An interview with JoJo Napoles
Joan Napoles, is a twenty-four-year old Cuban male who was diagnosed with AIDS on April 12, 2006. The interview below discusses a multitude of questions concerning his and his families initial reaction to the diagnosis, the steps he took to take care of her health, and how he has overcome some of the stigmas associated with HIV/AIDS.
Tell me a little bit about yourself.
My name is Joan Napoles. I am twenty-four years old, I am HIV positive. I am from Cuba. I moved to the United States ten years ago. I lived in Miami ten years. I never liked Miami. I moved to California in September 2008. I am very happy here, I really like it, it is really nice.
When were you first diagnosed with having HIV?
I was first diagnosed with HIV on April 12, 2006. I was very sick.
What were your first thoughts once you had been officially informed that you had contracted HIV?
Well it wasn't even HIV it was AIDS. I think it is something very different, it is like a higher level. It was really sad. I screamed and cried a lot. It was horrible.
How do you think you were infected?
Unprotected sex. I had a relationship, it was like my first relationship. And I just got it from this guy and it was kind of my fault and his fault.
You said it was a horrible situation. Do you still feel that way right now?
Not anymore. It has been three years now and I feel totally different. It is like I love California so much and everything that is here. When you feel okay in one place some of the stuff that you have in your life goes to second place. It is not important anymore. I mean it is important to take care of me but it is not something that I actually have an issue with.
How did you move from feeling as if it was a horrible situation, a hopeless situation to being more optimistic than before? You mentioned that California is a great place but talk a bit about that process from then until now.
The first thing that I think is that it takes some time. People when you this type of diagnosis it takes time for you to accept it and to start living. I mean that if you are somebody that you want to live and you want to have a life. Its the best thing that you can do to accept and deal with it. Other wise it can be death, it can be very bad depression and it can be a lot of things but none of them very good.
When you were diagnosed who did you first tell and why?
When I was diagnosed, my mom was with me and she actually told everybody in my family. I think I was the first to tell my sister in Spain and my dad in Cuba, too.
How did your family respond or react to the notification or the reality of their son, their brother, their family member having AIDS?
Well my mom she had a hard time and she used to cry a lot when I was in the hospital. My sisters, they cried a lot over the phone. At that time it was just me and my mom in Miami and I had two sisters in Cuba and the other on was in Spain. They cried a lot and they were screaming and they thought that I was gonna die. It was very sad.
How did that make you feel?
It might sound bad but I didn't actually have the time to feel what they were feeling. I was just like feeling my own feelings. Its very complicated.
Are you publicly out with you status? Do you tell people that you meet?
Actually, last Wednesday I met somebody and he is not HIV positive. It is somebody that I am dating and I just told him from the very beginning that I have HIV. I think it depends on the kind of people that you meet. If you feel confidence in telling somebody I think that is better. If you tell them you are going to feel confidence. Whether it is a love relationship or whatever I think that is good to tell people.
Do you HIV or AIDS?
I was diagnosed with AIDS and now I am taking medicine and I am back to HIV and I am doing good.
How did your partners respond to you telling them?
He didn't care. He said he doesn't have a problem with that. Yeah, since Wednesday, we spent the weekend together and it was fun. He is a nice guy. He is Puerto Rican and is a lot like me.
What myth would you like to dispel about being young and HIV positive? Something that you think is important for people to know.
I think that it is important that people realize that having HIV is not actually the end of the world. And that you can have friends, you can have love in your life you can have a lot of things. It is actually happening to me. I have it but my life is changing. I am meeting people and I ma doing stuff that I never did before when I was technically healthy. I think that it is very important for people to know that it is not the end of the world if you have HIV. If you take care of you, you can live a long life. You can die in a crash, you don't have to die of HIV.
Tell me the best and worst response you have received after telling some one that you have HIV.
I don't think I have had a worst answer from somebody. I meet this guy on line and we were going to have sex. We were talking and he asked me if I was honest and I said that I have HIV. He said that he made a promise a long time a go that he was not going to have sex with someone he had HIV. And I was okay with that because I understand but at the same time it was very sad but I also think that there was a more important reason for us to meet that night. We didn't have sex but the told me somethings that actually made me feel better. I think it was important for him to listen and get the information from somebody who got HIV to not have unprotected sex. It wasn't bad, I think it was a good experience I learned from that.
