March #142 : Diagnosis: Stigma - by Annette Lizzul

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Diagnosis: Stigma


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March 2008

Diagnosis: Stigma

by Annette Lizzul

Having lived with HIV for more than 20 years, I’ve seen my fair share of doctors—whose sensitivity has ranged from good to bad to downright ugly. Back in the ’80s, when doctors (and I) didn’t fully understand the disease, I was timid and even sympathetic whenever a physician went into full-metal-jacket decontamination mode before entering the examining room. I would even feel grateful when a doctor showed me compassion or kindness. I’m stronger now, hardened by time into a pillar of steel. But even steel can be melted. Recently, I was hit by a bolt of discrimination—from a plastic surgeon.

He had been recommended by my infectious-disease (ID) doctor, after an accident left a three-inch gash in my forehead. Let’s just say it involved cooking, wine and a dropped utensil. I didn’t have the time or energy to visit the emergency room. Besides, what’s a small cut when you’ve survived CMV retinitis, encephalopathy and mega HAART side effects? But when I woke the next morning, I realized that I really should seek treatment.

It’s always an emotional ordeal to see a new doctor and fill out their paperwork: Heart disease? No. Smoke? No. Sexually active? Hopeful. Other conditions we should be aware of? Yes. List of medications? I carry an index card naming of my meds and always just attach it to the page.

Handing my paperwork to the receptionist, I awaited her expression. I saw brief shock, then astonishment, then That Look of Fear. I waited in the examining room for more than an hour, convinced they were scheming to get rid of me. I used to endure these situations without saying a word. But now, I always storm up to the reception desk and ask whether I’ll have time to order pizza or Chinese while I wait.

The doctor came in, dressed as if he were entering a quarantine station. I looked him in the eyes—the only things sticking out of his mask—and told him that I wanted him to be aware of my status. Then, trying to keep it light, I said he could get by with universal precautions—the Andromeda Strain gear was unnecessary. I smiled and said that he’d come highly recommended.

What followed was the probably the most stunning experience in my life with HIV. The doctor told me that he was “sick and tired” of my ID doctor’s medical group sending him “those people.” I reminded him that I was one of “those people.” I also reminded him that as a plastic surgeon, he is routinely in contact with all sorts of biological agents, not just HIV. I spewed statistics from the CDC about antibiotic-resistant bacterial infection, MRSA and other dangers.

Taken aback, he stammered that he really did want to treat me. Then he asked me how I contracted HIV, a question I thought inappropriate. He tried some damage control by saying that he understood that I was an innocent victim—a comment that only infuriated me more. He tried to explain that it was his wife who had told him not to take HIV-positive patients. She didn’t want him bringing the virus back to his family. And this from an MD!

He looked at my wound, said it was too late to treat and pressed tape over the cut, almost completely covering my eye. My visit, he said, had indeed convinced him not to accept any more HIV-positive people. For the community’s sake, I was grateful. But the wounds on my forehead and in my heart were leaving deep scars—of the ignorance that surrounds HIV after all this time.

I wrote to the medical board, stopped the doctor’s $200 credit-card charge and had myself a good cry. The board decided it lacked evidence for a penalty. All I wanted was an apology from the doctor. I didn’t get that, but I’m proud that I stood up to the indignity. The doctor left his mark on me, but I plan to go on living for a long time, with fewer permanent scars.

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