"Having a job is an important part of my self-esteem. For many people, working is a connection to the larger society. It also gives me something to do and lets me forget about the HIV, or at least not keep it center stage all the time,"stated Todd, a 28-year-old HIV-positive gay, white male.
Rick, a Latino with AIDS, told me how important it was for him to leave work. The stress he faced made him ill. He said "I didn't know if my sickness was brought on by work or not, but I really don't need that kind of negativity in my life anyway. I stopped working because I felt it was the best way to take care of myself. If I had a less stressful job, would I have made the same decision? I don't know. That doesn't mean collecting entitlements and benefits is easy. I've got my case manager to help me, but it gets scary. I depend on the Division of AIDS Services, and it's not always dependable."
These kinds of questions may be similar to ones you have about being HIV-positive and working. A career is the foundation for economic security for most people. Private investments, private insurance or disability plans provide an economic security blanket to many people. Todd talked about how difficult it was for him to continue working when he got sick, but he continued to work because the economic security he received was very important to him. "I knew that if I got really sick, I'd have to quit for a while or even leave the work force. I choose to work now even when I don't feel well, because it makes me feel good to have an income and be doing something."
"I miss the accountability, or the sense of connection to my income, that working provided" said John, a HIV-positive man who worked as a laborer. "I worked and I got paid, but now I have to wait for Social Security. I get the checks, but there's little change in my income. I used to get a good job once in a while, and that would give me some extra money. Now I always get the same amount of money, and it's hard to make it last."
Some HIV-positive individuals leave their career to work for AIDS service organizations. One individual I talked to did this in order to help others adjust to their new lifestyle. He felt it was important to have a job with a full schedule that would involve him with other people, but it had to be something in which he believed. He worried that he would become isolated without work duties that involved him with others. He also enjoys the structure provided by working. Initially, he began volunteering, but missed the responsibility and commitment working provided. Five years ago, he was hired by an AIDS service organization and found that it met his needs and desires.
However, another individual followed a similar path and found that it was not as rewarding as his previous career. He felt ill-prepared to deal with some of the social problems experienced by the agency's clientele. He also did not feel that working for an AIDS service organization helped him deal with his own feelings about being HIV-positive. He had hoped to find a way to help him better understand how he felt about his HIV diagnosis, but instead he spent most of his time helping others focus on their problems.
Stress caused by fear of sickness, anxiety and anger (as well as illness) can turn even the most supportive work atmosphere into a place of dread. Todd related that "Even when I was well, sometimes I felt worse off about working, because I worried it was a waste. But when I wasn't working, I missed working, because I don't know how to relax. Either way I'm going to be stressed out by being HIV-positive."
Todd believes it's important for people to seek professional help to deal with stress -- HIV-related or not. "Friends of mine were convinced that my problems were deeply rooted in some shame or anger about being HIV-positive. Really, I just need a therapist to talk to."
One of the professionals I interviewed was terrified that her HIV status might be disclosed. She worked in a highly competitive office, and was afraid people would find out she was HIV-positive and begin to treat her differently. She feared the stigma of HIV, and didn't want to fight it. For her, the stress of disclosure was more difficult than coping with the illness. She had a very supportive family, but feared disclosure, because she did not want to deal with the way it would be used against her. She described her work environment as "combative" and said employees used any personal information they could against each other.
Ms. Marla Hassner, an attorney with Gay Men's Health Crisis Legal Services Department (in New York City), reminded me during an interview that there is no uniform method for people who are HIV-positive to deal with issues concerning work or preparation for a medical disability leave. If you are considering leaving the workforce early, she recommended that you seek advice from organizations like GMHC's Legal Services, in order to make informed decisions.
It is important to know your company's policies about sick leave, absenteeism, short-term disability and long-term disability, according to Ms. Hassner. These policies should be detailed in the employee handbook. Information about sick leave and disability options should be in the summary plan description of the insurance benefits offered by your employer. She emphasized the importance of being informed about how to protect your employee benefits. GMHC offers a monthly seminar titled "Your Rights & Responsibilities as an Employee with HIV," every first Tuesday of the month at 129 West 20th Street, Room 2C, from 6:30 to 8:30 pm.
Some of the questions I posed to people about working were tied directly to how they felt about their HIV-positive status. I asked if they thought about how long they might consider working, and most replied, "As long as I remain healthy." Work continues to provide many people with a constructive way to deal with living with HIV. It is also often an important part of one's identity and lifestyle.
Ben Geboe, C.S.W. works at the recently opened Housing Works Adult Day Treatment Center for People With AIDS and HIV. He is a clinical supervisor.