Recently Diagnosed With HIV? African Americans Share Their Advice

Dealing with an HIV diagnosis on top of all of life's other challenges may seem too daunting a task to face. There's a huge community out there doing it every day, though, so to those who are recently diagnosed, you are certainly not alone. Over the years, dozens of African Americans -- HIV-positive folks and people working in the HIV field -- have shared experiences and advice for coping with a recent HIV diagnosis. Read on for samplings of wisdom from a diverse range of voices from within the African-American HIV community.

Terry Johnson, Birmingham, Ala., diagnosed in 1994

I would tell someone newly diagnosed with HIV to have a positive attitude.

HIV is not a death sentence. A person can live a long, healthy, productive life with HIV.

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Trevalle Ambrose, Atlanta, Ga., diagnosed in 1991

For someone who has just been diagnosed, I would tell them that you can survive.

I'm a survivor. I've been HIV positive now for 20 years. Just do what you have to do! Eat right. Have positive thinking. If you have to take medicines, be in compliance about taking your medicine. If you don't still do right, think right. Think positive.

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.

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.

Orville Mitchell, Atlanta, Ga., diagnosed in September 1991

The advise I would give to someone just diagnosed is that HIV is not a death sentence, just to go get medical help and stay focused on life. God will do the rest.

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?"

Larry Bryant, Washington, D.C., diagnosed in 1986

Just take a deep breath, because your immediate reactions might be to do something that will make the situation worse.

So it's like: think, and feel, and hold on. Don't panic! A lot of this is easier said than done, but just take a deep breath. And do as much as you can beforehand. If you're in a situation where you are knowingly getting tested, do as much as you can to equip yourself.

George Burgess, Atlanta, Ga., diagnosed in April 1995

I think the first advice is to be still, because it's what we call Day One.

Day One could be really, really frightening ... especially sitting back on the other side of the desk and getting the diagnosis. So the first advice is just to be still, because your thoughts are going to race.

Jahlove Serrano, New York City, N.Y.; Diagnosed in 2005

Take it in as much as you can, and then reach out to somebody that you know who won't spread your business. Get yourself into trainings as far as learning about your HIV status and how to help yourself.

That would be my key: Try to reach out for a training to educate yourself -- Cicatelli has trainings that definitely helped me. Educate yourself so you can know what's going on within your body.

Charlene, Washington, D.C., diagnosed in 2004

The advice I would give to someone who has just found out they are positive is this:

First of all, educate yourself about HIV/AIDS as much as possible! Don't leave it all up to the doctors. Please don't isolate yourself. Seek out help immediately. If you go to a clinic, ask for referrals to support groups or any information that they can give to you. Find a good HIV doctor that you feel comfortable with. A good doctor who cares can make all the difference in your treatment.

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Benjamin Young, Atlanta, Ga., diagnosed in 1989

I think the first thing they would need to do after being diagnosed with HIV is to go and see a doctor get a support system and talk to others who are HIV positive to see what they can do to keep themselves healthy.

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.

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.

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.

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.

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.

Bethsheba Johnson, Peabody Health Center/AIDS Arms, Inc., Dallas, Texas

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.

Kenyon Farrow, HIV/AIDS Advocate, 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.

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.

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.

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.

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, 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.

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.

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.

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.

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.