Dispossession and Perceptions of Self in Late Stage Hiv Infection

Citation:

Teresa Pavia (1993) ,"Dispossession and Perceptions of Self in Late Stage Hiv Infection", in NA - Advances in Consumer Research Volume 20, eds. Leigh McAlister and Michael L. Rothschild, Provo, UT : Association for Consumer Research, Pages: 425-428.

Advances in Consumer Research Volume 20, 1993      Pages 425-428

DISPOSSESSION AND PERCEPTIONS OF SELF IN LATE STAGE HIV INFECTION

Teresa Pavia, University of Utah

This research explores the relationship between perceptions of self and the dispossession experiences of people with HIV (human immunodeficiency virus) infection. Depth interviews were conducted with 10 individuals in the late stages of HIV infection. Informants described the impact that this disease on their ownership of material goods and on their daily lives. The themes that emerged from these interview suggest that losses associated with the ability to do things, such as job loss or social ostracization, more strongly influence self perception than the loss of any material goods.

An individual's relationship to his or her possessions, where possessions are broadly defined to include one's body, attitudes, and personal relationships, as well as material goods, is closely tied to the individual's perception of self (Belk 1988). It follows that dispossession C the loss of ownership of a possessionBmay challenge one's self perception or may be associated with a change in self perception. This notion has received substantial empirical support (e.g., Andreasen 1984, Belk 1988, Young 1990). Serious, life threatening illness may be viewed as a complex array of dispossessional events since it represents the loss of one's health, the potential loss of one's job, material goods, social network, lifestyle, and ultimately the loss of one's life. For the terminally ill, a chain of involuntary dispossessions begins with their diagnosis (e.g., a loss of their status as "healthy"). Then, their diagnosis may stimulate a chain of voluntary dispossessions (e.g., quitting an unrewarding job, or dispossessing belongings).

The focus of this work is on the relationship between perceptions of self and the dispossession experiences of people infected with the human immunodeficiency virus (HIV). HIV reduces the body's ability to fight off infections and leads, in its final stage, to Acquired Immune Deficiency Syndrome (AIDS), a diagnosis that most regard as terminal. One would expect HIV infection to profoundly challenge a person's sense of self; this work aims to understand changes in self perception through an exploration of the dispossessional experiences of infected persons.

HIV infected persons were selected for this study for a variety of reasons. First, the number of people infected with HIV in the U.S. is estimated at between one and one and a half million (CDC 1990). This group, while large and growing, has received limited attention from consumer researchers. Second, most HIV infected persons are relatively young and are facing significant dispossession events in contrast to other consumers of the same age who are acquiring heavily. Third, because many HIV infected persons are not involved in traditional, legally recognized relationships, dispossession decisions that may be straightforward for other terminally ill young people (e.g., leave it all to your spouse) may not be available. Fourth, the time between HIV infection and death is uncertain, making dispossession decisions difficult. Fifth, beyond their own physical condition, many of these individuals face negative reactions to the their diagnosis from co-workers, friends and family. This may force premature endings to relationships, increase uncertainty and reduce the number of potential beneficiaries for their belongings.

HIV INFECTION

The U.S. Public Health Service estimates that between 1 and 1.5 million Americans are infected with the human immunodeficiency virus (HIV) (CDC 1990). Individuals infected with HIV will be afflicted by a variety of illnesses as their immune systems become progressively weakened. The course of HIV infection can be roughly divided into four stages: (1) the weeks or months immediately following infection in which the individual may have flu-like symptoms; (2) an asymptomatic period which may last for years; (3) a period of time in which the individual may develop an increasing variety of problems such as swollen lymph glands, night sweats, weight loss, herpes zoster or oral candidiasis; and finally (4) the stage in which the individual contracts one of the diseases that define AIDS, such as Kaposi's sarcoma (Lifson 1988). This final stage is often referred to as "full blown AIDS." While the rate of progression varies greatly from person to person, the median time from infection until the onset of AIDS is 10 years; the median survival after developing AIDS is about 2 years (Lifson 1988).

