Diabetes Identity: A Mechanism of Social Change

Abstract

Historically, diabetes identity has been examined at the individual level as it relates to clinical outcomes and self-management practices. Yet, identity is not experienced as an individually isolated phenomenon. The purpose of this study is twofold: (a) examine the social meaning of diabetes identity and (b) formulate a theoretical model of diabetes identity through a sociopolitical lens. Adults living with diabetes engaged in a diabetes online community (N = 20) participated in a 60-minute semi-structured interview focused on social diabetes experiences and diabetes identity. Seven themes emerged related to illness, individuation, and culture, resulting in a novel theoretical model of diabetes identity: willingness to identify, tales of the un-sick, legends of the responsible, a tradition of change-making, sense of sameness, mystification of difference, and diabetes as a unifying social category. Our study extends previous literature focused on self-management practices and compliance, resulting in a theoretical model of diabetes identity centered around social change.

Keywords

diabetes online community diabetes identity community-based research online advocacy qualitative semi-structured interview social media

Introduction

Diabetes has metabolic, autoimmune, and socioeconomic roots. Impacting roughly 80 million people in the United States, diabetes has been associated with obesity, physical inactivity, high blood pressure, smoking, and high cholesterol (Centers for Disease Control and Prevention, 2017). In the United States, diabetes disproportionately impacts indigenous populations and people of color. For comparison, the prevalence of diabetes among indigenous populations is 14.7%, people of color 9.2% to 12.5%, and non-Hispanic White 7.5% (Centers for Disease Control and Prevention, 2020). Beyond prevalence, there are also disparities between White and non-White youth with diabetes across the United States in technology use and access and reported hemoglobin A1c (Agarwal et al., 2020). Despite these and other inequities (e.g., socioeconomic status, insurance coverage, and employment status), diabetes care has been emphatically reliant on self-governance (for medical compliance) on the part of the patient (Rock, 2005). Furthermore, adults with diabetes have reported a belief that the stigma they face is constructed around the perception that it is up to them as individuals to fix the problem of diabetes (Liu et al., 2017, p. 29). Research in the early 2000s found that if individuals could more tightly manage their glucose levels, they would face fewer complications and be healthier in the long run (Peyrot, 2001). As a result of this research which placed the oneness of diabetes management onto the patient, standards of care changed and concepts of empowerment through self-management became trendy.

Activating patients to adhere to lifestyle prescriptives enveloped the clinical landscape of diabetes, ushering in a new cognitive and mental burden unto those living with the disease. Rather than acquiescing to the inevitability of future complications, persons with diabetes began to ruminate on the possibility of complications if and only if they are not able to sustain tight enough control over their glucose levels. The shame, blame, and stigma around diabetes intensified, and the attribution of poor diabetes control latched to willful characters instead of biophysical factors. Thus, improving patients’ self-management abilities and practices evermore vigorously became the subject of clinical intervention through theories of empowerment, activation, and self-efficacy (Anderson et al., 2000; Lorig et al., 2008, 2010).

The overall care philosophy that has developed as a result of these theories is akin to those critiqued in disability studies literature. In other words, this underlying sentiment in diabetes care parallels the “pull yourself up by your bootstraps” mentality. It suggests that those who try hard earn health, and its antithesis, those who do not try hard reject or do not deserve health (Runswick-Cole & Goodley, 2011). Furthermore, while empowerment, activation, and self-efficacy are important, they do little to recognize and create change in the social structures impacting diabetes health and health care access. Social inequalities, especially those who are stigmatized based on attribution to lifestyle factors, may be “so powerful that they affect people’s blood glucose levels, irrespective of how much they eat, what they eat, or how physically fit they are” (Rock, 2005, p. 484). When considering this landscape of diabetes care and health perception combined with a popularized media representation of diabetes as a disease of gluttony and inactivity, it is no wonder people living with diabetes often reject the term, diabetic. What is more, at its most extreme, some avoid diagnosis to distance themselves from the label altogether.

To summarize, people with diabetes are subjected to two forms of stigmatization. First, they are adjudicated at the point of diagnosis because diabetes is widely perceived as a disease of gluttony reserved for those who “don’t take care of themselves.” Second, they are adjudicated for every micro-decision around food, exercise, and health behavior (e.g., blood sugar monitoring, injecting insulin, taking oral medication) because diabetes management is understood to be controllable by the individuals inflicted with it. In other words, there is cultural compulsion for outsiders (nondiabetics) to perform authoritative surveillance upon the choices of persons with diabetes, a more rigorous judging than what a nondiabetic would be subjected to. A recent study of identity in diabetes affirms this argument—finding that the stigmatization felt by adults with diabetes “was experienced in the way others felt at liberty to impose rules and judgements on them” (Due-Christensen et al., 2018, p. 251).

