Tips on Dealing With an HIV/AIDS Diagnosis

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Take a deep breath. Don't hang your head. Reach out for support. You're not alone. Over the years, dozens of gay men living with HIV/AIDS, or working in the HIV/AIDS field, have shared experiences and advice in response to the question: What Would You Say to Someone Who's Just Been Diagnosed With HIV? Read on for samplings of wisdom from a diverse range of men in our community.

Gary, Ft. Lauderdale, Fla.; Diagnosed in 1992

I think the most important thing is to keep your cool as much as you can and to try and educate yourself at your own pace -- because it's important to learn about what your options and your treatment possibilities are. Having gone through this myself, you have to not overeducate yourself, because the brain can only absorb so much at a time. But I think the important thing is to constantly be becoming aware of what the options are. That HIV is no longer a death sentence, but that it is something that you have to take care of for the rest of your life.

Jahlove Serrano, New York City; 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.

Joe Ohmer, Bronx, N.Y.; Diagnosed in 2002

There's a whole bunch of ways you can react once you've been diagnosed. Some people think, "I have nothing to live for." And they go crazy. They do everything they've always wanted to do, be it smart or not smart. So I would try to get them to realize that it's not a death sentence. It is certainly much more of a living condition. I would also try to show them the wisdom of becoming a student of HIV because certainly, in this case, knowledge is power.

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HIV affects everyone differently. And as much information as you can absorb about the disease and its intricacies, the more powerful you are in dealing with whatever pops up in your life, so that you're not afraid of it -- if all of a sudden something happens, you're not, like, "Oh my god. I am going to die."

Also, get yourself to an HIV clinic. You may trust your family doctor, and he may treat other HIV patients, but HIV clinics deal with thousands of people with HIV. If your family doctor deals with 50, I would think that's a lot.

Rashad Scott, COMHAR's Community Living Room, Philadelphia

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.

Jack Mackenroth, New York City; Diagnosed in 1990

I would definitely say, first of all, take a deep breath. Don't freak out too much. There's a lot of information out there.

Then I would suggest meeting with a doctor, regardless of what the next steps are. But I think you need to form a relationship with a doctor. Then get your blood work done. Pay close attention to your blood work with the ultimate goal of getting on meds if you need to and working on an undetectable viral load. That's very key. That's really worked for me.

Enrique Franco, Tucson, Ariz.; Diagnosed in 2007

Initially, I was paranoid.

All of a sudden, I didn't want to hug people. I felt like I was an alien or whatever. I didn't want to get anybody sick or anything like that. At the same token, I demanded people to hear me, to say, "Hey, I have HIV now!"

My mom, she still gets on me. She says, "Your HIV does not make you who you are as a person. It does not define you."

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Today, honestly, I can say that I treat HIV like it's a pebble in my shoe. I have it, and it's going to be there. I can't take off the shoe and dump the pebble out. It's just going to be there. It bugs me sometimes, but I just have to learn to live with that.

I just wanted to let the young ones, the ones that are lost or scared, know not to be scared. If they just got diagnosed, I don't care how old they are, 18 years old or 50 years old. This is a scary thing, but I don't want anybody to feel scared or anything like that.

I'm not a doctor, but the best diagnosis for me -- and I really think it is for anybody -- is not to put your head down. If you put your head down, you're not going to win. In order for you to combat HIV successfully, you've got to say, "You know what? This is my body, this is my life. I'm not going to stop living. I refuse to put my head down."

I think if I could generate a message to everybody who has just been diagnosed with HIV: If they have that little inkling of hope in their minds and in their hearts and they let the seed take, it'll grow into this big tree that HIV will not be able to cut down at all.

I really get offended when I hear somebody moping about, "It's sad, and I want to feel sorry for myself." You don't have time for that. You really don't. You've got to just keep pushing forward. It's OK to be scared, just don't hang your head!

Keith Green, Chicago; Diagnosed in March 1994

Tap into whatever support networks are available. I know that's what kept me alive -- the support of my family, friends, TPAN [Test Positive Aware Network, an HIV/AIDS organization in Chicago] and the support groups. And educate yourself.

