it. That was one of the few classes I didn’t do well . . . but there’s a counter-way to handle these situations. Like you can just take a Coca-Cola or some sweet with you . . . this way if you feel it you can work it a little bit. It doesn’t have to go to that extreme.
This respondent discusses how a failed student identity performance might have been salvaged if he had something sugary like a soda to treat his hypoglycemia during his exam. He indicates the salience of his student identity (“one of the few classes I didn’t do well”) and acknowledges the discrepancy between his performance and identity standard, labeling this situation “extreme.” Here, being able to treat his hypoglycemia might have prevented or eliminated that discrepancy, allowing him to achieve identity verification.
In addition, there was a difference in focus for respondents living with T1D versus some respondents living with T2D on what aspects of diabetes challenged identity performances. Although respondents living with T1D mostly focused on a symptom that presented a challenge, respondents with T2D focused mainly on routines and regimens that at times made them question important personal traits. For these respondents with T2D, what they reported reflects the struggle between “holding on” and “letting go” described by Aujoulat et al. (2008), in which learning to settle into routines and regimens over time might lead to preservation or renegotiation of certain person identities. The remainder of the “Findings” section focuses on more momentary challenges to identities, both for respondents living with T1D and those living with T2D, and more directly illustrates the integration process they narrate in this article.
Successfully Integrating Diabetes Management Into Identity Verification
Some respondents reported instances of overcoming identity challenges and achieving identity verification in part through diabetes management. Management in these instances typically involved treating hypoglycemia or being adamant about sticking to meal routines. Respondents’ understandings of their own bodies played a key role. Bodily symptoms and feelings needed to be addressed so that identity performances could continue successfully. Respondents linked diabetes management to achieving identity verification by discussing the ways that management addressed challenges to identities created by hypoglycemic episodes and going off meal routines. These challenges were typically symptoms of hypoglycemia or hunger (e.g., loss of focus, shakiness) that made it difficult to stay on task for a given role or maintaining certain character traits (e.g., decisiveness, professionalism). Achieving identity verification usually required some combination of diabetes management and explanation of the situation, although management alone was enough in some cases.
One way respondents linked diabetes management to identity verification was by describing the work needed to treat hypoglycemia so that identity performances could continue successfully. One respondent living with T1D describes experiencing hypoglycemia during a business meeting and managing it in a way that it only became “a little bit of a nuisance” rather than ruining the meeting or his identity as a boss: I’m the leader, I’m the boss, I’m the one trying to direct and understand what’s happening, make decisions and resolve. And as they’re talking . . . I can feel myself starting to go, “Okay, it’s [blood glucose level] starting to fall . . . Do I break now? Do I wait? Can I grab something? Is there something nearby me?” And all the sudden, I’m not paying attention here anymore. I’m paying attention to survival. And there’s been occasions where I said, “You know what? I‘m sorry, I gotta excuse myself and get something.”
Experiencing hypoglycemia created a discrepancy between this respondent’s identity as a boss and the identity standard by removing his attention from the meeting. This removal of attention left him instead “paying attention to survival,” highlighting the gravity of hypoglycemia for those who experience it. He then describes pausing the meeting and the impression management required afterward: Depending on how well I know them, I’ll say, “I’m having a low blood sugar, I need to grab something really quick . . .” or, “Can you give me a second? I just need to excuse myself for a second,” and I’ll get up and go outside and grab something that I need or whatever . . . and not that it didn’t present the way I wanted to present . . . It was a little bit of a nuisance is probably the best word . . . instead of just powering through the meeting, I had to stop, break, wait for my sugars . . . you don’t drink something and it’s up. You have to wait for it to kick in . . . So now I have to try to describe: why was I gone for 10 minutes?
This respondent points out that he chooses whether to disclose his T1D based on how well he knows the person he is with. Disclosure is often part of the identity verification process for those living with T1D and T2D if diabetes needs to be managed. He did not feel this instance ruined his identity performance but was still an interruptive issue that needed to be solved through management and explanation. Managing hypoglycemia might also not be a quick fix as this respondent points out, adding to the explanation he must give when he returns. But returning to his identity performance at all required management of his T1D.
