Through an ethnographic study done at West Hollywood non-profit Being Alive, acupuncture was found to improve the quality of life of HIV-positive individuals.
Human Immunodeficiency Virus (HIV) is a disease that limits the life span and diminishes the quality of life of the individual affected by it. Certain emotional characteristics, including feelings of liminality, marginalization, loss of self, and anxiety, configure to produce an overwhelming environment of stressors for individuals with HIV . These stressful experiences, over time, can become problematic for health when they are chronic, uncontrollable, unpredictable, and difficult to cope with because of lack of supportive personal, social, and environmental resources . Since HIV is a disease with chronic complications and rapid progression, it can cause a quick deterioration of the quality of life of the infected individual and in turn cause more health problems to their already delicate state . When HIV was introduced into the United States, the expected life-span of an individual was approximately ten years or less depending on when the disease progressed into AIDS (Acquired Immune Deficiency Syndrome) . However, even with new and effective pharmaceuticals, which can maintain disease progression, patients with HIV hold new concerns in terms of the quality of life they are experiencing . Therefore, it is imperative to investigate traditional Chinese medicine (TCM) and Complementary and Alternative Medicine (CAM) practices which can be of benefit to the affected individual and perhaps maintain the disease from progressing.
Many studies performed with TCM and CAM on HIV-positive patients attempt to present quantitative data on the impact of care on the physical health of study participants, yet fail to show any qualitative data on how these practices have influenced participants’ quality of life. A study done at the University of Boston tested acupuncture, a branch of TCM, as a control to test the experimental effect of relaxation responses (soft music) on HIV-positive patients . Although their quantitative results were not impacted, the unexpected patient response on quality of life improvement was astounding . Thus, my curiosity originates from this study in order to investigate the control itself and how the qualitative experience of acupuncture affects the overall quality of life of the HIV-positive individual.
In order to seek an answer to this question, I chose the Being Alive center, a non-profit organization in West Hollywood, California, as the basis of my study. Being Alive supports individuals who are HIV-positive by offering CAM services free of charge. For my study, I recorded and prepared a set of standardized questions for practitioners and patients. Questions were developed in order to investigate practitioners’ perceptions and patients’ experiences of changes in quality of life as a direct result of their involvement with CAM services, especially acupuncture. However, before leaping into these uncharted waters, I realized I needed to further learn how HIV physically and emotionally affects the carrier.
To better understand how HIV affects the lives of its victims, it is necessary to investigate similar emotional characteristics which affect patient well-being, and furthermore, quality of life. Research on the analysis of quality of life assessed of males recruited from an AIDS clinic in urban Northwest Ohio presented them to have feelings of liminality, marginalization, self-loss, and lack of social support . Marginalization and liminality are closely tied because they are common in people living with chronic illnesses . While liminality is defined as being in a transitional state between life and death, being stuck in this type of “limbo”and living with a sometimes-physically incapacitating illness often results in feeling marginalized from society . For a patient with HIV, a chronic disease, certain symptoms include pain, fatigue, and constant physical vulnerability to opportunistic infections that could result in a variety of complex illnesses . Since HIV is a debilitating disease, many patients can no longer work and therefore become dependent on others without being able to reciprocate, thus losing a sense of being a productive member in society and even losing self [1, pg.461]. In this context, the definition of self is in terms of identifying and reassuring one’s past experiences and memories through relationships with family, friends, and lovers—in other words, reassuring identity .
Patients with HIV often struggle with maintaining relationships due to physical debilitation. They are also commonly victimized by negative societal views on HIV, which can make them feel like outcasts in private and in the formation of new relationships. Events such as loss of friends due to HIV, the lack of understanding of the disease progression, and treatment from family and friends can result in the individual feeling isolated . The lack of social support makes it a necessity for these individuals to build a community with members who can relate to the same problems and experiences . A coalescence of feelings of liminality, marginality, and lack of social support all lead to diminished quality of life for the individual living with HIV which in turn has negative effects on health and contributes to disease progression.
Through interviews conducted with patients and acupuncture practitioners at Being Alive, I obtained a more personal perspective on the topic and an in-depth view of what types of emotions and other issues affect quality of life in the HIV community in West Hollywood. Although feelings of liminality, marginalization, and lack of social support were consistent with my findings, other reported emotions were those of depression, grief, feeling of loss, loneliness, and anxiety. The acupuncture practitioners at Being Alive expressed most concern with the common symptom of anxiety among their patients. The following quote was taken from an interview conducted with Joe, an acupuncture intern at Being Alive (all names are pseudonyms):
- “…You see a lot of people who are beginning their journey with the disease and they are full of anxiety, or if they are encountering a new medication, a new symptom, a new opportunistic infection… it will induce anxiety. That loss of control in people triggers it.”
As Joe explains, HIV patients who are recently diagnosed are often-times more anxious because of the unfamiliarity and fear of having this disease. Anxiety in these patients arises from a variety of different reasons such as side effects to medication, the development of new symptoms, and/or debilitating infections, and the lack of close, personal relationships. The “loss of control” which he mentions can be referred to as a loss of self or identity, in which this disease causes the individual to feel not only anxious but also helpless. Other social characteristics of a patient with HIV involve loss of communication with society and in turn result in loss of self. Mary, an acupuncture practitioner at Being Alive reinstates this issue:
- “[Patients with HIV] have the tendency to not be able to interact with people as much and be sort of frail and in that sense, lose the sense of socialization and community.”
Another contribution to the loss of self is the experience of not being recognized as a competent working member in society. Throughout my interview with Mary, she explained how multiple patients who seek support programs like that of Being Alive are often-times people from low-income populations who are on disability because of their unpredictable health statuses. The fact that these patients are linked through Being Alive already indicates that they are attempting to be a part of a community composed of members who understand their situation and are going through the same ordeals. Support groups and programs like that of Being Alive in West Hollywood provide the structure for the development of this type of strong community of HIV-positive individuals.
