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World AIDS Day 2009
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From Me to You: Tips on Dealing With an HIV/AIDS Diagnosis

HIV/AIDS Advocates Offer Their Tips

Click here to view our collection of tips from HIV-positive people.

Juana Clarke

Juana Clarke, Waterbury Hospital, Waterbury, Conn.

Getting diagnosed with HIV doesn't have to be the end of your life. That's the first thing. There are medications; there are things that you can do to save your life. You can have a very productive life. You can have a good life. But you have to pay attention.

Again, this isn't about blame or anything like that. If you want to have a good life, you can have it. You're going to have some limitations on that, obviously. You're going to have to work for it.

Right now, in our clinic, the majority of people who have died have not died from HIV disease; they died from chronic diseases. It's the same thing to me as women who refuse to have a mammogram, because it squeezes them [their breasts]. Give me a frigging break! It's a one-minute thing! This is about your life.

I think it's the same thing. HIV is more becoming something of a chronic disease, so you have to be just as vigilant as you would be if you had high blood pressure or diabetes or something else. You have to pay attention, but you can save your life. It isn't the end.

Wendy Torres

Wendy Torres, HIV/AIDS Advocate, Atlanta, Ga.

I would reassure someone newly diagnosed with HIV that it's not a death sentence anymore like it used to be. I would just let them know that there is hope. There are a lot of places where you can seek medical attention.

There's a lot of information out now that can help you understand your diagnosis and know what's available to you, what type of care you need, what to do with regards to your day-to-day life, what changes you need to make.

When someone comes to you after they've found out they're HIV positive, it's like: "Oh my goodness! Why me?" You start going through all the different emotional stages that you go through. But just be reassured that there is hope, there are medicines; there's a lot of medical technology out there! There's definitely hope and this is not the end.

Cortez Jones

Cortez Jones, HIV-negative son of HIV-positive mom (Mom was diagnosed in 2002), Atlanta, Ga.

I would tell someone just diagnosed with HIV: "Go get help and don't give up."

Because even though there's not a cure for HIV, there's still something that can help them survive!

Reverend Sandy Rogers

Reverend Sandy Rogers, HIV/AIDS Advocate, Atlanta, Ga.

If someone told me they were just diagnosed with HIV, I would let them know that having the virus is not a death sentence.

That they are still a loved, worthy, whole, complete child of God. That it is not cause for any type of negative concern, nor does it have to end in death. That if they receive the right resources and the right support and medical attention, they can live 20 and 30 years, plus. The individuals that I'm currently working with have very high survival rates.

Bethsheba Johnson

Bethsheba Johnson, Luck Care Center, Chicago, Ill.

I'm seeing a lot of young men who have sex with men who come in for one or two visits and then they drop out of care for six to nine months. We don't know exactly why that is, but that's my latest population that's coming in. Seventeen-, 18-, 19-year-olds come in once or twice. They're in shock. They may be in denial. Then they drop out of health care.

The one thing I would do -- and what I do with my patients now -- is let them know that they need to stay in health care. They may not be ready for medicine at that time, but it is important for them to be monitored, for us to look at their lab results and see how they're doing, so that we catch them in time to start them on medication before they end up with AIDS diagnoses or opportunistic infections that will further damage their immune systems.

Paul Cotten

Paul Cotten, Transitions Project, Center for AIDS Prevention Studies, San Francisco, Calif.

There are a lot of factors, but all things being equal: If HIV-positive people respond well to HIV medication and can adhere to medication -- and other issues in their lives, which may be more pressing, can be dealt with (for example: Are they employed? Do they have a support system?) -- I think they're going to live long, full, healthy lives. It's not the death sentence that, even nowadays, people still tend to think that it is. I know lots of people who have lived many, many, many years with HIV and are doing fine and doing very well.

I think it becomes a small side job that you have to manage. Initially, there's a lot of information to learn. It's easy to feel overwhelmed by that and it's important to do that in a supportive environment so you can process: a) on lots of different levels; and b) in a slow fashion, feeling supported.

