October #128 : I’m Gonna Tell - by Spencer Cox

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Here Comes the Son

Meet The Grandparents

Feet First

Attention, Class!

Flu's Clues

Gene Genies

Control Issues

Trainer's Bench-October 2006

The Big Chill

Ask The Sexpert-October 2006

Cash Prizes!

Inside Job

False Positives

Believe the Hypo

So Sue Me

Gender Bender

Hurricane Liz

The Little AIDS Club That Could

I’m Gonna Tell

Change Is Good

Editor’s Letter-October 2006

Mailbox-October 2006

Catch Of The Month-October 2006

Most Popular Lessons

The HIV Life Cycle


Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV

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October 2006

I’m Gonna Tell

by Spencer Cox

In the fight against stigma, has Spencer Cox divulged too much information?

I realized I might have gone too far when I was quoted in the New York Times discussing the terrible diarrhea that my HIV meds caused. As a Southerner, I didn’t need to be told that genteel people simply do not discuss their poop in a national newspaper. That’s when I decided it was time to be a little less public about the details of my HIV disease. But just a little.

I’d always been very vocal about it because I was afraid of being ashamed of it. I’d seen gay men crippled in the closet, and that scared me. Alcoholics Anonymous says, “You’re only as sick as your secrets.” I barely drink, but I think it’s good advice, so I try not to have any major secrets.

There’s nothing like HIV to make you think you’ve got something to hide. At first, I thought I might never have sex again. And those gastric side effects during the liquid Norvir days? I wasn’t fit for polite company. In 1999, when I became single again after nine years, I was terrified to tell dates I was HIV positive. But I made myself do it on every first date. I was happy whenever someone reacted well, and getting rid of those who didn’t was probably a good thing. But in general, I find that telling my truth, even when it’s scary, makes it less scary.

For me it’s gotten easier over the years. In 1986, a New York Times op-ed proposed tattooing all positive people, and many health care providers refused to treat people with HIV. Three positive brothers were banned from schools in Florida that year; locals later burned down their house. Now that was stigma. Whenever I fear how people will react to my HIV, I just remind myself of those who’ve come out before me, who had a lot more to lose: people like Ryan White and Rock Hudson and Michael Callen.

Some New Yorkers oppose the city’s efforts to expand HIV testing, citing the stigma of a positive result. The other day some angry AIDS activist assured me that the stigma had worsened for everyone except white gay men (like me). “When was the last time someone proposed putting you in a concentration camp, like they did to positive people in Cuba?” I asked. “Not recently? Then there’s less stigma.”

I also wonder how much we stigmatize ourselves. Testing positive means acknowledging a whole bunch of stuff, some of which we may not be proud of. We may be ashamed that we had unsafe sex or used injection drugs (or had unsafe sex while using injection drugs). We may be ashamed that we’re gay or that we trusted the asshole who swore he’d just tested negative. Or we may just be ashamed of having HIV.

People don’t talk much about positive folks being ashamed of themselves; I guess they think it’s empowering to pretend the shame isn’t there. But we often are ashamed. So we do dangerous things, like putting off getting tested until we’re sick with AIDS or infecting our sexual partners because we’re afraid to tell them we have HIV. And we send a message to the world that having HIV isn’t like having diabetes or cancer, that it’s a dirty little secret that needs hiding.

Stigma and shame—whether they come from others or from our own fears and judgments—won’t vanish by themselves. We must confront them, and we can’t do that while hiding. You don’t have to be foolish. If your HIV status doesn’t affect your job performance but you think your boss would probably fire you anyway, well, don’t tell your boss. But the closet is rarely the safer place to be. So get tested if you’re at risk. Be honest with whoever needs to know. Seek out other positive people for support. Come out, come out, wherever you are.

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