[INSERT NAME HERE]’s AIDS Story
This story isn’t exactly true – but the best ones rarely are. There is design in the deceit because I don’t own the whole story and some facts do damage.
Pat was dying. The androgynous pseudonym is a necessary lie. Pat’s classification as male, female, black, white, Hispanic, rich, poor, hetero or homosexual almost killed Pat.
Pat was wasting, listless, and unresponsive. Pat had been getting worse for months. And everyone from the family to the doctors was baffled. None of the standard tests you give to people like Pat provided answers. The last time they carried Pat to the hospital, we were told to come say goodbye.
Then a wet behind he ears intern suggested Pat be tested for HIV, the virus that causes AIDS. Pat with AIDS? Just another example of a wasted test adding to the costs of healthcare. But since the tests for dengue fever and the flesh eating virus had come back negative, and the HIV test only cost about $40. What the heck?
There are a lot of things about this story I don’t know. How did Pat contract HIV? That is Pat’s business and it doesn’t matter to me. How long had Pat lived with HIV before diagnosis? I don’t think even Pat knows that but I can only imagine the hell of slowly dying without knowing why.
But this I do know. Today almost 3 years later, Pat is doing great. Amazing treatments have now rendered HIV infection a chronic manageable condition. That means that with the right medicine and care, you can live with HIV just like you live with diabetes or high blood pressure.
Pat almost died of stereotypes. Pat didn’t fit the mental model of someone with AIDS that people from trained medical professionals all the way down to me had formed. We all saw Pat as a collection of characteristics (gender, skin color, economic status, sexual partners, etc.) that were inconsistent with AIDS. Instead of seeing Pat as different from “people with AIDS,” we all should have realized Pat shared one thing with them – blood. AIDS is a disease of the blood and almost all of us have that stuff running in our veins.
I told a doctor friend (the real type not one of those Ph.D.s) about Pat. She told me that in the U.S. up to 25% of the million plus people living with HIV don’t know they are infected. That means that over 250,000 people will not receive life-extending treatments – and they are at greater risk for transmitting the virus.
I asked the doctor why they weren’t tested.
She answered with a challenge. “Let’s test you right now? It only takes a few minutes. OK?”
“Well, I don’t know if …”
“You’re scared. Makes sense. It is scary. But the only way for you to get over that fear is to realize the benefits of testing. If you are infected with HIV right now, not knowing won’t save you. Not knowing will kill you – and maybe someone you love.”
I was tested. Pat’s story convinced me.
For the past two years, I have been working with a creative group of people – students, healthcare professionals, educators, videographers – to learn how we can make and tell the stories that can save people’s lives. New media technologies like cell phones offer new possibilities.
Next week I will tell you about what we have learned, what we have tried, and what we want to do next – the Global AIDS Personal Public Service Announcement Project.
Pat was dying. The androgynous pseudonym is a necessary lie. Pat’s classification as male, female, black, white, Hispanic, rich, poor, hetero or homosexual almost killed Pat.
Pat was wasting, listless, and unresponsive. Pat had been getting worse for months. And everyone from the family to the doctors was baffled. None of the standard tests you give to people like Pat provided answers. The last time they carried Pat to the hospital, we were told to come say goodbye.
Then a wet behind he ears intern suggested Pat be tested for HIV, the virus that causes AIDS. Pat with AIDS? Just another example of a wasted test adding to the costs of healthcare. But since the tests for dengue fever and the flesh eating virus had come back negative, and the HIV test only cost about $40. What the heck?
There are a lot of things about this story I don’t know. How did Pat contract HIV? That is Pat’s business and it doesn’t matter to me. How long had Pat lived with HIV before diagnosis? I don’t think even Pat knows that but I can only imagine the hell of slowly dying without knowing why.
But this I do know. Today almost 3 years later, Pat is doing great. Amazing treatments have now rendered HIV infection a chronic manageable condition. That means that with the right medicine and care, you can live with HIV just like you live with diabetes or high blood pressure.
Pat almost died of stereotypes. Pat didn’t fit the mental model of someone with AIDS that people from trained medical professionals all the way down to me had formed. We all saw Pat as a collection of characteristics (gender, skin color, economic status, sexual partners, etc.) that were inconsistent with AIDS. Instead of seeing Pat as different from “people with AIDS,” we all should have realized Pat shared one thing with them – blood. AIDS is a disease of the blood and almost all of us have that stuff running in our veins.
I told a doctor friend (the real type not one of those Ph.D.s) about Pat. She told me that in the U.S. up to 25% of the million plus people living with HIV don’t know they are infected. That means that over 250,000 people will not receive life-extending treatments – and they are at greater risk for transmitting the virus.
I asked the doctor why they weren’t tested.
She answered with a challenge. “Let’s test you right now? It only takes a few minutes. OK?”
“Well, I don’t know if …”
“You’re scared. Makes sense. It is scary. But the only way for you to get over that fear is to realize the benefits of testing. If you are infected with HIV right now, not knowing won’t save you. Not knowing will kill you – and maybe someone you love.”
I was tested. Pat’s story convinced me.
For the past two years, I have been working with a creative group of people – students, healthcare professionals, educators, videographers – to learn how we can make and tell the stories that can save people’s lives. New media technologies like cell phones offer new possibilities.
Next week I will tell you about what we have learned, what we have tried, and what we want to do next – the Global AIDS Personal Public Service Announcement Project.
posted by Grady College /University of Georgia at
6:08 AM
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