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HIV: Therapeutic Strategies for Guilt, Uncertainty, Taking Control
Unpredictability: Although counselors working with persons impacted by HIV/AIDS have been dealing with the unpredictability of this illness and the resulting lack of control that persons in the spectrum feel, new treatments have added another dimension to this theme (Kalichman et al., 1998; Kelly, Otto-Salaj, Sikkema, Pinkerton, & Bloom, 1998; Rabkin & Ferrando, 1997). For example, it is still too early to know just how long these new treatments will continue to fight a virus that often mutates (Carpenter et al., 1997; Fatkenheuer et al., 1997). Further, recent studies have suggested that long-term use of HIV medications can have some very serious and severe consequences (Carpenter et al., 1997). Finally, when and how HIV will resurface as an active virus is still an unknown.
Difficulties in Undertaking Treatment: The new medical treatments can be quite challenging. Frequently, clients are taking medications that can make them very ill, require stringent regimens, and are expensive. Moreover, many clients have been subjected to exhilarating hopes followed by desolation and disappointments. Understandably, some decide to withdraw from medical interventions. They may be going through the process of preparing to die and are thus not willing to go back to a different stage in the process. Clients often report, "I cannot be disappointed one more time." Alternately, they may refer to being tired of being "a guinea pig" or proclaim that "I am ready for it all to end."
Denial as a Coping Method: Some clients use denial as their primary way of coping with the unpre-dictability of the new medical treatments. This can be especially true for people whose viral load is undetectable. It can become seductive to return to the lifestyle they lived prior to HIV infection. "I feel fine, so I must be fine. Thus, I will live as if HIV did not exist in me," which may result in excessive use of alcohol, drugs, or unprotected sex. Denial keeps them "safe" from recognizing some returning symptoms that may indicate the new treatments are not working quite as effectively.
Life/career Planning: Clients benefiting from the new treatments may have corresponding career issues (Brooks & Klosinski, 1999). Now that they are feeling better and have new hope, they need to explore what they will do with their lives. However, these are complex decisions. People on disability may be getting healthier, but have fears about terminating their disability benefits, as they might then lose medical benefits. They may desire to return to work, but at the same time they can't afford to give up government assistance. They may be concerned that if they return to work their health may suffer or they may lose their benefits due to improved health status. "I could make decisions if I had some sense of what was going to happen to me." Questions as to employability and necessity of disclosure of HIV status appear as well. Life planning may mean a change in identity. For some, especially those who are considered long-term survivors, AIDS has become an integral part of their self-concept. These people have spent much of their lives finding ways to treat, manage, and live with this insidious disease. The advent of new treatments and the possibility of a more healthy lifestyle may create a loss of identify related to being sick and having AIDS, as evident from statements such as, "AIDS has been my life for so long; I don't really know what to do without it."
Nonresponsiveness: There are some individuals who do not respond to the new treatments in positive ways. Some are unable to tolerate the side effects. For others, the drugs do not control the replication of the virus (Gilden, 1996). Still others find the new treatment interferes with the effectiveness of other medications (e.g., psychotropic medications or other life-sustaining treatments) (Nemeroff, DeVane, & Pollick, 1996; Shader & Greenblatt, 1996; Van Cleef, Fisher, & Polk, 1997). A deep sense of anger, frustration, and helplessness may result (Kalichman et al. 1998). Nonresponding can be especially difficult when others in their lives (e.g., a partner) are responding positively to the treatments. Where once everyone in the HIV spectrum had a common bond, now there can be a sense of separation in those nonresponding from those who are doing well. Clients may report a sense of personal failure, "Perhaps I was not good enough" (Rabkin & Ferrando, 1997) or guilt,"I am letting my partner and loved ones down by not getting better."
Adherence Issues: Adherence to the new treatments is imperative, or they may become quickly resistant to the medications and perhaps others in the same family (Deeks et al., 1997; Kuritzkes, 1996; Mellors, 1997). Moreover, persons may end up with a medication resistant strain of HIV that potentially can infect others, who also will not be able to benefit from the new treatments (Bangsberg, Tulsky, Hecht, & Moss, 1997; Gwadz et al., 1999). With such severe consequences, it may be difficult to understand why noncompliance may be so pervasive. However, there are some compelling reasons why persons may choose not to adhere to the medication regimes (Aversa & Kimberlin, 1996; Besch, 1995; Mehta, Moore, & Graham, 1997). Potent side effects can be very debilitating; especially difficult to tolerate when, prior to the medications, the client may have been symptom free. Medication interactions can alter the impact of other salient medications (Shader & Greenblatt, 1996; Van Cleef et al., 1997). The strict dietary restrictions and rules make taking the protease inhibitors very arduous. For example, some need to take pills one hour before eating and two hours after. Coupled with severe diarrhea, it can be a regimen too stressful for some. Persons with chemical dependency issues or severe mental illness may be in positions of not being able to manage such complex medication protocols. Additionally, for clients who have adapted a wellness paradigm in terms of treatment (i.e., regular exercise, medication, and substance free), the toxicity of the protease treatment may be quite contradictory to the manner in which they have dealt with this disease. For those whose primary coping mechanism includes denial, taking medications is a constant reminder of being "sick." Additionally, it is difficult to adhere to a medication after witnessing someone's failure with the same medications. Finally, as these medications are so costly (Holtgrave & Pinkerton, 1997), economic concerns may interfere with adherence.
Reflection Exercise #5
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