Diabetes Identity

Diabetes, experienced and defined physiologically as a chronic illness, triggers a process of questioning identity and negotiating self-concept in relation to a popularized representation of diabetes that remains stigmatized through attribution of character-flaws. Adult identity in diabetes has most often been studied in the context of self-management. That is, identity is valued within this literature as its development supports or hinders a person’s ability to perform self-care behaviors. For example, unwillingness to identify as a diabetic was found in one study to be associated with expressed feelings of helplessness and an unwillingness to self-manage (Brouwer & Mosack, 2012). Conversely, another study suggests that those who accepted their type-2 diagnosis also identified with being ill and were thus less likely to follow self-management requirements (Amorim et al., 2014). Yet another found that performing self-management behaviors and experiencing bodily symptoms like hypoglycemia sometimes hindered and sometimes supported identity verification in adults with diabetes (Maietta, 2020). Therefore, diabetes is complex in that for some, claiming identity produces disengagement, and for others, not claiming creates disengagement. With that said, the way identity has been approached thus far in the literature, as a tool of medication and behavior compliance, pads rather than disrupts the ever-pervasive stereotypes. That is, if we only ask about identity in the context of its impact on compliance, we still subscribe to the idea that fixing the problem of diabetes lives within the willpower of the individuals who have it. For example, in a recent study of youth with type 1 diabetes, researchers quote a participant saying

. . . I feel like I accepted [diabetes] because I know that I have it, but I never really take care of myself . . . I don’t check as often, I don’t inject as often. Mainly because I don’t even really want it, I guess

and interpret it as a signal that the participant hasn’t integrated diabetes into their identity (Commissariat et al., 2016, p. 677). The interpretation of identity based solely upon one’s self-described willingness to engage with self-management behaviors, while perhaps logical, demonstrates how deeply entangled existing knowledge of diabetes identity is with individual biomedical performance. Even though their participant said they accepted diabetes, their comment was interpreted as a rejection of diabetes identity because it was accompanied by an admission of non-compliance. Studies like this leave us to question if identity has been measured at all, or if what has been captured is simply another self-management tool.

Evermore, a problem with looking at identity in diabetes only as it relates to health behaviors is that it does not consider the social or historical factors shaping that identity or how identity constructions impact the social world and communities within which that identity interacts. So, while identity in diabetes has been considered across studies, we argue that diabetes identity has not. This study advances the literature by theorizing how diabetes identity is constructed and what that construction seeks to do beyond the realm of the individual.

As we will unpack within this article, accepting a diabetes identity does not necessarily include disability within it. Many people with diabetes simultaneously accept diabetes identity and reject disability identity, along with any association with sickness. This paradox, of identifying as a specific type of sick, but not as generally sick, may present limits on what a theory of diabetes identity can do. To address this paradox at least in part, we have ventured to hear from people with diabetes who share widely and speak loudly about their lives with this condition. Our historical knowledge of diabetes online communities (DOCs) allowed us to locate such individuals in online social media spaces and thus embarked there. H.R.W. had been immersed in three diabetes online communities for the 6 years prior to the initiation of this research project, and M.L.L. had been studying various aspects of DOC participation since 2014. Our combination of experience, both lived and learned, gave us a unique approach to navigating the communities in question.

One scoping review defined Diabetes Online Community (DOC) as, “a user-generated term that encompasses people affected by diabetes who engage in online activities to share experiences and support in siloed or networked platforms” (Litchman et al., 2019). While “DOC” is undoubtedly a user-generated term, it is also a place in which discussions are being had about what it means to have diabetes. As a research site, it presented a stage upon which many people with diabetes were talking about their shifting diabetes identity.

Method

This study was part of a larger netnographic project aiming to unpack how the condition of diabetes is being politicized online through narratives and counter-narratives. As a part of that netnography—which is a flexible method allowing for a systematic approach to studying online groups ethnographically (Kozinets, 2015), we conducted 20 semi-structured 60-minute interviews with DOC users who utilize diabetes-related hashtags to share their personal journeys with diabetes. This qualitative study used a series of iterative, in-depth interviews designed using ethnographic principles. Reflexive fieldnotes were utilized as a part of the study design to check researcher assumptions and biases.

Setting, Sample, and Recruitment

Potential participants were identified by searching hashtags we had historical knowledge of, such as: #T1D, #T2D, #DiabetesCommunity, #DOC, #DSMA, and #IWishPeopleKnewThatDiabetes, Hash tagged photos, posts and tweets were then screened against the following inclusion criteria: (a) post about representations of diabetes on their social media channels, (b) poster self-identified as a person with diabetes, (c) post described a story or personal experience to talk about those diabetes representations. If the post met inclusion criteria, the social media user’s profile was then screened for the following: frequency of diabetes-related posts, audience/follower type and size, social media platform preference, and level of personal sharing. Demographics were also screened when available, including diabetes type, ethnicity, gender identity, and age.

Ethical Considerations

This project was approved by the University of Illinois at Chicago Institutional Review Board (2019-0168). Because all participants in this study publicly share content about diabetes across social media platforms, they were offered the option to have their real names and social media handle disclosed in presentations and publications as a part of the informed consent process. This ethical consideration was included for two reasons: (a) to serve as a form of community capacity building by giving credit to these individuals as authors (L. D. Roberts, 2015) and (b) to disrupt the oppressive power structures that deny credit to patient authors as a form of paternalistic forced protection (H. Roberts, 1981). All 20 participants recruited for the study elected to use their real name and social media handle when quoted on their informed consent forms. Fourteen selected to review all quoted material used before submission for publication. Thus, this completed manuscript, in its final form, and the quotes used have been sent to, reviewed by, and manually approved by 14 participants prior to publication.