Ingrid Floyd

Ingrid Floyd, Iris House, New York City

The first thing that comes to mind for someone that's newly diagnosed is that people don't have to die from HIV/AIDS. If you go see a medical physician, discuss the treatment plan and follow the treatment plan that the doctor gives you, you can live as long a life as anyone else who is not HIV infected.

There are so many options around treatment now that it's easier to maintain your treatment regimen. It's also easier to maintain a healthy lifestyle and not have to die from HIV/AIDS.

Rashad Scott

Rashad Scott, COMHAR's Community Living Room, Philadelphia, Pa.

What I would say to someone who was newly diagnosed as HIV positive: I think the biggest thing is to be earnest and honest and sincere with a person, and encourage them that they can live with the disease by giving some examples.

It's very difficult to find exactly the right words to say, because it's a loss. Someone's going through loss and grief at that time, and we all know that there aren't really any right words to say. But to be a presence and to listen would be the first thing to do.

Kizmet Cleveland

Kizmet Cleveland, Americorps VISTA, Cleveland, Miss.

What advice would I give someone who just found out they were HIV positive? One thing I would recommend -- even though it may be hard -- is that they tell their family first, before they go and feel that it's the end of the world. If they need to, they could go to counseling; or find someone in the field, or someone who is living with HIV, that can give them advice on living with it.

Jorge Zepeda

Jorge Zepeda, San Francisco AIDS Foundation, San Francisco, Calif.

I'm going to talk from my experience working with recently diagnosed individuals. One thing that I notice is that the person who is newly diagnosed has fear in terms of: "What's going to happen to my body? Am I going to die? How am I going to deal with my family and my HIV status?"

They feel ashamed. They feel in shock. They feel alone. They feel guilty.

The person that's willing to work with them says, "You're not alone! There are treatment options! You could access services! You have access to treatment." There are also support services to help deal with the emotional shock.

Nyrobi Moss

Nyrobi Moss, SisterLove, Inc., Atlanta, Ga.

What is the most important thing that someone newly diagnosed with HIV should know?

Get help! [laughs] The reason why I say that is because a lot of times we find that people that are newly diagnosed all go through different phases. Anytime we hear of anything major and/or traumatic in our lives, we go through the phases. First, we're OK. Then, second, we can't believe it. The next thing, we're mad. So we go through these different gamuts of emotions.

Support is always, always important, even if you can't disclose to your family because disclosure is going to be a hard thing. Even with all the stuff that we know about HIV now, people still have really big issues with disclosure because they're afraid of how somebody's going to see them. There are a lot of people living with this virus. You can live with it and you can be positive. HIV is not the death sentence that it once was, but having a support network first and foremost is ridiculously important.

Christopher Roby

Christopher Roby, My Brother's Keeper, Inc., Ridgeland, Miss.

I would tell someone who was just diagnosed with HIV/AIDS that this is not a death sentence. With new medications out and all these new developments in HIV work, people are living with HIV longer than people are living with hypertension, diabetes, cancers.

I always tell my clients when they find out that they are positive that you can compare HIV to cancer. If you had cancer, you would have a shorter period of time to live, because cancer deteriorates your body. With HIV, you can take your meds, you can look just as normal as anybody else. There are no known symptoms of HIV that you can visibly see, so this is not really a disease that has to determine who you are or where you're going in life.

It's just like another thing that you have -- you can be born with a history of hypertension in your family. So that's how I look at it, and that's what I would tell them.

Kenyon Farrow

Kenyon Farrow, Queers for Economic Justice and National Gay & Lesbian Task Force, New York City

The best thing for people to do when they're are newly diagnosed with HIV is, first of all, if you don't have health care, figure how you can get some, whether it's Medicaid, or you need ADAP [AIDS Drug Assistance Program] or any of those supports.

Also, if you have health care through an employer, figure out what they will provide. You also need to figure out, in the state that you live in, whether or not you can actually be kicked off of your health care plan because of a "pre-existing condition," and HIV often falls in that category. I think doing that kind of homework up front is going to be really important.

