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Living with HIV Stories

Reading about other people's experiences of HIV can often make you realise you are not alone in your situation. They can help you understand how other people cope with their positive status or with a friend or relative who is living with HIV.

Below are a selection of stories that have been sent to AVERT from people all around the world.

Kathy

Hi I’m Kathy 12 I was born with HIV... I don’t know how many meds I have taken in my life... I was adopted when I was like 3 or 2.... I don’t really remember how my mom told me that I had HIV or anything... people tell me that people like me shouldn’t even be on this earth but I don’t care what they say I’m a human being and I deserved to be heard. I’m really scared to have a boyfriend because I know that I can give other people HIV.... I want to be married with 3 kids and I don't want to grow up 2 be a loner but how can I do all of that and I’m HIV I started to think is there anything that I can do...

Well I don’t know but... I’m happy to have people just like me who were born with it.. It makes me a little mad when I see things on T.V about HIV but then again there trying to help people so they don’t end up like me or make a child like me I guess that kinda good... sometimes it feels like no body gets me but then there trying to help me so I cant really get mad at them.. but it really dose hurt sometimes I just wanna be normal, like all the other girls, you know have a crush get a first kiss without thinking about it... But I will Never regret who I am and what I have its made me who I am and I guess that’s whatz important...  I really don’t like the meds they give me one word Nasty.. :-).. my mom makes me laugh about it or she tries... its crazy that I had to be me the only one in my family to have it ..

J.O

My initials are J.O and I was born with HIV. For people who were born with it can you remember the first time being told? Not me I feel I was born knowing this. When I was born I was born a very sick child. Lived in an incubator for a week or two and was fed from a tube. I was also adopted and as a child I heard lots of stories about my mother and the family, which I wish I could meet to get more undiscovered answer.

I was told that my mother was a drug addict and while pregnant with me she did these drugs. I was also told that doing drugs was probably the way she got infected and probably infected other including me. I was also told that this is why I was so sick as a baby. My family told me that my biological mother A would call and ask "is she dead yet" and my adopted mother said she would hang up the phone.

Growing up with HIV I didn't understand why me. I also didn't understand why I had to take so much medication at the time. So at on point I stopped taking my medication. I would hide it under plants and things of that sort. My Levels were high, very high and if didn't move with my sister in law and brother I would be very very sick or even possibly dead. I struggle with it because I'm 19 and dating would seem very hard for me because I know one day I would have to tell them and I could possibly not go well.

I don't really except it but I have to live with it. If I could tell something to people of any age who has HIV or even AIDS I’d say; ‘living with HIV/AIDS is the easy part you just can't let it consume you as a person, physically mentally because we're in control, not the virus’.

Zambian

I came to find out about my HIV status last year in September and my cd4 was very low 24, which meant I had to start ARVs.

I started taking drugs after a month and right now as am writing this letter am on drugs.

Well, I always thought I will never be positive but it has happened and there's nothing I can do about it but to live a positive life and my prayer is for God to keep protecting me all the days of my life.

The only problem am facing is telling my boyfriend who wants to marry me this very year. I’ am so scared that he will leave me when he finds out that am positive coz every time I bring up the issue of HIV just to get his views he says he would die out of depression.

I really don’t know what to do and I love this guy alot. He’s not the one who gave me HIV I believe its my ex boyfriend of 4 years.

Mr K

If you are reading this most likely you or someone you love has just gotten the news "HIV poz".

I met a man, he was charming and handsome. We talked for hours the first night we met. I told him about my last relationship and how it ended with the police taking my boyfriend away after he brutally attacked me. The charmer told me he had been single for many years after his partner died of AIDS. I asked him straight up what his HIV status was and he told me "he was clean and healthy".

We began seeing each other regularly. I was falling for this guy and he for me. We played safe at first. But as time passed and our relationship grew stronger we began to relax. We had an active social life and enjoyed each other and going out with friends. Life was very good until February 11, 2010.

