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From Me to You: Tips on Dealing With an HIV/AIDS Diagnosis
HIV-Positive People Share Their Experiences and Offer Advice
January 12, 2009
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View Tips From HIV/AIDS Advocates
We don't want to make light of what you're going through. Getting an HIV diagnosis may feel like the worst thing that has ever happened to you. BUT PAY ATTENTION TO THIS: There is life after testing positive. So, TAKE A DEEP BREATH. No matter how alone you may feel right now, know that there is a big community of men and women out there ready to provide information, support, advice and many other resources. Browse through these pages and gather strength from people living with HIV.
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.
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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.
Read more about Jack >>
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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 ... Read More >>
... 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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Enrique Franco
Manassas, Va.
Diagnosed in 2007
It's only been seven or eight months since I was diagnosed. Initially, I was paranoid. Read More >> 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."
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!
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Greg Braxton
Chicago, Ill.
Diagnosed in 1994
If someone came to me and told me they had just found out they were HIV positive, the first thing I would say is, "Allow yourself to grieve." Read More >>
You're going to feel grief. You're going to go through a process, and I'm just saying that it is a process.
You'll go on the dark side of the moon, but you will resurface. The main thing is to get linked with support -- you need emotional support. If it's drugs that you've been abusing, actually, you need help in that area. And you need medical support. You need to stay on top of this.
But I would say, just allow yourself to grieve, and then, when you get through grieving, realize that HIV/AIDS is no longer a terminal illness. You're not going to necessarily die -- if you take care of yourself. You can live a -- whatever a normal life is, I don't think it's a really normal life, but you can have some semblance of that.
It's going to take a lot of work, and a lot of effort. It's definitely going to change you. ... There are lots of ways it can actually change you for the better. I know it's hard to believe, but that's the way it was for me.
Read more about Greg >>
Connect with Greg >>
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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.
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Keith Green
Chicago, Ill.
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, ...
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... 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.
Read more about Keith >>
Connect with Keith >>
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Ed Viera
New York City
Diagnosed in 1987
The advice I'd give is that it's important to develop a support network.
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It's really important to have a second and third family. In my case, my family turned their backs on me -- they closed all doors. I had to develop support networks by going to HIV support groups.
Go to a library, just talk to people, get out there and stop being isolated.
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Teniecka Hannah
Colorado Springs, Colo.
Diagnosed in May 2001
I would tell them that, yes, there is life after being HIV positive.
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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 towards 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.
Read more about Teniecka >>
Connect with Teniecka >>
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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.
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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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David P. Lee
Seattle, Wash.
Diagnosed in 1995
My advice to people who have just been diagnosed is to be good to yourself for a while.
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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.
Read more about David >>
Connect with David >>
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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.
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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 ...
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... 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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