Research Questions

Three research questions drove this study on diabetes identity:

Research Question 1 (RQ1): How does participation in diabetes online communities influence users’ sense of identity?

Research Question 2 (RQ2): What are the components of diabetes identity?

Research Question 3 (RQ3): If at all, how do counter-narratives influence diabetes identity?

Data Collection—Interviews

Each semi-structured interview lasted 60 minutes and covered topics relating to participation in diabetes online communities, lived experiences with diabetes, and diabetes identity. The initial interview guide, along with questions developed throughout the interview process in response to participants’ stories, are provided in Supplemental File 1.

As detailed in Supplemental File 1, we used an iterative interview process (DiCicco-Bloom & Crabtree, 2006), in which we allowed questions to shift throughout the interviews as interviewees saturated certain questions and brought up new ones. As is common in in-depth interviewing, the interview guide remained flexible to accommodate participant responses and data processing (Seidman, 2006). Throughout the interviewing process, we used a constant comparative technique (Redman-MacLaren & Mills, 2015 ).

Data Processing and Analysis

All interviews were conducted by telephone and audio-recorded using the interview guide. Throughout each interview, reflexive fieldnotes were taken to check researcher assumptions and biases. Recorded interviews were transcribed and a subset of audio files was compared to delivered transcripts to ensure accuracy. Transcribed interviews were then imported into MAXQDA (VERBI, 2016) for analysis.

All data were subject to an iterative coding and recoding process consistent with ethnographic procedures and heuristic analysis (Charmaz & Belgrave, 2012). This axial reading of the data as it was recorded allowed us to continue asking if, how, and why a phenomenon was happening (Charmaz & Belgrave, 2012).

To increase rigor (Morse et al., 2002) and ensure social validity (Foster & Mash, 1999), we conducted two-member checking processes. First, we sent the two theoretical identity constructs developed herein to three participants for reflection and feedback. That reflection and feedback was then used to iterate the constructs. Second, we sent the first draft manuscript to 14 participants for approval, reflection, and feedback. Their feedback was used to refine and adjust the theories, patient-author representation, and overall manuscript.

Results

32 participants were invited to participate and 20 participated. Participants included individuals living with type 1 (N = 15) and type 2 diabetes (N = 5). Participants age ranged from 18 to 69 years (M = 39.4, SD = 15.88). Table 1 shows participant characteristics by diabetes type, sex, and ethnicity.

Table 1.

Participant Characteristics (n = 20).

Variable	n	%
Diabetes type
Type 1	15	75
Type 2	5	25
Sex
Female	10	50
Male	9	45
Decline to state	1	5
Ethnicity
Caucasian	14	70
Hispanic	2	10
Black	4	20

Table 2 demonstrates examples of the coding and categorization we used throughout the axial coding processes.

Table 2.

Demonstration of Analytic Coding and Categorization Process.

Interview quote	Code	Subcategory	Category	Core category
I think there is a diabetes identity, a kind of sense of a D nation among type-1s. I don’t see that kind of identity among type-2s, and that’s a complicated question. Some of it has to do with the questions of shame and self-blame. Some of it has to do with the degree to which I identify as a diabetic. I’m able to identify as a well-controlled diabetic. I think many people are not, and that keeps them from really being able to or wanting to identify as a diabetic because it requires identification with a condition of shame and failure.	Willingness to identity-based on sense of diabetes self-management	Type-specific diabetes identity	Mystification of difference	Identity conceived of as unified social category
I don’t know if there is a diabetes identity because all of us are different. Everything we go through is different. We may have peaks of similarities, but it’s not enough to make it a universal thing. But, you know, no, we don’t live in the same extent every day. But the minute we see it, when we see a [Continuous Glucose Monitor] monitor on someone on TV, we see an insulin pump tubing or something, we’re like, “Oh my God, oh my God, this is me.” There’s automatically that connection we have and I love that. I want that to stay. I want that to be more universal because it’s what we need, and it’s what helps us get this every day because we’re not alone.	Experiential-based differentiation	Identification based on visible markers	Sense of sameness	Identity conceived of as unified social category
I think if you put a bunch of diabetics in a room the same way if you put a bunch of depressed people or cancer patients or anything like that, I think they would have lived this similar lived experiences of dealing with insurance companies, dealing with doctor’s offices, dealing with institutions like schools or a workplace. Maybe having a high or low episode that was particularly debilitating or scary.	Diabetes-related hardships	Identification based on social conditions creating hardship	Sense of sameness	Identity conceived of as unified social category

Participant conceptions of diabetes identity had overlapping elements, and the extent to which each person said diabetes was a part of them was complimentary across diabetes-type, gender, ethnic, and age boundaries. The following seven themes related to diabetes identity emerged: willingness to identify, tales of the un-sick, legends of the responsible, a tradition of change-making, sense of sameness, mystification of difference, and diabetes as a unifying social category.

