A Grandmother Talks About Testing HIV Positive After a Misdiagnosis
An Interview With Cassandra Whitty -- Part of the Series This Positive Life
Welcome to This Positive Life! We have with us Cassandra Whitty, a 53-year-old woman from Baton Rouge, La. Cassandra had been living with HIV/AIDS for almost a decade and was completely unaware until she was finally diagnosed in 2000. Despite showing numerous symptoms and having multiple hospital trips, like so many others, she fell through the testing gaps, and was misdiagnosed with an autoimmune disease. Cassandra admits she never really thought that HIV could happen to her. She tells us that coming from an era that didn't emphasize condom use and believing that AIDS was a gay man's concern, she thought she was exempt. And then she tested positive and realized she wasn't.
This mother and grandmother shares her experiences grappling with the diagnosis, how disclosing made all the difference, and why being an advocate and speaker in her community has proven to be her life's calling.
This is Kellee Terrell reporting live for TheBody.com. Welcome to This Positive Life. Welcome, Cassandra.
Thank you, Kellee.
So let's get started. Walk me through the day that you were diagnosed.
I was diagnosed on Nov. 19 of 2000. I went to the doctor to receive my results from a test. I probably need to back up, because I was misdiagnosed for two years with Sheldon's syndrome. And what moved me to the doctor that was about to give me my results was the fact that my insurance companies changed.
So I went to a new doctor; had to go all through my story all over again, what I was experiencing, what I was going through. I had to go through another battery of tests when I started realizing something was going wrong with my body. My lymph nodes, right here between my ears, always would swell. At the time, I was working in the Popeye's building down in New Orleans, because I work for a major insurance company. We were doing storm duty, catastrophe duty. And we were in a big, dusty building, so I just thought it was my sinuses.
So in 1995, I started noticing changes in my body. Fast-forward to 2000: By this time I had lost a lot of weight and I couldn't keep food down. I just knew something was not right. And I had been diagnosed with Sheldon's syndrome, which is also an autoimmune deficiency disorder; it has some of the same symptoms as HIV. So, I went to a new primary care doctor because my insurance changed in the middle of the year. And I told him to go do a whole battery of tests again. And they came back negative.
Those tests came out negative so he said, "Well, what I need you to do now is take two other tests. The one, you're going to have to sign for."
And I said, "OK."
He said, "Those tests are: one's a TB; and the other is an HIV." So in the back of my mind I'm going, "OK. I've been tested from the booty to the tooty -- from head to toe. Surely if I was HIV positive, I would know."
And how long did this testing process take?
From 1995 to 2000, so about five years.
You were basically showing signs of HIV. Maybe AIDS -- we don't know at this point -- and not one doctor thought that perhaps they should test you for HIV.
Not one. Not even in the emergency room. Because I went to the emergency room one Christmas Eve. And I had meningitis. I was running a fever of 104 degrees when they got me to the emergency room. That's the first time I've ever had to take four Tylenol to try to bring my temperature down. Even in the emergency room, I guess they didn't test me for HIV because I did not fit the image.
But in 2000, my new doctor proceeded to tell me, "I'm going to take these tests." That meant I had to wait another week for those results. So that's when I went back: on Nov. 19.
And when he walked in the room, he said, "Miss Whitty? You don't have to worry about not knowing what's wrong with you anymore. You're HIV positive."
I don't know what else happened after that. I just kind of sat there. I just got numb.
I was by myself, so I got upset in a way that wasn't emotionally on the outside in tears, but it was -- my stomach became real upset. I kind of got myself composed and came back. And he sat down and he said, "Well, 10 years ago this might have been a death sentence. But you know, I'm going to send you to another doctor, a specialist."
I didn't remember any, you know . . . all of this.
So he's saying these wonderful encouraging things, and you're just, like, whatever.
All I knew about was that HIV meant death. HIV meant death. By the grace of God, I drove myself home. And my son said it took me about six months [to disclose to him[ but he was actually the first person I saw when I got home from the doctor. So he was actually the first person that I actually told.
