Original Article| Volume 40, ISSUE 3, P353-369, September 01, 2010

# Sources of Emotional Distress Associated with Diarrhea Among Late Middle-Age and Older HIV-Infected Adults

Open AccessPublished:June 25, 2010

## Abstract

### Context

Although the experience of physical symptoms can adversely influence emotional well-being, the specific emotional reactions experienced in response to specific symptoms are not well understood.

### Objectives

To examine the emotional impact of diarrhea among HIV+ late middle-age and older adults (i.e., age 50 years and older).

### Methods

In-depth interviews were conducted with 100 participants, of whom 29 had experienced diarrhea and spoke about the emotional impact it had had on them.

### Results

Three principal themes emerged: 1) I don't control the diarrhea, the diarrhea controls me; 2) I feel ashamed, dirty, and tainted; and 3) I fear what the diarrhea is doing to me and what it means. Their inability to control when and where their diarrhea would occur was a great source of emotional distress for participants. Almost all feared the possibility of fecal incontinence while out in public and the humiliation it would bring. To avoid this, many greatly restricted their time outside the home or where they would go to ensure access to a restroom. Others felt shame and perpetually “dirty” even when not dealing with a bout of diarrhea. Many also worried about the effect the diarrhea would have on their health and whether it signaled progression to end-stage disease.

### Conclusion

The data strongly support the need to aggressively manage diarrhea in HIV-infected adults, as the social and emotional consequences can be profound. When it cannot be effectively controlled, physicians and social service agencies should address the isolation by providing home-based opportunities for social support and interaction.

## Introduction

When people experience a bodily sensation, sign, or symptom that they recognize as a deviation from their usual state, they try to understand its cause. The causal attributions they make, the meanings they assign to the symptom (e.g., progression of disease, medication ineffectiveness), and/or the limitations the symptoms place on their daily lives can all be sources of psychological distress or diminish their perceived quality of life.
• Bogart L.M.
• Catz S.L.
• Kelly J.A.
• et al.
Psychosocial issues in the era of new AIDS treatments from the perspective of persons living with HIV.
• Bray B.D.
• Penman I.D.
• Ford M.J.
Symptom interpretation and quality of life in patients with irritable bowel syndrome.
• Rose L.
• Pugh L.C.
• Lears K.
• Gordon D.L.
The fatigue experience: persons with HIV infection.
For instance, a symptom that is interpreted as a possible sign of serious disease in a well person, or of disease progression in an already ill individual, can obviously arouse powerful emotions such as dread, anxiety, and sadness. Symptoms can also raise anxiety by undermining one's sense of control over one's health and heighten one's feelings of personal vulnerability.
• Easterling D.V.
• Leventhal H.
Contribution of concrete cognition to emotion: neutral symptoms as elicitors of worry about cancer.
The psychological distress associated with symptoms may be amplified when the cause of a symptom is unclear, because under these circumstances the nature of the threat is poorly defined, making it difficult to appraise the symptom's significance and mount an appropriate remedial response.
• Mishel M.H.
The measurement of uncertainty in illness.
• Pinder R.
What to expect: information and the management of uncertainty in Parkinson's disease.
• Shalit B.
Structural ambiguity and limits to coping.
Lazarus
• Lazarus R.S.
Psychological stress and the coping process.
has written, “ambiguity concerning the significance of a stimulus situation will usually intensify the threat because it limits the individual's sense of control and increases the sense of hopelessness over the danger” (p. 117).
Ambiguity regarding the cause of a symptom is a common and distressing problem among late middle-age and older HIV-infected adults.
• Siegel K.
• Dean L.
• Schrimshaw E.W.
Symptom ambiguity among late middle age and older adults with HIV.
This is because they are more likely than younger individuals to have independent comorbid conditions (e.g., diabetes, arthritis, heart disease).
• Shah S.S.
• McGowan J.P.
• Smith C.
• Blum S.
• Klein R.S.
Comorbid conditions, treatment, and health maintenance in older persons with Human Immunodeficiency Virus infection in New York City.
• Ship J.A.
• Wolff A.
• Selik R.M.
Epidemiology of acquired immune deficiency syndrome in persons aged 50 years or older.
These conditions, along with the diverse physical and cognitive changes associated with normal aging, often represent plausible explanations for a range of symptoms such as fatigue, poor concentration, and stiffness.
• Siegel K.
• Dean L.
• Schrimshaw E.W.
Symptom ambiguity among late middle age and older adults with HIV.