When I was first diagnosed, I thought I needed to live as if I were about to die. I dropped out of school, focused more on working full-time and partying. I was just kind of existing. And then I got to a point where I realized there were medications available that could help me live longer, and I just started to change my whole outlook.

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

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.

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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.

David P. Lee, Seattle; Diagnosed in 1995

My advice to people who have just been diagnosed is to be good to yourself for a while.

If you are getting high and drinking a lot, it's time to stop, because you'll die faster if you don't. Get a good support system together through family, friends or wherever you can find them. Learn as much as you can about the disease.

Mark S. King, Fort Lauderdale, Fla.; Diagnosed in 1985

When you first get diagnosed, everyone is going to be telling you, "It's not so bad. Medicines are better than ever. It's going to be OK. There's so much that can be done for you."

While all that is true, it's also true that it is a freak out and a life-changing experience. If you need to grieve for the fact that you are no longer HIV negative and that you have had this major medical thing happen, then go right ahead. If you need to freak out, if you need to adjust to this new reality in your life, take the time to do that because it's perfectly understandable. Then move on and get started. Don't let that freeze you in your tracks.

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You're going to have to find a partner in health care -- a real partner in health care. One of the big lessons that I learned with HIV -- that most of us learned -- is that it's a partnership and that doctors are not always right. A lot of times, you're the one who's got to be listening to your own body, asking questions and offering other options for yourself.

You'll know what I mean as you move through the health care system and as you start to face all of these decisions regarding when to start taking drugs and which ones you want to take and how each of them affects your body.

Rafael Abadia, Palm Beach Gardens, Fla.; Diagnosed in 1993

My main advice to someone just diagnosed is to always try to seek a good counselor, a good therapist.

Just to have that one person who's impartial, who's not a family member, a partner, a lover, who you can really share your deep, deep emotions with. Because it is hard. It is extremely hard. And it's good to have that outlet.

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So don't be afraid to ask for help. There's help out there. There are people who are willing to help and to listen. And if you could get connected to another person who's HIV positive, just to talk to them, that's an excellent thing to do. That's why I like these buddy programs, or peer programs. I find them to be extremely useful. I can speak for myself, as a peer. We think we're helping other peers, other people with HIV, but many times they're helping us, also.

So, if you can, get to a good counselor, and try to connect with other people living with HIV and AIDS, because they could help you.

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.

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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.

James Nicacio, Selma, Calif.; Diagnosed in October 2001

What I would want to tell people who are newly diagnosed is that it's OK.

All the emotions that come up when you're first told that you're diagnosed are OK. Take it day by day. Everybody handles it a little differently. Some people are able to accept it and some people are not.

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The most important thing would be to probably find somebody to talk to, whether it be a family member, a doctor, a nurse, a peer advocate. Talk to somebody, work through some issues, ask all the questions that come to your mind, educate yourself and really learn about what HIV is and learn about what you can do to stay healthy. This may mean making your doctor's appointments and taking your meds if you need to take your meds. Learn how important it is to stay adherent to your medications so that you can lead a full life.

Today, I can say I'm leading a full life. At first, when I was told I was HIV positive, I thought that I wasn't going to be able to have all the things that I wanted, I wasn't going to be able to get a good job, I wasn't going to be able to own a house, I wasn't going to be able to do all these things. Today, I can say that, yes, I can still have all of those things, living with HIV. I can have everything I ever wanted and lead the full life that I've always wanted to lead.

Butch Thompson, Atlanta; Diagnosed in 1986

I would tell someone recently diagnosed to interview their doctors.

They should make sure that they have a great relationship with their doctor and seek out other people who are diagnosed so that they will understand that this is not a life sentence, but rather there's hope involved. You can live and have a productive life with HIV.

Kenyon Farrow, Queers for Economic Justice, 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.

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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.

Roger Solar, San Antonio; Diagnosed in 1999

Support groups. There are support groups coming up all over the place.

You can look in the yellow pages, you can look in the Gay Yellow Pages, you can get on the Internet. I wholeheartedly support these groups. I think it's an asset because you need people who have been there, have gone through it, or are going through it. You become more comfortable as to "What's going to happen to me? What do these meds do? Where can I go to get food from the food bank? Where can I get help with my medication?"

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I didn't know where to go. I spoke to people that were infected and they were like, "You can go here for medications. If you need food, you can go to this food bank." They were helping me out in a lot of ways that I didn't know.