I walked in the door and he was laying on the couch and he said he saw it in my face. He knew something was wrong. I don't remember crying for about maybe six months. Because I still was in shock. You know, I listened to his story. Because I never really -- we never really talked about it for a long time. So in his mind it probably was six months. But he was the very first person when I walked in that house. He was lying on the couch and I told him I was just told -- what I had just been told. He hugged me, and we hugged each other.
I called my pastor and I called my boss. Because at the time I didn't know I didn't have to do that. But you know, I didn't know how this was going to affect me.
Because, you know, some people who have cancer do call their pastor or tell their boss. You're not always thinking something bad might come from that.
I'm not thinking. I don't know what's going to happen. So I'm trying to get my ducks in a row; you know, trying to figure out what's the next move. So I called my pastor. I was going to call my mom, but I didn't want to at this time.
That was in November. December, I went to my specialist -- I had an appointment -- who, at this point, was like more of a second opinion. He did the Western Blot test, a confirmatory test. And when that came back in January -- because I had to wait again -- he said, "We're not going to worry about where you got it from at this point; we're going to get you better."
January they put me in -- started -- a regimen.
What were your labs at that point?
Oh, I still have the paperwork. My viral load was in the millions. I was knocking on the door of AIDS . . .
And when you saw that, what did you think?
This is a new world to me. So for the first year, really, I was trying to deal with it. Prior to being diagnosed, I was just like, "Lord, I'm tired of being sick." And then when I was finally, properly diagnosed, things started getting better. So I wanted to get better before I told my mom. So within three to six months you start seeing changes. I started gaining weight. I started getting better. So I started out with my family. And I come from a large family. I have five sisters and two brothers and I can remember that was the week of Thanksgiving when I found out. And I was at my sister's house, and my brother-in-law, who is the assistant pastor. And he prayed. Now, the only people at that table that knew was my son, myself and my brother. So I had to sit there with this, you know to give thanks.
So you were really putting on an Oscar-winning performance on Thanksgiving.
Oh, yes, I was. It was a Thanksgiving I'll never forget. So you know, I was just moving along with my life. After I started getting treatment I started getting better. One of the things that my doctor told me is that I needed support and that only I can decide how I was going to handle that support system. But he was always asking me had I told my family yet.
So I started with my siblings. And three of them live out of town. I wanted them to hear it from me, face to face, and when I told them, I got nothing but support from my family. But my baby sister lives in Houston. And I had to tell her over the phone. And the one thing that she said to me that stayed with me was, "Well, you know, maybe you're going to be the next Magic Johnson."
At that time, I wasn't ready to hear that, because I didn't want to be that. I come from a popular family in town and everybody knows us in our hometown. I moved here, to Baton Rouge, and people know me here. So I'm looking at the fact that, you know, my life has changed. People are going to be looking at me, you know, like the scarlet letter on my back.
So you were really worried about that?
I was. And so that was another stress on me that I had a family secret. And, what is this going to do to me as an individual? So, as I educated myself by reading up about HIV, because honestly at this point, I'd thought that HIV was a gay man's disease.
So you never thought about HIV?
Did you even think you were at risk?
In the back of my mind, I thought it might have been possible. You know, you are listening to the news, so in that era after Magic Johnson, they were talking about protected sex, unprotected sex. But the era I come from, condoms were not really part of the equation. But I had a boyfriend. I was not a promiscuous person.
So whoever I dated, you know, I had a boyfriend. We were monogamous.
It was just you and your boo. That was it.
And I had no idea. I just never thought.
The person that infected me committed suicide without even telling me that he was positive. But because I know that I have a strong religious background, God is in my life. He won't give you any more than you can handle. And I've learned that through this journey.
But He was also able to give me closure. Because I found out who it was. One day after we had broken up, he came to my apartment. I think he wanted to tell me, but he couldn't.
And so years later, I am in the ER with my son -- it was one of those times when my lymph nodes were enlarged, and I always had to get a steroid shot. But we were sitting there reading the newspaper. And there was a murder-suicide. And I look down and see his name. And I knew the girl he dated was an ex-sister-in-law of a friend of mine.