Willingness to Identify

Interviewees differed in their willingness to identify with diabetes. When asked to what extent diabetes was a part of them, most interviewees initially responded with an adage: it is a part of me, but it isn’t all of me. We interpreted this adage as a partial acceptance and partial rejection of diabetes identity. We read, “it isn’t all of me,” to mean people did not want to let something associated with negative character attributes define them, so they personally rejected it as a full identity. To challenge our preconceptions and to probe the interviewees to dig deeper than common narrative scripts, we asked what part of them diabetes was not. After brief reflection, most interviewees concluded that there were not many parts of their lives that diabetes did not touch. Through co-analysis and lengthy discussions, it became clear to us that interviewees were positioning themselves around a dual-directional identity. The first direction was to self (it is a part of me), and the second, to Other (but it isn’t all of me). Interviewees, in an attempt to not be reduced by able-bodied persons, used this phrase to demand recognition of their full personhood to outsiders (e.g., nondiabetic persons).

Willingness to identify, however, was not categorically limited to questions about identity integration. One interviewee, Douglas Michael Massing (Twitter: @T2DRemission), questioned willingness to engage with diabetes communities and diabetes identity as associated with the level of one’s diabetes management, contemplating that willingness to identify may occur in higher rates in people who have a sense of control over their self-management. Drawing willingness to identify into willingness to challenge the status quo, he said,

In order to be willing to come forward with one’s chronic condition, diabetes or any other . . . condition, one has to feel confident about being engaged in managing the condition. And managing the condition and being engaged with managing [a] condition sometimes means either directly challenging the orthodoxy of medical care or setting standards for it; deciding what one will put up with or not, what one will listen to or not; deciding whether the messages that come to one through the medical system are helpful or not. So yeah, I think that in order to identify with a condition, a certain degree of—I don’t know—empowerment perhaps is necessary, however one finds that.

Nearly all interviewees expressed a similar take. They explained that when posting diabetes-related content, one of their goals was to be real—to show the ugly, scary, turbulent parts of diabetes so that their followers didn’t manufacture unrealistic expectations for themselves or others with diabetes. Kylene Redmond (Instagram: @BlackDiabeticGirl) shared that when she posts about diabetes online, she tries not to lose sight of the realistic portrayals of diabetes. She said, “I always want anyone that ever follows me or likes a post or sends me a DM to know that, ‘I’m just like you. I’ve been there. I’ll be there, and we’re all battling this together’.” Others described being real as showing that there is no such thing as perfection when it comes to diabetes management, or as showing all sides of the disease. Dex Geralds (Instagram: @DexGeralds) described being real as “putting it all out there” and said he gets a feeling of relief when sharing the whole story of what it is like to live with diabetes.

After all the interviews were completed, we reanalyzed the data looking specifically for what out-of-control might have meant to interviewees. We found that, most frequently, interviewees distanced themselves from descriptors of being out-of-control (e.g., variability in glucose, disabled, sick, and prolonged hypoglycemia). Sickness was almost exclusively rejected as an identifier.

Tales of the Un-Sick

To proactively protect themselves from pity arising from stereotypical formulations of people with chronic illness and disability, interviewees described processes of finding and publicizing silver linings related to the disease. One interviewee, Ginger Vieira (Instagram: @GingerVieira), discussed this as an intentional, proactive process of between-the-lines narrative construction. She said,

I have three diagnosed conditions, technically. Celiac, fibromyalgia, and type-1 diabetes. And somebody could hear me say that and take away from that that I’m a sick, unfortunate case of someone bogged down by autoimmune disease, depending on how I said it and the look on my face. Or I could say it, and they could be like, “Damn, girl. Look at you go.” Right? It is all about how you carry it.

To Ginger, proactively protecting oneself from pity is a part of the identity integration process. And Ginger was not alone. Without being prompted, Anita Nicole Brown (Instagram: @Anita_Nicole_Brown) jumped into describing what diabetes has done for her as a person, taking a positive disposition toward it overall. She said,

But because I have to know my body, I have to listen to my body. I have to be able to understand what I’m doing to it and how I’m doing the things that I am doing to it. Would I have been able to do that had I not gotten this disease? I really don’t know if I would have.

Here, Anita Nicole disassociates herself with an image of a diabetic as a sick person focusing on the negative aspects of the disease and turns toward what it has done for her. In this way, her diabetes identity serves to protect her own mental health. But we pondered, what kind of internal and external pressure could potentially build up by asking oneself to see diabetes as a gift—especially within the context of actively pushing away from sickness as an identity?

One interviewee drew out this line of questioning. Douglas Michael Massing (Twitter: @T2DRemission) said that in his diabetes online community, he frequently sees people saying, “I don’t want to be seen as a sick person.” He went on to consider, “well why not?” citing Samuel Butler’s novel Erewhon, in which a character is forced into a life of hard labor because of an illness. He said that just like in the book, there is a “neo-puritanism where . . . extending beyond diabetes, that if you’re sick, it’s your fault. If I’m healthy, it’s because I’m a good person.” Despite frequently deployed empowered statements which challenge the status quo, there contrarily do seem to be aspects of diabetes identity that pull back and reinforce discourses of normalization. In an attempt to liberate oneself from associations with the diabetes stereotype, people with diabetes proactively reject the pity they feel is associated with sickness. When this happens at a group level, we see evidence of an internalization of the “pull yourself up by your bootstraps” model—which is being reinforced by the biomedical complex. That is, we see people with diabetes aligning with the idea that they are healthy because they take care of themselves, and only sick when they do not.

