Newly Diagnosed? Words of Encouragement from HIV-Positive Women

This Primer was prompted by two situations. I have worked with persons living with HIV since 1993 and in Africa, there are still stigma and discrimination issues are around HIV. Secondly, I have heard people in influential positions make very denigrating statements about persons living with HIV. I had wanted to borrow voices on readiness to self-care and am so grateful to: http://www.thebody.com/content/70295/newly-diagnosed-words-of-encouragement-from-hiv-po.html?getPage=19.

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There's no guidebook for what to do after receiving an HIV diagnosis; there are as many ways to react to a positive HIV test as there are people who have been diagnosed. After taking a deep breath, and realizing you are not alone, you may want some advice on how to cope from a community of women like you. Browse through these pages and let the words of women who have been in your shoes give you the strength to face the future -- and yes, there can be a very bright future after testing positive.

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Lucia, California, diagnosed in 1989

Don't give up! Educate yourself -- this is extremely important. Find something that appeals to your psyche, to your inner peace, to help you deal with the information you will be getting, because some of it will be scary as hell. If you have something inside you that keeps you calm, you will navigate through things beautifully.

What do you have inside of you that keeps you calm?

God. I guess that's it. God. I'm not religious though. It's just I have an incredible belief in something greater than myself.

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Fortunata Kasege, Houston, Texas, diagnosed in 1997

I would like to advise somebody who's newly diagnosed: Do not give up.

If you take care of yourself and you follow what you're supposed to do and you stay in care, you will be OK. Be positive. There's a whole lot of life ahead of you. Don't give up.

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Teniecka Drake, Colorado Springs, Colo., diagnosed in May 2001

I would tell them that, yes, there is life after being HIV positive.

Yes, you will feel very terrible and bad once you have had that diagnosis, but you've got to continue to have a positive, optimistic attitude toward the rest of life, because life doesn't stop after your diagnosis. As life goes on you have to keep that attitude of optimism and not just look at the bad things related to HIV. While HIV does have its side effects and bad things that go along with it, there are positive things about being HIV positive.

What are they?

For me, personally, it's being able to share my story among youth and my peers. I'd like them to know what I had to go through. I share my experience and my story. I wouldn't want a single person to have to walk in my shoes, not even for a single day. So the positive thing I take away is getting to share my story, getting to be out there to help people understand and know about it. Still, people do not understand, and there are still stigmas and stereotypes out there associated with being HIV positive.

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Evelyn Hernandez Valentino, Cathedral City, Calif., diagnosed in November 1993

At first it's definitely going to be a shock to your system. It's going to be challenging.

It's going to be hard. But surround yourself with people who love you, who will support you. I have a lot of faith, and that helped me a great deal. Understand that you are living with HIV. You're not dying of HIV or AIDS.

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Antionettea Etienne, New York City, diagnosed in 1997

First thing I would tell them to do is breathe. Second thing I would inform them of is that this is not a death sentence.

It's not a death sentence. You can live being HIV positive. You can live longer than most people being HIV positive. But you have to acquire the knowledge. You have to get a good primary care physician. You have to have a good support network in order to deal with this.

The stage in your life when you tested -- whether you're HIV positive or you have AIDS -- also plays a great part. If you test HIV positive, then you can go out and get the knowledge and help yourself and be healthy. If you test with AIDS and your T-cell count is really low and your viral load is going out the window, then I suggest immediately that you start medication, that you get a support network and that you get a therapist, because this is hard to deal with.

A lot of people say, "Oh well, I tested HIV positive a year ago and then I went and did this, etc." That's that one individual. Remember, everybody's different!

I used to be an HIV tester. I've tested people that wanted to pull my dreadlocks out. But I've tested people that, when I told them that they turned out HIV positive, they just sat and stared at me. I said, "Are you OK?" They said, "Yes, I'm fine," and they walked out. Some of them I never saw again; some of them I heard back stories; some of them went into treatment.

I think we need to put more stuff in place for those that test positive, especially today. It's definitely needed, because there's so much going on in the world, so we need to assist people who test positive a little bit more. We need to give them factual information and lots of support -- that's the most important thing. First you give the support, then you deal with the meds and everything else, but the support is necessary.

It's like having a good girlfriend. If you have a good girlfriend, you can tell your good girlfriend anything. You may not tell your husband everything, but you'll tell your good girlfriend anything. Get a good girlfriend or a good boyfriend to support you.

