The Rookie:
Tad Barnes
32, Brooklyn, NY
Diagnosed 2002

Q: “How can I keep fatigue from affecting my job?

I used to have limitless energy. I worked two full-time jobs, went to grad school—and it wasn’t a problem. But after I was diagnosed in 2002, I noticed a substantial drop in energy. I wasn’t sleeping much at first, but now the anxiety of being newly positive has passed, and it’s still a struggle to work late. At five o’clock, I become irritable, lose my focus and can’t deal with people any longer—I feel tapped out. If I want to go out at night, I need a nap. I used to sleep four to six hours each night, but now I need eight or 10, and it’s harder to wakeup in the morning. My doctors told me that this is normal, and I feel like I have to accept this condition. But I’m still young and don’t like feeling so old.

As an administrative consultant, I advise nonprofit organizations on efficiency. Because I often visit many offices, I worry that I won’t have the energy to handle every job and I’ll be overwhelmed. I haven’t been fired over it yet, but one employer asked if I’m OK. So I preemptively turn down new work opportunities. I don’t tell employers that I’m exhausted, let alone that I’m positive and exhausted. For me, health excuses are not safe in a professional situation—especially when you’re a consultant and facing HIV stigma.

Since becoming HIV positive, I’ve started caring for my body. I do anything I can to increase my energy without overdosing on caffeine. I’m scared of going on meds because I don’t know how much more of an energy drain I can take and still feel competitive and successful. How can I manage this without falling short?

The Veteran:
Joe Norton
43, New York City
Diagnosed 1991

A: “Listen to your body and you’ll learn your limits”

Over the past 14 years, I’ve learned that things pass if you learn to work with your body instead of fighting it. I’ve had periods where my fatigue lasted for an hour, a week, or a month. It’s very difficult to predict when it will hit, but there’s always a light at the end of the tunnel.

If I have an energy drop, I prioritize what absolutely has to be done and just do that. I also make time to rest during lunch or do little things, like choose to ignore the phone for an hour. I’ve learned to know when I can push myself and when I can’t.

When I seroconverted, I didn’t know how to do this. I was a waiter then. Sometimes I couldn’t carry my trays or needed someone to cover my tables while I sat down in the storeroom. While HIV-related dizziness and confusion were gradual, going on AZT was more like the plug had been pulled altogether. But I learned how to listen to my body telling me if I needed to take a break. It was personal discovery, because my doctors haven’t been able to help my fatigue. Usually, they suggest more sleep, exercise and eating better, but all of those are difficult to do when you just feel like lying on the couch. If your doctor’s no help, sometimes you have to push for the care you need. Don’t accept that this is as good as it can get.

In the three jobs I’ve had since my diagnosis, I’ve had to be careful about disclosing, but the secrecy was stressful. I’ve found that seeking out someone I trust to share how I’m feeling helps. Now that I work for an AIDS organization,I’m vocal about what’s going on and feel comfortable asking for an extension or help.

Mostly, I try to avoid overwhelming myself by not looking too far down the road. The big picture can be daunting—and exhausting. But it’s not as scary to focus on what is directly ahead and take it a step at a time.