32, Brooklyn, NY
Q: “How can I keep fatigue from affecting my job?
Iused to have limitless energy. I worked two full-time jobs, went tograd 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 atfirst, but now the anxiety of being newly positive has passed, and it’sstill 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 sixhours 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 feellike I have to accept this condition. But I’m still young and don’tlike feeling so old.
As an administrative consultant, I advisenonprofit organizations on efficiency. Because I often visit manyoffices, I worry that I won’t have the energy to handle every job andI’ll be overwhelmed. I haven’t been fired over it yet, but one employerasked if I’m OK. So I preemptively turn down new work opportunities. Idon’t tell employers that I’m exhausted, let alone that I’m positiveand exhausted. For me, health excuses are not safe in a professionalsituation—especially when you’re a consultant and facing HIV stigma.
Sincebecoming HIV positive, I’ve started caring for my body. I do anything Ican to increase my energy without overdosing on caffeine. I’m scared ofgoing on meds because I don’t know how much more of an energy drain Ican take and still feel competitive and successful. How can I managethis without falling short?
43, New York City
A: “Listen to your body and you’ll learn your limits”
Overthe past 14 years, I’ve learned that things pass if you learn to workwith your body instead of fighting it. I’ve had periods where myfatigue lasted for an hour, a week, or a month. It’s very difficult topredict when it will hit, but there’s always a light at the end of thetunnel.
If I have an energy drop, I prioritize what absolutelyhas to be done and just do that. I also make time to rest during lunchor do little things, like choose to ignore the phone for an hour. I’velearned to know when I can push myself and when I can’t.
WhenI 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 mytables while I sat down in the storeroom. While HIV-related dizzinessand confusion were gradual, going on AZT was more like the plug hadbeen pulled altogether. But I learned how to listen to my body tellingme if I needed to take a break. It was personal discovery, because mydoctors haven’t been able to help my fatigue. Usually, they suggestmore sleep, exercise and eating better, but all of those are difficultto do when you just feel like lying on the couch. If your doctor’s nohelp, sometimes you have to push for the care you need. Don’t acceptthat this is as good as it can get.
In the three jobs I’ve hadsince my diagnosis, I’ve had to be careful about disclosing, but thesecrecy was stressful. I’ve found that seeking out someone I trust toshare 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 anextension 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.
Mentors - November 2005
HIVer rookie Tad Barnes needed help managing workplace energy drain, so POZ paired him with 14-year veteran Joe Norton to swap stories and strategies