“I’m Going to Be Good to Me”: Exploring the Role of Shame and Guilt in Patients With Type 2 Diabetes

People with type 2 diabetes may experience self-blame about their illness (6), which is defined as internal attribution for negative events (9). Within the larger umbrella of self-blame sit two dominant moral emotions: shame and guilt (9). The distinction between shame and guilt lies in the conceptualization of the self (9,10). In shame, the self is the focus of negative evaluation, whereas in guilt, the action done is the focus of the negative evaluation.

Previous research has built on this framework to describe several features that further differentiate shame and guilt (9–13). When experiencing shame, individuals are concerned about how other people evaluate them (9). In contrast, when experiencing guilt, individuals are concerned about how their behavior affects others (9). Feelings of worthlessness, powerlessness, and the sensation of shrinking are associated with shame, whereas remorse and regret are associated with guilt (9). After committing a transgression, people who are experiencing guilt will most likely attribute their transgression to something specific (i.e., not an indication that they are generally “bad” people) and unstable (i.e., that they will be able to change in the future). On the other hand, people experiencing shame after committing a transgression are likely to have an attribution that is global (i.e., their transgression is characteristic of the type of person they are) and stable (i.e., that they will continue to experience these character flaws in the future), which is termed “global devaluation” (9). In short, shame and guilt can be differentiated by the phrases “I am bad” (shame) versus “I did something bad” (guilt) (Figure 1) (13).

The distinction between shame and guilt has implications for behavior change. Because guilt is attributed to behaviors, it presents an opportunity to change behavior, offer an apology, or repair the negative consequences (9). Shame, however, “corrodes the part of us that believes we can change and do better” (13). When people experience shame and the deficiency is associated with the global self, the reparation seems like an inadequate solution, and there is little hope of transforming or doing better (9). Researchers have suggested that the self-talk associated with shame such as “I’m a bad person,” “I’m a liar,” and “I’m a cheat” may actually lead people to act and think in ways that are consistent with these self-conceptions (9,13).

The chronic nature of diabetes management involves frequent medical encounters in which lifestyle choices are discussed in intimate detail. Previous research has shown that type 2 diabetes may be an emotionally distressing condition (14) and that patients’ experiences of shame and guilt in the patient-clinician relationship are often attributed to discussions about lifestyle behaviors (15). Evidence suggests that most patients with type 2 diabetes want their clinicians to inquire about their emotional struggles related to type 2 diabetes management (14). At the same time, the medical field’s focus on objectivity, efficiency, and rational thinking creates an environment in which it may be adaptive for doctors to detach from emotions when interacting with their patients and to readily dismiss patients’ emotions (16).

Previous research suggests that feelings of self-blame in people with type 2 diabetes may be common in the clinician-patient relationship, especially because of the complex care regimen required to achieve treatment goals (7,8,17). Within this larger category of self-blame, shame and guilt have nuanced differences that may have important implications for behavior change in people with type 2 diabetes as they navigate their disease and disease management. To date, however, there have been limited studies focusing on the presence and impact of shame and guilt in the clinician-patient relationship among people with type 2 diabetes. Toward that end, the goal of this qualitative study was to explore patients’ experiences of shame and guilt in type 2 diabetes management and the impact their clinicians have on these experiences.

This was a qualitative study in which semi-structured interviews were used to explore the experiences of people with type 2 diabetes of shame and guilt related to diabetes management and the impact their clinicians had on these experiences.

Interviews were conducted from January to March 2017 among a sample of patients with type 2 diabetes. Participants were identified through an emergency department (ED) patient contact database at a single urban academic hospital. Patients <18 years of age, those who were non–English speaking, and those unable to provide informed consent as assessed by the interviewer were not included. At the time of initiation of this study, there were 178 patients in the ED database reporting a diagnosis of type 2 diabetes. Data for potential participants were extracted from the database and randomized to avoid selection bias based on the time of the database entry. Potential participants were contacted by telephone, and verbal consent was obtained for patients interested in participating.