Number two is being able to find some kind of support -- there may be groups that meet near you for people with HIV. Sometimes there are groups for people who are newly diagnosed, or special groups for family members or different religious backgrounds. These groups help people deal with all of the emotional stuff that they go through when newly diagnosed.

Mawiyah Coates

Mawiyah Coates, Ruth M. Rothstein CORE Center, Chicago, Ill.

I know and I believe and I live every day that HIV is not a death sentence. It's just a new way to live.

Robert Williams III

Robert Williams III, Center for AIDS Prevention Studies, Oakland, Calif.

That's a tough one for me. A good friend of mine was diagnosed a couple of years ago and I went with him to get his test. At the time that he got the test, we were sitting in the lobby of the testing place and he had received his diagnosis. He didn't say anything to me, so we got through it and, me just being me, assuming that the test came out negative, we leave the place. I was like, "OK, do you want to stop somewhere and get something to eat or just hang out?" I didn't ever really think to ask him the result of the test. When he told me that the test was positive, it kind of blew me away.

We just stopped right there where we were. I said, "We'll stop, because I can't move right now. I don't know what's going on with you. For me, that's really profound that you've just tested HIV positive." I'd never been with anybody when they tested positive before. We went back to the car and he had a real good cry.

If a friend of yours tells you that they're positive, I don't think that there's necessarily anything that you need to say to them. Just continue to be a friend. If they need a shoulder to cry on, be that shoulder to cry on. If they need somebody to talk to, be that person that they can talk to. If they don't want to be bothered with it, don't want to discuss it, be OK with just still continuing to be their friend. I think people always need friends in the world.

Vera Harrison

Vera Harrison, Love Heals Ministry, Wilmington, Del.

What would you say to someone that has just been diagnosed HIV positive: It's hard to say that you would say much. I think it's important to be consoling and listen for the pain that may come out of it. You just respond to them, mostly.

If you're in the counseling and testing position: If they have been counseled prior to testing, they should have been prompted to know what to do should the results come out positive. Because when people get told that they're positive, they stop listening after that. In the majority of cases, they don't listen after they're told, "You're positive." There's a whole flood of emotions and thoughts. Talking to them is just like talking to yourself. It just doesn't help.

It's good to listen for the reaction, to be observant, to be present with them. If you're present with them, then you can still service them as far as consolation. Because they should know, after they come out of that fog, if they have been prepared properly prior to the test results, that there's help, that they can live with HIV, that nowadays it can be medically manageable, and also that they're not going to die. It's not a death sentence. You can show them the ways that they can go after all of that is done -- after they've been told that they're positive. You want to be the person that they can call to help when they need help.

Cathy Lammers

Cathy Lammers, HealthStatRx, Pinellas County, Fla.

The advice I would give to somebody who is newly diagnosed with HIV would be, number one, to find support. Use TheBody.com; use the local community support. Most communities have some sort of support group. Really, truly reach out. Now is the time, I think, to reach out and touch somebody, open up, but be careful who you open up to. Do a little research. Get information from your local communities, the HIV support groups and the case management agencies, and read all that you can. Believe about half of it.

If you've already been tested and you're positive and you've developed symptoms, then get on a good HIV med regimen and follow it closely. Keep in contact with those that matter most to you. Get a plan and stick with it.

Michael Cerveris

Michael Cerveris, Tony Award-Winning Actor, New York City

I think the first thing someone should say is, "I love you and you're not going to be on your own.

"There are so many support groups and resources, especially online, like TheBody.com and others. There's so much information available to you.

"There's no pretending that you won't be facing a terrifying and profound challenge, but you're not alone facing it. And it's not a death sentence. It's not the end of the world, which is a wonderful thing. Hopefully, the world will find a way to end it. But, in the meantime, there's hope."

Debbie Hagins, M.D.

Debbie Hagins, M.D., Family Practice Physician, Savannah, Ga.

My tip for someone who's just diagnosed is, first of all, to take a deep breath and to accept the diagnosis. Do not condemn yourself to death or a less-than-good life. Do seek out health care at a reputable place. It can be a clinic. It can be a private practice. But please involve yourself with care somewhere.

