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 and gather strength from people living with HIV.
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.
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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.
It's only been seven or eight months since I was diagnosed. 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."
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, to 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!
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."
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.
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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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|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, 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.
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The advice I'd give is that it's important to develop a support network.
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.
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 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.
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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.
|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.
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.
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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.
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.
I would let them know that HIV is no longer a death sentence. It is a manageable chronic disease and basically, life is what you make it.
There's no need to get sick. As long as you do what you have to do. See the doctor and if you need to start meds, stay on your meds, follow the regimen and just take care of yourself. You could have a life. It's up to them what they want to do with their lives. You know, they could be mad or sad or they could be happy and glad and I've seen this disease change a lot of people for the good actually. I'm one of them. If I could change my life, anybody can change their life!
To those who have just been diagnosed with HIV, I want to tell them that life has just begun. One does not have to get sick. This is a chronic, manageable illness and, if you take care of yourself, you can have a long and good life. In my case, I am happier today than I was before. Taking your meds is like tying your shoelaces. Life is what you make of it.
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.
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.
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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.
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 into a good counselor, and try to connect with other people living with HIV and AIDS, because they could help you.
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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The advice that I would give you is it's not a death situation.
All you have to do is take it to the good Lord. Put God first and go to the clinic and everything will be all right. Everything happens for a reason. So don't panic, don't give up. Just get help.
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.
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.
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.
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.
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.
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?"
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.
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.
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.
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.
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.
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.
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.
Don't get into a corner and cry and lock yourself up. Come out of that little closet, because if not, it'll consume you.
There's a life out there -- no matter what you have -- there's a life out there. I love to go hunting, I love go backpacking, I love to travel.
What's funny about it is I have this disease, but I don't think about it, I don't dwell on it. I take care of myself, I do what I've got to do, what's got to be done. But it's one of the happiest times of my life.
I'm drug free, I've got my life back and I'm happy. I've got good friends as well.
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Diagnosed in June 1987
In my opinion, what they should know is get educated.
Get educated, find a support group, so if you need to talk to somebody, you could talk at the support group, 'cause there are people like you that are there -- people that are dealing with the same thing.
Also, I would say, get a doctor that is a specialist in HIV. Try to find that. That's an important thing too because not every doctor deals with HIV.
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.
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.
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:
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.
I would tell them to find someone that they can turn to. That's probably the hardest part.
It's them and their fears, blocking themselves and isolating themselves. They needed to find someone to talk to because to hold that inside for so long, and to keep that a secret is so detrimental to your mental health.
I'm under the conviction that mental health severely impacts physical health. I don't know how to speak from that perspective, because I was diagnosed at a young age. But when I turned 17 I harbored feelings of shame and asked myself, "Why won't anyone talk about this with me?"
When I went and met someone who had HIV, it was just such a relief -- or at least someone who was willing to talk about it -- because my family was not as willing to talk about it. I didn't look sick, and that's what everyone expects to see.
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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.
After being still, find some support. We know that sometimes family members are not receptive or don't understand HIV. When I told my mother I was positive, she had a negative response to it. But I had to realize that she wasn't educated. She had her fears. So, be still; then find some support. Get into some health care, and you can set a game plan. Then realize that it's not a death sentence; you can live with this.
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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 Web sites 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. [Click here for a list of hotlines]
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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.
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.
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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.
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|Barbara Choser Cusack, Florida, diagnosed in September 1996
Don't give up. Don't give up!
Find some good people to surround yourself with, a good church family or good friends. Especially people who are newly diagnosed -- don't give up.
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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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|Shelton Jackson, Newark, N.J., diagnosed in 1997
Basically, the advice I would give to someone who just tested positive is: You need to reevaluate your life because more than anything HIV makes you focus on what you haven't done, what you want to do, and the importance of time -- you no longer have the luxury of it.
So it really just makes you focus. You have to make the decision whether you want to live or die -- because if you don't do anything about your HIV, you're going to die. So if it's "I wanna live," then take the steps in order to keep yourself healthy, and not just live, but live the life that you wanna live.
What is the first thing someone who has just found out they have HIV should do?
Call your best friend and pour your heart out and tell him, "I need a hug ... come get me."
|Matthew Seymour, Dallas, Texas, diagnosed in 2004
First, go to your doctor, or go to an AIDS organization and find someone to talk with about your condition.
We talk with clients about this all the time -- so many of them aren't diagnosed until they're in the hospital and sick, and by that time their options are much more limited. If you're not in a dire medical situation, go to your doctor and get your labs done and talk with him or her about your options. It gives you peace of mind.
Second, talk with someone who's HIV positive and has done all this before. They'll help you re-evaluate and make changes in your life. I'm a big fan of sobriety; I think people need to get support during that crucial early time so they don't just start drowning their sorrows.
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|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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|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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|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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|Mindy, Atlanta, Ga., diagnosed in 1991
I hate to say this because this always sounds so cliché, but I do tell people this when they are newly diagnosed:
You are not by yourself, and you're not going to turn around and die tomorrow.
I'd let them know I'm there, I've been there for ten years. You kind of help them through the different things they're going to go through -- because it really is a process -- and kind of send them in the direction they need to be in.
I do still believe that people -- especially newly diagnosed people -- need to go to a support group, they need to find the correct health care provider, and they really need someone to talk to them and help them, for instance, disclose their status to certain important people in their lives so that they have that support.
With the group I am in, we have had members who were diagnosed less than six months ago, and we just say, you know, some of us have been diagnosed 18 years. So talk to us. We didn't have anybody to talk to, but we can help you through it.
My belief in helping a newly diagnosed person to realize there is a way to live with HIV, that it does not have to rule your life or become who you define yourself as, remains the same. I think I do a pretty good job of presenting the good and the bad faces and/or phases of having this illness. I am honest in answering their questions even if it may not be what they would like to hear.
It is most important to allow the person time to "grieve" and move through the situations at their own pace. Each of us lives this journey in our own way and through our own experiences.
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|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.
Some of us think, "Oh, I can take it when I get it," but you never know what it's going to feel like.
What is the first thing someone should do when they find out they have HIV?
The easy answer, I think, is, "Get help." Talk to someone, get it out -- not necessarily out in the open, but understand where you are. I think a lot of people either attack it head-on almost with overkill, like a panic situation, or they completely ignore it and figure, "There's nothing I can do about it now -- I'm just going to roll up and die." But I think people should just do everything they can to assess where they are and what they need to keep themselves where they are. Because it's not necessary for people to readjust everything -- it's more about making sure the status quo is protected, and then build from there.
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|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.
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