### HIV and Symptom Distress

Individuals with HIV often are symptomatic throughout the disease trajectory regardless of CD4 counts.
• Willard S.
• Holzemer W.L.
• Wantland D.J.
• et al.
Does ‘asymptomatic’ mean without symptoms for those living with HIV infection.
Even in the era of highly active antiretroviral therapy (HAART), symptoms remain a prevalent problem.
• Newshan G.
• Bennett J.
• Holman S.
Pain and other symptoms in ambulatory HIV patients in the age of highly active antiretroviral therapy.
Significantly, physical symptomatology has been one of the most consistently identified correlates of psychological distress, depression, and/or quality of life in adults with HIV/AIDS.
• Bogart L.M.
• Catz S.L.
• Kelly J.A.
• et al.
Psychosocial issues in the era of new AIDS treatments from the perspective of persons living with HIV.
• Belkin G.S.
• Fleishman J.A.
• Stein M.D.
• Piette J.
• Mor V.
Physical symptoms and depressive symptoms among individuals with HIV infection.
• Buseh A.G.
• Kelber S.T.
• Stevens P.E.
• Park C.G.
Relationship of symptoms, perceived health, and stigma with quality of life among urban HIV-infected African American men.
• Coleman C.L.
• Holzemer W.L.
Spirituality, psychological well-being, and HIV symptoms for African Americans living with HIV disease.
• Heckman T.G.
• Kochman A.
• Sikkema K.J.
• Kalichman S.C.
Depressive symptomatology, daily stressors, and ways of coping among middle-age and older adults living with HIV disease.
• Hudson A.
• Kirksey K.
• Holzemer W.
The influence of symptoms on quality of life among HIV-infected women.
• Lorenz K.A.
• Cunningham W.E.
• Spritzer K.L.
• Hays R.D.
Changes in symptoms and health-related quality of life in a nationally representative sample of adults in treatment for HIV.
• Sousa K.
• Holzemer W.L.
• Henry S.B.
• Slaughter R.
Dimension of health-related quality of life in persons living with HIV disease.
• Tramarin A.
• Parise N.
• Campostrini S.
• et al.
Association between diarrhea and quality of life in HIV-infected patients receiving highly active antiretroviral therapy.
• Watson A.
• Samore M.H.
• Wanke C.A.
Diarrhea and quality of life in ambulatory HIV-infected patients.
A number of studies of HIV+ men and women have demonstrated a strong association between HIV-related symptoms and high psychological distress. Among 173 HIV+ gay or bisexual men with symptomatic HIV disease (mean age=40 years), the number of self-reported physical symptoms was directly associated with levels of psychological distress.
• Rabkin J.G.
• Ferrando S.J.
• Lin S.H.
• Sewell M.
• McElhiney M.
Psychological effects of HAART: a 2-year study.
This association was independent of CD4 cell count and HIV RNA viral load, suggesting that treatments that improve patients' “clinical status” may not necessarily alleviate psychological distress. In a study of 49 HIV-infected men ranging in age from 27 to 64 years (mean age=43 years), greater physical limitations in daily activities predicted higher levels of depressive symptoms independent of disease stage, physical symptoms, and CD4 cell counts.
• Griffin K.W.
• Rabkin J.G.
• Remien R.H.
• Williams J.B.
Disease severity, physical limitations and depression in HIV-infected men.
Among 113 HIV+ middle-age and older adults (mean age=53.4 years), those with higher levels of depressive symptomatology as measured by the Beck Depression Inventory were more likely to report severe HIV symptomatology that altered their daily functioning.
• Heckman T.G.
• Kochman A.
• Sikkema K.J.
• Kalichman S.C.
Depressive symptomatology, daily stressors, and ways of coping among middle-age and older adults living with HIV disease.
More recently, in a prospective longitudinal study of a nationally representative cohort of individuals in care for HIV infection (n=2267), investigators found “that changes in HRQOL [health-related quality of life] were strongly and consistently associated with changes in symptoms.”
• Lorenz K.A.
• Cunningham W.E.
• Spritzer K.L.
• Hays R.D.
Changes in symptoms and health-related quality of life in a nationally representative sample of adults in treatment for HIV.

### Diarrhea

Only a few investigations have examined the association between specific symptoms and the specific types of emotional responses they evoke or have fully explored the range of potential emotional responses, such as anger, frustration, fear, and embarrassment, that symptoms may elicit. Diarrhea is a common and quite distressing symptom among individuals with HIV/AIDS, even in the HAART era.
• Willard S.
• Holzemer W.L.
• Wantland D.J.
• et al.
Does ‘asymptomatic’ mean without symptoms for those living with HIV infection.
• Buseh A.G.
• Kelber S.T.
• Stevens P.E.
• Park C.G.
Relationship of symptoms, perceived health, and stigma with quality of life among urban HIV-infected African American men.
• Matthews W.C.
• McCutchan J.A.
• Asch S.
• et al.
National estimates of HIV-related symptom prevalence from HIV cost and utilization study.
• Siddiqui U.
• Bini E.
• Chandarana K.
• et al.
Prevalence and impact of diarrhea on health-related quality of life in HIV-infected patients in the era of highly active antiretroviral therapy.
• Vogl D.
• Rosenfeld B.
• Breitbart W.
• et al.
Symptom prevalence, characteristics, and distress in AIDS outpatients.
• Zingmond D.S.
• Kilbourne A.M.
• Justice A.C.
• et al.
Differences in symptom expression in older HIV-positive patients: the veterans aging cohort 3 site study and the HIV cost and service utilization study experience.
Yet, it has received very little attention.
Lorenz et al.
• Lorenz K.A.
• Shapiro M.F.
• Asch S.M.
• Bozzette S.A.
• Hays R.D.
Associations of symptoms and health-related quality of life: findings from a national study of persons with HIV infection.
examined the association between specific symptoms and HRQOL among a nationally representative sample of HIV-infected adults interviewed in 1996 and again between 1997 and 1998. Their investigation indicated that pain in the mouth, lips, or gums; trouble with eyes; pain, numbness, or tingling of hands and feet; and diarrhea or loose or watery stools were associated with significantly poorer perceived quality of life than other symptoms. Another study of AIDS patients (mean age=38.6 years) found that many reported substantial distress related to common symptoms such as lack of energy, feeling drowsy, and diarrhea.
• Vogl D.
• Rosenfeld B.
• Breitbart W.
• et al.
Symptom prevalence, characteristics, and distress in AIDS outpatients.
As with most of the HIV studies examining the association between physical symptoms and psychological distress or quality of life, these studies did not focus on adults aged 50 years and older.
Although most studies have not examined the distress associated with specific symptoms, there have been a few notable exceptions that have examined the emotional distress associated with diarrhea in particular among HIV+ individuals. In a study of 504 AIDS outpatients, 35% reported diarrhea as a symptom they had during the previous week, and one-third of these individuals said it caused “quite a bit” or “very much distress.”
• Vogl D.
• Rosenfeld B.
• Breitbart W.
• et al.
Symptom prevalence, characteristics, and distress in AIDS outpatients.
Snijders et al.
• Snijders F.
• DeBoer J.B.
• Steenbergen B.
• et al.
Impact of diarrhea and fecal incontinence on the daily life of HIV-infected patients.
examined the ways and the extent to which diarrhea influenced daily life. Semistructured interviews were conducted in 1995 (prior to the availability of protease inhibitors) with 59 men and three women with HIV/AIDS who were classified by the severity of their diarrhea. A majority reported that, because of their diarrhea, they experienced restrictions on their social life, with 39% describing these restrictions as moderate or severe. Most (60%) spontaneously reported that they were scared or worried about their diarrhea and that it might indicate the “start of decay” or the “beginning of the end.” They feared incontinence, worsening diarrhea, or resulting weight loss. They reported feeling worried and helpless because of their decreased control over their bowel functions and the potential for incontinence. Some reported feelings of loss of control, both physically and psychologically, because of the diarrhea. Finally in a multicenter, prospective study in Italy, 100 consecutive HIV-infected patients receiving HAART with diarrhea were matched with control cases at the same disease stage, but without diarrhea.
• Tramarin A.
• Parise N.
• Campostrini S.
• et al.
Association between diarrhea and quality of life in HIV-infected patients receiving highly active antiretroviral therapy.
Investigators found that patients with diarrhea experienced a significantly lower quality of life.
Clearly, very little is known about the specific emotional response that symptoms, including diarrhea, evoke in HIV+ infected individuals and what we do know is based almost entirely on younger and early middle-age adults. The present report expands our understanding of this issue by examining the emotional responses of HIV-infected adults aged 50 years or older to the symptom of diarrhea.

