Rory Dunn: Karen, you look great, you're full of energy, you are not currently taking any antiretroviral drugs, and your T-cell count is under control. We really appreciate your taking the time to do this interview as you represent a Caribbean woman living with HIV in a community that is only now coming to grips with the disease. Your story and your appearance is so important because in the Caribbean, for many reasons including stigmatization and lack of proper health care and support systems, mortality rates from AIDS are ridiculously high and there is an urgent need to figure out a way to change that. What do you do to take care of your health?

Karen Roberts: For me taking care of my health is very easy. I go to my doctor every 3 months to get my T-cells checked. My viral load. They have been perfect numbers from when I was diagnosed to now. I don't take any medication. I take one a day vitamins. I drink and eat anything. I ask God for one day at a time.

RD: And how do you pay for this?

KR: Medicaid covers this.

RD: You look great so something is working.

KR: God

RD: Your story is very similar to that of many women who have been in long term committed relationships only to discover that they are HIV positive. Can you take us back to how you discovered you were HIV positive?

KR: I had surgery in 1998 and I went home to Tobago to recover for a month. And when I came back up my boyfriend said I had to get tested. I said OK not thinking that something was wrong. I took the test and it came back positive. When I asked why and how I never got an answer from him, but he had to know that something was wrong to tell me to get tested. When I went back to get the results I was nervous because the lady closed the door. She told me the results and started to counsel me and she asked how I was feeling. The only thing going through my head at that time was, how am I going to tell my kids that I am positive because I am always the one preaching to them to wear a condom. I came home and told my boyfriend what happened and he never said anything up to this day. In fact he stopped speaking to me because he told me not to tell anyone. But me, looking for comfort and support I told his sister and I told his father. His father saw me crying one day and asked what happened and I said, "Your son is putting me through hell." I told my mother and sisters and they were there for me. He cut me off because I told people. He just pulled himself away from everyone. I said OK, I am not going to fight with him because that won't give me back my life. I was thinking of committing suicide because I did not know how my kids were going to take it because back home in Tobago they see HIV/AIDS and they think you are going to die. It took me a while to tell them because I did not know how they were going to take it. I had to though because people up here see you going to different support groups and they start spreading rumors at home that I have AIDS. I had to call my son and it was a hard thing to do and in turn he had to tell his brother.

RD: What were some of the things that helped you come to terms with the fact that you were HIV positive?

KR: I found a magazine in a doctor's office and I started reading it and I found an 800 number and I called and the guy there started to counsel me every day. He was all the way in California and helped me. Then Somebody introduced me to a Dr. Fisher and I went there and met Michelle Lopez and she gave me the courage to come to grips with what I am dealing with. She and her daughter.

RD: Do you think that these services/information are easily accessible to Caribbean immigrants in NY? In Trinidad, does any of this type of support exist that you know of?

KR: It is available. You just have to know where to get it. Service is available here (New York) for people they just have to utilize it. Back home (Trinidad) it's hard or if it is there people don't want to go because they think somebody is going to see them. Stigma and discrimination (click here for presentation on Stigma in Jamaica) prevent them from going to get medical care. Up here support is here.

RD: It sounded as though your family really helped you. Could you talk a little more about how they responded?

KR: They responded by telling me to get a second opinion. At that time I told them I already had a second opinion and I am HIV positive and I do have the virus in my system. That was it. They did not sit down and talk with me about it. I told two friends at the time and they were devastated. They were more upset than I was and I had to make them feel better. I was not fighting it. It happened. There was nothing I could do about it. We just had to deal with it and move on. I started to build my courage up from there.

RD: You and your partner are not together anymore and he stopped speaking to you. There's a certain trust people in long term relationships have of each other. Given your experience, how can people in relationships protect each other? What conversations need to be had to ensure each partner is on the same page?

KR: Trust plays a very important role and if you can't trust your partner, who can you trust? There were times when we used to use condoms and there were times when we did not, but I trusted him. We were together for 11 years. For a husband and wife or a couple to ask their partner to wear a condom it can be tricky. If you and your partner were never using condoms and now you ask them to use them they will want to know why. How will you explain that? I tell people, you don't want to take any chances with all of the diseases out there. I just tell people don't trust your partner because you never know, but it is hard.