Interviews were conducted using a semi-structured interview guide (Supplementary Appendix S1). The guide was designed to assess participants’ experience living with type 2 diabetes, including their relationship with their clinician, the impact of their condition on their daily life and self-conception, and the challenges they faced in adhering to treatment regimens and lifestyle modifications. Participants were also asked basic demographic questions. Interviews were audio-recorded, transcribed, and reviewed for accuracy.

Interview transcripts were analyzed using a directed content analysis approach (18). The research team developed preliminary codes both a priori (informed from the literature and interview guide) and by reviewing a subset of transcripts. To ensure the codes were grounded in the data, codes were systematically developed and defined until a final codebook was established. Transcripts were uploaded into NVivo software, v. 12 (19). Thirty-five percent of the transcripts were double-coded to ensure coding accuracy, and intercoder reliability was confirmed utilizing the κ coefficient (κ = 0.98). Coding discrepancies were identified through NVivo and resolved at team meetings. Summaries were developed for each code and examined by the research team. Demographic data were summarized using descriptive statistics.

A total of 133 potential participants were screened and approached, and 20 completed interviews. The mean age of participants was 54 years, 70% of the sample identified as female, and 65% were Black. Additional demographic information can be found in Table 1.

All participants described ways in which their clinicians affected their experiences of shame and guilt related to diabetes management. Results are presented in three primary categories: feelings and behaviors consistent with guilt, feelings and behaviors consistent with shame, and the role of clinicians in affecting patients’ experiences of guilt and shame.

Participants exhibited feelings of self-blame consistent with guilt by specifically referring to their behaviors, rather than their identity or personality, when talking about self-blame. For example, one participant said, “I’m not a failure. I would never call myself that. That’s not encouraging myself. But I can be lazy,” and when referring to her own behaviors, she said she would think to herself, “You know you can change this.” Another participant stated:

One participant discussed the importance of focusing on what it looks like to “go from here” when she feels discouraged, saying:

Participants discussed how feelings of guilt gave them the motivation to better manage their diabetes. One participant explicitly explained how feelings of guilt and disappointment in herself were exactly what she needed to get her on a healthier path. Another participant said feelings of guilt helped her “stop thinking of binge eating as an acceptable way . . . of dealing with pain” and led her to make better lifestyle decisions. Another participant described how guilt led to her being realistic with goal-setting by recognizing that she would not manage her diabetes overnight and instead celebrating incremental changes. Another participant explained that she focused on her potential to do better when she did not meet her diabetes goals, rather than seeing herself as a failure, saying:

Participants described how feelings of guilt facilitated honesty when discussing diabetes management setbacks. One participant described feeling remorse and regret during her doctor visit when her blood glucose was above her goal. However, she said her belief that she could do better in the future made it “very easy to talk with her [doctor]” about her struggles with blood glucose control. Another participant said that when his regimen was not working, “I tend not to blame myself” but examine it honestly to figure out “what exactly did I do that was wrong.” When asked about his conversations with his doctor about his treatment regimen, another patient said “[Honesty] is the only thing that’s gonna help better me.”

Participants who expressed feelings of guilt were motivated by their impact on others. Most participants referred to their families and children as motivation to make the healthy lifestyle changes necessary for diabetes management. One participant described her desire to be present and healthy for her son, saying, “And I think about what if something happens to me? How would he survive and be okay without my support?” Another participant specifically wanted to be alive to see her grandchild “become a pediatric surgeon,” citing this as motivation to be honest with her doctor about her health behaviors. Another participant found out she had diabetes during pregnancy, and her desire to “bring [her] son into this world healthy” made it easier to implement lifestyle changes. Other participants mentioned the desire to set a good example for their children as the sole reason to manage their diabetes. One participant explained that she finds motivation in the midst of discouragement by focusing on her life roles and values, saying:

Shame was far less commonly expressed by participants. A few participants mentioned having difficulty being honest with their doctor about their lifestyle changes and behaviors. One participant said that “honesty is everything” but that “certain things I just wouldn’t share with my doctor.” Two participants mentioned that it was difficult being honest with their doctors specifically because it required them to be honest with themselves. One participant said, “Because she’s my doctor, she needs to know where my struggles are” but that “it’s still hard for me to relate it . . . . I’m playing a big part in why I still have it, and it’s not better managed.” Another participant said it was “sometimes difficult to be honest with myself by putting it out there” because “it’s never good enough as long as . . . you’re diagnosed with diabetes.”