## Methods

### Choice of a Qualitative Research Approach

In formulating any study design, we always begin from the position that no research approach is a priori superior to others. It is the problem under investigation and the state of existing knowledge in a field that should dictate the most suitable approach for any study. For several reasons, we have chosen a qualitative research methodology for the proposed study. First, the principal focus of the study from which the data in this paper were drawn was on how individuals assign causes and significance to the various symptoms they experience and on their associated remedial actions. This process is often a dynamic one that evolves over time and has behavioral, cognitive, and affective components. That is, unless a symptom episode is brief and self-limiting, initial appraisals and coping responses may well change over time as one acquires new information, as network members are consulted, or as the symptom's characteristics (e.g., severity, disruptiveness) change. This process, we believe, is best explored and elucidated through qualitative research methods that allow the individual to relate their experiences in context, as they unfolded, and reveal their personal interpretation of events. A quantitative approach would, as Mechanic
• Mechanic D.
Medical sociology: some tensions among theory, method and substance.
has contended, ignore “the processual nature of illness perceptions and response.”
We chose a qualitative approach in this study because it is particularly well suited to discovering the personal meaning that individuals assign to their somatic experiences. This is because qualitative methods can “expose” how infected individuals mentally organize and cognitively structure their experiences. Indeed, Pearlin
• Pearlin L.I.
Structure and meaning in medical sociology.
has characterized social scientists who rely primarily on survey samples and quantitative methods of analysis as “structure seekers;” whereas those who depend primarily on qualitative methods of data collection and analysis, typically applied to smaller samples, he has called “meaning seekers.” The importance of the ascription of meaning to understand stress has been emphasized by Lazarus
• Lazarus R.S.
Psychological stress and the coping process.
who has written, “I am confident that personal meanings are the most important aspect of psychological stress with which the person must cope, and they direct the choice of coping strategies.”
• Lazarus R.S.
Psychological stress and the coping process.

### Sample

The data reported below were gathered as part of a qualitative study that investigated the symptom appraisal process (i.e., the assigning of cause and significance to symptoms) of late middle-age and older HIV-infected adults. Further details can be obtained in earlier reports from this study.
• Siegel K.
• Lekas H.-M.
Causal attributions for fatigue among late middle-aged and older adults with HIV infection.
• Siegel K.
• Lekas H.-M.
Strategies for coping with fatigue among HIV-positive individuals fifty years and older.
A total of 100 adults participated in the study. Of these, 29 reported diarrhea or loose stools as a symptom they had experienced recently and these individuals are the focus of the current report. To be eligible for the study, individuals had to 1) be 50–75 years of age; 2) have experienced three or more common illness- and treatment-related symptoms during the past 30 days (although they did not have to attribute those symptoms to HIV disease or related treatments); and 3) be cognitively competent to provide reliable and meaningful data.

### Emotional Responses to Symptom

The data revealed that participants had strong emotional responses to their diarrhea primarily related to three themes that reflected concerns the symptom raised: 1) their inability to control the symptom, which necessitated that they restrict their activities outside the home; 2) the shame and feeling of being dirty that the diarrhea evoked; and 3) the medical significance they assigned to the symptom and its potential consequences.