RD: We'll have to keep finding ways because we need to have those conversations. You are Tobagonian so you know that infidelity is part of our music, it's part of our culture, some men even get props for being players. Do you think this makes it difficult to have those conversations?

KR: No. If I am a woman and I know that my boyfriend is a player it should not be hard. I would insist he wears a condom because I don't want him to bring anything home for me. If he wants to fight me on that I'd tell him take the road. It's hard, but it has to be done.

RD: This may be personal, but have you had relationships since this last one?

KR: Yes. I got involved with a guy who is negative. Before I get involved with anyone I tell them straight up this is what I am dealing with. I am giving you a choice. Stay or leave and that has happened to me many times. That's your choice. I can't be mad with you because this is something that nobody wants. This guy that I am with is understanding and we talk about it and we surf about it on the net. He has come to grips with it and he deals with it.

RD: Do you think that being up front initially is the most important thing to do?

KR: Yes. I have a friend who was not up front with a partner and she had sex with him with condoms and then one time without and did not tell him that she had AIDS. He found out because we were in this group that would write to people in jail who were positive and had nowhere to turn. He found one of the letters that this guy wrote her, read it and asked the question. He almost went crazy. He could have killed her. He had to keep on getting tested. You can't take chances with people's life. You have to give people choices. What you don't like for yourself, don't give it to others.

RD: How many children do you have?

KR: Three. Two boys and a girl. She is the last. Curtis is thirty and he will be married on December 27th (2003). My second son is married and is in Tobago. He is twenty eight. And my daughter is here with me.

RD: You have a thirty year old son?

KR: I had him when I was sixteen.

RD: Wow, and you look like you are twenty five still. Keep doing what you are doing. Some of your children were in Trinidad when you discovered you were HIV positive.

KR: They were all there.

RD: Why do you think it was particularly hard to tell them over the phone from NY?

KR: I agonized over that situation for a while. Eventually I picked up the phone and I said I have something to tell you and it's not going to be too nice. His girlfriend said that he took it very very hard. He had to go and tell his brother. Back home they see AIDS and they think you die. People don't want to go and get care because they don't want folks to know that they have the disease so they die. I went home so that they could see me. I told them they have nothing to worry about. My eldest son came up and I took him to my doctor. My doctor sat down and talked to him and he went to my therapist and that helped him. With my daughter, she was the hardest one to tell. I did not tell her until she was eighteen. I told her because she told me she just had an abortion. I had to come out and tell her. I said, "I can't tell you not to have sex because you will, but this is why I tell you to protect yourself." It was very hard for her. She goes to a therapist and talks to the therapist, but not with me. I am glad she is getting the help.

RD: Do you think things have changed in Trinidad since then to improve people's ignorance of the disease?

KR: I found out here you know. The stigma there ain't going away. I met a couple girls last year at the Caribbean Link. They bring people up here every year to train them. And I met alot of girls from Trinidad and Tobago and different countries and the stigma is the same. I blame the health department because the doctors and nurses who work in these clinics tell other people the patient's information. There are people who leave home and come up here to get care because it's very hard at home. There are places down there where they can go to get help. In Trinidad there is CARE, in Tobago there are other places.

RD: How long ago did you find out that you were HIV positive?

KR: Five years, six months.

RD: You look great. Do you know how your children were treated as the news spread that you were HIV positive?

KR: People were talking about me and it was hard for them to listen to them. People were saying that their mother has AIDS and I don't have AIDS. Their mother has HIV, the virus. I had to talk to them everyday and tell them not to listen to what other people were telling them, to listen to me. I started to go home every year so that they could see me. My brother came up and I took him to my doctor.

RD: You work with an HIV/AIDS non profit in New York. Can you tell us about it?