Outside of the clinician-patient interaction, two participants described shame in the context of interpersonal relationships. One participant said that when she first told her sister she had diabetes, her sister reacted by saying, “This is a good thing” because “now you’ll finally start eating healthy and losing that weight.” She felt shameful and discouraged to tell her family afterward because she felt that her family would blame her. She also expressed feeling stigma because it is “about me being fat, or whatever” and it is “easier to just not be out in the world.” One participant reported that having diabetes made her feel inferior and an outsider because she felt that “people had to alter their lives to accommodate me.”

When describing feelings of shame, three participants used language that focused on their global self, identity, and personality rather than behaviors. One participant expressed deep frustration about her weight and stated that she could not share these feelings with her doctor because “I don’t want her to know that I’m not doing what I’m supposed to do.” When asked about the times she feels unmotivated when she feels self-blame, she said, “It’s all me. It’s all my doing. It’s not nothing nobody else is doing . . . . It’s me, all my fault.” When another participant was asked what made it difficult to change her diet, she said, “It’s me,” and another participant said he found his motivation in not wanting to “become a bad diabetic” by having to take insulin.

Four participants described feelings of worthlessness and powerlessness when not meeting their treatment goals. One participant described her reaction to her doctor telling her she had gained a few pounds as “bad, bad, bad, bad, bad” because it brought her back to her “younger years dealing with weight issues.” Another participant said that when she did not meet her treatment goals, she “feel[s] like a failure,” which makes her feel mad at herself rather than motivated to change. Another participant described the spiral of emotions she felt when facing setbacks, saying:

Participants described ways in which their clinicians helped them combat shame and move through guilt during setbacks in their diabetes management. One participant described a discouraging period when she stopped taking medications, saying, “I couldn’t take sticking myself anymore.” She admitted that it was difficult to tell her doctor about this setback, but that her doctor “just grabbed my hand and just guided me through . . . . She just had a way of talking to me and letting me know that it’s okay, and the diabetes is something that I can get over.” She further described that her doctor would encourage her to move through her experience of guilt by saying, “You don’t gotta give yourself 50 laps here. Let’s start with at least two.”

Similarly, another participant described how her doctor’s emphasis on realistic goal-setting with a growth mindset had been useful when she struggled because of setbacks in her diabetes management, saying:

One participant described a discouraging period in her life when she gained weight and her diabetes management was negatively affected, saying:

When this same patient was asked how her doctor keeps her accountable without inducing shame, she said:

Although most patients said their doctors exhibited compassion to alleviate their distress, some described interactions with their doctors that exacerbated their experiences of shame. One participant reported that she was unlikely to be honest about unmet management goals “because I would be too ashamed and scared. I don’t know. He would reprimand me or something . . . . Because I know I did something wrong. I just don’t want to hear it.” Another participant discussed how the emotional toll of shaming experiences with her doctor left her feeling discouraged about making difficult lifestyle changes. She described experiences related to attempted weight loss and dieting in her childhood that were exacerbated by a lack of personal acknowledgment from her doctors, saying:

This participant also described how a focus on numbers and counting reminded her of her failure rather than providing hope for growth:

In this qualitative study of patients’ experiences of shame and guilt related to type 2 diabetes management, participants more commonly reported feelings of guilt compared with shame. Although participants who expressed guilt discussed disappointment in their unmet treatment goals, they also highlighted opportunities for behavior modification, a stable sense of identity, honesty with their clinicians, and motivation stemming from their loved ones. Those who expressed feelings of shame related to diabetes management discussed being dishonest with their clinicians, disconnecting from others, and feeling depression and discouragement. Importantly, participants described examples of ways their clinicians affect their experiences of shame and guilt related to diabetes management.

