Sunday, September 06, 2009

Is It Time to Drop the Name "AIDS?"

An article appears today in the LA Times asking if it's time to end the "stigma" associated with HIV by ending the use of the "AIDS."

The writer says:

The Centers for Disease Control and Prevention classifies someone with HIV as having AIDS if their T-cell count -- the white blood cells that HIV attacks -- drops even once below 200; if the T-cells make up only 14% of all their white blood cells; or if they have one of about 26 "AIDS-defining" infections that prey on a weakened immune system.

If you think it doesn't matter whether you are described as HIV-positive or having AIDS, think again.

I should know.

Shortly after I was hit with the news that I'd tested HIV-positive in 2005, I was hit again with a test result showing I had a T-cell count of only 198.

"That's an AIDS diagnosis!" I exclaimed to my doctor. Learning I was HIV-positive was shocking enough. Confronting the fact that I would always bear the highly charged, confusing and stigmatized label of "AIDS" was overwhelming.

Nearly four years later, antiretroviral therapy and good healthcare have strengthened my immune system. My viral load is undetectable. If I didn't know that I have HIV, I wouldn't know because I have never been sick.

Yet I'm dismayed to think I am still considered a "person with AIDS."
I have to confess that this thought never crossed my mind. Maybe it's because my mother's a nurse and, for me, I feel no "stigma" associated with having a disease. But this writer feels that by calling what he has "AIDS," it's like carrying an additional burden.

I just don't get it. If you don't like the word "AIDS," then say HIV positive. It sounds to me similar to closeted people, or "exgays" (who don't have gay sex) not calling themselves "gay," but instead want to be called "same sex attracted" because they think by calling it something else, it's not there anymore.

But, then, I have been deathly ill with AIDS and have never felt the slightest embarrassment or shame in telling people I have AIDS. Would I also feel embarrassed telling people I have cancer (if I had it)? It's just a diagnosis of a medical condition. It's not like confessing to being a child molester. I just don't understand why it's a "stigma." What's there to be ashamed of?

Yesterday, we were having lunch with Aviva Kempner (the filmmaker who made the outstanding new documentary "Yoo Hoo, Mrs. Goldberg" -- if it's in your town GO SEE IT. It's about the now almost unknown Molly Goldberg who once was the most famous and celebrated woman in America) and when the conversation turned to me, and the other lunch guests asked me about myself and my music, I mentioned, without a bit of hesitation, that I had AIDS and that I had written a bunch of songs about it.

She asked, "So, you have AIDS and not just HIV?"

The question actually stopped me for a moment. I never considered there was a difference, but I suppose there is. For me, the two things are the same.

So, perhaps I'm living in some kind of unreality. AIDS. HIV. Meh. You have a virus. You take daily medication to fight it back, and it's a constant struggle to not get sick. What's the big deal? I was speaking with a friend yesterday who has clinical depression. He also takes daily medication and it's a constant struggle for him.

Everybody has their Achilles heel. Everyone has something they struggle with, and whether their "sickness" is of the mind or body, staying alive and sane in this world is a daily battle.

Welcome to life.

1 comment:

Ernie said...

Self hate - never liked it - one should always fight against it!