KR: I volunteer all of the time with New World Creation. We help people from the Caribbean who want to come up to get treatment. There's an ADAPT program that helps people like that. You give them medication and when they go back medication is sent to them. We also do female condom demonstrations. We go into different beauty parlors and give demonstrations and distribute condoms. We were to have a concert Saturday gone, but it was cancelled. We have alot of programs in the works that we would like to do in 2004. We also do the AIDS walk and I want us to do more because there are alot of people out there who need help. We also want to start a support group and a building where people from the Caribbean can stay. We are the AIDS initiative through the New World Creation.

RD: You also want to start something of your own?

KR: I wish I could go home and do something.

RD: You do something on the internet now?

KR: What I do on the internet is counsel people. There is an HIV room where people come in and talk. I go in there and look at the information. I noticed that people would post information that they were just diagnosed as HIV positive and don't know how to deal with it, but nobody was paying attention. This is a room where people are looking for help. I PM (send a private message) them and ask whether it is true. They in turn answer back and we start speaking online and establish a support. On islandmix I stated my situation there last year and nobody got into it until lately. I go to all of these forums and offer support.

Rory Dunn: I think your presence on Islandmix is wonderful. You being brave and smart enough, to come on the site and share your story helped alot of people and opened our eyes. You started it and that's really what got it to where it was. Given that PHIVA.net is a project that wishes to involve Caribbean entertainers in the fight against HIV/AIDS, what are some of the things you think they can do?

Karen Roberts: Promote HIV/AIDS awareness. Make alot more songs about it. If people who are listening to these artists singing and hear them talking about HIV/AIDS all of the time they might pay heed to what is going on. TV and radio don't really play it up until around World Aids Day. The artists can play a more active part in promoting it. Rupee does.

RD: Rupee is probably the most prominent artist from the Caribbean speaking about HIV/AIDS.

KR: I know Buju Banton has and there are a few others, but the songs don't get played.

RD: Is there anything else that the artists can do?

KR: Have a show. The whole show should be about HIV/AIDS.

RD: The way things work, the artists will make the music and the DJs will be the ones who have to play it at the parties. They must also be involved. Any parting words?

KR: What I tell people is don't trust anyone. It is difficult when coming to a boyfriend/girlfriend, husband/wife situation. I tell everybody who I talk to, protect yourself. You have to love yourself more than somebody. Nobody could take care of you, but you. For me saying this now and I am positive people may say she should have done that before. Trust. I trusted him, but....

RD: Sometimes experience is the best teacher.

KR: Exactly. I use myself as a tool. With my face from the Caribbean, people may feel more comfortable to open up and get the care that they need. Posting my story on the internet opened alot of young girls from New York, Jersey, Brooklyn., St. Lucia, Bahamas. All over.

RD: It's amazing how so many of us are on the internet.

KR: Look at the Trinidad Guardian website. I have been begging them to do something about HIV/AIDS, but have not gotten much support from them. I post my story. They come in and said thank you for posting your story, but nobody pays it any attention. Over here young people these days think they are invincible. Nothing can happen to them. I go to my clinic and I see these young girls coming in there all of the time with their bellies big. What is that? And some young people are playing Russian roulette with their life. They are trying to get infected because they think it is a good thing because they could free care and get free housing.

RD: What age group is this? And they tell you this?

KR: Yes. 20, 25, 15 and up. It's sickening to hear some of them speak like that. It is sad, because HIV/AIDS is not something to play with and it's not something that I would wish on my worst enemy and I don't have any to begin with.

Rory Dunn: You feel that the people who are dying quicker or are struggling with HIV the most...what is unique about that group?

Karen Roberts: Healthcare. In all of the different Caribbean countries it would be healthcare. I met a girl from St. Lucia who has not had her blood work done in over a year because it's very expensive. All of them who came up (ADAPT program) were tested here before they returned. In the Caribbean countries there is not much access to getting the blood tests and blood work done or medication because it is expensive. Up here if you are on an antiretroviral and for some reason you change it, we come together, put it together and send it home to doctors so they could distribute it to their clients. Also, there is a lack of counseling. You have to be counseled before and after you take the HIV test and there must be a follow up.

Rory Dunn: Again thanks so much for sharing your story once again. You do a very good job to educate us and the community.

Interviewed by Rory Dunn for PHIVA.NET. December 2003. Much thanks to Nicole Burowes for recording this interview. Email Karen.

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