The next thing would be to build a support system. From what I have learned from my patients, you need someone who accepts you as you are, to help you make this journey, because it is a journey.

HIV is not a curable disease, not yet. It does bring with it that burden of being diagnosed and people ask the question, "Why me?" So I would want them to build a support group or at least join a support group -- be their own support net.

Then, if they have the courage -- I couldn't say this because I don't know that I could do it myself: Become an advocate. Be a voice crying out in the wilderness that we want to stem the tide of this disease.

We want people who are HIV negative to stay negative. We want people who are positive to be responsible with their diagnosis, and to not knowingly infect others. For those who don't know their status, we want to encourage them to know their status, so they can also stop the spread of this very preventable disease.

David Bologna

David Bologna, Tony Award-Nominated Actor, New York City

If my friend called me and told me he or she was just diagnosed with AIDS, I would say, "I'm here for you. If you need anything, I'm here. It doesn't change my opinion about you. You're still my friend and I hope you get through it."

Norman Medina

Norman Medina, Gay and Lesbian Latino AIDS Education Initiative, Philadelphia, Pa.

My advice for someone who's newly diagnosed is just look for someone to talk to about it. It's not the end of the world. If you have access to the Internet, go to The Body. They have a lot of information on HIV, and really good resources for you. And the first thing, and the most important: You are not alone.

Carlos V. Rodriguez, South Texas Council on Alcohol and Drug Abuse, Laredo, Texas

In dealing with somebody that has just been diagnosed with HIV, our [organization's] job would be, basically, to help that particular person in all the different ways that we can, whether it's medical information, emotional, psychological information and support. We will do our best to try to address all the needs that this person might have.

Because this is a disease that a lot of people don't know how to deal with, obviously we will be very careful -- and I will be very careful -- about going through the process with this particular person, considering the different aspects of that. Once I've identified the different needs, I would try to address them as clearly as I can.

But I think that one of the main things I would like to do when I'm communicating to somebody who is HIV positive is to let them know that we will be there all of the time to provide all the support that we can: not only medically speaking, but also psychologically speaking and spiritually speaking. And we'll be there not only for that particular person, but also for the people that she or he is related to, whether they're relatives, partners, children, whatever it is, because I know that this is one of the things that they need the most.

This disease has a lot of stigma. There's a lot of misinformation, a lot of misunderstandings, so we will be there to provide all we can for that particular individual.

Etta MacGregor-Jones, Amani-Trinity United Community Health Corp., Chicago, Ill.

What I would say to someone who has just been diagnosed with HIV/AIDS is that they must immediately find someone that they love and that they trust so that they will have support. Because after they received this diagnosis, they need to be able to follow what the doctor has recommended. I think they can do that best if they have someone that they can lean on who will help them know what time they need to take their medication, and the other things that the doctor has recommended.

That would be my first advice. If they're not involved in a religious community, I would also suggest they try to get connected to a broader community where they'll find a greater level of support.

When I mentioned the religious community, that was one, but another one could be a community-based organization. There are many organizations in the community that now have been able to get the word out that they're there for people who have a need to be supported by them.

Randy Shenahan, Red-Rock North Behavioral Health Services, Oklahoma City, Okla.

What I would say to someone that's newly diagnosed is to keep their chin up; I'd encourage them that the sooner they get into treatment and care, the healthier their life is going to be.

Rosita Libre de Marulanda, High School Educator, New York City

I think that my first reaction if someone told me about getting diagnosed with HIV would be to say to them, "Oh, what a bummer. I'm sorry to hear that." I would tell them that I know people who are living with HIV for a long, long time. It may not be curable, but nowadays, people can make it through for a long, long time. It may be a little expensive, but there's Medicaid, and there are programs that can help them.

I would keep from asking questions like, "How did you get it?" [laughs] I think that is sensitive. If they want to tell me, I'll hear it, but I won't ask. That's it. It's their story.


 

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