One of the most notable aspects of HIV infection is that it progressively assaults the individual, wearing down his or her immune system, but the progress of the disease is not predictable. The types of diseases one may develop are very different and the time from infection until a serious, debilitating illness is not predictable. Furthermore, current medical therapies are evolving, and "anxiety over when and how they will die has become a major component of living with AIDS, especially as medical therapies become more effective" (Wadland and Gleeson 1991).

Fiske and Taylor (1984) demonstrated that stress associated with one's knowledge that something bad is going to happen is increased when the individual anticipates the negative event but does not know when it is likely to occur. This phenomenon is apparent in many individuals infected with HIV, as Chuang et al. (1989) notes:

Although the endpoint of AIDS may force an individual to deal with such issues as death, dying and the resolution of unfinished business, earlier stages may introduce equally - if not more - threatening stressors, such as uncertainties about the progression of the illness, fears of pain and suffering, social isolation and rejection and more general fears of the unknown.

METHODOLOGY

To explore dispossession in late stage HIV disease, depth interviews were conducted with 10 individuals in stages three and four of HIV infection during the Fall of 1991. All ten informants were volunteers at, or beneficiaries of, a food bank operated by a statewide AIDS organization in a western state. This state has an incidence of HIV infection close to the median rate for the U.S. (CDC 1991). Most interviews lasted 45 minutes to an hour and were conducted at the AIDS organization on days that the food bank distributed food. The interviews were tape recorded and transcribed. Informants received a $10 honorarium for their participation.

The informants represented a mix of backgrounds: some had previously held well-paying, steady jobs (e.g., interior decorator, nurse, secretary); others had previously worked in low paying, episodic jobs (e.g., construction worker, waiter); and some had only worked in underground jobs (e.g., drug dealer). Three women and seven men were interviewed. Six were homosexual or bisexual, three were IV drug users and one informant was infected through heterosexual contact. To preserve confidentiality, informants were identified only by age and gender. Consequently, all the names used in the discussion below are fictitious, and any similarity with actual persons living or dead with the same name is coincidental.

Unstructured, in-depth interviews were selected as the preferred methodology for this research because they allowed a detailed exploration of dispossession among HIV positive individuals (Glaser and Strauss 1967, Miles and Huberman 1984). Interviews were open ended discussions stimulated by the question "Has you attitude toward possessions changed since your diagnosis of HIV infection, and if so how?" The informants were allowed great leeway in taking the interview in various directions and most exercised this option extensively. The ideas discussed below were identified by exploring the ten transcripts for relevant themes that arose frequently and/or consistently.

DISPOSSESSION AND PERCEPTIONS OF SELF

The most fundamental loss facing someone who has just been informed of a terminal illness is the loss of life itself. Several informants recalled this moment; their comments reflect the impact that knowledge of this upcoming involuntary loss had:

Angela [Female, 41]: All my life I've been trying to kill myself, ever since I can remember. And then one day they told me I was going to die and it was like, "I don't want to die, I want to live."

William [Male, 44]: I started dying that day on the phone [when I found out my diagnosis]. I don't mean it to sound that way, I'm very much alive, but that day I found out I was going to die, I started playing [and working less].

As time passed and as informants watched their health progressively and uncontrollably worsen, some implied that they started to hope they will die sooner rather than later. This desire was still presented as an involuntary loss. None of the informants expressed immediate suicidal ideation, although several expressed their intention to commit suicide when they became severely ill.

Ivan [Male, 25] I am prepared to leave [die] at any moment ... I have been told that there is going to be a cure for AIDS, and I don't want it. I am already prepared [for death], and I am ready. There's too much damage done to this body, I would not want to make it live any longer than it has to.

Samantha [Female,33]: Sometimes I wish I would go sooner because I am tired of this lingering. I'm tired of taking all the pills I have to take, I'm tired of going to the doctor every two weeks, I'm tired of getting stuck and jabbed and poked and prodded like a piece of beef ...