Legends of the Responsible

When asked who diabetes requires them to be, nearly all interviewees gave some iteration of “responsible”: organized, a constant planner, and a person who thinks through all situations in advance. Being responsible was also explained as an external social pressure that impacts diabetes identity. Abby Burch (Twitter: @orbingpunk) said,

There’s kind of this identity of who you’re expected to be as someone with diabetes, so you’re expected to be this person who is checking their blood sugar regularly, or if you’re not, then you’re getting chastised by your doctor. And you’re expected to be this person who is eating the right things and not eating sweets for fun. So I feel like the public has a perception of who they think diabetics should be.

Being responsible with one’s diabetes self-care through preparedness meets external demands, and when performed publicly also works to change the media-perpetuated construction of diabetes as a disease of people who do not care for themselves.

When asked, “If you were on the Ellen show to talk about diabetes, but you only had 1 minute to speak, what would you say?,” all but two interviewees used their only hypothetical minute on Ellen to talk about the seriousness of diabetes. For example, the youngest interviewee, Amber Finneseth (Tumblr: https://liv-abetic.tumblr.com/), used her minute on Ellen to say,

People don’t know what sort of struggles you go through with it. It’s very hard because a lot of people go through things, but it’s a very hard disease, as far as I’m concerned. A lot of people don’t seem to grasp that, they don’t really take it seriously.

When probed about why they shared a narrative of seriousness, interviewees described a social world that misunderstands them—a world that thinks they are lazy, unmotivated, and blameworthy. They described carrying the weight of a stereotype on their shoulders yet having to continue self-care anyway. One interviewee brought forth an analogy from an early Disney movie, Mulan. She said,

and every day for us mentally is like that scene where [Mulan] is learning to carry all the weight and trying to climb the pole . . . We have to be strong all the time constantly to do the diabetes stuff AND show the world we can.

Like this, 18 other participants said the most important thing they want outsiders to know is that diabetes is hard, that it requires 24-hour attention and planning. Across diabetes types, ethnicity, sex, and age, dispelling the myth that diabetes is easy was the highest priority. If the goal of prioritizing is to elevate the social class within which diabetes currently exists, how could this happen through the narrative of seriousness? Why was the narrative of seriousness chosen by so many as the primary mechanism of change?

A Tradition of Change-Making

A process of personal and social transformation emerged across all interviews. As interviewees explored their diagnosis and their own story of living with diabetes, they attached value and meaning to their experience. Many described using their experience to create change, to make a difference. It is through meaning-making and reflection of circumstances that interviewees in effect liberated themselves and others from the stereotypes. Some called their diagnosis “a test from God”; others described it as their purpose in life—diabetes to them, was a calling. Some also described diabetes as a force, pushing them to listen to their bodies in a way they had not before. Thus, for those who are not actively advocating or trying to make a difference, the change process may be directed more inward.

For those with increasing exterior-facing motivations, change-making was more integrated into diabetes identity. For example, John (Twitter: @JoltDude) described their primary identity as change-maker. They said,

I think who I am is somebody who wants to try to make a difference for others who are in the same boat as I am. And diabetes is not a one size fits all problem and has limited solutions at this time.

John rooted their change-maker identity within diabetes contexts citing an area which needs confronting, diabetes solutions. The most frequently cited area of change mentioned by interviewees was a shared experience of isolation among people with diabetes. Seventeen of the 20 interviewees described a hope that their diabetes-related posts helped other people “feel less alone.” Several invoked their own stories and experiences of isolation, saying they wanted to create a world where no one else would ever have to feel that way. And one, Abby Burch, described it as a form of liberation. She said it is about being able to let go of it as a hardship only you face and let the world in.

Diabetes Identity, then, is built on internal and external processes and imperatives, underlying more delicate and potentially flimsy principles and mechanisms of social change. There is an effort for liberation built into it, a liberation from associations with a spoiled identity, from stigma, external blame, shame, and reductionist perceptions (Goffman, 1963/1986).

To most, posting about diabetes online changed over time from an exercise in self-healing, to one of social change. Claiming diabetes and redefining what diabetes looks like is an unfolding tradition across diabetes online communities. Redefining what diabetes looked like took different forms for different people in this study. For some, like Brad Slaight (Instagram: @DeeHeroSquad), posting about diabetes publicly helped the general public accept the new non-normal normal around diabetes. He said,

The new normal is there is no-normal, and I think that’s what I was getting at is that we’re all individuals. We’re all snowflakes. They may look alike, but they, if you really look at ‘em closely, they’re vastly different.

Brad’s use of an ever-changing diabetes identity in oddity/abnormality invokes acceptance of a social construction of diabetes not reliant on stereotypical formations.