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Yolonda Reed, Fort Lauderdale, Fla., diagnosed in 1989

I can remember when I was diagnosed. It was 1989. Because HIV wasn't out in your face the way it is now at the time when the doctors told me that I was positive, I was like, OK, well dang, now I can't go into the military, which is where I was headed. I called my mom at work and she passed out, but I couldn't understand why she was passing out. Now today I understand.

I would also tell someone who's newly infected that, guess what? You have a choice. You can either die of the virus or you can live with the virus. I would say, "Choose the latter. Choose to live with the virus. Go get health care. Get your nutrition right. Take care of yourself. That's it."

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Damaries Cruz, Deerfield Beach, Fla., diagnosed in November 1991

I went to a women's group. The first thing this lady said was, "I've been diagnosed for a year, and I don't think I'm ever going to date again and I'm never going to have sex."

I remember I looked at her and I said, "No, you'll be OK. You watch, in another year you'll be fine." The next year she met someone and they're already living together. I said, "You see!" The person was HIV negative.

There's hope! You're not HIV. You are you. You have a soul just like everyone else. When I was diagnosed as HIV positive, a person that was positive came into the room and I didn't care what she was saying because it was not her, it was me. But I realized that there's hope. There's life after HIV. Your life doesn't stop. For me, my life began. I stopped smoking, I stopped drinking, I changed my life around.

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Tracy Bruce, Atlanta, Ga., diagnosed in 1990

If someone came to me after just being diagnosed with HIV, I would tell them, first off, that it's not the end of the road.

That there's life beyond HIV. There's life, there's love and anything is possible. I have a firm belief that health begins with your state of mind. First of all, keep a good state of mind. Stay on top of meds. Live life like you would and protect yourself and your partner.

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Bernadette Berzoza, Denver, Colo., diagnosed in September 1989

Don't give up. Don't feel alone and ashamed. Reach out!

If somebody reaches out to you, accept their support. Because people that reach out to you really do want to help. You don't have to give up!

That was my determination. I wasn't going to die. I was going to be here for my kids in the beginning. Then I said, no, I'm going to be here for my community, because they need to become aware and they need to be educated.

I need to be here. I don't want to die. I want to be alive. I want to see my kids grow up. I want to see my grandchildren. I want to see them get married. You know, I wanted to do all those things. I want to be here.

I think the scary part about it is the unknown. That was my big thing. I was so afraid about, "How's it going to be if I get sick? How's it going to be if I get sicker? How's it going to be if I die?"

I used to live day to day, week to week, month to month, year to year. Now I don't; I'm just like, "I'm going to live." If anything, live your life to the fullest. Don't let this disease take control of you, or your mind or who you are. Be who you are!

It took me a long time to struggle and get to this point. I tell people this when I'm telling my story. I didn't have a substance abuse problem. I didn't have a mental problem. I didn't have other factors, you know, other than society and domestic violence. But I didn't have those other things that sometimes make it harder too, if they find out that they're positive. That's why [the organization] Sisters of Color United for Education is here; that's why I'm here. I'm here to try to help make it through those things in any way. There are other people out there that are trying to do the same thing.

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Heidi Nass, Madison, Wis., diagnosed in 1996

I don't know what advice I would give them. I really try to listen to where people are at.

I mean, it's no coincidence that one of my least favorite expressions -- and my husband can testify to this -- is, "You know what you need to do," because my reaction is always, "Really? What do I need to do? You know my situation so well you're going to tell me what I need to do?"

I'm interested in hearing what you think I should do, what's helped you. I'm very open to that, but for someone to say, "You know what you need to do, here's what you should do," it just rubs me all wrong. I couldn't possibly know someone well enough to say that. I find it surprising sometimes that people are so quick to do it.

I really just try, frankly, to listen. I'll ask someone who's newly diagnosed, for example:

• What do you find yourself thinking about?
• What would you say is your dominant feeling lately?
• Are you feeling sad?
• Are you feeling excited to figure this thing out?
• Are you feeling anxious?
• What are your friends saying about how you're doing?

Everyone's different and people articulate different things. In doctors' offices I think sometimes we, the staff, feel like we know this person. We don't know this person! We know the person who comes to us to go to a doctor's appointment. We don't know the person when they leave here, we don't know that person when they're with their partner or their children or friends or at church. We don't know them. We're not the same person in that doctor's office that we are when we're talking to our best friend on the phone. For us to think we know this person very well is really a false presumption. I don't think it's possible, mainly.