I discovered a hospital document that had my partners name on it. The document was mixed in with some old holiday cards he had collected and saved over the years. I don't think he knew he still had it.

The paper was dated 2002 and stated my partner was HIV poz and had been for 10 years prior. I was devastated!

Over the 2+ years we were together we had the 'HIV poz' conversation many times and he always said how happy he was to be 'clean'. I was tested 2 days later and the results came back positive.

I moved out that afternoon- it was my birthday. I am heart broken, confused and angry. Being lied to by someone you love so much just adds to the pain of having to deal with the news of being HIV poz.

I hope my story gives you reason to pause and search your soul for that inner voice that sometimes we ignore.

Hopeful

I'd like to firstly how happy I was to find this website, I was just trying my luck but it really comforting to know that I'm honestly not as alone as I thought I was. It really is encouraging to read other peoples stories especially since I could relate to a lot of them. I like some of the other stories I have read was born with HIV. I told that I had HIV a month after my 18th birthday, a few weeks before I left home for university in the US. The news did not come as a shock to me. I had already started having my suspicions that something was wrong after what I thought was just another routine check.

My mother had been talking to Pediatrician in his office, when she came back into the room that I was waiting for her, it was clear just from her expression something was definitely not right.

That day had marked the beginning of my HIV medication administration, as from that point on I was taking medication day in and day out which at the time I believed were just vitamins for my anemia that I would only have to take them for a while. After taking these medicines for almost 2 years with no real idea of when I would be able to stop taking them, my patience grew short and curiosity kicked in. I wanted to know what exactly these so called vitamins were doing for me that I had to take them so rigidly. So I googled my drugs, only to find out that they were HIV medication, when I read that my heart sunk. I couldn't believe it.

I remember thinking over and over again that there has to be some other explanation there's no way possible I'm HIV, after an hour and being part distracted by the pile of homework I convinced myself that they were just prescribed to treat something else. Unfortunately it wasn't as easy as I thought it would be to put thought of me having AIDS out of my mind, so that night after having spent hours lying awake and unable to sleep and now crying, part pleading with God that I had anything other than HIV. I finally got out of bed and went upstairs to my parent’s room in the middle of the night to confront them about the drugs.

When I asked my mother she denied it, saying that the medicine I was taking was HIV medication but that they were for my anemia and only that. This story worked just as well for me because it didn't confirm my biggest fear, the last thing I wanted to hear was that I have HIV.

For a long time I was seriously in denial, but the thought was always in the back of my mind especially when I heard people talk about anything that had to do with HIVAIDS. After some time I started to pick up on the signs; my parents were taking the same medication yet they didn't have anemia, my mom reaction to my brother's comment about Magic Johnson when were watching MJ's memorial when he said that Magic Johnson looked too healthy to have HIV and that the whole thing is a lie someone with AIDS can't live that long.

The real wake up call came one day when I was studying in the room next to the TV room with the door open. I overheard a church service, which my mom was watching about praying for the healing of sick children especially those born with illnesses. As the pastor said if you have a child sick lay your hands on them now...my mom came storming into my room to pray for me and when I asked why she was praying, after having overheard the whole thing on TV, she told me for God to give you wisdom on your exams. And that was that I told myself its time to face facts. So when the day my parents had called me up to their room to tell me what I had already long suspected that I was indeed HIV positive.

My parents couldn't believe that I handled the situation so well the feared the worst, that I would be hysterical but I told them that I guess I always knew I just never really truly accepted. I was hoping I would be wrong. I was hoping that day would never come. It's been almost 9 months since then and 8 since I started living on my own. Learning to take my medication on time, dealing with getting prescriptions, getting health insurance and seeking medical specialty advice have been part of my uphill battle with something that I never asked to have. But I can honestly say that with time it gets easier and I can honestly say I often forget that I have HIV. I'm healthy as can be; my body, the medications and most of all I am fighting. Without a doubt I believe that the greatest thanks belong to my savior Jesus Christ for keeping me and I believe that he will continue to do so.

