Views From Within and Beyond: Illness Narratives of African-American Men With Type 2 Diabetes

Illness narratives are one method by which we can obtain insight into the perceptions and experiences of individuals living with diabetes. In this study, we used the illness narrative framework proposed by medical anthropologist and psychiatrist Arthur Kleinman.³  Kleinman proposes questions in five broad anthropological categories(Table 1) that allow providers to gain a deeper understanding of patients' views and the social, spiritual,and psychological realities of dealing with an illness.³  Kleinman describes these categories as life history, patient and family explanatory models, symptom symbols, personal and interpersonal significance, and culturally marked disorder.

Life histories are brief synopses of individuals' lives that include their“major continuities and changes in attitude, personality, major life goals and obstacles, and relevant earlier experiences of coping with illness and other serious conditions.”³ A diagnosis of diabetes is a significant life event that causes patients to re-examine their life, behaviors, and future plans and options.

Patient and family explanatory models are informal descriptions of the occurrence of a particular illness. Exploring with patients why they believe they developed diabetes exposes important disconnects between the biomedical understanding of disease etiology and indigenous views of disease causation. Patients may be less likely to follow clinical recommendations if they do not accept clinical explanations of what is occurring in their body.

Symptom symbols are “accepted forms of knowledge about the body, the self, and their relationship to each other and to the more intimate aspects of our worlds.”³ How patients interpret changes in their bodies and whether these changes code(signal) a serious chronic disease or a condition that can be quickly resolved likely has implications for how they use the health care system, how and what medications they take, and their general orientation to preventive health care practices.

Personal and interpersonal significance involves factors external to the individual and how these factors influence individuals' experience of living with an illness. Having diabetes can affect one's employability and job security, sex appeal, and other social relationships. Moreover, changing one's lifestyle in the interest of managing the disease and the impact of diabetes complications on one's ability to meet routine obligations affect spouses,siblings, coworkers, and others, as well as the person with diabetes. The personal and interpersonal consequences of having diabetes can be profound.

A culturally marked disorder is the assignment of an illness as not normal. How common or normal an illness is perceived to be depends on the social context and time period/era. For example, before Project DIRECT, people in this community hid the fact that they had diabetes to avoid being alienated and misrepresented by community members who did not understand the disease or its management.

In some instances, people with diabetes and their clinicians share similar understandings of the anthropological categories above. Divergence in patient and provider views offers an opportunity to explore and gather essential data necessary to facilitate effective diabetes self-management.

This was an exploratory study that used quantitative and qualitative research methods to examine and understand the psychosocial and behavioral perspectives of African-American men with diabetes.

The quantitative aspect of the study consisted of data collected as part of the baseline epidemiological survey for Project DIRECT. The Project DIRECT epidemiological survey was conducted in 1997 according to methods that were previously described in detail.^4,6 In short, 2,310 people aged > 18 years were sampled using a multistage,population-based probability sample from census files in predominantly African-American neighborhoods in Raleigh and Greensboro, N.C. All participants underwent a household interview for assessment of general health status, diabetes-related behaviors, and risk factors. A subsample of 407 people who had previously diagnosed diabetes gave blood for measurements of A1C, LDL cholesterol, and total cholesterol. As a companion to the anthropological study presented here, we examined the prevalence of different levels of A1C, LDL cholesterol, and total cholesterol among 220 men.

The qualitative aspect of the study constituted the collection of data using in-depth semistructured interviews. The questions used in the interview according to each anthropological category (life history, patient and family explanatory models, symptom symbols, personal and interpersonal significance,and culturally marked disorder) are documented in Table 1. These categories provide important information about the cultural context that stage and support preventive health behaviors (e.g., regular physical activity, blood glucose monitoring, and healthy eating).

African-American men from southeast Raleigh, N.C., were invited to participate in this study by Project DIRECT. Using a nonprobability, purposive sampling method, men were identified from rosters of people who have participated in DIRECT interventions or by referrals of Project DIRECT Executive Committee members or health care providers. Eligible participants had to be 35–92 years of age and had to have been diagnosed with diabetes for at least 2 years. Participants were recruited regardless of employment, marital status, or education level.

The social, humanist, behavioral institutional review board at Emory University approved the study protocol, and all participants signed an informed consent form before the interview indicating that they understood the intent of the study and were participating voluntarily. Individual in-depth interviews were held in a private office in the Project DIRECT Community Office and were conducted by the principal investigator (L.C.L.). Each interview session lasted ∼ 1 hour and was audiotaped and later transcribed by a professional transcription service.