Closely related to a loss of life is a loss of health and an associated loss of energy. This type of loss affects the informant's day to day plans and their ability to engage in activities that had previously been an important part of their lives.

William [Male, 44]: You don't feel well enough to create ... You have days like now when you feel fabulous, where you go out and do what you want to do. But, these are the days that kill me because tomorrow I'll pay for it C I'll be burned ... Now what I have to do is really pace myself.

The challenge of coping with HIV is exacerbated by cyclical ups and downs experienced as patients fluctuated between periods of severe illness and periods of relative good health. These problems notwithstanding, most informants felt that they have at least some control over their health (see also Gould 1990). As Zack [Male, 32] said, "I am torn between [death] and living. I have a belief that a cure is going to happen so I am going to do the best [I can] to take care of myself in the meantime so I have the opportunity to live."

For many informants, especially those in the gay community, watching their friends get sick and die has made them acutely aware of the process of losing their own health:

Arnold [Male, 28]: My friends were all dead. First, it was John who died, and he died right after I found out about me. Then it was the guy who gave it to me who died. Now, I'm hearing about it, you know, people are dying all around me. Then I woke up one day and I was feeling kind of depressed over something normal in my life C not AIDS C and I couldn't find anybody to talk to. They were all dead.

Likewise, many informants indicate that their friends and family have become worried about losing them. This usually has intensified the informants' own concerns about their health:

Arnold [Male, 28]: [My mother is like] "What am I going to do without you? My son is dying." My mother thinks that she is the one who is going through all the hardship because I am dying; because I have this disease; because she is going through all this hardship, and she doesn't pay mind to what I am going through. I am the one who is dealing with this and she doesn't even recognize it. I am just one of her possessions.

While losses of life and health are set in the future, upon diagnosis, the patient is frequently subject to an immediate loss of control over the information concerning his or her health status. Almost all of the informants voiced anger when others broadcasted the news of their infection and anger and/or irritation over the friends and family that rejected them after finding out they were infected. Several of the informants described feelings of contamination of self and personhood, typically instigated by the negative reactions of others to their illness:

Ivan [Male, 25]: I moved home for just a little while and [my father] just flipped out. He got really irate over [me] using the toothpaste.

Jean [Female, 26]: ... A lot of my friends, when they found out I was sick and started to be in hospitals and started not to do well, left.

Samantha [Female, 33]: ... so I lost my job, I had to move, and my friends abandoned me .. I locked myself away for several months. I moved so no one would know me. It took me over a year before I could face anybody ... Then I came back and started a new life with different friends ... I did not tell anybody. I still kept it a secret because everyone I told turned their back. So I just learned to keep my mouth shut.

In fact, although Samantha's family lived in another state, they began to receive death threats when the knowledge of her infection became widespread in their town. To relieve this source of tension, they decided to have her obituary printed in the local newspaper before she died. According to Samantha [Female, 33], "They finally printed my obituary in 1987 saying that I had died of AIDS at St. Mary's Hospital ... It was easier for the family to do that than to be scared." Given her experiences of rejection due to HIV infection, Samantha understood her family's behavior and held no grudge against them for this action.

The presence of a stigmatizing illness may also "contaminate" the individual's possessions making dispossession more difficult. Jean has no children but she was concerned that the options for placement of her dog may be limited because of contamination. She described manifestation of the problem in which neighborhood children were forbidden to play with her dog because Jean was infected.

On the other hand, a stigmatizing illness and its "contamination" factor may facilitate some dispossessions such as loss of home, loss of friends and family, or job loss. Everyone that had held a steady job talked about that loss with sadness:

Arnold [Male, 28]: I was moving up the secretarial ladder very quickly and then I found out that I couldn't even work. My whole attitude has changed. It was like, I don't personally feel this way, but maybe subconsciously I may [say] "Why bother?" And since then I haven't been able to hold down a job because I'm too tired to work. It's starting to affect my physical self and things have changed a lot. I'm now poor, I mean completely poor. I live on disability and all of those young childhood dreams have just disappeared ... My drive came from my pride in what I was doing and I just lost it all.

