Have you ever felt like you’re losing your mind? I sure have. Here’s a recent example: I was stressed out -- desperately trying to meet a writing deadline. I had a mailing envelope, the article and a newly purchased roll of stamps in hand. I was ready to dash off to the post office when poof! -- just like Marky Mark, the stamps vanished. I found them later that evening in the freezer. (I have a vague memory of downing a big glass of ice water in the midst of my mad rush).
What’s my point for people with HIV? You misplace your wallet. Forget your favorite uncle’s name. Or wake up one morning feeling really disoriented and confused. You might fear that you’re developing an AIDS-related brain malady, but don’t worry. Chances are you’ve just short-circuited, as I did with the stamps. You’re just like everyone else, living in tension city trying to cope with the demands of life.
That’s what clinical psychologist Dr. Margaret Chesney has learned from the massive research she has conducted on people with HIV. “The stress of HIV can cause people to think they have neurological disorders, when nine times out of 10, that’s not the case,” says Chesney, co-director of the Center for AIDS Prevention Studies at the University of California in San Francisco (UCSF). “They are exhausted, frustrated and really at their wit’s end. They’re dealing with an unknown future, making decisions about medications, coping with the stigma of AIDS and the anxiety of disclosing their status. Their brains are really taxed, and after a while, the central nervous system says ’enough.’”
Kyle Thompson can relate. A 36-year-old HIV positive Baltimore bookkeeper, Thompson said he screwed up a client’s account big time and freaked out, fearing that he might be developing dementia. In hindsight, he realized he was so concerned about losing his job (and thereby his health insurance) that he had a major panic attack. And it was the anxiety that drove him to distraction, prompting him to make a bookkeeping snafu.
“I was absolutely convinced that my brain cells were being annihilated by the virus,” Thompson says. “I joined an AIDS support group and found out that what was happening to me was normal. That was a big relief. Now I’m working on improving my coping skills.” But it’s also important for people with HIV to monitor changes they might note in their memory, balance, attention span, motor skills or brain function. As the ad campaign for the United Negro College Fund asserts, “a mind is a terrible thing to waste.” And neurological problems can indeed become a part of the AIDS landscape.
“There is often a low grade inflammation of spinal fluid at the acquisition of HIV infection,” says Dr. Bruce Cohen, a neurologist at the Northwestern Memorial Hospital in Chicago. “This can be associated with viral types of meningitis, encephalitis, confusion and delirium. In later stages, patients might develop motor abnormalities, seizures, numbness, tingling, changes in reaction times, progressive episodes of excitability of hypomania. It’s important for the patient to be evaluated by a physician who is experienced with the conditions of the central nervous system. With early and aggressive diagnosis, most of these problems can be treated. They shouldn’t just be dismissed as inevitable conditions of AIDS.”
Dr. Lynn Nielsen-Bohlman of the Department of Psychiatry at UCSF says that “when you have HIV, you’re constantly looking for something and usually something extreme like dementia. But calm, rather than alarm, is the best approach.”
Brain scans, analysis of spinal fluid, and cognitive tests are among the procedures physicians use to evaluate the central nervous system, Cohen says.
But remember, when you feel like you’re going out of your head, chances are that it’s just stress. “We encourage patients to step back and try to identify the real stressors,” Chesney says. “They need to sort out what they have the power to change and what they cannot.”
“One of the most helpful things is if the patient can develop one confidante with whom they can share all their cares and concerns,” she adds. “Also people with HIV need to remember that many of the treatments for the disease have side effects that are exacerbated by stress. With everything that’s going on, it’s easy to work oneself into a tizzy.”
Sounds logical to me. So the next time you start obsessing about brain damage, ease off. Think about the stamps I put in the freezer and chill out.