HIV:The Storm: Grief

HIV

The Storm

Chapter 7: Grief

Sarah came in the following week and as she started to talk, tears appeared. "I have been like this all week, ever since I called Becca's doctor. I just can't stop crying." The doctor had been very compassionate, meeting first with Sarah, then administering a blood test to Rebecca. "He was just so kind." Sarah sobbed. "He kept saying the important thing was that I take good care of myself. That HIV doesn't mean a death sentence, that there is a lot of new medicines now. But now I have to wait for Rebecca's results."

She continued, "And I went to the clinic that specializes in HIV, and it was really hard. I sat in the waiting room and figured everyone was staring at me, that they knew why I was there. Then I realized that is why they were there too. And all kinds of people, men of course, but also women. And the saddest thing were the teenagers. They really have no life. They probably can't ever have kids or anything."

Sarah is wrong about the ability to have children when one is HIV positive, but she is right about the growing group of adolescents and young adults with HIV.
Any clinician working with adolescents needs to be familiar with the special issues of teenagers and HIV. Please go to Insite's section on Adolescents and Youth :
"One in every four Americans newly infected with HIV is under the age of 22, and
young people from communities of color, gay youth, and homeless and runaway
youth are at particularly high risk. Internationally, more than seven million
people between the ages of 15 and 24 have been infected with HIV. Yet
controversy still surrounds prevention efforts for young people and youth have
traditionally been underrepresented in HIV therapeutic research."

Sarah continued, "They were nice at the clinic. They asked me about depression, told me about the type of medicine that would help, and asked me if I wanted to join a group of people that had HIV. And they had lots of groups to choose from; newly diagnosed, women of color, young adults, all women's groups, men's groups, gay men's groups. They even have one group in Spanish for women who all got HIV from their husbands. It is so sad, but all these groups made me feel less alone."

"And they said to not delay in contacting the HIV counselor, to get help in telling Sam, Joe, Alan and Stan. They were kind of stern about me not yet telling, even though I haven't had sex since I was diagnosed. They said I had to tell or they would. So I called, and the counselor is anonymously notifying my old boyfriends, and Sam and I have an appointment next week. I just told Sam it was for couple's therapy, and he's meeting me after work and we'll go in one car. Actually, maybe we should go in two cars as I am not sure he'll want to ride back with me. And there is no sign on the building, so he won't know what it is about 'til we get there."

"At the clinic I had to fill out this huge questionnaire, of all the stuff I had done. The only "high risk" stuff I have done was unprotected sex. It still seems so unfair that I have this stupid thing. And I guess now that I am taking action, the fear of death is really big. I think all my shock and being overwhelmed, and wondering how to tell, I was just pushing away two really big things. One is where did I get HIV, and the other is death....."(here Sarah's voice got very soft; she sounded like a very little child) "I am so afraid of dying."

Sarah was ready to talk about her greatest fear: death. While HIV is not an immediate death sentence, it is to be expected that she will look at death and feel its presence more acutely. I have had friends and clients with HIV and AIDS who believed that these diagnoses were in fact a "life" sentence", not a death sentence. Alan articulated it very well when he said, "When you live all the time with 'death on your left shoulder', like Don Juan used to say, every moment is much more meaningful. Once I got over the terror of death, I live each day more fully. Each sunrise is somehow more amazing, knowing the ones I see are limited. In fact, that is true of everyone, but not everyone realizes it." Douglas, HIV+, told me "It is a paradox...I am actually healthier now with HIV than I ever was before. I don't do drugs, or smoke or drink anymore. I see a nutritionist and I get regular exercise and try to get enough sleep every night. It is so strange in a way, to have to get so sick in order to get well."

Sarah spoke of fearing death and of the great unknown. She was very upset that she would die when Rebecca was young. "I always imagined I would have other children. Now I am having to imagine Rebecca with no mother, and it breaks my heart."

Sarah was not ready to do it at this point, but over the next few months actively did investigate what kind of death she wanted. She was able to fill out an "advance medical directive" that specified the amount of care she wanted if there was no hope of prolonging her life. She also made out a "living will" and gave copies to her physician. For more information on this, go to the End of Life Issues section of Getting Started: Basic Skills for Effective Social Work with People with HIV and AIDS by Michael Shernoff, ACSW.

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