One interviewee, Anthony Paviour, a U.K.-based Tumblr blogger (Tumblr: https://whoneedsapancreasanyway.tumblr.com) said that if there was a diabetes identity, it revolved around shared social conditions. When asked for an example, Anthony said, “like reaching into your bag to get something and getting stabbed by the lancet that you left for six months and forgot about; or having a deep appreciation of juice boxes, for example.” These shared experiences, to Anthony, were representative of commonalities across borders, across physiological differences, across social conditions. To him, diabetes identity existed as a product of diabetic culture. What would it mean for a diabetes identity to be built around a “diabetic culture” and the inclusions and exclusions that go along with that?

When asked, “is there a diabetes identity?” interviewees were split 50/50. Of the half who said no, most argued that individuals with diabetes are too different to be coalesced across boundaries, revealing a mystification of difference. Of the half who said yes, all argued that all people with diabetes share experiential knowledge—revealing a sense of sameness. Of those who were on the fence, all cited access as a mediator of diabetes identity, suggesting an inequitableness involved in the process of diabetes identity integration.

Sense of Sameness

When describing their online connections, interviewees expressed closeness to others with diabetes that extended beyond space and place. One interviewee said, “It’s hard to explain, they’re strangers, but they understand parts of me more than my family and friends”—a sentiment which nearly all interviewees expressed. In diabetes online communities, a summative phrase often used to portray this is that online, people with diabetes can find others “who get it.” Interviewees expressed a sense of relief as they outlined their coming to community moment when, for the first time, a stranger said a statement akin to, “me too.”

Many who expressed this sentiment shared stories of connecting with other people with diabetes as a beacon of light. Mike Natter (Instagram: @Mike.Natter), for example, said that “The family component of [diabetes identity], that kind of instant connection with someone who also shares it is very real and very deep.” He went on to compare the deep shared feeling to going to war. He said, “You’re experiencing a life-altering condition every day, minute to minute experience that, unless you yourself have and do, you can’t truly deeply relate to. And so when you have that relation, I think that immediately creates that bond.” Here, Mike points to a transformation built on a sense of sameness. That is, he was able to focus deeply on a single point of connection, and dull thoughts of what differentiates them.

Throughout data analysis, we highlighted points at which interviewees talked about meeting their online diabetes friends in real life (face-to-face). Eleven of the 20 interviewees organically brought this up during the hour-long interview. All of them drew a deep breath before elaborating on those connections. They took pause, and most fumbled over their words. Kylene Redmond (Instagram: @BlackDiabeticGirl), for example, said of meeting her online friends in real life,

It was amazing [long pause]. . .someone walking up to you, like, “I know you, you’re the black diabetic girl,” and you’re like, “Oh, hey!” You know like, “What’s your Instagram name?” [laughter]. . . The community definitely brings you lifelong friends, because you can have pretty good friends and family to support you, but they don’t know what that high and that low really feels like.

Reactions like Kylene’s lead us to wonder, was there something ineffable about these encounters? Is this bond something that can be felt, but not explained? Do people with diabetes let their guard down, even in the face of difference, and open up upon meeting another person who gets it? Could the sense of sameness be wrapped around an internal drive to feel less isolation, to be liberated from the mental burden of experiencing such a serious disease alone?

Mystification of Difference

Together with the sense of sameness, interviewees showed an overwhelming tendency to construct separation through difference. In their personal connections, they were able to bypass differences and connect through a sense of sameness; however, when considering a larger population, interviewees highlighted distinctions. They did this even when asked to imagine bonding factors that might draw cohesion to the group. Interviewees described an array of differences between people which would make unifying them under one social category impossible.

Differences explained included diabetes-type, physicality and physiology, race, cultural backgrounds, personality, disposition, attitude, socioeconomic differences, political differences, and in the social acceptability of the person irrespective of personal attributes. People frequently cited a common diabetes colloquialism, “your diabetes may vary” put forth by a diabetes blogger, Bennet Dunlap, in the early days of diabetes blogging (Dunlap, 2013). Interviewees frequently cited this to describe physiological and economic differences between people that work to diffuse a unified diabetes identity. For example, when asked if there was a diabetes identity, Anita Nicole Brown (Instagram: @Anita_Nicole_Brown), said,

I don’t know if there is a diabetes identity because all of us are different. Everything we go through is different. We may have peaks of similarities, but it’s not enough to make it a universal thing. So I don’t know if there’s a diabetes identity.

Here, Anita Nicole reveals an understanding of identity as an individual, rather than collective, construct. Because her diabetes and experience with it are not the same as anyone else, she sees it as uniquely hers. Other interviewees took a more globalized look at diabetes identity, identifying micro-groups within the broader social category. Corinna Cornejo (Twitter: @Type2Musings) identified four archetypes or personas when considering identity:

The diabetes hero who says “I’m going to run marathons, be a triathlete, climb mountains, despite diabetes”;

The tiger parent “whose child has diabetes and they’re forever fighting for their child and their child’s ability to get access to the care they need and be able to do things like participate in sports and live a full life”;

The savior who says “I want to dedicate my life to being a medical professional or researcher or work in diabetes so I can make life with diabetes easier, better for other people with diabetes”; and

The “poor me” person “who’s really been either brought into or been affected by the stigma that surrounds or can surround diabetes and feels like there’s little or no hope of having a full life or maintaining their level of health.”