You can't go into it by yourself. I don't care what anybody says. You can't. There's just too much stress to do it alone.

Ahmad Salcido, San Francisco; Diagnosed in September 2007

If someone comes to me and tells me, "I'm HIV positive," I would say, "Well, how are you feeling? What's in your head right now?" When you get tested and when you get tested HIV positive, all that's in your head is a conundrum with a huge question mark. You have no answers. You have many questions, but you still cannot understand what questions those are and you have no answers. That's how I felt.

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I would say, "Hey, I'm HIV positive too. This is a new beginning. It's not as bad as you think it is. Here's my number, my e-mail. Please do not hesitate if you have anything, call me and I will do whatever I can to fulfill your request. In the meantime, I'm going to tell you a little bit about my life story. I'm going to tell you what agencies I went through. Give me the opportunity to talk about my experience from day one -- which is being recently diagnosed. I hope by telling you my story, you will find some answers through my story."

I don't think anything works out better than when you have an HIV-positive person who just barely found out they were positive today and you talk to them about your story. That would be the best help I could ever give to anyone.

Fernando Castillo, San Francisco; Diagnosed in 1993

My ex-lover, who is still my roommate today, is still negative. I said to him, "Baby, I give you back exactly the way I found you, because I have never put you at risk."

Protection, that's my message. Protection, love and care. People with HIV are like negative people: We need love around us.

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I would say to someone just diagnosed to reach for help. To get support. To see that he or she is not alone. That we are so many people who are positive navigating together in this. When he or she finds that group of people, it will be completely another game and it will be very positive, very supportive. He or she will find love and support; and, more than anything, the health that he or she needs.

Open up! I ask them to open up. Open up and look for help. Because the help is there, the love is there and the compassion is there.

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 left 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.

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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.

Rigoberto Maruri, San Francisco; Diagnosed in 1991

What I say to people just diagnosed is that there is hope.

Now there are a lot of drugs available, but you also need to take care of yourself. Take your medications on time. Eat and sleep regularly. Have a job and find something to do, because if you keep yourself busy, it keeps you healthy.

Ruben Echeverria Hernandez, San Francisco; Diagnosed in 2002

I'd tell them no alcohol, and no cigarettes and no drugs.

Make sure you take your pills if you have to take pills. Ask your doctor. All the kind of good stuff I keep talking about -- good diet, no stress, be more happy, don't be too sad, don't be too angry. Everything's going to be OK.

I have a psychiatrist who told me that I'm going to be OK. He gave me hope when I was diagnosed. He told me that if I believed him, and did the things I was supposed to be doing, I'd be OK. It took me many years to feel the OK part, but I feel OK right now.

Brian Datcher, New Haven, Conn.; Diagnosed in 1996

My advice to someone who just found out that they're positive would be to tell them, don't feel like it's your fault that you made a mistake, and it's your fault and that life is over.

Life is not over. Seek support wherever you can get it, from somebody you can trust or confide in. Even if you don't have social support, there's other professional support you can get, either through case management or through your doctor.

If you believe in anything, try to draw from whatever you believe in. Try to use that as your strength. Take your time. Don't rush. It doesn't happen overnight. It's a process, but there's light at the end of the tunnel.

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

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.

David Garner, Houston; Diagnosed in 1993

You don't have to worry about dying today.

Because dying is something we cannot bank on. We know it's going to happen; we just can't put a time on it. So you don't have to put a time on it now.

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.

Bishop Kwabena Rainey Cheeks, Washington, D.C.; Diagnosed in 1985

First, look around and see that people are living well with HIV.

Then take your time to educate yourself about the virus, your health, and treatment options -- separate the facts from your fears. Definitely get a basic understanding of what your viral load and T-count are.

I know someone who was ready to go on meds and his CD4 counts were 900, which is as high as a healthy uninfected person's. I said, "What are you going on meds for?" He said his doctor wanted him to, and he agreed out of fear and ignorance. I said, "You need to find someone who specializes in HIV." He asked me to go tell that to his doctor, and I said, "Sure."

The best thing is to talk to other people who have HIV, and find a doctor who is an HIV specialist. And take care of yourself.