#### I Don't Control the Diarrhea, the Diarrhea Controls Me

Participants who felt they were unable to predict and control their diarrhea experienced significant fear and worry associated with the possibility of becoming incontinent in public and being humiliated. This risk was so anxiety provoking that many chose to severely restrict the time they spent away from home. Virtually, all participants with this symptom felt the need to plan carefully where they went to ensure ready access to a bathroom if they felt an attack coming and/or to minimize the likelihood their incontinence would be obvious if they could not get to a restroom in time. Most felt their diarrhea controlled them in that it often dictated what they could and could not do socially or when they could leave the house, and as a result, it greatly impacted their mood.
For example, a 65-year-old White male expressed irritation over his inability to control when or where the diarrhea would occur and how much this impeded his ability to engage in some activities. As he described it, “Your total planning is what if?” That is, participants felt the need to always have a plan regarding what to do if they were out and felt a bout of diarrhea coming on, or if they could not get to a bathroom or home in time to avoid an episode of incontinence. Several mentioned their concern about their diarrhea occurring while trapped in a subway car or station. Some expressed how hard it was when out to gain access to a bathroom, as many businesses, such as restaurants or luncheonettes, restricted use to their customers.
A 63-year-old Black male was distressed about how his diarrhea substantially interfered with his activities. He explained:R: Yeah. Yes, because it, it wasn't goin' the way I wanted it to go. [LAUGHTER] And soon as I get downstairs I'd have to go back upstairs. Or it's like once or twice I've gotten caught on the street. I'd go on the subway.I: Yeah, an accident?R: An accident. I'd get into the subway station and have an accident. I had to go between cars. I had an accident and I had to come right back upstairs and change my clothes because I couldn't hold it no more. So that's why, and that makes it embarrassing for me. But then I just get, I don't go nowhere.
A 51-year-old Hispanic male who said that his diarrhea was not physically painful nevertheless explained the anger he felt because of the restrictions it imposed on his activities. When asked how his diarrhea made him feel, he replied:R: AngryI: Angry, okay. Why do you say angry?R: Because I couldn't get around the way I could, you know, normally. Like a normal person. Would I get to the bathroom on time? Sit on the bathroom stool, you know, like a normal person. … I have to be conscious if I am out on the street. Make sure that there's a restaurant around, somewhere where there's a toilet I could run to. Because otherwise, it hasn't happened, but I would hate, you know, if it did happen. That'll be embarrassing. It's embarrassing you know. I have to be very careful. That's why I'm, you know, choosey about when I am out.
A 62-year-old Hispanic male felt distressed about many aspects of his diarrhea, including his confusion over its cause and the unpredictability of its timing. Like many other participants with this symptom, his concerns about publicly soiling himself caused him to stay at home a great deal. As a result, he felt isolated and frustrated by his situation.I: When did you no, notice that symptom for the first time? When did it come?R: (PAUSE) Well, this…before the three months, it comes, it comes… How do I tell you… the diarrhea comes to you… suddenly. I don't know if it is because of the system that is weak, because of the very same medicines, or what one eats… that also produces wasting, the diarrhea…I: Uh huh.R: And so, and, and you have to be, eh, be in the bathroom, you're afraid to go out… because you can dirty yourself while you are walking, eh, eh… you're compromised, or be on the train and need to go to the bathroom, and so I prevent myself from going out, and… it's frustrating, I feel bad, embarrassed.
A 60-year-old Black male, who also feared being publicly incontinent, explained how the uncertainty he was forced to live with regarding when his diarrhea would occur, left him feeling powerless. He expressed that he felt controlled by his diarrhea and was very upset by how much it limited his freedom to engage in activities away from home.I: How uncomfortable did the diarrhea make you feel physically?R: Mmm, I would say extremely uncomfortable.I: Painful or just overall kind of discomfort?R: Yeah. Like not being in control, you know? I like to get up and go when I want to go somewhere. I don't like to be, you know, how would you say---? Um, controlled by my physical movements and stuff, you know. So I couldn't handle that because, you know, like you don't know when you'll have to use the bathroom when you got that. So you know, I was like upset kind of, you know, bent out of shape about that.I: So it makes you feel kind of constrained as to what you do?R: Yeah, kind of powerless.
A 53-year-old Black female stated that she was “pretty concerned” when her diarrhea began because she “wasn't expecting that.” As it continued, she became increasingly worried because she was not “holding anything” and her “anal spot” was hurting. Like the participants discussed above, she went out of her house very little to avoid a potentially embarrassing situation. Her lack of control over the diarrhea made her feel helpless.I: And besides worried, you know, about your diarrhea how else did this symptom make you feel emotionally?R: Helpless.I: Helpless, OK.R: You know, you can't hold your stuff you feel real helpless, yeah.I: OK. And again, how would you rate the level of helplessness?R: Three [quite a bit].I: Any, any other feeling that you've had, apart from?R: Embarrassed, 'cause I would --I: Embarrassed?R: Yeah, I didn't want to go out because I knew that this was happening… I didn't go out.
A 57-year-old Native American male reported that he was able to go out when the diarrhea was less severe, if he took adequate “precautions” like carrying toilet paper with him. However, when the diarrhea was at its worst, he felt immobilized even within his own apartment. When asked how much the diarrhea interfered with his daily activities when it was at its worst, he replied: “I couldn't go out. I couldn't go out. I couldn't do anything, not even from one room to the other, 'cause I would be manuring myself and becoming liquid.”
A 62-year-old Hispanic male explained how his diarrhea had similarly forced him to remain homebound most of the time:R: Well, this--- How do I tell you? The diarrhea comes to you… suddenly. I don't know if it is because of the system that is weak, because of the very same medicines, or what one eats… that also produces wasting, the diarrhea…I: Uh huh.R: And so you have to be, eh, be in the bathroom, you're afraid to go out… because you can dirty yourself while you are walking, eh, eh… you're compromised, or be on the train and need to go to the bathroom, and so I prevent myself from going out, and… it's frustrating, I feel bad, embarrassed
Later when the interview asked this respondent how long his bouts of diarrhea typically last, he replied:R: It's been about a week, a week and half. Do you understand? And so that's bad … I feel ashamed to use pampers, and so then… you have to wear tight underwear, with something, put some paper, but always uncomfortable! Because one is not going to be dirty and walking one feels bad!I: No, of course.R: Of course, and so it's preferable I don't go out. I stay home. There are many times you have to be there for an hour! Sitting there so as to not return again to, oh the bathroom! I take something to read to just be sitting there! Like a waiting room!
A 53-year-old White male, who had been experiencing diarrhea for about a year, felt embarrassed over his occasional inability to control his diarrhea and the “times when I didn't make it” [inside his apartment to the bathroom], which he seemed reluctant to even reveal to the interviewer. He remarked how diarrhea preoccupied his thoughts whenever he left his apartment:R: Yes. And every time you leave your apartment you're always wondering, oh, what's going to happen next.I: Yeah, yeah.R: And it's very unpleasant to say the least. So it's, it might be silly for people who have not experienced it, but for those who are affected --I: I don't, I don't think it's that silly.R: It's a very dominating factor there.
A 56-year-old Hispanic female, spoke of her fear of becoming incontinent, especially while on the subway train. She explained:R: You know. It's discomfortable because you never know when you're going to get a diarrhea. You never know where you're at. Oh, please, don't let it be on the train. Then you're really in trouble. You know. Try to hold it before you could make it out, and don't make it all the way to your house, is a very, so it's kind of --I: Is a what?R: You know, like, if you're going on the train, and you know you feel the diarrhea, or you've got to, oh, and you've got to hold it in. If you don't hold it in, or it comes out, see, now, lots of times, I get in, don't even make it inside the door. But at least I was close to the house.I: Right.R: I wasn't on the train.