Being Alive offers CAM services, including that of acupuncture, to help aid members towards a better quality of life. Acupuncture is a branch of traditional Chinese medicine (TCM), which became popularized in America in 1972 . Unlike research modules of Western bio-medicine, TCM holds the belief that the human body is in balance with two opposing yet inseparable forces: Yin (cold) and Yang (heat) . Therefore, the health of an individual is represented by maintaining an internally balanced state of Yin and Yang . Furthermore, imbalances cause blockages in the flow of Qi, referred to as one’s vital energy, as well as in the meridians, the specific pathways of the body . Restoring the flow of Qi is the basis of treatment for acupuncturists because one’s vital energy regulates spiritual emotional, mental, and physical health through the influences of the balance between Yin and Yang [6,7]. Acupuncture, through the usage of thin needles, is then used to stimulate anatomical points on the individual’s body, which release these blockages of Qi along specific meridians. In the practices of acupuncture and other CAM modalities, the mind and the body are seen as one entity through which the behavioral and emotional states of the individual affect their own health.
TCM understands HIV through this lens. In the following quote by Mary, for example, is provided an overall TCM perspective on how HIV affects the body:
- “…the manifestation of HIV…is overall susceptibility to get extreme infections and the Chinese medical term for it is heat toxins in the body, seen as acute inflammatory disease and burns the system out and we say it damages the Yin, the cooling aspect of the body.”
In the case of HIV, the physical effect of the invading virus causes disequilibrium in Yin and Yang. Whether the progression of the disease is caused by emotional characteristics mentioned previously, or whether the physical debilitation of the disease causes these emotions is unclear. Characteristic emotions such as those of anxiety or depression are also considered to cause complete “shutdowns,” as Mary explained. In this example, anxiety is seen as causing heat and disrupting Qi, yet too much of it can cause a shutdown, resulting in the kind of depression in which the emotional system goes cold and turns off. Because this varies between patients, however, a detailed assessment process is conducted in order to assess the diagnostic baseline of the mind and body of each patient. Mary explains:
- “…what we are trying to do is balance the person’s whole system and trying to make it integrated so that whatever the baseline is we can strengthen and tie it together, every person comes in as being different…often-times you’ll see more extreme conditions because of the viral infections…[they] tend to be more life-threatening and complicated which will create more long-term complexities.”
By obtaining a baseline of each individual, disease progression can be observed and therefore maintained. Ideally, simple maintenance through the treatment of acupuncture should improve the health of these patients, but then they would simply be performing the same procedure as bio-medicine, which is to just treat a physical aspect of being. An assessment and overview of the involvement of acupuncture in an HIV patient’s life is therefore needed in order to gauge the effect it has on a patient’s quality of life as well as their health.
After interviewing two members who frequent the acupuncture services at Being Alive, I obtained a better perspective on how CAM has affected their overall quality of life. Both participants interviewed had been diagnosed with HIV and had similarities in terms of the frequency of use of acupuncture, which they claimed to do on a weekly basis. For one participant, Jerry, stress associated with bio-medicine drove him to seek new alternatives:
- “…I wanted to detox from the side effects [of pharmaceuticals] and [the doctors] did a full medical workout with CAT scans and MRI and they couldn’t figure it out and I said, ‘okay, let’s try TCM,’ and I knew Being Alive was doing it.”
Jerry gives an important perspective on what could commonly be routine stressors that patients with HIV have and want to fix. When asked if he noted any improvements after taking acupuncture treatments he responded with the following statement:
- “…It’s slow so I know there’s an accountability on my part to do things too…I don’t know if it’s psychological or not or if I am feeling something physical but I think there is a slight improvement…”
What is more interesting is that even though Jerry believes to have a slight physical improvement in his health, he continues to come back every week to receive more treatments. This adds a new view of quality of life for the individual with HIV, which is not about what physical improvements individuals feel but how satisfied they are within their own health capacity. In summary, Jerry thus reports an overall improvement in the quality of his life since starting acupuncture:
- “I do a lot more, I am able to go back to the gym again, go hiking and I do more domestic housecleaning activities.”
Perhaps for a patient with a debilitating and stressful disease such as HIV, being able to perform what are considered “normal” duties or activities improves their lives by bringing normalcy. However, for others such as Greg, the other participant I interviewed, acupuncture had physical benefits that contributed to his emotional maintenance and stability.
- “…I feel focused, centered, rejuvenated and at peace during acupuncture…” (Greg, personal communication, November 16, 2011)
In my attempts to investigate the TCM view of HIV and the affect of acupuncture on the quality of life of HIV patients, one major theme I noticed was the mind-body connection in both thinking about HIV in TCM terms as well as the way patients experienced their treatments. Emotional characteristics of such as those of liminality, marginalization, loss of self, stress, and anxiety, along with the physical vulnerability to infections, can cause HIV to further progress. Acupuncture is one additive method of maintenance, which can help improve the quality of life for patients with HIV through balancing the forces through an individualized baseline. Through interviews with patients and practitioners, acupuncture shows itself to be an effective method to keep the body’s forces of Yin and Yang at equilibrium. As is believed in TCM, the mind and body are connected, and for patients with HIV, the maintenance or the improvement of quality of life through acupuncture can help prevent disease progression. CAM treatments are supportive rather than curative by nature, which helps an individual with HIV not feel like they are in a limbo between life and death, but rather feeling, and truly being, alive .
by Claudia Briones
NOTE: This article was written originally as a paper for the UCLA upper division anthropology course Perspectives on Complementary/Alternative & Integrative Medicine, taught by Dr. Sonya Pritzker. More information on the course can be found here.
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