Uncertainty and Optimism
An Excerpt From: The Guide to Living With HIV Infection
March 15, 2007
Everyone with HIV infection faces uncertainty about the future whether they've been sick and didn't improve until the triple therapy was introduced, or whether they've been well on the triple therapy all along. For those who were sick, the drugs work wonders physically: people feel well and energetic. "I look good," said Dean. "My muscle tone is back, it's great to look in the mirror and not cry. That's a real wonderful thing. But there's a whole new game to play here and it's not all that easy." Dean's test results are good; his CD4 counts have been climbing and the virus in his blood -- his viral load -- is at undetectable levels. But he worries about the next round of tests: "I've had a year now of undetectable virus. As long as I can keep it that low. But it's like a time bomb -- you're always waiting for something to happen."
Reasons for Uncertainty
Everyone taking the new drugs feels this disconcerting mixture of uncertainty and hope. Both feelings are accurate reflections of the reality: at the present, the drugs restore people to health; for the future, the drugs could hold HIV in check forever or they could lose their effectiveness. This kind of fundamental uncertainty about sickness and health is not like anxiety, which is an unrealistic response or a response to something unreal. This uncertainty is entirely realistic. HIV infection, in the virulence of the virus and effectiveness of the medical response, has been a remarkable disease, and we are at a remarkable point in its history. The only certainty is, the situation is infinitely better than it once was.
The uncertainty is all the more nagging because many people with HIV infection know exactly what they're up against. "A year ago I was preparing my funeral," Alan said. "I had pancreatitis, couldn't take drugs, was grey, my skin was hanging in folds. My CD4 count was 180 and viral load was 650,000. Now my CD4 is 1,115 and I'm undetectable. I'm 12 years out, alive and kicking and working full time. But in a way, it's easier to resign yourself to dying than to living."
Rebecca had nearly the same experience: "My counts started going up and my doctor was bouncing out of his skin. I said, 'Forget it. I mean, great, I'm going to live a long life. But what am I going to do with it?' Though I feel like an ungrateful patient. I say to myself, 'It could be worse.' But you know, it really might get worse.'"
Adding to the uncertainty is the scrupulousness with which people have to take the new drugs. "I recently missed a dose," said Rebecca. "One day I was busy and the dish was full as if I hadn't taken a dose. I'll take blood work in a couple weeks. My doctor said, 'Did you miss a whole day?' I didn't, only the morning dose. He said, 'I really don't think you'll have to worry.' But after the test, I'll know how exacting I have to be."
For Helen Parks, the drugs aren't working well; her viral load is down but not undetectable. "My biggest issue is," she said, "will I be spared? My doctor says he doesn't know, he doesn't have a crystal ball. If my viral load were undetectable, if the pills were actually working as they were supposed to according to the newspapers, I'd be feeling better."
People manage uncertainty partly by accepting it and partly by investing, cautiously, in the future. People who have been extremely sick and have faced the possibilities others only fear, are particularly aware, not only of the uncertainty but also of the investment. Alan, who said that living might be harder than dying, added, "My partner and I just bought a house with a 30-year mortgage."
They do what could be called "bracketing": suspending consideration of sickness, living in the present, planning for the future. "It's possible to separate yourself from having AIDS now," says Steven. "I'm not thinking about it as much." They remain scrupulous about their drug regimens and their doctor appointments. And like Edward and Alan, they make plans, pursue friendships, fall in love. They think about what to do next. "I also want to start a college course in theater," said Alan. "I was always interested and never did anything about it. Also watercolor lessons. And piano lessons again -- I used to play." Rebecca would like to have children: "I hope to, when this is all over. I want an end to this. I'm looking forward to my future." They work hard at being ready for the positive alternative, being ready if the drugs keep HIV down forever, being ready to return to life's normal uncertainties. "I live my life like everything's normal," said Steven, "like I'm going to do everything I planned to do. I bury myself in work. It helps."
Some people have to decide whether to work. Their decisions depend on their individual circumstances. "For now, I'm ok financially," said Dean, "but what am I going to do? Start working? Give up disability? I had friends who sold their life insurance and now they have to start over. My family says, 'You're healthy, why don't you go back to work? Why don't you?' I think when my doctor says, 'It's a cure, there's no HIV left,' then I'll go off disability."
Rebecca, who is also on disability, volunteers at several jobs; she's thinking about going off disability and seeing if one of her jobs will hire her full-time. Alan had friends who stopped putting money into retirement funds and who passed up promotions. Alan himself qualified for disability at one point, but when the new drugs gave him more energy, he went back to his banking job. "AIDS is not your whole life now," he said. "It's there and you're worried about it. But it's not everything." Alan decided he'd take the risk of going off disability, even though he worried about what would happen if he got sick again. "I guess I'd rather die with my boots on," he said. "I mean, how disabled would I let myself be?"
This article was provided by Johns Hopkins University Press. It is a part of the publication The Guide to Living With HIV Infection.