#### I Feel Ashamed, Dirty, and Tainted

Several participants with diarrhea spoke of the self-shame they felt about having to wear a diaper like a baby due to their uncontrollable bowel movements. The diapers that some were forced to wear were a constant reminder of this lack of control and the infantilizing and demeaning nature of their condition. Others, most of whom had experienced incontinence in public, said the diarrhea made them feel “dirty” and “tainted.”
For example, when asked which of the several symptoms he had reported was the most difficult for him to live with, a 60-year-old Black male, first stated that they were all about the same. However, he then quickly differentiated diarrhea from the rest, describing it as the most mentally upsetting because of “accidents.” He explained that, despite having this problem for years, he has not gotten used to it and it remained very stressful for him. Later, he also went on to describe how his diarrhea caused him to constantly feel “dirty” and how it affected him psychologically.I: All right, when you have the diarrhea, how uncomfortable does it make you feel physically?R: Very.I: OK. Why is that? Or how is --R: Because it, it, because it, I, I don't know. I really don't know what you mean, actually. It's psychology, psychology it works against me. That's all. It's not, it's like etiquette. It's like, um, slurping soup. I don't want to be around it. I don't want anybody to do it. Do you know what I mean?I: Mm-hmm, mm-hmm.R: It's just --I: Mm-hmm. And phys-, ah, ah, psychologically I can understand.R: And I, and I always felt unclean. I felt unclean. It didn't matter whether I just got out of the shower or not, I just felt [unclean] --
When asked about his emotional responses to his diarrhea, this man described his depression related to his apparent shame about always feeling dirty and needing to wear a diaper.
Similarly, the 62-year-old Hispanic male discussed earlier, who reported frustration and anger over his ability to control his diarrhea, talked about getting yourself dirty and then “you have to clean yourself like a baby.” These remarks reflected the shame he felt being a grown man who, because of his uncontrollable diarrhea, was transformed into a small, powerless baby who soils himself.
A 55-year-old Hispanic female also described the emotional distress her lack of control over her diarrhea caused her. Like many others, she noted that the train was a particularly stressful place for it to occur. She described difficulty in fulfilling her responsibility of walking her granddaughter to school because she was unable to make it the whole way due to uncontrollable diarrhea. She also related the embarrassment associated with her incontinence.I: OK. OK. So, it's, it comes and goes. It's not an everyday thing?R: Well, I, well, it was, it was just for three weeks. And—it was hard, because you couldn't really do too much. Nothing. Every time I, you know, I was able to go home and change, because I, I could be taking my granddaughter to school and never make it, because I have to run back.I: Oh, no.R: Or, or the stuff would come out of me.I: Oh.R: So, that was, that was uncomfortable, and embarrassing --I: Yeah.R: -- and smelled.
A 56-year-old White female discussed also the discomfort and embarrassment she endured when she has diarrhea while out in public, reporting:R: Because I'll be walking along and it plops out. You know how embarrassing that is? And I got to run and look for a place that got a bathroom. And then it smells. And then I got to run to a store and buy panties, then take all these things off, then take those panties off, wrap them up in paper and throw them away in the garbage. Then get all the toilet paper or Handiwipes, get them wet and get washed. In a public bathroom! Sometimes I try to rush home, but it's a long ride from Manhattan all the way to the Bronx. After I get off the train in the Bronx I got to take a bus 40 blocks. So imagine.I: Yeah, that's a long ride.R: That's right.I: And if you had to rate how uncomfortable it makes you feel physically?R: Extremely.I: Anything else you would like to tell me about having this symptom of diarrhea? Anything that comes to mind related to the diarrhea?R: No. Just embarrassing and uncomfortable.
A White 50-year-old man talked about the embarrassment he felt when others made comments about him when he passed gas or had an attack of diarrhea before he could remove himself from a social setting:I: When you first started experiencing it, when you thought it was a stomach virus or something, how worried or concerned were you about it?R: I was worried about how many pairs of underwears am I going to go through?I: Because you were having accidents?R: Yeah, and I don't like to leave the house unless I'm clean.I: Yeah.R: Especially my underwears, my socks, my T-shirt. Those things have to be clean on me. No matter where I'm going I have to be clean. And also when I'm around people and if I can't get out of that area at the time the embarrassment, I can't take that. Or to be around people that are drinking and you know kidding around but might set me off by saying something that I don't want to hear. Then somebody else starts and the other one starts, I can't take that. I am really concerned about that. First thing I do is if I'm around somebody, usually if I blow wind, like they say, after the second time I blow wind then I say let's be on the safe side if I start to feel like that--. Where's the bathroom at? I go to the bathroom. So this way I'll be on the safe side. And sometimes it's just air. Sometimes it's the runs. So I take more precaution now in what I eat and what I drink.
Later in the interview, he spoke more about how important cleanliness was to him personally and how uncomfortable he felt when he had wet underpants because of his diarrhea:R: Yeah. Oh, that is annoying. To walk around with your pants wet? Oh. I cannot deal with that. That is a no-no. Yeah. I won't work with anything with oil, grease or oil. That's dirtiness. I can't. I'd hate being a mechanic. I said this isn't my type of job. It's very annoying. Very uncomfortable that I have to walk around and smell that bad, and having some people make a smart remark. I'm not one to bite my tongue. I'll try to bite my tongue. I've learned to bite my tongue but not as far as when they make a wisecrack when there's other people around and try to insult, like there's seven or eight people around.

