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HIV/AIDS Resource Center for African Americans
Kai Chandler Lois Crenshaw Gary Paul Wright Fortunata Kasege Keith Green Lois Bates Greg Braxton Vanessa Austin Bernard Jackson

Fortunata Kasege

March 25, 2008

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Disclosure, Relationships and Sex

Are you in a partnership now? Do you have a boyfriend or a husband?

No. Right now, my ex decided to leave me, when he found out he wasn't positive. I had to move on. He found somebody else, he started a family. For a long time, I thought that that's it, it's the end. I just have to deal with my disease, I don't think I'll have any relationships at all. But then years pass, and I say, life goes on. Maybe I need to give myself a chance again. So I did.

There is some possibility, there's somebody I like, so there's nothing official yet. I'm open to whatever God provides for me as far as relationships. I want to be open minded about that. If I like the person and the person likes me, he'll ask me the right questions, and then I will find myself in a relationship again. Let's cross our fingers.

When the time does come to start another relationship, how will you address safe sex?

That's always the bottom line. My life is not the same anymore. Before I was diagnosed, I didn't put so much importance on using protection, for whatever reason that I had at that time. But right now, I can't think of any kind of sex without protection. It just seems so bizarre for me to have any kind of relationship without protection. That will be my number one thing, whether the person is positive or negative: We all have to make sure we practice safe relationships.

Just because you have this disease, it doesn't mean that it's the end of the world. People do find partners in life, and they move on! I'm open to that. I'm open to starting a family in the future, I can see that happening. But I subject everything to God's will right now. I'm grateful for my daughter, and if she's the only family that I ever have, I'm positively grateful for that, too. But I keep my options open.

Speaking of family, do you have the support of your family? I know they live a long way away.

Yes, very much. It's really sad that I don't get to be with them while I'm dealing with this, but I have such wonderful friends. There's not that many of them, but I'm blessed with a nice, wonderful set of people who are like my family, and I never knew them before. When I got here, I just made friends with them.

My family stayed very supportive of me. They talk to me constantly on the phone, and they pray for me, and they're there for me. I'm blessed that way. My dad was the rock for me, was the best man that I have ever had in my life. He was the person who would tell me, "You're gonna be okay, you're gonna beat this." Unfortunately, he died before he got to hold me again and tell me that it's gonna be okay. But yes, they're very, very, very encouraging to me.

What's your best disclosure story?

The best one was the first time when I told my story in public. I remember it. After my father died, it seemed like the end of the world. But I decided to go out and share my story. I decided to talk about awareness and maybe somebody will be touched by this, so it isn't all tragedy.

I got this invitation to Kentucky. They had a fundraiser gala for World AIDS Day last year. That was my first time to go up there and tell my story in public. I remember after I finished, everybody stood up and they remained standing there for a few minutes. They were clapping constantly.

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I remember looking, and wondering, what is so special about this thing? I was overwhelmed, they had a standing ovation for me -- that was probably the only one that I can remember that was an over-the-top reaction. I thought, Here I am, telling my business, right in front of the people. I don't know how they're going to react. The outcome was remarkable. They were coming after that to talk to me and thank me for sharing my story and encouraging me.

The pastor from the community said, "People here, they're very uptight, and very conservative thinking about this disease. They have their way of thinking about the people who have this disease. You put a new face on it, and thank you, and we want you to come back and speak to our church."

How do you think HIV has changed you?

Oh, big time. I had long, long, long plans before. [Now,] I think it's such a privilege to be alive. I woke up today, I'm alive, that's all that matters.

The diagnosis and being a mother for the first time came at the same time. I don't know if it helped me to be a better mother to my child, because sometimes I look at her, and I say, "These are my healthiest years. If I'm not going to be this healthy for a long time, I should do the best I can right now with her." It helped to not take things for granted so much.

What was it like when you disclosed to your partner, and he then tested?

By the time we got home, he already knew what I was going through. He thought it was him, initially.

He thought he gave you HIV?

He thought he did, because he knows that, besides him, there was one more relationship that I had. That other relationship had happened when we were not together. After he did the test and the test supposedly came negative, then the whole thing changed. I had years of being emotionally abused by him, just by using that disease status. Being not from here, we kept it inside for awhile. That was probably the worst thing -- that's when the most damage happened.

After years, he decided he wanted to be with somebody else. He left, and he disclosed my HIV status to other members from my community. When he disclosed my status online, he didn't have to say [anything] more. People already look at you as a dirty person. That's all people have to know.

That's another challenge that I had to go through, as far as relationships are concerned: the idea that I have this, and therefore I'm not worthy anymore. The disease hits you both ways.

After he left, how did you get from the point of feeling bad about yourself to feeling good, and realizing it was him that screwed up?

I didn't realize the damage he had done until after he left. That's when you start recovering, that's when you realize how terrible you were feeling before. Dealing with HIV itself is hard, and with stuff like that on top of it, it damages your self-esteem. It's just terrible.

If someone's in that position now, I would encourage them that it's going to get better, because I can stand in front of people now and tell my story, coming from not wanting anybody to know my business, period. It's going to be okay. When you hit the bottom, the only way to go is up.

For me, that was it. I either had to be miserable for the rest of my life, or get up and get better, and do something positive. The more you surround yourself with positive people, the better you feel. If I stuck in that environment and that set of people that was negative, I think I would still be feeling the same way. You find a network of people that support you, or just be on your own and you somehow find your own strength and get better.


FORTUNATA'S MEDICAL UPDATES
CD4+ Count (July 2009): 375           Viral Load (July 2009): Undetectable
Current regimen (April 2009): Viread (tenofovir) + Isentress (raltegravir) + Intelence (etravirine) -- Fortunata just started taking her first-ever HIV med regimen on March 5, 2009. It was a difficult decision for her, 12 years in the making -- she had many worries about the effects of meds on her body and on her life, but she became much more comfortable with the decision once she saw that the meds were doing their job: In only two weeks on meds, her viral load dropped from 12,000 copies/mL down to 111 copies/mL and in July she discovered her viral load was undetectable.

Click here to e-mail Fortunata Kasege.

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