My heart's desires to become a doctor, fall in love and start a family will surely come to pass. HIV has been anything but a death sentence to me, if anything it woke me to sit up and take notice of this beautiful gift called life, which many don't have or lose so early. With that being said I urge you all living with HIVAIDS to continue to stay strong, healthy, positive and hopeful for the future because you can trust and believe that your life is in your hands, you are at the driving wheel. HIV does not control you life you do!

Megan

Hey, My name is Megan and I live in the US... I found out I was POS almost 4 years ago, on 1/4/07 when I was only 18 years old. I was in shock, so much so that I don't even remember the next couple of months. My life consisted of going to school, work, and then home... after I found out I pretty much dropped out of college/ failed most of my classes. :( I didn't have any idea what it REALLY meant or what I was supposed to do... I contracted the virus from me ex. He was my 1st. He said he was "clean" and he knew I was also because I had never been with anyone else, so we didn't need to use condoms. If I only knew then what I know now... I didn't know what to do, and I felt like no one could ever love me or would want to be with me, so I stayed with him. I mean sure I loved him after a while, but it was more concern for both of our well-being and trying to "be happy", even though most of the time I was being put down or putting up with him and his drunken rages or him being high... well I finally worked up the courage to leave this past July :) and although I am still VERY worried about him (he doesn't really care so much to live anymore). You may ask what made me FINALLY decide to leave...? Well I met a man that treats me the way a woman should be treated, like a princess! He is Negative and hopefully will stay that way :) but he nor his family discriminate against me, or even say anything about it for that matter. And, I am finally in a pretty good place in my life, with someone that loves me and wants to be with me, a good job, and just applied to school to go back to college! I finally feel like I have a purpose in life and want to continue LIVING!

I hope all of you wonderful people out there never give up hope like I did for so long! I faked happiness till everyone believed it... even me for a while!! NEVER GIVE UP!

Curt

Hey Everyone my name is Curt, this is my story about living with HIV. I am 22 years old and found out last march 28th that I was HIV positive. I had requested to have the test done because I did not feel right. I knew that I worked long hours and stuff. but I knew something was not right and I was not going to stand by me passing it off as another cold. I remember that day very well... I drove to my doctor whom I had been going to for years, they had called me in saying you need to come in before the office opens we need to talk to you. I got up that day early at 7:00 my mom and my sister fallowed me, my sister only went in the room. at that time I don't think my mom could handle what was going to be said. My doctor looked at me and said; well everything came out negative except for one test... and I don't know how to tell you this, but curt, you are HIV positive.

I broke down right then and there. I knew my life was over as I signed out of my doctor’s office bawling my eyes out.  I go to open the door to the office and as soon hit my face I stopped crying. I felt the wind move across my skin differently, the sun felt better on my skin than I could have remembered... As my mom was worried about me leaving and going to be by myself for obvious reasons, I reassured her I would be okay. I open the car door pulled my top of my car and turned up the radio really loud... because that too felt better the colors of the roads business and everything were brighter... more beautiful than anything I had ever seen. I got home change and went to straight to work not telling anyone not even crying all day. I work a good 16 hour shift that day.. and the same for four days that week had not thought about it but had started to tell people.  Most people were standoffish at first but I had a little class with everyone at work what the virus it what it does and what risk it has on them.

I began drinking heavily every night, as I tend to do to cover up anything that I cannot deal with.  I drank and drank and drank until I could not feel the pain anymore. That night we all went to a friend’s house. My best friend knew what I was going through but kept wondering why I could not talk about it with her of all people. Then we went outside and I came clean and cried so hard my eyes were red a swollen... I decided I needed my mother right now... and it was already 3:30 am... my mom is still in bed. I am on the freeway driving home and there is was again I started crying so hard I had to pull over and stop the car and calm down. I finally got home after everything that had happen, and I walked in a know I smelt of cigarettes and beer like my mom hates.. but I was all swollen and teary eyes when I walked in a ran to my room still crying. She comes in and she tells me. Curt you cannot let this disease control you like this.  That made me wise up.... But it was still hard it sucked everyday seeing my friends not sit with me a break time because they were afraid of what they didn't know.

