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A Grandmother Talks About Testing HIV Positive After a Misdiagnosis

An Interview With Cassandra Whitty -- Part of the Series This Positive Life

April 16, 2012

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So this was recently?

Yeah, recently. I decided I needed to be a part of the solution. And I haven't looked back. I have gotten better, as far as telling my story. Because at this time, I would be crying. Because I didn't cry initially, and then after, when I started crying, it's like I couldn't stop. But that was still because I was releasing it.

But now I'm at a point where I still might cry, because when I started telling my story to other people and I see their response ... I always start off with, "You know who I am. I'm Cassandra Whitty. I'm a mother. I'm a daughter. I'm a sister. I'm a grandmother. I'm an aunt. I could be your neighbor. I'm a person living with HIV." And people's mouths just hang open, because they can't believe me when I tell them that I am the new face of HIV.

So when I go into my story and I tell them, "Ladies, listen to your body. Because your body is telling you when something is wrong." And my body was telling me something was wrong, and I wasn't satisfied with what I was being told.

"I would advocate to people, to women, ask for an HIV test. If you have never been tested, get tested."

And so I would advocate to people, to women, ask for an HIV test. If you have never been tested, get tested. I said when you go do your blood work, tell them, "I want an HIV test." I say, "Because you have to ask for that."

Yes. People think it is automatic. People think, "Well, my doctors are checking my cholesterol and other things, so they must be testing for HIV. And so if I were to test positive, I would know, because the doctor's taking my blood." And that is so not the case.

So how long do you think you were infected? So if you had tested positive in 2000, and you started having symptoms in '95 . . .

I'm going to tell you. I moved to Baton Rouge in November. October? No, November of '89. And he was like the first person I dated. And we dated for about six months. So I say around 1990.

So, for 10 years you were positive and didn't know. So let's shift gears a little bit. Let's talk about treatment. So they put you on a regimen in 2000. How's your regimen now?

My regimen is a lot better than it was. Because I went through several series of medications -- Sustiva, had me doing nightmares. So now I'm taking three medications, a total of five pills. Because two pills I take twice a day. And one pill just once. But I get to take them all at one time.

That's good.

Because my doctor, you know, told me, "I'd rather you be consistent and if you would forget at nights" -- because sometimes I would -- "if you're OK," he said, "take them all at one time." So I take all my meds at 10 o'clock in the morning every day.

And so adhering for you is much easier now.

Much easier. Much easier.

You said you have high blood pressure. What are some of the other things that you suffer from?

Besides allergies, that's it.

It's important to emphasize that people living with HIV have other health issues to deal with as well. You could have glaucoma; heart disease; diabetes. So how do you manage your high blood pressure and your HIV at the same time?

I take my high blood pressure medicine along with my other meds.

So you pop all of them at the same time?

I pop all those pills at one time. So I'm good to go. My doctor monitors all of that.

You talked about how the weight was lifted off your shoulders when you disclosed to other people. What has it been like for you to be such an active member of the HIV community? And how has that changed you?

"My life is an open book now. That's the way I look at it. It's like I don't have any secrets."

My life is an open book now. That's the way I look at it. It's like I don't have any secrets. You know everything about me there is to know.

One thing I have to say is, I never -- I never -- felt, discriminated against. I never got that stigma, where people were ostracized.

I can remember the first time I had someone that was interested in dating me since I'd been diagnosed. And we dated for about two years. But for me to have to tell him, I thought that was the hardest thing in the world for me. And when I said, "You know, if we're going to take this any further, I need to tell you," his response was, "I'm glad you told me, but that's not going to change anything, you know -- the way I feel about you."

Were you shocked?

I was. I was relieved. Because all I could think about was the rejection. I didn't want the rejection and I didn't get that. So he was another person that helped me get over. We aren't together now, but it had nothing to do with HIV. But he was there when I needed to feel like a woman again.

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More From This Resource Center

Magic Johnson Wants You to Know: He Isn't Cured of HIV

Living With HIV? African Americans Share Their Advice

This article was provided by TheBody.

See Also
This Positive Life: John Whitty, Son of Cassandra Whitty's HIV/AIDS Resource Center for African Americans
HIV and Me: An African American's Guide to Living With HIV
More Personal Accounts on African Americans and HIV


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