So to make a long story short: When her mom died -- my girlfriend's mother died -- I went home to be mistress of ceremony at her funeral. And I asked her. Because I knew that that young lady and her mom were close. And I told my girlfriend "I'm going to call you when I get home." And when I got back to Baton Rouge I called her and I asked her, "Did she know whether or not her ex-sister-in-law was positive?"
And she said, "Yeah." She said, "And I called and told you when we found out." Because she knew I dated this guy.
I said, "What did I say?"
She said, "You said, 'Oh, really?'"
It still didn't even click that maybe that was something that you should be worried about?
No, because during this time I was actually being treated for Sheldon's syndrome. So in my mind I wasn't HIV positive
So, moving on, going through my family: I got my support. Then I branched out a little further, to uncles and it was all still within my family, but it's like once I told my family, a weight was lifted off my shoulders.
What made me go public was when I saw Magic Johnson in New Orleans at a conference. And he said, "Now that you know about HIV and what causes it, what are you going to do?"
And it just sort of lit my soul on fire. I came back to Baton Rouge and I told my pastor. I said, "You know, I know what I need to do now. I've got to be a part of the solution rather than the problem."
Because I knew at this point: OK, people know Magic, but they know me. You know, people are always talking about, "Magic has money. You know, he doesn't have HIV." But they know Cassandra. I'm someone you know, someone you grew up with, someone you work with.
But the first time I went public, I went to speak at a church during World AIDS Day.
What year was this?
I don't remember, but I was so scared because I'm walking into a building where somebody might know me. But once I told my story I felt better, because the reception I got was love. And I said, "Oh, well, that wasn't so hard."
But I got really involved in speaking out when I became a board member of the HIV/AIDS Alliance for Region Two (HAART). I did a public service announcement. When the lady asked me if I would do it, I was so comfortable, so I said, "Yeah."
She said, "Yeah?"
I said, "Yeah. I'll do it."
"You don't need to go talk to anybody?"
I said, "No."
"You don't have to talk to your family?"
I said, "No."
Because I was comfortable with my answer. I was at peace with that because I knew the direction where God was leading me was that I needed to tell my story so that what happened to me might not happen to somebody else. You know? I thought it would never happen to me.
So my circle started growing. I started with my friends at work. Because God kind of would allow me who I could tell, kind of tell me who I could tell. And I got with a group of girls, my coworkers at work; we had lunch. It was on my birthday. I think it was my 50th birthday. So I was so happy, you know, that God had allowed me to turn 50 -- or it may have been my 49th -- and I was getting ready to go public. And I told them.
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.
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.
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. 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.
So what is your dating life like now?
Right now, I have a friend, but we're just friend-friends. I'm not sexually active, because I choose not to be right now. I still have a wall up and I love me, and I don't want the stress of a relationship added to what I'm still dealing with. Even though it's been almost 11 years, I'm still dealing with it.
And to bring someone into my life to bring stress -- I have enough with family.
Do you find that women who were your age when you were diagnosed really still don't think that they're at risk?
I think because of me now my friends think a whole lot differently. And they have come to me with questions. They have said to me plenty of times, "You know, that could have been me." Like I said before, we come from that era where we didn't practice safe sex. So whether or not they're practicing safe sex now, I don't know, because I'm not in their bedroom. But I know that they are more aware now since I disclosed to them.
What does doing work mean to you?
I always tell people, "I know my status; do you know yours?" God left me on this Earth for a reason. And I believe that reason is to tell people. You know, the Bible says that our people are destroyed for a lack of knowledge. I can give you the knowledge that you need. What you do with that knowledge is left up to you.
Most importantly, this work gives me a lot of fulfillment. When I go speak somewhere someone always comes up to me and tells me about someone either in their family or even them. One time, I had spoken at this church, and a guy came and followed me to the back of the church. He said, "I just want to thank you." I could tell that he was so ...
You moved him.
Right ... to a degree that his brother was HIV positive and had been positive for years, and he would not shake his own brother's hand.
