Among chronic diseases, the human immunodeficiency virus (HIV) poses challenges to those struck with it that others can barely imagine, says Cheryl Gore-Felton, PhD, an associate professor of psychiatry and behavioral sciences at Stanford University School of Medicine. Not only is HIV incurable and life-threatening, she says, it’s one of the few chronic diseases that can make a person feel shunned and in danger of persecution. Patients worry that they could lose their homes, jobs, and the support of their friends and family, often for good reason. “There’s still a huge stigma around it,” she says. Having to brave such adversity in their lives, Gore-Felton says, “you would think that every person with HIV would be depressed,” she says.
But, Gore-Felton says, she’s seen HIV patients cope amazingly well with both the sudden shock of the diagnosis and the long-term demands of the disease. “In group sessions, I’ve heard the same thing over and over: ‘The day I got my diagnosis was the day that I turned my life around.’ I’m impressed by their resilience.” Even if someone is not blessed with innate resilience, she says, with help — perhaps including counseling, antidepressant medications, and a supportive community — patients can find the peace of mind and strength they need to really fight their disease.
Troubling illness, troubled lives
No matter how resilient a person may be, getting diagnosed with HIV is traumatic. Studies have found that people with HIV are at least three times more likely than the general population to be clinically depressed. Often, that depression runs deep. A 2007 study of nearly 3,000 HIV patients from different parts of the country found that nearly one in five patients had considered suicide in the previous week.
For many, the disease is another calamity in a long list of troubles. “We’re dealing with people who have many stresses and traumas in their lives,”says Jane Leserman, PhD, a professor of psychiatry and medicine at the University of North Carolina in Chapel Hill. “Their most pressing problem may be that someone stole their car or they can’t pay the rent. They have bigger problems than HIV.” It would seem that people with HIV may have a higher risk of disability that would keep them poor or vulnerable, but with today’s therapies that doesn’t have to be the case.
In fact, some studies have revealed that people with HIV have also experienced trauma or abuse. One recent survey found that nearly half of all HIV patients — including nearly 70 percent of HIV-positive women — had been sexually assaulted after the age of 15. Another survey found that one-third of HIV-positive women had been physically abused after being diagnosed. Although no one seems to be keeping track of nationwide employment statistics for people with HIV, and that many people with HIV are gainfully employed, it’s clear that some people with HIV struggle to find and keep jobs. Since work provides a sense of accomplishment as well as income, unemployment is doubly stressful. In a 2008 issue of the journal The Counseling Psychologist, an HIV-positive patient described just how difficult it can be to stay in the workforce:
“I’ve done the thing where you’re tested positive and kept working for a couple of years and this and that, and your health started to deteriorate, and you think you’re gonna die. Then you quit and wait to die. A couple of years later, you’re still around, and it’s like, “Okay. What am I gonna do to get back into the world of work again?”
Even with these problems, people with HIV can’t always expect much sympathy from their communities or even their families. A phone survey from the late 1990s found that one out of four people said they would be uncomfortable being around someone with HIV. Half of the respondents said they blamed patients for getting sick. As Gore-Felton explains, the general public has the idea that “you have to do something to get HIV.” Most people still equate HIV with either homosexual sex or IV drug use, two behaviors many still consider shameful and perverse. Such bias opens the door for discrimination and scorn, she says, the exact opposite of the moral support that anyone with a chronic disease needs.
Depression, stress and HIV: A dangerous mix
For some HIV-positive people, mental turmoil isn’t just an unfortunate sidelight to their disease. Recent studies have found that trouble in the mind can worsen the illness and shorten lives. (By the way, depression correlates with bad outcomes for all sorts of diseases, such as heart disease and cancer, so this is not specific to HIV) Women seem to be especially vulnerable to the one-two punch of HIV and mental distress. As reported in the journal AIDS in 2007, HIV-positive women who are frequently depressed have twice the death rate of HIV-positive women who aren’t depressed.
Stress, anxiety, and depression create an ideal environment for HIV to thrive, Leserman says. For reasons that scientists can’t completely explain, mental distress seems to weaken the immune system, the body’s natural defense against HIV. When the immune system isn’t at its strongest, the virus can multiply and continue its attack on the body.
Perhaps just as importantly, mental distress can make it hard for patients to stick with their treatment plan. As Leserman explains, depressed patients often stop taking their medications or going to their doctor. And if they aren’t making full use of modern medicine, they can’t really hope to fight their disease.
Doctors have made great advances in the treatment of HIV. Now it’s time to look at the bigger picture, Leserman says. “A person goes to an HIV physician for CD 4 [infection- fighting blood cell] counts and viral loads, and that’s great,” she says. “But these people have lives, too. Doctors need to find out how they’re doing and what’s going on.” If doctors and patients alike take a mind-and-body approach to HIV, more patients will be able to lead long, fulfilling lives despite their illness, she says.
Counseling is often a good place to start. Whether it’s one-on-one or in groups, cognitive behavioral therapy or similar approaches can help people with HIV face their illness with a more positive mindset, Leserman says. Surprisingly, there’s no real evidence that counseling slows down HIV or prolongs lives, perhaps only because such studies would be difficult to conduct, she says. She believes that good counseling really can help put the brakes on HIV, however. If nothing else, people who overcome depression and anxiety are more likely to take their medications and see their doctors, she says.
Antidepressants can give patients a huge boost, too. Not only can these medications improve mood, they can also help patients get on with their lives. For example, a 2009 study found that American women with HIV were almost 30 percent more likely to be employed if they took antidepressants.
Of course, the trauma that goes along with HIV is too complicated for any one-size-fits-all approach. Gore-Felton says treatment has to be tailored to a patient’s life and personality. A patient who abused drugs for many years might be leery of anything in a pill, antidepressants included. But people with a long history of depression might need both counseling and antidepressants to really pull them through.
No matter who they are or how they feel, people with HIV can help themselves by finding buffers to stress, Gore-Felton says. Exercising regularly, receiving support from friends and family who are willing to give it, finding a doctor who really makes them comfortable — all of these things can help take off some of the sting of living with HIV.
“They have a greater quality of life, better physical health, and they’ll be more likely to take their medications,” she says.
Interview with Jane Leserman, PhD, a professor of psychiatry and medicine at the University of North Carolina in Chapel Hill.
Interview with Cheryl Gore-Fenton, PhD, an associate professor of psychiatry and behavioral sciences at Stanford University School of Medicine.
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