Ginger Vieira (Twitter: @GingerVieira) categorized along similar lines, arguing that identity subgroups vary based more on lifestyle interests. For example, there are low-carber groups, vegan groups, exercise groups, coach groups, and so on which all have their own sets of rules and norms that show splintering within the social category. Both Corinna and Ginger here are reflecting on subgroups within their DOCs who seem to exhibit specific sub-identities. Corinna’s reflect perceived narratives that pertain to attitude and a pursuit of living a full life for self or other, and Ginger’s reflect narratives that pertain to specific interests related to healthy lifestyles. Taken together, they demonstrate how non-monolithic and complex people in their DOCs are perceived to be.

Interviewees who argued against a unified diabetes identity on the base of individual difference were also those who shared stories of an indescribable bond with others like them. While these may seem to contradict, they actually are compatible. Both theoretically conceive of diabetes identity as a social category. Both weigh the reality of membership, taking into account divisive inter- and intrapersonal differences between people. The sense of sameness and the mystification of difference work together to acknowledge the potential unifying factors surrounding the experience of diabetes.

Diabetes Identity as a Unifying Social Category

Kate Cornell (Twitter: @SweetenedKate), answered the question of a diabetes identity by highlighting differences. Then, she came around to consider the difference between diabetes identity as it is felt from the inside versus the outside. She said,

I’m thinking about all the people that I know in the online community, and we are such a diverse, awesome group of people, but yet the people who don’t have diabetes or are not connected in some way and don’t really understand it, there is definitely a persona. There’s a stigma. There’s an assumption made about people with diabetes and who they are and what they do or don’t do.

Kate describes a recognition of differences alongside an externally maintained stigmatizing categorization of diabetes. The unifying factor for her was the ascribed persona or identity with negative associations. For others, the named unifying factors closely aligned with social conditions like being forced to navigate a health system and being financially disadvantaged because of the cost of medications and supplies. These unifying factors were discussed as oppressive elements requiring people with diabetes to be resilient and to persevere, perhaps another indication that the pervasive individualized narrative requiring diabetics to “pull themselves up by their bootstraps” has been internalized even within those who recognize the narrative as problematic. Diabetes was recognized as a social category impacting populations so diverse that they can only be unified through the experience of social marginalization. Figure 1 shows a theoretical construct of cohesion and access to diabetes identity.

Figure 1.

Identity construct I—cohesion and access.

And just like other social categories, resources available to those within the group are limited (e.g., financial, free time to engage, and means to search). Interviewees who mentioned this described it as an issue of access. Diabetes identity has a hive mind (popular opinion attached to action), according to three interviewees. One of those three shared a story of feeling ostracized for pointing out that when pharmaceutical companies fund community events, the community is subdued into a state of inaction. The interviewee shared that because the community leans so heavily on “deep pharma dollars, we can never do anything real.”

A person with diabetes may not have access to the narratives accepted by the hive mind due to a lack of socioeconomic or political resources, or they may be rejected by the hive because they do not conform to dominant hive mind narratives. That is, a person seems to need the means and a willingness to search for others like them to tap into dominant diabetes identity, and in so doing take a balanced and real approach to diabetes while remaining relatively optimistic and thoughtful, to find and be accepted by the group. Two interviewees with type-2 also described a splintering within diabetes identity that worked to exclude people with type-2 altogether.

The power of diabetes identity as a unified social group despite the splintering within it, to diabetes advocate Corinna Cornejo (Twitter: @Type2Musings), is to create change for all people with diabetes. Corinna said,

I think that there’s this whole impetus and movement to humanize healthcare and everything from patient engagement to patient representation to really trying to change the way healthcare is practiced. It’s not the traditional “I’m the doctor, I know everything.” “I’m going to give you the miracle pill to make you better.” To more of sort of an ongoing, collaborative process.

And Corinna was not alone. Several other interviewees said a part of their motivation for posting about diabetes was to raise awareness about and elevate the realities of diabetes, hoping that nondiabetic audiences would see it and change their mind about what it must mean to live with it. Anita Nicole Brown (Instagram: @Anita_Nicole_Brown) pushed this message further when, if on Ellen, she “would say we are a force that needs to be recognized. You guys have no idea what we’re capable of, but it’s about time you learned.”

A Theory of Diabetes Identity

Synthesizing all of the themes, the results reveal a second construct of diabetes identity as a mechanism of social change. Figure 2 demonstrates a theoretical model which deconstructs the adage “diabetes is a part of me, but it is not all of me” using elements of diabetes identity identified throughout this article.

Figure 2.

Identity construct II—adage deconstruction.

Elements presented as blocks represent more consistent internal and external processes and imperatives, while more delicate and potentially flimsy principles and mechanisms of social change that interact with changing external perceptions of diabetes are presented as cones and triangles.