So I really made him feel bad, the way he had been treating his brother. He said I crucified him and made him feel bad with my story. But because of hearing my story, when he left the church he said that he was going to his mom's house, straight to his brother and hug him.
I said, "Well, you want to start with me?"
And he hugged me.
I said, "Because, see, I can't hurt you. But you can hurt me. You can hurt your brother more than your brother can hurt you."
It's that stigma.
It's that stigma. And I told him, "But you know, I'm sitting there, you're a minister. And you're preaching love. But you have a brother that's been positive and won't shake his hand?"
But it takes just one person to make a difference. And it never fails, when I go speak somewhere, someone comes up to me and tells me how much they appreciate what I said or that they are going to get tested for HIV. Some people even call me to let me know about their test.
I ask, "How was your test?"
"It was negative."
I say, "So, good, stay that way. Now that you know, keep it that way."
Speaking of stigma, I want to talk about stigma in the African-American community. And I want to be clear, that stigma exists in all communities. But why is it important for you to break down the wall of stigma in our community?
My son's aunt died of cancer. And I can remember a conversation she and I had before she died. And when she told me she was dying, we sat there and I compared what she was going through to what I was going through. And I just said, "You know, I don't see a difference in having cancer and having HIV, other than the fact that society accepts cancer, but they frown on HIV. And we're both trying to only do what? Survive. Live on this Earth just a little while longer."
She's dead and I'm still here.
People need to understand that HIV is a disease that's just like cancer and high blood pressure. It's something I have to live with. You can live a productive life. It's how you choose to handle your diagnosis. So I took my life and just looked in the mirror. I said, "Lord, whatever your will is, I'll do your will." And His will to me is to teach others -- to spread the word, not the virus.
What is your message to people who have just been diagnosed?
I would say, "You're not alone." Because when I was diagnosed I didn't know anybody. I didn't have anyone I could talk to who was positive. There were people in the field that could empathize with me; but there was no one there that could sympathize with me. You're not walking in my shoes.
Find someone that can support you that is going through or has gone through what you're going through. Don't do this alone, because it's a lonely, lonely road -- that you don't have to travel alone.
And everyone deals with their diagnosis different. My doctor uses me as a reference in his office for other patients who are newly diagnosed. So he has called and given my name to people. I've called. But you can't make a person, if they're not ready to accept. So you have to meet them where they are. And I offer my shoulder and my ear. Because that's all I can do is listen, give them an outlet.
I didn't have that. I had it in people that worked in the field. And I respect those people, and I'm glad they were there for me to give me that area where I could release. Because that's what one of the organizations did. That organization led me to HAART. I was able to cry -- let it out. Because there was no one -- I couldn't talk. I wasn't talking to my family about it. I couldn't burden my child with it.
People stay so isolated, and they don't want to come to support groups, and they don't want to reach out.
Right. And that's where AYA -- it was a very good support group called AYA (Allowing Yourself Acceptance). I was one of the first groups. The Volunteers of America here in Baton Rouge offered that class after I was diagnosed. That helped me tremendously. That was one of the ways I was able to tell the guy, you know? That was . . . it allowed me to be able to be open. That broke that wall down. So that was during that time, too, when I was dating this guy.
So when we had the AYA session I was able to -- oh, I was so excited, but it was because the counselor said, "I can see the difference when you came in here."
Because when I walked in that door -- and this is a true story -- I went because my doctor told me I needed, you know, counseling. I was like, "OK." And when I went to that clinic -- or, to their office -- when I walked in the door, I looked at the women and I said, "I don't have anything in common with these women." But then in the same breath, the Lord said to me, "Yes you do. You're looking at them from the outside. But you all have the same thing on the inside." And that's when I allowed myself to open up to the support group. And that started, too, my healing process. After that, I became a peer educator. I can't wait to retire and be able to do this work full time.
And with that, we're going to bring this interview to an end. Thank you so much. This was such a great interview.
Yes. You're welcome.
This transcript has been lightly edited for clarity.
Follow Kellee on Twitter: @kelleent.