I was totally dead for dating for a very long time. Now all of my friends are back in my life and my family all is aware of my condition they aren't scared they are happy I made the decision to live. My point to this is find some sort of positive support from the time you find out until the time you can rely on yourself. you are not the disease, it is apart of you. You are in control of this. Family are a great support system to have through it all... but if you don't have that, there are numerous support groups that work with HIV infected persons. I saw the world in different eyes, it has been said that no one can put a price on a life, true in one aspect, but that don't get the true value of a life until their life has been threatened to be taken away. My HIV case is in its younger stages my viral load is 23k and CD4 is around 520 or so.

I know I HAVE A LOT MORE TO GO THROUGH WITH THE HIV BUT JUST REMEMBEER TRUST THE PEOPLE YOU TELL THAT THEY ARENT GOING TO JUDGE YOU BUT HELP YOU, and be there for you. Life is precious.  Keep your head up and realize everything always works out like they are suppose to and hurt is only but temporary.

Driven

Hello everyone, I would like to call myself Driven, because throughout this last year and 1/2 that is exactly what I have become. You stories have kept me sane for the last year and I think its time that I shared my story.

I was diagnosed with HIV on August 3, 2009. Exactly 3 day after I had been laid of from my job of 3+ years. I was recently married 6 months prior, no kids, and 28yrs old. I always thought how would I feel or what would I do, but I guess I never really thought it could happen to me! Well, it did and there was nothing I could do to change it. This story begins with me deciding to go and give blood 2 months prior to my status discovery...thinking I could save a life or 2 since I had always tested negative for HIV/AIDS. A caseworker came to my house, but I wasn't there because I was at work, so when I got off my husband told me someone stopped by to see me and left a letter. She said that it was urgent that I called her, so I did with millions of things running through my head...the one fear I had the most would soon become my reality. She told me she could not tell me over the phone and that I must come in, so I met her that next Monday.

That weekend was the longest weekend of my life by the way and I strutted my way into the Health Dept. along with my husband on that day. She would not allow my husband to come in with me, even though I told her it was okay. She sat me down and she said "I am not sure if you know, but we can't take your blood because you are HIV+". My head started to hurt it's like my world came to an end. I felt the wall closing in on me and all I could do was start crying and shaking my head that no, this can't be true! I told her it wasn't true...and she said so you didn't know and I told her no, so she said okay would you like to retest and I said yes. She got up and walk away to get a rapid test, and I turned and look at the door. Through this small window in the door I found my husbands face staring at me...but the was he was looking was very sneakily. As I was about to get up, she comes back into the room and test me again. It shows +. She asks me all the ??? of who I been with and their information and if I ever cheated. I tell her we have been together for 4 years and never once did I. So she asked if I would like to tell him so he could be tested and I said yes.

She leaves the room again and he comes in. I sit him down and tell him and he says who u been with. I tell him no one and I ask him the same and I ask him to test. he says no he don't need to be tested, because he ain't got it. He then tells me to grab my stuff and lets go now. Me being so ashamed I do as he says tells her he says no and walk out with my head held down for the 1st time in my life. I walked with it held down. During the drive home I cried and cried and he drove. To make a long story short he never wanted to talk about it. He didn't want to have anything to do with it. I started to take medication and constantly ask him to go but he said he couldn't he was scared, he wasn't ready, and he didn't want anyone 2 know. I stayed for 1 year and I felt alone after that, so I left him and I have lived with my secrets and my decision since then. To this day I think he could be + and gave it to me.. and he may have already knew that and that is why he fears. My family does not know.

I meet a HIV- guy and I told him because I thought we were going to the next level. He has remained my friend, but has told me he cannot be with me. I understand and I am not mad. I know that there is someone out there for each of us and with time we will heal and find someone who can love us for who we are, people! Humans! Nothing more and nothing less. I do plan to disclose to my mom shortly, so we will see how it goes. It's not the end of the world. You will make it no matter what they say.

