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.