Coping with HIV is trying for everyone, and coping with anything 24/7, day in, day out, gets very old very fast. There is only so much public confusion, red tape, government denial and death any one person can deal with in one lifetime. And coming home to deal with your own confusion, red tape, denial and death (not to mention nausea, diarrhea and lipodystrophy) will test the limits of your sanity if you let it all take over your life. The worst part is, while getting involved can be very rewarding, it can also be a thankless job, no matter how devoted you are to helping others or how much good you are doing. That's why there is so much turnover in the AIDS service industry, and why so many HIV-positive people just don't want to get involved anymore.
However, my purpose here is not to dissuade anyone from helping out at an AIDS service organization -- we need everyone we can get to in order fight this disease. Those little cliches mentioned above eventually become positive programming for those who need it, and that extra few minutes discussing the facts with someone who has no HIV experience may very well save his or her life. People with HIV will never get the laws or meds we need unless there are folks willing to go downtown and spend those endless, boring hours in demonstrations, forums and meetings. And there have been countless times when something I have learned through volunteer work has helped me deal with my own health situation.
If you can relate to this article at all (and I'd be willing to bet that the majority of my readers can), I'd like to point out the importance of something that seems to be plain old common sense, but that a lot of us dealing with AIDS have forgotten: Make sure you have something else besides HIV in your life! Too much HIV all the time makes Johnny a dull burnout. Get involved in a group that isn't a support group. Go to a workshop on macramé for once instead of protease inhibitors. Being politically correct doesn't mean you have to go to every single fundraiser in town -- when was the last time you took someone to a movie? And the Internet is a good place to get current AIDS info, but when was the last time you visited a chat room? (Okay, maybe a lot of you are already doing that one .)
I had to make a point of finding things in my life that had absolutely nothing to do with AIDS if I was going to continue being motivated to spend any time on the things that were. Declaring your identity as a person with HIV to loved ones is an important step towards healthy self-awareness, but that doesn't mean you have to mention it to every person you meet. And don't you hate going to a party just to get cornered by that guy who can't stop talking about his meds, or why the AIDS organizations suck? Well, next time you're at a party, make sure you aren't that person, Missy!
Some people who deal with AIDS all the time have to begin choosing to miss events that they would have attended in the past, just to keep their sanity. There are only so many funerals you can attend before it all starts getting to you, and hospital visits aren't much better, especially if you are afraid of looking like that person in bed someday. Hey, sometimes you just can't go. Let that be okay. If the person is really important in your life, you will find a way. But letting your sense of obligation outweigh your mental (or physical) health is unfair to you.
Being a good volunteer, caregiver, AIDS organization employee or patient means being smart enough not to believe that you have to be Superman or Wonder Woman to get things done, although the reverse often seems to be true. Yeah, we all admire those handful of folks who seem to be changing the course of AIDS single-handedly, but their health situations may be a lot different from yours, and you don't really know what's going on inside their heads. God knows what they may be sacrificing. Some tasks carry more recognition than others, but quite often that person at the front desk is making more of a difference in their own quiet way than some of the glory hogs who get all of the attention. You don't have to be chained to a building to help people living with AIDS, you know.
Everyone is different, and is it fair for you to constantly expect more work from yourself than from others? Learn to accept that you have limitations, and that these limitations may have changed if you have been fighting HIV for a long time. If you are a PWA, it might be time to overhaul that entire set of expectations you have always had for yourself. Exhausting yourself to the point of burnout will not only hurt you in the long run, but it will mean that there will eventually be one less person on our team. Is that what you really want? Tell yourself that fighting AIDS doesn't mean that you're not allowed to have fun once in a while. And when you do this try to mean it!
Okay, I'm done preaching. You can go to those chat rooms now.
Joe Greenwood is editor of Survival News.