I think we can get to know people very, very well and create a safe place where they can be themselves. From there, we can go great places. I'm just very cautious of imagining I understand somebody just because we happen to share a diagnosis: "Here's a little tip sheet that I've come up with for you based on my experience."

I try to share these things when they're appropriate and when people ask me, but I'm really more interested in figuring out where they're at and, from there, sorting through with them where some places to go from there might be. I suppose if I'm doing anything in those first visits it's just by my very presence as someone who's now been infected with HIV for 13 years, demonstrating that one can be healthy and engaged in a life they love and have HIV. I want them to know that that kind of life is possible for them. If I'm doing anything consciously, I'm aware that that's probably happening.

I want to role model. I want them to know that based on their experiences with me, at least, there's many different ways to do this and there's lots of information. There are a variety of ways to stay healthy and well, and places to get assistance with any part of it, and that this can be, ultimately, an opportunity to do things that maybe, on some level, you always wanted to do differently and just never did.

HIV can really change people, because it presents this opportunity to ask a very conscious question: Who do I want to be with this? I felt like it was, in a way, a wake-up.

As I said, I don't think I did anything differently than other humans in terms of how I got HIV, but I feel like there's always an opportunity to say, "How did I get here?" Always. No matter where you are. Whenever it's someplace you're not particularly happy with or pleased by or it feels very good. It can be that experience for people if they allow it to be. For me, it brought into very sharp relief what's important.

I used to joke in a dramatic way when I was newly diagnosed: "I don't have time for that." It was a joke and I was being flippant but, at the same time, part of it was true. I really felt like, "OK, how am I going to do this? What is important? Who's important?"

HIV allows you to see, through people's reactions, who they are. Trust me, if they reacted with fear to this, they're going to react with fear to other things. It's a good thing to know. It doesn't mean you have to ditch them or you can't work through it, but it's good to know. I don't see any harm in knowing. It can be painful, sure, but pain doesn't kill us. There are many, many places to go with this diagnosis that we might not have gone, frankly, without it.

If someone said to me tomorrow, "We're here to take away your HIV." I would say, "OK!" I really wouldn't hesitate a moment. I would also, after they left, probably start grieving some things that I really feel I got through having this diagnosis that I'm not convinced I would have otherwise gotten. That's my personal belief for me.

Meaning not focusing on petty stuff, things like that?

Yes. Bringing people I valued closer to me, paying attention, trying to be more present, which is a constant challenge in this world, especially for over-thinkers such as myself. But being aware, life is short. No matter what you have, there's not a lot of life. There's a lot to be present for and enjoy, take in, and be grateful for. For me, it was a bunch of that, and it was also being very conscious of my time. What's worth my time? That's probably the place I noticed it the most, what's worth my time. Some of it was just given to me in terms of understanding who people are based on their reactions to my diagnosis, for example. That's something I just started noticing: Wow, this is really something. This is a good way to sort out where somebody's at.

When I was newly diagnosed and I complained to a friend, saying, "Who's ever going to want to be with me? Now I have this" -- she would say, "Are you kidding me? You have supreme quality control right now. You get to find out really quickly what somebody's made of. You don't have to mess around. You don't have to waste your time."

In a way, I think she's right. You don't have to waste your time.

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Loreen Willenberg, Sacramento, Calif., diagnosed in 1992

I would tell someone who just found out that he or she was infected with HIV: "Don't forget to breathe."

Knowledge is power. Now we have the Internet. There's just an amazing volume of information out there, thanks to websites like TheBody.com. There's just so much great and accurate information that we can access, compared to what there was 15 years ago when I was diagnosed.

I'm a book reader, so I grabbed books off the shelves like crazy back in 1992. Also, I would say, maybe if their health is up to it and their psyche is up to it, not to be afraid to find out ways that they can become involved. Not necessarily always on the political level, because that can become overwhelming in itself, but seek out support. Use a hotline if you don't want to have your face out there. There's all kinds of things available.

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Alora Gale, Boulder, Colo., diagnosed in 1992, at age 6

Hang in there! It's a long road but you'll make it, hopefully.

It's hard to say. It really does depend on the person, but definitely hang in there. Look for the silver lining to the dark cloud -- it will hopefully show up sooner or later.

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Precious Jackson, Los Angeles, Calif., diagnosed in May 1998

The advice that I would give a person who just found out is to not get stuck in the depression ...