#### I Fear What the Diarrhea Is Doing to Me and What It Means

Similarly, a 58-year-old Hispanic male said he knew his diarrhea was HIV-related and “of course, it was a cause for great concern.” He was worried about the changes it might bring about in his appearance, but also that like other HIV-infected individuals he had known with diarrhea, he would develop wasting syndrome.I: Mm-hm. OK. Um, how worried or concerned were you about the diarrhea and the gastrointestinal problem when you first started to experience it?R: Well, I knew it was, when I knew that I had HIV I knew it was related to that. And of course, it was a cause for great concern.I: What kind of concerns?R: Because in talking to a lot of other clients I knew that, you know, there were a lot of people that were going through the same stuff that I was going through or a lot worse. And I would see people, you know, one of the things that, that bothered me was I didn't want to develop a wasting syndrome you know, and that, that, you know, so that, I would see you know, how that affected other people. Of course, it, you know, I didn't want to look like that.I: Uh-huh. And were you worried that what you were experiencing would lead into wasting syndrome?R: Exactly.
A 59-year-old Black male whose concerns about being incontinent on the train were described above, also expressed worry over having diarrhea as an HIV-infected person, and his fear of continued weight loss and the potential for wasting, a condition that he said people with HIV “hate.”I: How worried or concerned were you about the diarrhea when you first noticed it? You said you cried a little bit because it was kind of overwhelming.R: Yes, it was. Because, you know, with people, to me the people with HIV, I found that out by being in the hospital, when you have diarrhea or anything like that's all your food is leaving your system. And I can't, I'm like six two and a half. I was weighing 235 pounds. Now I went down to 211. And half my clothes don't even fit no more. And I know once you got diarrhea you start wasting. And most of all, you know, I'm scared of losing any more weight. You know, a matter of fact I've got lipodystrophy. You know, my face has got it and I thought that was because I was losing, that was from the medicine. And that's the only thing I'm afraid of, you know, losing weight.I: The wasting and the losing weight.R: Right. That's most of us with HIV, we hate to waste. And that really what happened to me because when I got on the scale about seven days after I lost about a couple of pounds.I: OK, OK. And if you were to rate how worried or concerned you were about the diarrhea would you say you were not at all worried, slightly, moderately, quite a bit or extremely worried?R: Extremely worried.
A 62-year-old male was upset by his own and his health care providers' initially unsuccessful attempts to determine the cause of his diarrhea. Ultimately, it appeared to be a side effect of his anti-viral medication although a rare one, which may account for why it took a long time to clarify. However, before that determination was made, he knew diarrhea was a symptom of HIV disease and because it was occurring in the context of another HIV symptom, weight loss, he feared that he might be experiencing wasting, which he said caused many infected people to die.I: How worried or concerned were you when you first experienced the diarrhea about that symptom itself? Just in relation to the diarrhea, how worried were you about it?R: I was concerned because, you know, one of the things with the virus is what you call wasting syndrome.I: Right.R: And that's the number one killer from all of the things that you can die from it.
Similarly, another 62-year-old Hispanic male, described above as being frustrated by his inability to prevent soiling himself, also shared his “dread that this becomes chronic,” a condition he also believed was potentially fatal. He explained:R: And I dread that this becomes chronic. Because there are many people that have it for a lot longer. That's the dread as well… because there are people that are chronic, they're constantly with diarrhea and so I, and I feel… I give thanks to God that it's time to time, but I'm doing my part, helping myself… yes because eh, eh diarrhea can kill you.
A 56-year-old White female who had been having diarrhea off and on for several months, stated she was depressed by the problem. She anticipated that her diarrhea would lead to dehydration and weight loss that would make her sicker.I: And any other reason [besides having had an accident on the street] why it made you worried when you first had the diarrhea in February?R: No, because then I knew I'm going to start losing weight.I: So how did that make you feel, worried?R: Depressed.I: Depressed?R: Worried.I: And what did you think? You thought OK, I'm going to start losing weight and then?R: I'm going to start getting sick. Because I figured the diarrhea, I'm going to get dehydrated. If I keep eating, whatever, it's just going to keep coming out, I'm going to start losing the weight and the diarrhea, I'm going to start getting sick.I: And you did mention that you felt depressed in addition to being worried.R: Depressed thinking I'm going to get sick now, with all this.
In addition to distress over incontinence, a 51-year-old Black female who had diarrhea off and on for over three years following the initiation of medications for HIV and diabetes, also was worried about how it made her feel weak and tired.I: When you first started really experiencing the diarrhea were you worried or anxious about it?R: Of course. Yes. Because it made me, it drained me. I felt very drained and tired and weak.I: Yeah.R: And I had to drink a lot of water so that kept me running to the bathroom. So it's like when I go, a lot of times I end up trying to make it to the bathroom and getting it on myself and stuff like that. I thought oh, man, I can't live like this, you know? So I had to adjust.
A 55-year-old Hispanic female reported that when her diarrhea began six months earlier, she was initially not worried about it because she thought it was due to HIV medications. However, she also considered that her diarrhea might be due to HIV, especially in the context of also having “sweats,” another symptom she related to HIV. She discussed why if HIV was the cause she would be worried, while if her medication was the cause, she would not. She indicated that if the diarrhea was HIV-related, testing would need to be done to determine the specific cause of the diarrhea.I: Um, so, if it's due to medication, you're saying, it's not that concerning?R: No, because all I do is stop taking the medication, and then go to the next cocktail or that --I: OKR: Right.I: You also had mentioned, um, that you thought it might be the HIV that was causing your diarrhea.R: Mmm, yeah.I: Did that worry you, or?R: That worried me, because then I think, if I can't control the diarrhea, I'm going to have to be hospitalized for them to find out what's wrong with me.I: Mmm.R: What is causing the diarrhea.
Despite his confusion as to the specific cause of his diarrhea, a 59-year-old Hispanic male related his concerns about having diarrhea while being HIV+. He believed that with a compromised immune system, the diarrhea could be due to many things. He related his belief that for someone with HIV, diarrhea has an unknown trajectory, including the potential for rapid weight loss, decreased energy and stamina, and possibly death.I: Before you realized where it came from, what were you thinking was happening?R: Well, that's the whole thing. One never knows what's happening or what's causing the symptoms. So you're dealing with blanks. Blank spaces again.I: Where do you fill in when you have a blank?R: You [terrorize]. You [terrorize] because you don't know what's going on. You've lost control entirely of the situation. And uh, everything is a blank. There's nowhere to turn. Until it either gets worse or you die or whatever. But you have no way of projecting what's wrong. In something like when you start, when you get the symptoms, because it could be a host of, a multitude of things going on.I: What kind of things were you worried about happening when you first started getting sick?R: With GI things the first thing that, you know, at least in my case at the time, it wasn't the worst thing but weight loss. Additional weight loss. Rapid weight loss. Then everything else follows. The loss of energy. Your stamina, this, that, everything becomes like a domino effect. And who knows? You know, you wonder well, is this the end of the line?I: End of the line meaning?R: Meaning, you know, is my life over on this natural earth as we know it?I: Right. Is that what you mean when you talk about feeling that hysteria?R: Yeah. Although, I mean I call it hysteria but, it is hysteria. It seizes your entire attention, turns you right around. If you've been there before and I've been there a number of times. With the KS [Kaposi's sarcoma] I was there, with the two heart operations I was there. So you know, you wonder, you know, again, you have to, you get into death mode.
Later in the interview, he commented again on the death anxiety his diarrhea had evoked:I: What kind of things were you worried about happening when you first started getting sick?R: With GI things the first thing that, you know, at least in my case at the time, it wasn't the worst thing but weight loss. Additional weight loss. Rapid weight loss. Then everything else follows. The loss of energy. Your stamina, this, that, everything becomes like a domino effect. And who knows? You know, you wonder well, is this the end of the line?I: End of the line meaning?R: Meaning, you know, is my life over on this natural earth as we know it?