Jean [Female, 26]: That was my idea of who I was. So to have to find inside who I was, was really difficult. I had to introduce myself as "... this is what I do." and then all of the sudden it was, "Well, I stay at home. I am an ex-nurse."

Informants began a series of involuntary losses as their financial resources declined. No one liked having less money, although some freely admitted squandering what little money they did have. Toby [Male, 28] received a lump sum Social Security payment of $10,000 and spent it all on drugs, alcohol and luxury items. Although he expressed regret for his actions he explained his reasoning at the time by saying, "It's kind of like, this is the end of my time so why shouldn't I enjoy this last bulk and flash out on it." And Arnold [Male, 28] who heretofore had an excellent credit record recounts, "I did not pay may rent, I just didn't do it ... I can only afford to live, exist, or afford to have fun. Well, I am dying, so I am going to have fun."

Rather than indiscriminately spending their remaining assets, other informants were more purposefully dispossessing in order to qualify for disability payments. Although these dispossessions were somewhat voluntary, they reflected a more encompassing need to conform to government standards in order to qualify for Social Security or Aid to Families with Dependent Children. Informants discussed either spending down their assets to qualify for government aid or shifting the title of their assets to someone else. The two items that the individuals specifically discussed retitling were homes and cars. Zack [Male, 32]: "I took the house out of my name.... I have to secure myself for opening up the only means I will have for taking care of me...the state ... Financially, you have to play the game." When asked if her retitled car was still hers, Jean said "My car is mine [because] I'm the only one who drives it." However, from a larger perspective Jean says, "it makes me feel like I'm not a person, because I can't have anything [and still qualify for Social Security]."

Although in the above quote Jean expressed a close link between material goods and a sense of self, most informants described a belief that material goods were less important to them now than relationships, experiences and their independence.

Jean [Female, 26] Things aren't as important now as they were. I don't care about the car or the house.

Kingston [Male, 28] What the heck, you can't take it with you.

Arnold [Male, 28] I told my parents and my sisters, and everybody in my life right now, "Don't get me anything for Christmas because I don't want anything; I don't need anything."

Ivan [Male, 25] I had an entire house worth of goods and I just left it all ... I just left [my roommates] everything and started over.

Angela [Female, 41] The house was the first thing to go and everything in the house, and some of the stuff that was really good, got put in the dumpster. I threw it all away.

While the informants placed less emphasis on material goods, many retained a subset of material goods which continued to be very important. Included in this set were pets, family photographs, family heirlooms, special collections of artwork, insurance policies, and Dungeon and Dragon gaming supplies. Informants were concerned about finding appropriate beneficiaries for these possessions.

Reflecting a changed perspective on the importance of their various material goods relative to each other and relative to relationships, experiences and independence, most informants cited attempts to improve relations with friends and family:

Zack [Male, 32] I have grasped [HIV] as an opportunity and life looks different now. My family is really important to me now, whereas I used to take it for granted ... I think it has brought us closer. I think that anytime you see a family member that is this young in life and who has this kind of a diagnosis, it is pretty devastating at first, and I know that [my family] was devastated. Through all of that my dad has come to accept my sexuality. He is trying to bring our relationship closer than it ever was. In his own awkward way, he is trying to do that...I have put a lot into perspective... I am more or less living day to day. It takes practice and I don't do it well yet, but I am working on it and [I am] better than I was.

Ivan [Male, 25]: I have made amends with all my friends and anybody I have ever argued with.

Kingston [Male, 28]: You want to see people, you want to have a clean slate so to speak.

Samantha [Female, 33]: My husband and I were going through a custody battle at the time this happened. I called him to work one day and I said, "We must talk. I think it's best that you do keep the children." He was real shocked.

