If you've been diagnosed as being HIV positive, you've probably thought about death. It goes with the territory and it's only natural. What's different about HIV and other life threatening diseases is that people with HIV and AIDS have had far more extensive and graphic media coverage. Virtually everybody knows what AIDS in its later stages looks like. What happens to an HIV positive person after five or ten (or more) years of witnessing what, until recently, was considered the inevitable? Even if you didn't really plan to die, did you actually plan to live? Well, I certainly didn't . When at the age of 38 and nearly a decade since my diagnosis, someone told me to "get a life", I realized just how poorly equipped I was to plan for a future.
Guilt And PanicWith the dawning of the Protease Inhibitor Age, two phenomena have become very apparent. One is Survival Guilt, which has been long recognized. It surfaces when we outlive a friend, lover or child who didn't make it to see the approval of new, more effective medications. The other is something I can only think of as Survival Panic. That "Oh my God, I'm going to live!", thing. While we're likely not to get any sympathy from "civilians" (the uninfected) concerning the much improved prognosis, the fear is very real.
Additionally, a lot of us have been through this before. TAT inhibitors, Compound Q, high dose alpha interferon, etc.. If you've been around long enough to remember these treatments you may be have gnawing doubts over triple combination therapy. What will we learn about this therapy over the next year or two? The higher our hopes are, the harder they may be dashed.
The emotional AIDS roller coaster has picked up a lot of speed in recent months and we're feeling the increased psychological G-force. For those who respond well to "The Cocktail", the next wave of HIV management may be in the mental health domain, rehabilitating a shell-shocked, post acute, stressed out community.
If you've been experiencing Survival Syndrome and the guilt that can be associated with it, you're not alone. It's been a hot topic in support groups and mental health providers are taking a serious look at it. So don't go into a shame spiral. Got to group and talk about it!
Women Alive peer support and information exchange group meets every Monday at 6:30pm. Call Nina at 213.965.1564 for more information or just drop-in at 1566 S. Burnside Ave. Los Angeles, CA. 90019.
This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.