Several participants similarly contemplated when and how to transition toward diabetes management. This contemplation highlights respondents’ conceptualization of the potential social and identity consequences that come with transitioning toward management. For one respondent living with T2D, these consequences included having her identity of diligence and commitment challenged. When explaining why she might “plow through” a hypoglycemic episode while working, she said, “mostly the fact that I’m pretty driven with work to support whatever project or program I’m working on.” Her account of when she felt compelled to instead treat her hypoglycemia highlights the social nature of identity verification in that others clue us in when our identities are verified: I held off as long as I could, and then I did tell the project manager that I needed to leave. And I had previously told him just low-key in passing that I had recently found out I was diabetic and so I would need to eat periodically . . . And so I think having just told him that the week or two earlier he wasn’t surprised by it. And again, he had diabetic people in his family, so he’s like, “Are you okay?” I said, “Yeah, I just need to go take care of this.” And he was okay with it.
This respondent noted that her project manager had some familiarity with diabetes, which might have led him be more sympathetic and not judge her identity performance based on her need to manage her T2D. Greater understanding of a chronic illness from those who are in a position to verify our identities might lead more easily to verification. We can contrast this account here with an account in the previous section, where the latter felt her interviewer’s lack of understanding of T1D prevented her identity from being verified.
A respondent living with T1D told a similar story in that his boss was understanding of his need to manage his T1D to continue working: Yeah, I’ve stepped out of the meetings, grabbed a Coke or Pepsi, and come back out. My boss knows about it, but even if they don’t, yeah, I need something, I step out. That’s how I handle it. Like, we were supposed to deliver something at 4 PM yesterday, and I could not get it done. But at 3:45 I gave up and I said, “I cannot finish this.” And I ran for a lunch and brought it back. So my boss was really understanding. He saw. I’m like, “15 minutes wouldn’t have made a difference.”
This respondent articulates that his need to step away for a meal to manage his T1D required a pause from his work. By noting that “15 minutes wouldn’t have made a difference” for finishing his task, he is able to minimize the effect of this instance on his identity performance to his boss. Instead, a combination of T1D management and explanation allowed him to still have his identity as a productive employee verified.
One’s position in a power structure might affect how easy or difficult it is to have an identity verified, and how much of a need for disclosure of diabetes there is. Several respondents discuss interactions with superiors when talking about managing diabetes at work. In addition, an entrepreneur living with T1D gives an account from the perspective of a superior. Although his management of hypoglycemic episodes is necessary for enacting his identity as a boss at times, he describes such instances with less concern than other respondents because of his position of power: I’ve always been the boss. So it’s never been anything I’ve had to deal with. But in terms of my colleagues, they understand that I have diabetes. If there’s an issue where I have to leave the office, you know, my blood sugar’s low, I gotta run out and grab some soda, I just do that. But they’re not really in a position to moan about that, but I don’t think they would anyway.
Even if this respondent’s colleagues were to challenge his boss identity because of his T1D management, he takes it less seriously than others might because of the power dynamic in place. Although he has also disclosed his T1D to his colleagues, he feels as someone in power he can skip over the explanation work after managing his T1D that might be necessary for those in lesser positions. Managing his T1D without notice to others might reinforce his identity as someone in power.
Disclosure at times was also avoided even though diabetes management was directly linked to identity verification. Several respondents reported learning to keep sugared foods on their person to deal with hypoglycemic episodes. In instances like the one a respondent reports below, this helped keep diabetes management discreet and unknown to others who would be present for identity performances. Although other studies have reported minimizing or hiding symptoms to normalize episodes, this respondent expands these ideas by acknowledging that efforts to normalize are tied directly to the identity verification process. Furthermore, at the core of his efforts to normalize is his need to manage his T2D, in this case treating hypoglycemia, which he feels he cannot maintain his professional identity without; T2D management is essential to his identity verification process: So I would feel the “warm and fuzzies” [hypoglycemia] coming on, and I would never go into an inspection or anything . . . I would not go into court without being prepared both professionally and as a diabetic in order to maintain . . . I would keep a couple of Lifesavers that were sugared, so it wouldn’t seem like I was doing something abnormally other than just putting a lozenge in my mouth . . . So I didn’t wanna have my professionalism hurt because . . . a lot of my work [was] references. So I wanted to make sure that I was able to be coherent and everything else, and again professional. So I made sure that I was able to maintain my sugars during those long periods of time.