Angela [Female, 41] Now I do all these homemaking things with the kids, we make cookies and we clean and it's more of a family life than we have ever had.

DISCUSSION

These informants associated the greatest loss of self with the loss of jobs, energy and motivation rather than with the loss of material goods. Notions that "we are what we own" (Belk 1988) rest on an implicit assumption that we are able to acquire what we own. Someone who identifies closely with an art collection does not say, "I am an art collection," instead he or she says, "I am an art collector," which implies that "I have the means to acquire art" (e.g., money, appropriate knowledge, the right connections, etc.). This person may lose the art collection, and suffer a loss of self, but still retain the means to collect (e.g., a theft of the collection); or the person may lose the collection as well as the means to collect, and suffer an extraordinary deep loss of self. This deep loss of self is the type of loss experienced by the informants and may describe why the loss of their material goods was described as relatively less important than their other losses.

The informants were also inclined to describe greater distress associated with a loss of control over what they did, rather than a loss of control over the material goods that they owned. For example, in dispossessing to qualify for government assistance, the dispossession of material goods was described as a visible sign of the loss of control over personal actions. Similarly, a loss of control over personal health information was devastating not because privacy was lost, but because the loss generally resulted in limitations on the individual's actions and ability to socialize. Finally, one of the problems which frustrated every one of the informants was the loss of energy associated with the infection and the diminution of their ability to do the things that were integral to their perception of self.

Although the informants described a variety of losses, most retained a few material goods which they valued highly. Further, some felt that they were happier now than they had been before and that their lives were more centered:

Zack [Male, 32]: If it is God's way that they find a cure, if that happens, I think I'll be better off for it. This has changed my life significantly and I hope I can hang on and grasp the good things that I've got, because I don't know if I would have ever learned those things otherwise.

Angela [Female, 41]: It's really strange, but I don't think I've ever been this together in my life.

While some aspects of dispossession and changes in self perception may be common among a range of terminally ill people, the informants suggest that HIV infection casts a unique light on the process. Dispossession of items that have been in close physical contact with the infected person may be more difficult because of fears of contamination. In contrast, possessions without physical contact, such as jobs, may be dispossessed more easily due to contamination. Reestablishing or mending family ties may be complicated by lifestyles associated with HIV infection, such as a long history of drug use or an admission of a sexual orientation unacceptable to the family. And, unlike other diseases, it is also likely that an infected person will know many others that have contracted and died from the same disease, leading to losses of friendship and support.

With regard to the permanent nature of the infection, long symptom free periods from other terminal illnesses may signal a remission or even a possible cure; long symptom free phases in an HIV patient are generally viewed as periods between illness with the understanding that symptoms will return, probably in a more unpleasant form. One may argue that it is relatively easy for the person who finds out about his or her infection to relinquish material goods that were intimately linked with a previous vision of self because HIV infection changes one's self perception so much. An alternative explanation for willingly relinquishing a substantial fraction of one's material goods is that the knowledge that one's life may end prematurely stimulates a belief that material goods are not as important as some other aspects of life. Either of these lines of reasoning may partially explain why many of the informants left everything and moved to another location when learning of their infection. As discussed above, these decisions were driven in part by the reactions of friends, family and coworkers to the infection, but it is notable that none of the informants described these losses with deep regret.

In summary, while some of the dispossession decisions and changes in self perception described here may be found in other terminally ill individuals, HIV infection provides a singular set of features that influence the process. The disease challenges self perception in a very basic way and this challenge is reflected in the dispossession events described by the informants. Many acts of dispossession were seen as symbolic of an increasing inability to behave in a manner consistent with the informant's pre-infected self perception. All informants had reduced their number of material goods since becoming informed of their infection. None liked their reduced financial resources, but few spoke of their material losses with deep regret. Deep regret and sadness were reserved for losses in the control of, and ability to, engage in basic activities which were central to their self perception. The loss of one's job, home, health, or relationships were particularly pai

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