22 July 2010

Letter to Stigma


Free HIV Testing
Originally uploaded by Jeremy Brooks

Dear Stigma,

I tell people they are HIV+ for a living.

More often I am able to tell people they tested negative, which is wonderful. But sometimes I have to tell people they did, in fact, test positive.

I think of myself as an HIV test salesperson. The test is free, so I don’t make money or commission off of each person who gets a test. I’m a “salesperson,” however, because HIV tests aren’t exactly as popular as the iPhone G4. People don’t usually stand in long lines or sleep in the cold overnight waiting to see me. I’ll credit you for that, Stigma.

Instead, I approach people as they wait to see their doctor or dentist at our local non-profit health clinic and try to convince people that everyone should get tested regularly.

“Hello. My name is Ciona, and I’m just going through the clinic getting people started on a free HIV test that we offer if you’ve not had yours this year. When was your last test?”

I get a couple of different responses to this question:

• My favorite: “Let’s see . . . I think it was a couple of years ago. But sure, I’ll take another!”
• Uncomfortable giggle and wrinkled brow, followed by a slowly stammered, “I’ve . . . never . . . had one. I don’t think I . . . need an HIV test . . .” (and occasionally they’ll follow this with a whispered disclosure: I haven’t had sex in 7 years or a very loud I don't do those kinds of things).
• “Oh, I don’t want to know if I have it.” (what?!?!)
• Sheer look of horror as if while traveling from my mouth to their brains, my words transformed into, “Hello. My name is Lucifer, and I’m holding a bottle of the plague in my hand for you to drink."

And, Stigma, I’m pretty sure you’re solely responsible for the last response.

While it certainly feels much better to get to tell someone they are HIV-negative as opposed to positive, I’m pretty certain that a lot of people who don’t even know that they are positive get past me. They are some of the ones who refuse to take the test because they are afraid or because the woman sitting beside them made such a big deal about how she did NOT need an HIV test because she is married and doesn’t do any of those bad things.

So these people who manage to get through may not ever be under the care of an HIV specialist, may not ever take medicine and may not ever know their status until it’s way too late for them to manage the disease and lead a healthy life. Yes, Stigma, all because of you.

And then you creep in and do your work on people who even know they have HIV! I met a man who was emaciated and struggling to even walk. As I rolled him in a wheelchair to go take an HIV test after much convincing, he told me that he did not need a test. He said he already knew his status. He came along with me, however, because he wanted me to pretend to take his test since his sister was there with him and nobody in his family could know he was positive. I obliged because I don't think he should have to disclose his status if he doesn’t desire.

But I was also very sad. This man was not under medical care, he said, because he did not have a car and didn’t want his family to drive him to see the “AIDS doctor.” He was choosing death over telling his family he had HIV.

Stigma, you are doing a great job of helping AIDS kill people. That’s right; I’m calling you an accomplice to murder.

Would you consider retirement? Could you consider letting go of your rank so that people who may not be at risk for HIV would get over you enough to just go ahead and make an HIV test a routine practice? Then this might help normalize it for those who are at a greater risk but are nervous to step into a clinic and ask for a test. Could you consider going away so that people could feel more comfortable saying that they have HIV without people judging them or their behaviors and actually get the medical help and emotional support that they need?

Would you please die instead of killing others?

Awaiting your departure,

Ciona

5 comments:

A. said...

ciona your writing is intense and captivating. keep speaking truth.

MMS said...

The world needs to read your letter . . .

Ciona said...

Thanks . . .

Madame Rubies said...

Perfect.

Thomas said...

I love your letter. For me stigma is the hardest part to deal with...