... and don't get stuck in your work because that will allow you not to deal with the situation -- it keeps the focus off it.

I would recommend they take a little time off to regroup, find out the services they need and can access. There is help out there, whether you're newly diagnosed or living with HIV for a while.

There is treatment available if a person needs to be on medication; there are support groups; there are mental health services. Once you have all the services that you can access, then you can slowly move your way back into your normal routine. I wish I could have gone straight to Women Alive as soon as I was diagnosed. But I was always working.

I think what works best is when a person understands the importance of health care and of their HIV treatment regimen, how the treatment works in the body and how it suppresses the virus so that the immune system can be boosted.

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Michelle Lopez, Brooklyn, N.Y., diagnosed in May 1991

To not segregate themselves, and to seek out and find a community of us who are living with HIV and doing something about it.

Because we are a family and we still need representation of those of us infected to be within the decision-making. When you talk about HIV and AIDS affecting blacks and Latinos and immigrants -- if you look at all of us, we already have some kind of strike against us, and now HIV comes into the picture. So those of us who are infected, we gotta do double the work. Each of us can teach a newly diagnosed person out there something to give them that hope and that menu of survival. We must pass it on.

What is the best response you have ever gotten from telling someone?

That I have given them a chance to save their lives. I will continue to save lives.

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Raven Lopez, Brooklyn, N.Y., diagnosed in 1991, at age 18 months

I would just say, "Keep trying. I understand how you feel because I went through the same thing. But you just gotta keep your head up. You're still a human being -- but there is just this one thing, that we have the virus."

What do you think is the first thing someone who has just found out they are positive should do?

If they think that they are [positive] already, they should talk to a psychologist, set up somebody to talk to. Let it out and stuff. Don't do nothing stupid or hurt yourself. I would tell them to talk to somebody -- or they could even come talk to me.

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Kathleen Gerus-Darbison, Macomb, Mich., diagnosed 1985

If you can, talk with someone who's been living with HIV for a while.

The diagnosis is terrifying, and doctors aren't always all that good at explaining everything even if you are in a position to hear it, which when you get your diagnosis, you might not be. You're still the same person you were before you got your diagnosis, too -- it's hard no matter what, so remember that you're still the same person dealing with the same things you were dealing with before you got your diagnosis. Connect up and get the support you need.

What do you think is the first thing someone who has just found out he or she has HIV should do? What's the second thing?

First thing: Talk with others who are HIV positive for the perspective they can offer.

Second thing: Find a doctor who will listen to you! Clinical skills alone don't make someone a good doctor -- I've fired doctors because they weren't listening to me. You have choices, especially with treatment -- talk with a long-term HIV-positive person and pick their brains.

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Joyce McDonald, Brooklyn, N.Y., diagnosed in 1995

There is hope. There are many support groups and there is help available.

Don't panic! Pray and get information. Some people turn to drugs, others hurt themselves. But I say, "Hold on, you're not alone. There are more people than you think out there with HIV." Get some spiritual support, from God and from your family.

In the early '90s, many people in my Brooklyn housing project believed that if you found out you're HIV positive, you've gotta hide. I know a lot of stories where people were feeding their HIV-positive family members from outside their bedroom doors or saying, "You can't live here." Fortunately many of those attitudes have changed over the last decade, because ministries have been taking the stigma out of AIDS.

I've been coordinating my church's ministry for the last three years now. I felt it was my responsibility to give something back, to help others who weren't lucky enough to get the kind of family support I had when I was diagnosed.

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Regina Brandon, Los Angeles, Calif., diagnosed in 1986

My tips for the newly diagnosed are: Keep your head up! HIV is not a punishment.

There's life after HIV! Don't let it monopolize your life! It's very important that you learn to love yourself. Live, because no one else can or will do you better than you can do you. There is no concern for blame -- the concern is, "How do I live?"

Also, make sure that you understand what you're being told when you receive your diagnosis. I'm so glad they aren't allowed to give you that news over the phone anymore, because you really need to get them to sit down with you and make sure you understand what that test result means before you leave.

I've seen my hospital records from 1986 now, and it was written that I was HIV positive. But I didn't leave knowing what the things the doctor told me really meant. It took me four years to get that information straight, and during that time I was doing dangerous things with people. I'm grateful that I didn't infect anyone, but I would have to say I wouldn't feel totally at fault -- I didn't know I had HIV.

I believe each person is responsible for themselves. If your partner won't use protection, you can.

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