## Discussion

That physical symptoms are a critical determinant of the psychological well-being of individuals with HIV/AIDS has been well documented as shown above. The data revealed that diarrhea is an extremely distressing symptom for participants who experienced it. This seems to result from the fact that it often not only imposed significant limitations on patients' movements and ability to participate in valued social activities outside their home, but it also was laden with social stigma and strong cultural association of feces with dirtiness, pollution, and being tainted.
Most participants felt they had little control over it and when and where it would occur. This raised the constant fear of being humiliated in public if they experienced fecal incontinence while they were out and unable to get to a bathroom quickly enough to prevent soiling themselves. As the study was conducted in New York City, most travel around by subway and the prospect of being trapped on the train underground, between stops or in stations where there was no public bathroom was an especially daunting prospect.
In Goffman's
• Goffman E.
Stigma: Notes on the management of spoiled identity.
terms, these individuals were discreditable. They had a stigmatizing condition that they sought to conceal, but recognized that this was not always in their power to do. The shame and stigma of having diarrhea was strongly linked to its cultural and symbolic associations with dirtiness, pollution, waste, and its foul repugnant odor. Thus, they lived with the constant specter of their condition being discovered by others who they assumed would then devalue or shun them once they knew their secret. They were also discreditable because having control of one's body is something society expects if someone is to be judged a competent adult. Although infants are permitted to not have such control, adults are expected to. Many spoke of the embarrassment and feelings of being “dirty” they experienced due to their condition and the personal shame associated with having to wear diapers like an infant.
The recognition that they were “discreditable”
• Goffman E.
Stigma: Notes on the management of spoiled identity.
if their inability to control their diarrhea became public knowledge led many to lead a very constricted life that limited their time in public. They spoke of missing support groups, doctor's appointments, work, church, and funerals rather than risk going out and having an “accident.” Others lived a “what if” existence. That is, when out in public or anticipating going out, they had to constantly be thinking what if they felt a bout of diarrhea coming on, or what if they became incontinent and soiled themselves, what they would plan to do. Those who ventured out more used strategies like carrying around clean underwear and clothes when they left in case they did have an accident and had to change while out. Some wore clothing that would make it easier to conceal that they had soiled themselves if an accident did occur. Others wore a diaper or put a cloth or a towel in their underwear to prevent their diarrhea from leaking through and becoming evident on their clothing if they did not have time to get to a bathroom. Some chose to only travel short distances from home or to places where they felt confident a bathroom was readily accessible. Some felt that the diarrhea controlled their lives. Their failed efforts to gain control over it led to feelings of frustration and powerlessness.
As discussed in the literature review, when there is ambiguity about the cause of a symptom, individuals tend to experience more distress because it is hard to evaluate the symptom's significance or take appropriate remedial action. For many, the cause of their diarrhea was unknown and, therefore, it was unclear what to try to do to control it. Some thought it was related to their antiretroviral medications and with their doctor tried to come up with an alternative regimen. When this did not solve the problem, many were very disappointed and started to despair that they would never get control of the situation. Others tried changes in their diet, with very limited success. Those who believed it was associated with their HIV infection or could not rule this possibility out experienced more worry because they believed that it could signal disease progression or even entry into the late stages of the disease. This was especially true when they found themselves losing weight, which some felt might be wasting or cachexia, an involuntary loss of body weight and lean mass, a syndrome most associated with dying patients. Many had seen others die of AIDS and wasting and the loss of control over their bowels was what they had in some cases witnessed. Obviously, this raised the specter of impending deterioration and possibly death, which greatly heightened participants' anxiety.
Even those who did not express that they feared wasting or progression into late stage or advanced disease, worried about the impact their chronic diarrhea was having on their health. A few complained of pain in the area of their anus. Others felt that the loss of weight and body mass would eventually deplete their energy and cause debilitating fatigue, whereas others feared dehydration. In all cases, worries about the consequences of their protracted diarrhea were prominent and distressing.
The data reveal the significant emotional distress diarrhea can cause for older HIV-infected patients. Not only does it make them fearful of public humiliation if they experience fecal incontinence, but in many cases it also leads to their feeling they must live a more constricted life to avoid this possibility. This can have secondary consequences such as heightened feeling of loneliness, social isolation, and a diminished quality of life and depression. Given that HIV-infected older adults already perceive themselves as lacking sufficient social support,
• Emlet C.A.
An examination of the social networks and social isolation in older and younger adults living with HIV/AIDS.
• Schrimshaw E.W.
• Siegel K.
Perceived barriers to social support from family and friends among older adults with HIV/AIDS.
• Shippy R.A.
• Karpiak S.E.
The aging HIV/AIDS population: fragile social networks.
