"I Have HIV:" Patients Cope With Their Disease In the Face of Discrimination

I wish I could paint you a dramatic picture with images of how the steam rose from the 150-degree latte in front of my father, blurring the fearful expression he fought to hold back. I wish I could recall the color of his shirt, or the way his bracelets slid down his wrist as he nervously raked his fingers across his facial hair, creating that distinctive crunching sound. But despite it being only six years ago, I can’t.

My little sister, Mariah; my father, Nelson; his partner, Gordon; and I sat at a little steel table smashed between Café Aroma, the information kiosk, and a hundred dull faces all mulling about the Valley River Center in Eugene, Oregon. All other details are gone, eaten alive by the beast of a cat my father was about to let out of the bag. My thoughts were spastic. Did I do something wrong? Did someone die? When my father spoke, his words were fatigued: “OK, I’ve got something heavy, pretty drastic for you two to hear. However, I need to tell you, I’ve done a lot of research, talked to a lot of doctors, and I’m going to be OK.

“I have HIV.”

It never occurred to me that someone I loved could get HIV, and I imagine I’m not alone.

Over a million Americans have the disease, and most have learned that it carries more than a fear of death: It also brings a heavy load of judgment and discrimination.

It took my dad two months before he felt he was ready to tell Mariah and me that he was sick. He later told me how he debated telling anyone, even his own children.

I asked my dad what had to change for him to be more open about living with HIV. He admitted that it’s a hard question to answer. There is so much information about HIV that he’s surprised people still treat the subject like the plague.

About a year ago, my dad ended a friendship due to such a reaction. A hairdresser, my dad often helps out friends during his off hours. He was cutting the friend’s hair in his kitchen when he nicked his finger. She lost control and started shouting, “Fuck, you’re bleeding! How am I going to tell my husband? Fuck, I’m going to have HIV now!”

She was completely safe. She had no open sores and my father’s blood didn’t even touch her. It’s reactions such as this that my father hopes will end.

Because of his disease, he has experienced similar scenarios in places where he should feel safe—hospitals and doctors’ offices. He recently went to the emergency room for stitches after slicing his thumb while laying linoleum. The nurse, wearing gloves, began to clean the wound and go over his medical history. When my dad told the nurse he had HIV, the nurse panicked. He stopped what he was doing and left to get his supervisor. A doctor came in to finish and blew it off as if nothing had happened. “I’m pretty sure that was [the nurse’s] first time handling something like that, and he didn’t do very well,” my dad says.

My father’s situation isn’t unique. Angela Jones, a 50-year-old mother of two and peer counselor from Atlanta, has been living with HIV for over 26 years after a botched blood transfusion. Much like my dad, she constantly experiences discrimination. Jones has seen doctors put on two or three pairs of gloves, then suit up in extra gear and equipment. She says it makes her feel bad — as if she’s some sort of burden. She’s been to the dentist and watched the hygienists do their best to keep their hands off her. One dentist went to measure a sizing plate and simply looked into her mouth and guessed the size.

“They didn’t even want to touch me,” she says.

When it comes to the medical industry, Jones feels that it’s a losing battle. She, like my dad, is dependent on pharmaceutical companies. Jones’ HIV medication, Atripla, costs her $1,500 a month, while my dad pays $2,000 per month for his medication. Jones says that with all her medications, treatment, and hospital visits she can pay upwards of $25,000 a month.