This respondent feels that without being prepared to treat hypoglycemia at any moment, he would not be able to perform important tasks related to his professional identity. Mentioning the importance of “references,” he underscores a core element of symbolic interactionism: We learn about people, labels, and identities through interaction. He wants to develop a positive reputation as a professional by leaving good impressions on others, and his T2D management is necessary to do so.
The integration process operates similarly throughout these narratives as follows: The individual experiences some symptom brought on by T1D or T2D or not being able to follow management regimens. The individual also recognizes that this symptom could potentially interfere with the identity they are performing, be that a role, group, or personal identity. In addition to wanting to maintain good health, the individual is motivated to maintain their identity performance and still achieve identity verification in the given social context. These motivations lead the individual to address their symptoms so that they can either continue or resume the current identity performance. Rather than relying solely on social cues, feedback, or affectivity as guidance toward achieving identity verification, the individual also engages in diabetes management, thus integrating diabetes management into the identity verification process. Ultimately, addressing their symptoms allows individuals to pursue (or achieve) identity verification. Overall, there were no major differences in this integration process for respondents living with T1D and those living with T2D. Within these narratives, both groups of respondents acknowledged the social nature of the process, the identity motivations behind managing their diabetes, and their thought process behind whether to disclose exactly what they were experiencing. Factors such as power or awareness and understanding from others seem to have created differences in how respondents experienced the integration process more than the type of diabetes itself. I discuss these factors in the following section.
Discussion
Management of chronic illness, particularly T1D and T2D, can be part of the identity verification process for individuals living with these conditions. Respondents reported how symptomatic episodes and other challenges created by T1D and T2D are at times strongly connected to whether they can appear as they wish to others. Many of these challenging moments are tied to identities (e.g., roles, memberships, and personality traits) that are important to the respondent. To successfully perform these identities, it is sometimes necessary for individuals to manage their T1D or T2D, whether by treating hypoglycemia or abiding by meal and medication routines. Identity performances can be challenged or interrupted by these chronic conditions, and several respondents see diabetes management not only as helping maintain good health but also a pathway toward being their best selves. Management was often successfully integrated into the identity verification process, as respondents were able to continue or resume successful identity performances after managing their diabetes. Even in instances when respondents felt they could not present themselves in ways they would have liked, they often suggested that management, like being able to treat hypoglycemia with sugared foods, could have helped them.
As respondents reported, symptom and regimen challenges are part of everyday life for those living with T1D or T2D. This idea is important for understanding how individuals living with T1D or T2D manage their identities, another part of everyday social life. Similar to how Goffman (1959) discusses slippages in self-presentation affecting how others perceive us, it is clear that visible chronic illness symptoms can and do have a similar effect. While this idea on its own is not new (Bury, 1982; Fox & Ward, 2008; Kelly & Field, 1996), it brings us to a greater understanding of the intersection between illness management and identity management when considering the findings of this study. Illness symptoms and identities can both strongly be tied to self-presentation and can therefore often collide in that arena. Such collisions allow us to move beyond studying how illness and identities interact in the long term (Charmaz, 1991, 1995; MacRae, 2010). By studying the moments when these collisions occur, we come to understand the work that must be done in terms of both illness and impression management when identity performances are suddenly threatened by illness. Of course, important research has uncovered minimization and normalization processes that might occur in these moments (Aujoulat et al., 2008; Bury, 2001; Hubbard et al., 2010; Vann-Ward et al., 2017). But the present study instead highlights how illness management and identity management are integrated: Often in these moments, illness must be managed for identities to be verified.
Although integration, minimization, and normalization processes might share the goal of mitigating the impact of illness on identity verification in some way, a couple of key elements make integration unique among them all. First, illness management is at times embraced as a necessary part of the identity verification process. Illness is not hidden, dismissed, or disregarded for the sake of identity verification, but is instead dealt with in the ways it needs to be. Second, illness management, if it is necessary, is acknowledged by the individual as being tied to successful identity performances. The narratives offered by respondents uncover this acknowledgment for us. In other words, the integration process is likely not unique to the respondents in this sample but has perhaps been overlooked in past research on illness and identity. Sometimes, such as in the case of the respondent living with T2D who kept sugared candies on hand, the illness is hidden in some sense. But it is still managed, not disregarded, and this management is acknowledged by him as necessary to maintain the identity in question.
