When I was a kid, nobody would tell me what happened to Uncle Olan. After I grew up, I found out he died of cancer at age 37. Nobody would talk about cancer back then, certainly not around children, because it was considered a death sentence.
Today, HIV and AIDS get the silent treatment. Infection with HIV gets a double whammy in our culture: it's still considered a death sentence, plus it's associated with bad behavior such as promiscuous sex and illegal drug use. Of course, neither prejudice is fair. A wide variety of people have been infected over the last 30 years. And many of them live with HIV today, just as many people live with diabetes and other long-term disorders.
I got a taste of the HIV stigma when I went to the library and checked out the book Living with HIV: A Patient's Guide. I was delighted when I found it on the shelf: it's up to date, and filled with practical information. But as I headed for the service desk, I thought, “Oh no, the librarian is going to think I have HIV.” I was tempted to say, “I don't have HIV, I just have a job writing about disorders of the immune system!”
In reality, nothing happened. The librarian was perfectly professional. I check out lots of books on health conditions, and none of the librarians has ever said anything about my choice of reading material. But still, it just feels different to be seen with an HIV book.
So I was amazed to read the good news in the book. HIV does not have to be much worse than diabetes. Yes, you need special medical care, but you still have a life and a future.
A few of the recommendations in this excellent book are:
1. Get a doctor who specializes in HIV care and treats at least 50 HIV patients per year.
2. When you start taking anti-retroviral drugs, take them precisely on schedule as prescribed. If you take them irregularly, the virus can develop resistance to an entire class of drugs. It's not beneficial to start the drugs until your blood tests show CD4 cells below a certain level. But once you start, you need to keep them up.
3. Don't let emotional distress keep you from getting care for your physical health. Keep up treatment for yourself as a whole person.
Reference:
Mark Cichocki, RN, Living with HIV: A Patient's Guide, McFarland Publishers, 2009.
Linda Fugate is a scientist and writer in Austin, Texas. She has a Ph.D. in Physics and an M.S. in Macromolecular Science and Engineering. Her background includes academic and industrial research in materials science. She currently writes song lyrics and health articles.