symptoms that potentially exacerbate this social isolation are of particular concern. Clearly, in choosing a treatment regimen for HIV+ patients' physicians should consider the potential impact of side effects, especially of diarrhea, on the patients' social and physical well-being. In addition, physicians must work with patients to aggressively try to manage their diarrhea. Patients should be made aware of not just mainstream possible remedies but also directed to sources that might inform them about dietary, complementary, and alternative medicine options for alleviating the symptom. Physicians also may want to find ways for patients suffering with diarrhea to share information on self-management strategies they have found to have some effectiveness in controlling their symptoms.
Diarrhea appears to have a very distressing impact because of the stigma that are associated with feces and the cultural symbols associated with it, such as dirtiness, pollution, and loss of control over one's body. Therefore, any skills patients with this symptom can be taught to manage it more effectively could yield important emotional gains. When more effective management is not possible, physicians and social service agencies should address the social isolation that often comes along with diarrhea among HIV+ persons and provide additional home-based opportunities for social support. These might include home access to computers for social networking with other patients and “online support groups” for those who fear traveling due to potential incontinence. Physicians also should recognize that diarrhea might be an embarrassing problem for some patients to discuss and may have to inquire about it directly. Patients who may already feel devalued because of their older age (especially when they sense ageism) or because they have a stigmatizing disease may be even more reluctant to bring up this symptom.
Although the study from which the data reported on here were drawn did not include younger adults and so no direct comparisons can be made, the extant literature suggests there may be some important differences between younger and older patients in general. First, because of the many changes associated with normal aging, for example, diminished energy, greater problems with concentration, and functional limitations, older adults may experience greater uncertainty in assigning a causal attribution and, therefore, significance to some common symptoms.
• Leventhal E.A.
• Suls J.
• Leventhal E.A.
Hierarchical analysis of coping: evidence from life-span studies.
This may in many instances account for delay in seeking professional care. Related to this, it is well documented
• Chewning B.
• Sleath B.
Medication decision-making and management: a client centered model.
• Berman R.L.H.
• Iris M.A.
Approaches to self-care in later life.
that older adults have a tendency to make normalizing attributions for many symptoms, especially ones that have a slow onset and ones that are not severe. That is, they will generally, at least initially attribute these types of symptoms to normal aging or transient conditions (e.g., recent stress), and often only when they persist and become more severe will they consider an organic explanation. In contrast, Leventhal et al.
• Leventhal E.A.
• Easterling D.
• Leventhal H.
• Cameron L.
Conservation of energy, uncertainty reduction, and swift utilization of medical care among the elderly: study II.
have contended that older adults are motivated to preserve what they perceive as their reduced psychic and physical resources. Consequently, they adopt a general strategy that includes greater risk aversion and a stronger need to resolve uncertainty to reduce anxiety and distress, for example, by reporting symptoms to a physician sooner than younger adults would. Further, in a study of beliefs about aging and illness among a convenience sample of community residents,
• Lau R.R.
• Hartman K.A.
Common sense representations of common illnesses.
investigators found that across all the age groups surveyed (i.e., 20–34, 35–59, 60+ years) two beliefs about aging and illnesses were common: 1) aging is the cause of a set of serious illnesses; and 2) any illness is more threatening (i.e., more serious, less treatable) when it occurs in later life rather than middle age. Such beliefs might also foster a greater readiness among older adults to take action in response to symptoms they regard as possibly indicative of incipient or underlying disease. However, alternatively it might be argued that the greater threat symptoms might arouse in older adults might contribute to delay or denial. Further, some have contended that because the elderly face fewer high demand situations (e.g., work, parenting), they can often contain and tolerate a higher level of symptoms longer without social pressure to seek professional care and can adopt the sick role, perhaps providing them with greater latitude to practice self-care.
• Alonzo A.A.
• Ford G.G.
Illness behavior in the elderly.
That older adults do treat many of the symptoms they experience through some form of self-care without consulting with a physician or other health care professional is well documented.
• Berman R.L.H.
• Iris M.A.
Approaches to self-care in later life.
• Hickey T.
• Hickey T.
• Akiyama H.
• Rakowski W.
Daily illness characteristics and health care decisions of older people.
Finally, several limitations of this study must be acknowledged. First, the study used a convenience sample of participants who were willing to disclose their HIV+ status and who were physically able to complete the interview. Although we sought to accommodate more infirm individuals by conducting interviews in homes or health care facilities, as needed, it is possible that those who were quite ill felt unable to participate. Or those who experienced the most uncontrollable diarrhea, or just the most anxiety about soiling themselves, may have chosen not to participate because they were unwilling to risk traveling more than a short distance from their home and were not comfortable to have the interviewer come to their home. Nevertheless, despite the potential for some self-selection bias, the present study does provide important data on the significant emotional distress that diarrhea causes these participants and the help they needed to address both the practical and emotional repercussions of diarrhea.

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