The quantitative analysis was conducted using SUDAAN software (Research Triangle Institute, Research Triangle Park, N.C.) to account for the complex sampling scheme. The analysis focused on African-American male adults and clinical biomarkers (A1C, LDL cholesterol, and total cholesterol) associated with diabetes.

The qualitative analysis involved a content analysis of the transcripts by two members of the research team (L.C.L., A.N.-F.). The team members then met to confer and agree on major themes in the transcript. Consistent with usual procedures in reporting ethnographic research, direct quotes from the transcribed interviews of respondents are incorporated in the theoretical analysis and interpretation of findings. Names are replaced with pseudonyms. Findings from this study cannot be generalized to the larger population of African-American men with type 2 diabetes because of the study's geographic location, sample size, and sampling method, and the cultural and social diversity of this population.

The mean age for African-American men in this quantitative analysis was 56.7 years. The mean score for the duration of living with diabetes was 8.5 years. Findings from the quantitative aspect of this study are presented in Figure 1, which shows distributions of A1C, LDL cholesterol, and total cholesterol levels among African-American men in the epidemiological survey. More than one-third had A1C results > 10%, and almost four-fifths had A1C results higher than the American Diabetes Association–recommended level of 7%. In addition, more than one-third had LDL concentrations > 130 mg/dl, and 44% had total cholesterol levels > 200 mg/dl.

Abbreviated life histories are reported in Table 2 for the 16 participants, whose ages ranged from 39 to 71 years and who had been living with diabetes for at least 2 years. The mean age for men in the anthropological study was 54 years, and the mean duration for having diabetes was 10.6 years. Six participants were diagnosed in their 30s, four in their 40s, three in their 50s, two in their 60s, and one in his 20s. Questions posed to the men generated rich and detailed data that cannot be fully discussed in the space allocated for this article. We briefly present findings for each category that capture recurrent themes or perspectives that are not commonly discussed in the diabetes care literature.

The majority of participants in this study identified poor diet(particularly a diet high in refined sugars) as the principal reason they developed diabetes. Some participants mentioned heredity, and others said both a genetic predisposition and poor diet were the reasons they developed diabetes. Donald Owens, for example, believed the diet he was raised on set him up to develop diabetes:

When men reported in their life histories family dietary traditions that they have since determined to be unhealthy along with a strong genetic history of diabetes, it may seem that they assumed a certain inevitability about acquiring the disease themselves. At a minimum, they were not surprised at the diagnosis. They did not mention having beliefs about being able to prevent the onset of diabetes or having taken any actions that might offset their chances of developing the disease. Once diagnosed, and in spite of their own attributions about why they developed diabetes, many men struggled to change established eating habits, even though they knew they should make healthier choices.

A majority of participants experienced symptoms associated with undiagnosed diabetes (e.g., excessive thirst, frequent urination, and unexplained weight loss). Those without symptoms discovered that they had diabetes while seeking health care for some other condition or while undergoing a routine physical examination. It is unclear whether these men had symptoms of diabetes that they may have ignored, or simply did not recognize these symptoms as being related to undiagnosed diabetes. Vincent Washington, for example, was diagnosed at about age 32. In thinking back on symptoms that he could not identify, he recounts the following:

Vincent perceived that he was protected by his youth (i.e., “I was young. I could eat anything.”) because he believed being young precluded the possibility of developing a serious, chronic disease such as type 2 diabetes. He continued to meet his obligations, namely, to work, in spite of the symptoms until he could no longer ignore them. Had he not gone“blind” at work or experienced some other acute event, his diagnosis would have been further delayed because he did not know how to respond to “something making me want to eat, eat, eat.” Desiring large portions and consuming foods high in starch and sugar were not perceived as sufficiently outside social norms to cue that something might be wrong or that medical attention might be warranted.

Initially, accepting the diabetes diagnosis and prescribed management regimens were difficult for many participants. Joe Williams did not want to admit he was “sick” and preferred to attribute some of his symptoms to aging, which is “normal,” versus the intrusion of a disease in his body. He said:

All participants indicated that managing diabetes was their primary responsibility and not that of their wives, siblings, coworkers, or other significant others. Whether they checked their blood glucose levels, took prescribed medications, engaged in physical activity, or modified their diets as suggested, they maintained all rights to decide to do so or not.

The men felt they knew their bodies better than anyone and were unwilling to suffer, particularly the effects of low blood glucose, regardless of what their providers prescribed. They frequently made changes in their regimens based on self-diagnoses and self-judgment. Overall, if participants were not satisfied with how they felt after following the regimen prescribed by clinicians, they would change to an alternative, self-prescribed care plan. These alternative therapies often included herbal remedies and over-the-counter drugs, such as Korean ginseng root, uva ursi, capsicum,chromium picolinate, aspirin, herbal tea, and garlic tablets.