Respondents also demonstrated some of the complexities of the integration process. One of the most important pieces of the integration process is having a keen awareness and understanding of the body that experiences the symptoms of T1D and T2D and receives the actions of diabetes management. Many of the accounts presented here discussed some bodily feeling that made respondents aware of a potentially dangerous situation. Bodily awareness also made respondents aware that identities might also be at risk. These accounts bring illness experience into sociological conversations about the reflexive relationship between self and body. That is, we both are our bodies and have our bodies, and acts onto the body are simultaneously reflexive acts onto the self (Crossley, 2001, 2005). Symbolic interactionists think about the self as the personality that inhabits the body and develops through social experiences (Mead, 1934). It follows that the self is composed of the identities that we internalize and continuously develop (Owens, 2003). In this article, we see that acts of diabetes management onto the body, like treating hypoglycemia or abiding by medication regimens, are reflexive acts onto the self as they help respondents maintain their identities. I believe this is an important direction to follow when studying identity processes, as awareness of the relationship between self and body is clearly a precursor to how well individuals living with chronic illness can maintain identities and how they are perceived by others.
Respondents also reported that certain symptoms, especially those of hypoglycemia, can be misinterpreted by others in ways that are harmful to the individual. These interpretations of the appearance of hypoglycemia ranged from unpreparedness to drunkenness. Two respondents discussed hypoglycemia being likened to drunkenness by others. These incidents occur in contexts where drunkenness would be considered inappropriate, meaning hypoglycemic episodes could wrongly be suggestive of alcoholism, a stigmatized condition that has been positively linked to desires of social distance in others (Link et al., 1999; Schomerus et al., 2011). While research has previously tied stigma to visible symptoms of chronic health conditions (Ma et al., 2016; Parkhouse, 2019), accounts from this study reflect symptoms of hypoglycemia being perceived as other stigmatized conditions that carry their own sets of assumptions by others. For example, one might associate irresponsibility or belligerence with drunkenness and alcoholism, which are traits that surely can impede identity verification in a public or professional context. It is therefore plausible that identity verification during or after a symptomatic episode may also depend on the awareness of the illness among others, both in terms of the individual living with the illness and what living with the illness entails.
Awareness among others may be dependent on whether the individual discloses said illness. Disclosure was often a key part of the integration process in this study. Respondents had either already informed others of their diabetes or did so when they had to manage their diabetes amid an identity performance. However, some male respondents discussed not wanting to disclose their illness, mostly not to seem “weak” or look as though they were making excuses. Apprehensions about disclosure might therefore make the integration process more difficult. Scholars have studied what individuals feel is at stake when deciding whether to disclose an illness (Charmaz, 2002b; Kaushansky et al., 2017), as well as reasons for when and how much they disclose (Barned et al., 2016; Munir et al., 2005). Some gender differences have been found in the ways that individuals disclose illness, as well as the accommodations and support they seek (Munir et al., 2006). Relevant to this study is a finding that men attempt to preserve moral status through suffering and not disclosing (Charmaz, 2002b). Some findings in this study suggest that such perceived barriers to disclosure may impact an individual’s ability to maintain other identities beyond gender, such as professional identities. Future research might address the differing salience of numerous identities held by individuals who face the decision of whether to disclose an illness.
Professional identities were the identities most often discussed when respondents reported instances of needing to manage their diabetes to achieve identity verification. Some interviews differed between whether the interviewer or respondent introduced the professional context into the conversation. Descriptions of the integration process itself did not differ between these two conversation patterns. The cultural context potentially driving both by asking about professional identities and respondents bringing them up is also important to note. In the United States, the “ideal worker” has evolved into one who is able to devote time strictly to work and not be disrupted by personal distractions (Davies & Frink, 2014; Williams, 2000). There may be a general concern for individuals living with T1D or T2D, and likely other chronic illnesses, that their illness might be seen as such a “distraction” keeping them from achieving the status of “ideal worker.” The ability to maintain a job, as well as to achieve promotions, is also tied heavily to masculinity as an identity (Davis, 2000), potentially explaining why some men in this sample worried about what disclosing their diabetes meant for their job security. Conducting these kinds of interviews in other cultural contexts might yield different salient identities that living with chronic illness could challenge.