As highlighted by this study, although expressions of shame and guilt may sound similar, it is important for clinicians to distinguish between these two related, but distinct, constructs. Patients who expressed feelings of guilt (e.g., “I say, ‘Yeah, you screwed up. Now what are we going to do about this? How can we change this?’”) were able to recognize opportunities for behavior change without experiencing global devaluation, in which they linked their actions to an unchangeable aspect of their identity or personality. In contrast, when patients experienced shame (e.g., “It makes me shut down,” or “I blow them off”), they described moving from a state of strategizing opportunities for behavior change to a state of global devaluation, in which they blamed their personality, experienced hopelessness, chose not to talk about their struggles, disconnected from others, and increased maladaptive behaviors such as binge eating.

These findings suggest that, for patients expressing guilt during encounters, rather than spending time reframing this emotional response, clinicians should instead focus on helping them move through their guilt by encouraging realistic goal-setting and collaborating with them on strategies for behavior modification. In contrast, during patient encounters in which patients express shame (e.g., “It’s all me, it’s all my fault,” or “I feel like a failure”), it is important for clinicians to address the concept of shame itself before moving forward to discuss concrete strategies for behavior change. Clinicians should acknowledge the emotion and frame their response to assert that diabetes does not represent an identity defect, that setbacks are an anticipated and normal part of diabetes management, and that behavior change is a process rather than a singular event. Recognizing and responding to feelings of shame is a crucial initial step toward a productive discussion about behavior modification strategies. Furthermore, as some patients’ experiences of shame are influenced by life experiences and family relationships existing outside of the clinician-patient interaction itself, some patients may benefit from referral to outside resources and support.

This study has limitations to be considered. We recruited patients who visited a single ED at an urban academic medical center. In addition, by using in-depth interviews, we engaged a small sample of patients, thus sacrificing breadth of population size to investigate patient experiences more deeply. Because of this, our findings may not be generalizable across other populations. However, the nuance afforded by this in-depth research style are invaluable to research on clinician-patient interactions and patient experiences. Also, given that interviews were conducted over the telephone, we were unable to detect body language and facial expressions, both of which are important components of communication. This limitation is balanced by the fact that phone interviews can be more convenient for participants, can reduce interviewer bias, and may also serve to increase participants’ degree of comfort disclosing potentially vulnerable experiences compared with in-person interviews.

The interviewer identified herself as calling from the same medical system from which many of the participants were receiving care, so interviews may have been subject to social desirability bias. Fewer participants than anticipated reported having difficulty being honest with their doctors about their diabetes management based on prior survey-based research (20), and one possible explanation for this finding could be that participants chose not to disclose that they were dishonest with their doctors. We aimed to reduce this social desirability bias by using the phrase “tempted to avoid talking to your doctor about certain health behaviors.”

Finally, all the responses in this study were self-reported, and no medical records were obtained to corroborate participants’ claims about the state of their type 2 diabetes management. This study focuses exclusively on the patient perspective, and future research should include matched clinician-patient dyads to capture a more holistic picture of the interaction.

This work adds important perspectives about the role of guilt and shame in individuals’ experiences of living with diabetes and how clinicians can best respond to these emotions to promote patients’ well-being. When responding to guilt, clinicians have the opportunity to help patients move forward by partnering in discussions about goal-setting and incremental change. In contrast, when responding to expressions of shame, clinicians should focus more on the emotion itself to prevent feelings for shame having a continued negative impact on patient outcomes. By incorporating this nuanced approach to addressing shame and guilt, clinicians may be empowered to provide higher-quality and truly patient-centered care to people with diabetes.

This study was funded by the Princeton University Office of the Dean of the College Senior Thesis Research Funding Program.

No potential conflicts of interest relevant to this article were reported.

E.S., E.M.A., and K.L.R. conceived the study design. E.S. conducted data collection. E.S. and V.J.S. analyzed the data with oversight from M.K.R. E.S., V.J.S., M.K.R., and A.B. drafted the initial version of the manuscript. E.M.A. and K.L.R. reviewed and edited the manuscript. K.L.R. is the guarantor of this work and, as such, had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

This article contains supplementary material online at https://doi.org/10.2337/figshare.17100530.