Providing Empowerment to the Person with AIDS.

I hope to put a face to the dry statistics, so finally making real progress toward accep often encountered regarding acquired imtance of my having AIDS, mune deficiency syndrome (AIDS) by shar ing my experiences as a person with AIDS. _ . , „ „ n ,. . I want to start from my diagnosis with Crystal-Ball Predictions AIDS-related complex (ARC) and proceed There are two statements many physi through my recent diagnosis with AIDS— cians communicate to persons with AIDS a period of more than three years. Also, I that are counterproductive, frustrating, and hope to provide some tools and resources unnecessary: (1) There's nothing we can do; social workers can implement when assisting and (2) You have x months to live. Incredi a person with AIDS. ble frustration accompanies any pronounce ment about there being nothing anyone can . . do. That statement does nothing other than 1 ne Brick Wall foster in the person with AIDS a sense of ut My diagnosis with ARC was lengthy, fruster despair and hopelessness. Moreover, it trating, and expensive. It took several is defeatist and fatalistic, undermining any months, three physicians, and hundreds of reason for the person with AIDS to fight dollars in testing. That was in June 1984.1 back. This kind of thinking adds fuel to the knew what the doctors suspected, and I fire of panic and fear that usually accom thought I was prepared for the diagnosis, panies knowledge of HIV infection. It has no because it took so long. I wasn't. Hearing the place in a constructive approach—helping diagnosis, I ran into a brick wall. I thought the persons with AIDS to cope. I'd be dead by the end of the week. Predictions about how long the person Psychological support at the time of diagwith AIDS has to live is simply a game of nosis (whether of AIDS, ARC, or exposure statistics and fortune-telling. Doesn't it make to human immunodeficiency virus [HIV]) is more sense to help the person with AIDS to crucial to preventing fear and anger from befocus on the possibilities of living with AIDS ing transformed into self-destruction. For the rather than on a negative self-fulfilling person being diagnosed with ARC to beprophecy? Sure, most persons with AIDS come fearful and want to flee from the synmay die within two years of diagnosis. But drome is the most natural reaction I can not all of us do. There is nothing construc think of. AIDS has become closely assotive in setting up the person with AIDS to ciated with horrifyingly negative pictures of believe he or she will be dead within x incapacitation, abandonment, rejection, number of months, no matter how "statis hatred, physical and mental deterioration, tically correct" this prognosis might be. and deformity. When one is faced with these bleak and barren prospects associated with T -, _ AIDS, suicide becomes a viable alternative. Tu ? ^nosis: Providing support at the time of diagnosis, e e®a ves as well as afterward, is tremendously imporFor many persons with AIDS, there was tant. Remember that sometimes it takes one life before diagnosis and another life a while for the news of being HIV infected after diagnosis (life A.D.). For some it's to sink in. a giving in and a giving up; for others it's the My diagnosis of having AIDS was another beginning of a whole new way of thinking brick wall. This time it was a brick wall of and being. I have always believed all situa denial. For two months I coped by believing tions have positive and negative aspects. I everything was fine, no problem. But lateused to tell my clients to look for the positive ly, my very real fears, my sense of loss and in what appeared to be totally negative situa disappointment, and my sadness have aftions. Now I'm having the opportunity to fected me powerfully. And I'm working follow my own advice, through my feelings with a lot of concern For me, life A.D. has had both positive and and support from my therapist, support negative aspects. Of the more negative as groups, friends, and family. I believe I'm pects, those things that stand out the most have been the "them and us" mentality, disconnections, shame and blame, the need to hide, and the potential to focus exclusively on the negative. The "them and us" mentali ty is a way of thinking about AIDS that en courages people to think it's not a problem they need to worry about, because AIDS primarily affects them. Most of us know who "them" are: gay men, drug abusers, hemophiliacs, Haitians, blacks, Hispanics, w men, prostitutes, and some children. Also, the way AIDS is reported, with high risk groups, lends itself to further isolation and disconnection from those of us who are sick. It is as if we are some fringe element "out there," an element unworthy of com passion because of some character flaw or inappropriate behavior. I see many of the potential psychosocial consequences of AIDS as disconnections: dis connections from our past, present, and fu ture; from our loved ones; from ways we have of defining urselves, such as job activities, capabilities, skills, and physical appearance. Finally, AIDS may lead to disconnection from things many of us take for granted, such as a sense of power and control over our lives, h pes, dreams, and aspirations. This further exacerbates the sense of isolation, alienation, and aloneness that persons with AIDS experience. Another negative aspect of AIDS that I have experienced is the shame and blame that accompanies the disease. Like no other illness since the advent of modern medicine, AIDS carries with it a stigma of shame and pointed finger of blame, suggesting those of us who are sick are at fault for being infected. This is a very negative impact of AIDS, yet it is also illogical. Do we blame Legionnaires for Legionnaires' disease; children for mumps, measles, or chicken pox; the elderly for Alzheimer's disease or death; or epileptics for seizures? It makes no sense to blame anyone for AIDS. AIDS is caused by a virus, not by behavior or iden ity. Moreover, sham and blame can lead per sons with AIDS into denial and hiding, which may cause potential avoidance of medical care, involvement in unsafe sexual activity, nd a lack of support from a support system that doesn't know the person is HIV infected. This further isolates the person with AIDS and exacerbates feelings of aloneness and despair, and threatens the health and welfare of the person with AIDS. The stigma of AIDS even leads some physicians deliberately to misdiagnose patients, sometimes putting a different cause of death on a patient's death