Discussion

By formulating diabetes identity as a dual-directional one that is embedded not in physical space, but rather in experiential place, its roots and mechanisms built around social change become evident. Within seeking change, those with diabetes play a cost–benefit game of identification involving the processes of blame-negotiation and stigma management. Identification with a diabetes identity has been argued to heavily rely on where the group or person lands in their perception of blame for the stigmatizing attribute (Crocker & Major, 1989). One female CIS-gendered interviewee who served as a member checker described her disconnect with the second Identity Construct. She said,

The building block of marginalization is definitely subjective. I personally don’t feel “marginalized” just that I have a condition that not everyone in the world does. If the whole model is built on that construct, it won’t apply to me.

She did not feel marginalized on the basis of diabetes but recognized that others do. The linkage of one’s lived experiences to institutionalized discrimination has been described as a “part of the iterative process of identity-building and group affiliation” (Evans, 2017, p. 3). Choosing to associate with the factors of an illness that are marginalized may be a process of negotiation and re-negotiation that occurs gradually and cyclically, affirming the findings of some research in this area (Maietta, 2020).

It has become apparent through these interviews that those with access to dominant narratives around diabetes identity may experience and politicize diabetes differently than those who do not. In considering this, future research ought to address those with diabetes who have never met another person with the disease (or has met someone with it, but only superficially). Despite our ever-connected world and an internal drive to move away from a sense of isolation, people go years, even decades feeling alone. How would the theoretical constructs developed within this study be perceived by those without connections to others like them?

There were a few limitations for this study. First, we only recruited individuals who are arguably well connected, presenting a potential skew in the results. Their access and contribution to DOCs likely influences their positions and experiences. Future research ought to replicate the concepts we explored here with populations less well-connected to compare diabetes identity in a general population. Furthermore, the nature of this study and the methodology used did not allow for communities disproportionately affected by diabetes, for example: American Indian and Latino (Indigenous), who have less access to the internet, to be included in the research. This presents limits on how far reaching the theories presented here may go. Finally, we were not able, within the scope of this work, to more fully explore the potential sub-identities perceived to exist by some interviewees (e.g., Corinna Cornejo and Ginger Vieira). There is much to unpack regarding the structure and motivation behind sub-identities, and future researchers would do well do examine them closely.

The findings of this study also point to the concept of control, which is a problematic concept to deconstruct socially because there is an experienced materialization within the body which biophysically reinforces the objective to maintain that control and normalcy (Arduser, 2017). Because control, lack of control, and their respective fluctuations can be felt within the body in immediate time, the physical, emotional, and mental ebb and flow of one’s physical glucose levels cannot be neatly detached from the social concept of control. Thus, diabetes identity interacts with both the materialized biophysical feeling of lack of control and lack of control over social stigma that sees diabetes as attributable to undesirable character traits. The concepts and constructs explored in this article challenge popularized representations of diabetes by considering diabetes identity as a mechanism of social change. Should other researchers take up this formulation of diabetes identity in their studies, what we know about what it means to live with diabetes today might drastically shift.

As Disability Studies Scholar Tobin Siebers described, when collectively in the face of identifiability and pejorative treatment, “Individuals begin to constitute themselves as a minority identity, moving from the form of consciousness called internal colonization to one characterized by a new group awareness.” The findings we presented here suggest the emergence of a group awareness—of critical empowered consciousness. As such, from here, we must begin to explore the structure of any resulting social change. Is it effective? Does it play out as it is intended to? Where is the locus of change, and why was that locus selected? What can we do to assist online communities in their efforts to effect change? As researchers, it is our responsibility now to understand diabetes identity as complexly embodied, and, equally important, as a mechanism of social change.

Supplemental Material

sj-pdf-1-qhr-10.1177_1049732320984740 – Supplemental material for Diabetes Identity: A Mechanism of Social Change

Supplemental material, sj-pdf-1-qhr-10.1177_1049732320984740 for Diabetes Identity: A Mechanism of Social Change by Heather R. Walker and Michelle L. Litchman in Qualitative Health Research

Footnotes

Acknowledgements

The authors acknowledge H.R.W.’s dissertation committee members, Joy Hammel, Susan Magasi, Carrie Sandahl, and Robert Kozinets, who offered support and guidance for the 2-year duration of this project. Also, this project would not have been possible without the folks with diabetes who share their stories and lives across social media. A gratitude-filled note of acknowledgment to them is long overdue.

Declaration of Conflicting Interests

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: H.R.W. reports no conflict of interest. M.L.L. has investigator-initiated grant funds from Abbott Diabetes Care that is unrelated to this study.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research received a small institution-specific grant from H.R.W.’s graduate university, the University of Illinois at Chicago. No other funding was received from any funding agency in the public, commercial, or not-for-profit sectors.

ORCID iD

Heather R. Walker

Supplemental Material

Supplemental Material for this article is available online at

Author Biographies

Heather R. Walker is a social scientist at the Univerisity of Utah Health living in Salt Lake City, UT and has a PhD in Disability Studies from the Univerity of Illinois at Chicago.

Michelle L. Litchman is an assistant professor at the University of Utah College of Nursing. She has a PhD in Nursing from the University of Utah.

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