Managing diabetes is stressful for the men and their partners. They reported being distracted by thoughts of disability, loss of independence, and death. They expressed optimism about the future but feared future possibilities (e.g., lower extremity amputations). Marcus Jones described the stress of having diabetes for 25 years as culminating in his“deterioration:”

Changes in ability to perform sexually are also particularly stressful, as described by Joe Williams:

Diabetes exacts an emotional toll on participants in various ways. Some are depressed and dwell too much on diabetes. Some are more cautious in what they do, and fear of the disease adds to difficulties associated with good self-management. Several participants reported benefits to having diabetes. Those who perceived such benefits described it as a “wake-up call”that forced them to pay better attention to how they treated their bodies and took care of themselves. According to Percy Holmes, who had suffered a heart attack and other complications of diabetes:

The high prevalence of diabetes in this African-American community suggests that diabetes is a normative disorder. At the time of the study, participants felt comfortable telling people they had diabetes. Several of the men,however, expressed a different attitude about disclosing their condition when they were first diagnosed. Lloyd Dixon initially felt shame in response to the diagnosis:

Similarly, Percy Holmes did not want people to know he had diabetes and shared:

Themes of masculinity run throughout the comments of participants who did not want others to know they had diabetes. Jason Doe shared that he would not want other men to know he had diabetes:

Among the men who freely shared with people in their social networks that they had diabetes, the reactions were characterized as very supportive and caring. When other people with diabetes were in the room, the disclosure of having diabetes resulted in an exchange of information and strategies about how each managed the disease. Other reactions included surprise at the revelation that the participant had diabetes because he “did not look sick.” For participants who experienced noticeable changes in their physical appearance, people would often “misdiagnose” what this meant. Michael West, for example, lost > 50 lb in the process of managing his diabetes. For much of his adult life, he had been a bodybuilder and preferred to have a “big” body. His self-esteem and sense of sexual attractiveness were compromised as he sought to construct a new(smaller) body image:

If diabetes is a stigmatized condition in the community, people with diabetes may be reluctant to acknowledge having the disease, seek social support, or make needed lifestyle changes if it alters or compromises their social position in significant ways.

The illness experience of diabetes among African-American men in this study is complex and does not easily fit into a medically prudent plan of care. Study participants have characterized having diabetes as inescapable, a form of social inequality, a “private hell,” and a loss of one's identity as proud, robust, sexual, independent, and invincible (i.e.,masculine).

The younger the men were at diagnosis, the more likely they were to ignore having diabetes and to fail to take action to control it. They saw diabetes as robbing them of entitlements of youth, including being carefree and reckless in pursuing their desires. One participant said he did not“respect” diabetes in his youth but now fears for his life and independence. Another thought he could “beat it” by ignoring the diagnosis and going on with his life plans.

As the men experienced the consequences of uncontrolled diabetes, they had to confront the reality that they could no longer safely engage in routine activities that other men their age participated in without paying special attention to the timing of their medications and to protecting themselves from minor injuries, among other things. For example, one man complained that cutting the grass could lead to a significant drop in his blood glucose and possibly cause him to pass out. Another said he could no longer crawl under the house or do work that might lead to an injury from nails or other punctures because of the time it takes to heal. Watching other men play basketball and other contact sports reminded a 39-year-old participant that he could no longer engage in these activities because he was easily fatigued.

This study highlights the need for greater understanding of the intersections among masculinity, men's health, and chronic diseases. That is,additional research is needed to establish stronger theoretical and empirical associations among African-American men, black masculinity, and the prevention and control of type 2 diabetes.

Diabetes is an emotional stressor for men who tend to have few outlets for expressing and reconciling their emotions in a healthy and constructive way. Knowing that they have a disease that can quietly destroy their bodies, and therefore their independence and ultimately their lives, is a source of torment for these men. In spite of it all, they project a positive and empowered public perspective on their ability to successfully manage and overcome the potential devastation of this disease. Yet, we know from a previous epidemiological survey in this population⁴  that glycemic control is poor, and additional intervention strategies are needed.⁴ 

Clinicians and diabetes educators can support African-American men with diabetes by acknowledging that they are aware of and sensitive to the multiple and complex psychosocial and cultural struggles these men must face and negotiate. Specifically, providers are encouraged to 1) discuss with patients questions from Table 1; 2) correct misinformation (e.g., discuss potential problems associated with the interactions of herbs and prescription drugs);and 3) use the answers to questions in Table 1 to make referrals to needed specialty and social services. Findings from this study also argue for peer-educator interventions or support groups where men can share diabetes management strategies and social support beyond clinical encounters.