“The people who are my support,” said Alan Madison, “also upset me most. My partner, when I came home from work early, gave that look of, ‘Oh God, he’s sick, he’s probably dying.’ ” Their caregivers’ worry about them occasionally seems to be a request for reassurance, as though they want the sick person to say, “No, I’m not sick at all. Nothing to worry about.” When people are tired and not feeling well and a little worried themselves, reassuring others is trying. Steven’s caregiver is his cousin: “My cousin gets too doting. She gives me her entire schedule and wants to know mine. But I can’t feel accountable to her—we’re both full grown—in spite of her good intentions.” People with HIV infection are extremely aware that they are affecting the lives of their caregivers. They worry that they are causing trouble and suffering, and they feel responsible for that. Perhaps they also occasionally feel some guilt for inflicting trouble on their caregivers. As a result, people with HIV infection protect their caregivers. Sometimes they keep worrisome information to themselves, or they minimize symptoms and pains. They say they don’t want to make the caregivers’ burdens any heavier. They worry that the caregivers will burn out and be unable to help them in times of urgent need. They also worry that no one is caring for the caregivers: “My cousin hasn’t had an easy life,” says Steven. “She lost her father, and now she’s losing me. She’s having a hard time and somebody should be watching out for her.” People with HIV infection are sometimes bothered by reassuring caregivers because they want not to be reminded of sickness, but to concentrate on getting well. Too often, what the caregiver expresses as sympathy sounds to the receiver like pity. The sick person sometimes hears the caregiver saying, “It must be awful to be you.” “That kind of sympathy,” says Steven, “makes me very uneasy.”
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