Another factor touched upon within the professional context was the individual’s place in a given power structure. Power was discussed by respondents as it relates to the ease or difficulty of achieving identity verification through integration. As individuals in power control access to resources for those with less power (Fragale et al., 2011), challenges to their identities might be less likely. In this study, one respondent discussed how his employees should not and would not complain if he needed to step away from work to manage his T1D, which he might not even tell them about. By contrast, some respondents felt a need to explain or appeal to those in higher power should they need to manage their diabetes. One respondent felt she was denied access to a master’s degree program partially because of high power others’ assumptions about her diabetes management. If those in higher power are making identity judgments, dealing with challenges to identities posed by illness as someone with lower power might be more difficult. Furthermore, others’ perceptions and judgments of illness management might be less harsh toward those in higher power. This study cannot confirm this idea, but it might be a fruitful direction for future research.
The integration process did not differ between respondents living with T1D and those living with T2D. Important similarities included relying on bodily awareness and deciding whether to disclose their diabetes to others. Overall, most accounts of the integration process were in response to hypoglycemia, which was reported more frequently by respondents living with T1D. For this reason, most accounts of the integration process in the “Findings” section were from respondents living with T1D.
However, other important differences between the two groups emerged. Both groups of respondents reported challenges to identity performances from both the symptoms of hypoglycemia. However, such challenges were reported more frequently and seemed to be a larger focus for respondents living with T1D versus those with T2D. This difference led to most of these challenges highlighted in this article to be from respondents living with T1D.
Respondents living with T2D seemed to focus more on incidents when they were kept from following their meal and medication regimens, typically because of busy workdays or unscheduled events. These incidents led some respondents living with T2D to have trouble being the spontaneous people they usually saw themselves as. Researchers have previously suggested that negative feelings about meal changes and medication regimens for people living with T2D might hinder their motivation to incorporate T2D management into their daily routines (Amorim et al., 2014). Respondents with T1D discussed more of a lack of spontaneity than a loss of spontaneity. This difference might be heavily influenced by the age in diagnosis trends between the two groups. Respondents with T1D were diagnosed on average around 15 years old, whereas respondents with T2D were diagnosed on average around 53 years old. When respondents with T1D discussed their lack of spontaneity, it was usually in comparison with what they perceived others without diabetes as able to do rather than a past self. By contrast, respondents with T2D spoke more of a loss of spontaneity through comparisons to a past, more spontaneous self. This difference might have led to respondents with T2D focusing more on maintaining versus letting go of spontaneity in the episodes they reported, and the way they spoke about themselves, more prominently than those with T1D. It should be noted, however, that prior research suggests individuals who live with T1D throughout adolescence might experience similar kinds of transitional difficulties (Commissariat et al., 2016).
An additional difference in how identity performances were challenged between groups was that one respondent living with T1D reported having someone underestimate their ability to perform an identity based on preconceptions about the intensiveness of T1D management. This difference might be rooted in the differences in materiality (Maller, 2015) between T1D and T2D. Respondents with T1D spoke of consistently checking blood sugar throughout the day and frequently engaging with blood glucose meters, continuous glucose monitors, and insulin-administering devices (insulin pumps, pens, or syringes and vials). By contrast, only one of seven respondents with T2D reported testing blood sugar and taking insulin daily. Respondents with T2D spoke mostly of engaging their T2D through measured and regimented meals, exercise, and pills taken 1 to 3 times daily. Testing blood sugar was often seen as unnecessary and creating extra stress for respondents with T2D. Because blood glucose checks and insulin injections are necessary for T1D management multiple times a day, others might see individuals living with T1D as having limited bandwidth compared with others not living with T1D. It is unclear whether this preconception might also exist for those living with T2D who take insulin. T1D and T2D are sometimes differentiated by their “insulin-dependency” or lack thereof in the case of T2D (Hales & Barker, 2013), which could inform public opinion about the two conditions and those who live with them.
Limitations
The limitations of this study should be noted. First, the findings of this study may or may not be applicable to individuals living with other chronic illnesses besides T1D and T2D, nor the entire population of those living with T1D or T2D. The goal of this article is not to depict a generalizable experience among those living with chronic illness but is instead to highlight a social process that some persons living with a chronic illness might experience. Different illness pathologies, care regimens, and symptoms may result in different ways that individuals manage their identities with respect to illness. Illness management may not be integrated into identity verification processes for different illnesses in the same ways it is for T1D and T2D, if at all. We would benefit greatly from continued studying of the intersection of illness management and identity performances, especially for other chronic illnesses besides T1D and T2D.