What is the best response that you have gotten from someone after you told them that you are HIV positive?
This guy that I just met last week. He didn't care about it. He was acting like I didn't have HIV. He was acting very cool and that made me very happy.
Is that typical of guys you meet or is that a new response?
I'm too cute to be thrown away. “he laughs”
What do you think are some of the biggest challenges you faced being young and HIV positive?
I think being healthy and trying to stay healthy. Trying to keep my mind in a healthy place. Because if I am not healthy or if my mind is not healthy at all I would feel very bad and stop caring about living and doing stuff that I think it important. Like going to school or getting a job or falling in love or having friends or whatever.
After being diagnosed how long did it take before you started receiving treatment?
I started receiving treatment when I was in the hospital. They started treating me from the very beginning, when I was diagnosed. They used to give me all these horrible pills that used to make me very sick. They were actually not helping me.
What do you mean by not helping you?
They used to give me rashes and diarrhea. Panic attacks and horrible side effects.
What is the hardest thing about taking medication?
The side effects are my main concern because my body is very resistant to medication. It is a big challenge for me to take medication because they give me all these horrible side effects rashes and diarrhea and panic attacks and a lot of crying and depression and its very bad.
How do you cope with the side effects?
So far I am taking a new medication and its not giving me any bad side effects. I just have my bilirubin ( HYPERLINK"http://www.labtestsonline.org/understanding/analytes/bilirubin/test.html"http://www.labtestsonline.org/understanding/analytes/bilirubin/test.html) it is a little bit high and I might have to change my medication if the doctor tells me to do it. I am taking an antidepressant too. So my brain is a little bit balanced to help me with the medication so I am more relaxed and can actually take the medication.
Before being diagnosed with AIDS did you know much about the disease?
I heard about the disease. When I was in my country I heard once about his guy, he was a doctor and he died from AIDS and he didn't have the time to actually know that he had AIDS. I heard that and it was very scary. In Cuba, in my country they put people to live in a place, I don't remember the name right now. But it is out of the city and they have all the people with AIDS and HIV there and they receive treatment.
But did you know much about HIV itself? The virus and how it attacks the body, etc.?
Not really. Like I said I heard from this guy and on the news maybe some one else mentioned it in the street and stuff like that but I never actually cared of paid attention to HIV or AIDS.
Now that you have it, there are a lot of thing that you have needed to educate yourself about. How did you start that process?
I think in my case it was time. I don't like talking about HIV or AIDS. I don't know why but it is very depressing and I don't like listening to stuff about HIV. The stuff I know about it is enough for me to tell people that they need to use condoms take care of themselves or have safer sex.
What type of advice would you offer to another young person about staying safe and practicing safe sex?
First of all it is very important to use condoms and to have safe sex. Pretty much just safe sex and don't do crazy stuff. Just take care of yourself.
And by “crazy stuff” you mean?
Like doing drugs and having sex or being drunk and having sex because some times when you are doing those things you forget to get he condom and use it. And it is very creepy.
What advice would you offer to someone who is newly diagnosed with having HIV?
I would tell them that they can live a long life and that they will, they just need to take the medication and stay healthy. They can have a good life if they put it in their mind. Its not the end of the world and I know it is hard and I know it is very sad when you get it because society makes you think that the people who get must have slept with thew whole town. Thats why I think that most people just don't want to tell other people because they will think that they are promiscuous.
Do you think that they stigma around HIV has impacted people not getting informed about the facts and practicing safe sex?
I think people are sometimes very ignorant and they scare the people that actually want to learn.
What is the most significant thing that you learned about yourself since you were diagnosed with HIV?
I'm very strong and I thought that I was very weak. I learned that sometimes life is very sad and you have to go through some stuff but of you keep your mind on the right path and keep looking forward you can do it.
Thank you for speaking with me JoJo. I appreciate how open you were with me about your life.
You're welcome. Anita it's nothing, lol.
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