Second, the sampling design might have produced a limited perspective of how individuals living with T1D and T2D integrate illness management into identity verification, as well as their ability to do so. A mix of convenience and purposive sampling through personal networks and online discussion forums likely produced a homogeneous and non-representative sample (Etikan et al., 2016; Robinson, 2014), particularly in terms of race and socioeconomic status. While many participants discussed the financial burden that managing T1D or T2D can create, all participants had access to supplies and medications that they needed. As the findings of this study demonstrate, having these supplies and medications can be key components of the identity verification process. Those with less access to what they need might have greater difficulty achieving identity verification when T1D and T2D challenge identity performances. Many who are chronically ill are already at a disadvantage in terms of identity verification given bodily constraints and societal attitudes toward bodies with chronic illness. But access to illness management tools or knowledge, or lack thereof, might create even further disparities in terms of who can more easily have identities verified. Should these disparities exist, they likely cannot be uncovered with this sample. This limitation is especially relevant as high insulin prices and insulin rationing continue to be significant public health issues (Muccioli, 2020; Sable-Smith, 2018; Werner, 2019).
Third, there is likely variation in medication regimens within populations living with T2D that is not captured in this sample. All seven respondents living with T2D reported taking oral agents (six reported taking Metformin, one did not specify). The one respondent who did not specify their prescribed oral agent was the only respondent living with T2D who reported taking insulin. There is considerable variation in the frequency of self-reported hypoglycemia between T2D treatment types (Silbert et al., 2018), and a larger sample of respondents living with T2D might have captured this variation and evoked more narratives about hypoglycemia impeding identity performance similar to those reported by respondents living with T1D. This limitation itself has a caveat in that future research using CGM devices will likely uncover more about the experience of hypoglycemia for those living with T2D (Gehlaut et al., 2015; Levy et al., 2017).
Fourth, the sample is likely not representative of the age of populations living with diabetes. National Health Interview Survey data from 2016 and 2017 indicate that the average age at diagnosis for adults living with T1D and those living with T2D is about 28 and 48 years old, respectively (Xu et al., 2018), compared with about 15 and 53 years old in the current study. The age discrepancy for those living with T1D particularly might be a reason why respondents living with T2D delivered more narratives akin to processes like “holding on” and “letting go” (Aujoulat et al., 2008) as well as biographical disruption (Bury, 1982), especially about subjects like spontaneity, whereas T1D was part of developmental years for most respondents living with it. Understanding more about how individuals diagnosed with T1D in adulthood integrate illness management into identity performances would be a fruitful direction for researchers, as their adaptive processes appear to differ compared with those diagnosed early in life (Due-Christensen et al., 2018).
Finally, some part of the interview structure may have led to respondents mainly talking about the integration process regarding professional identities. Future research in this area should focus on understanding how the integration process might occur regarding other identities, as there may be important similarities or differences compared with professional identities. For example, Adams et al. (1997) find that individuals living with asthma use varying methods for reconciling their asthma treatment with different social identities. Managing T1D and T2D, or other chronic conditions, might be integrated differently into identity performances depending on what types of behaviors those identities typically entail.
Concluding Remarks
This study demonstrates the ways that illness management can be integrated into the identity verification process. Challenges created by chronic illness can often morph into challenges to identities. Respondents living with T1D or T2D discussed how the techniques they use to manage their diabetes can also help them against those identity challenges. When we recognize not only the health consequences but also the social consequences of dealing with symptomatic episodes of illness, we cannot deny how they intertwine with identity performances that are also often episodic. The pathway to health management might often be part of the pathway to identity management as well. Theoretically, we must also recognize the importance of the self not only in relation to others but also in relation to the body, as it is seen and interpreted in social contexts. Researchers should continue to try understanding how the body plays a role in identity processes, as it is clearly an important part of what others interpret when making assessments related to identities.
Footnotes
Acknowledgements
The author thanks Dr. Long Doan and Dr. Dawn Dow of the University of Maryland, Dr. Alex Parkhouse of Quinnipiac University, and Dr. Raymond C. Maietta and Jeff Petruzzelli of ResearchTalk, Inc., for their feedback on this article. The author also thanks members of the Medical Sociology section of the American Sociological Association (ASA) for their feedback on a previous draft of this article presented at the 2018 ASA Annual Meeting in Philadelphia, PA.
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Dean’s Research Initiative from the College of Behavioral and Social Sciences at the University of Maryland.