I'm healthy, I'm happy, and undetectable...Yay!

Be safe, be blessed, and be loved!

Anthony

I am a 42-year-old Italian guy from Staten Island NY. I have been living with this disease for 10 years going on 11. I was diagnosed in 1996 and from 1996-2000 I was in so much denial I ran the streets as I had before smoking crack and just wanting to get high and higher, because I thought if I was going to die, I was going to die happy and high. So I thought.

After 4 years I saw I was still here and healthy, so to speak. I decided to get help for my addiction and get educated about HIV/AIDS. I am happy and yes even proud to say that I have been clean from the drug of my choice for 6 going on 7 years and have been an HIV/AIDS Outreach Worker, Educator and Test Counselor for the same number of years and still am. I have also been a member of many groups within the government of New York: HIV/AIDS Planning Council, Advisory Group to the Planning Council, HIV/AIDS Advocate, Human and Civil Rights Advocate. I have found my passion and knowing now that it is not a death sentence, just a change of life, I can go out and spread the word that, "WE CAN LIVE" and live a very happy, productive life.

I have been addicted to crack for 12 years and lost everything: my job, my partner after 8 years, my home but mostly myself. I am back now with alot of thanks to many, but mostly to myself because it was me who willing and chose to get the truth and I did. I will persevere in this fight to educate and fight for the rights of HIV/AIDS people and all people who are treated unjustly........ I have never been more content and happy than now.

It is now 2010, going on 46 and it is going to be 14 years that I am living with this illness. I am in control of it. It has no control over me. Still extremely happy and content with a positive attitude. Still clean from drugs going on 11 years and still in the field of Social Services. I went back to college and earned a degree which landed me job as a Case Manager focusing on HIV/AIDS where I assisted in housing many homeless, educating the uneducated or misinformed, feeding the hungry, counseling and assisting many in getting their lives back from a life of hopelessness.

Education has been in my blood for many years where I started out at 22 years of age with the Board of Education of the City of New York working with the Special Education Community. As the years passed and after my sordid life experience I saw all the injustices and that is when I started my journey towards Human and Civil Rights for ALL, lobbying, educating and counseling. I am here and I am NOT going anywhere. People who know me and the work that I do know they can, at any time, call on me for assistance and so can you!

Bob

I am 22 years old and I was diagnosed with HIV about two weeks ago, and for some reason my mind was ready for that answer since I had been showing strange signs since January of this year. Both my parents were there with me when I got the news and they are both very supportive, and I am truly thankful for that.

I told my closest friends, one of them being the guy I really like, and he has been supporting me since I started this whole process and has always given me support. So far no one has turned their back on me due to ignorance or anything like that. What I find very peculiar about this entire thing is that this has given me a higher drive to accomplish my goals and work towards what I want to be. I am thankful that I have not fallen into a depression or anything like that.

On Monday I get my result for CD4 (T-cell) count and virus load count, and I am hoping I have a high level of T-cells. The last thing I have lost is hope, and I would like to let others know that even though sometimes we might feel the world is going to come down on us, there will always be someone we can count on, who will support us and love us. I am not in a support group at the moment but I would love to be in one, meet others like me and learn from them. This is not the end of the world; this is not a reason to give up on our hopes and dreams. We are in control, not the disease. I had never been so comfortable with myself before, as I am right now, at least for that I am grateful.

Kain

I've been positive for 14 years I am 34 now. I was very frightened when I first got the news I was dating a guy who I didn't really know and he was very callous and knew of his status; I think that’s what messed me up in the head the most when I realized it was that guy who infected me.

I was at university when I got the news and living away from home. I had to carry on regardless at Uni although I think friends were concerned when I lost a lot of weight at one point. When I finished the course I came back to live at home, I went through a few years of being in denial, not even reading anything which discussed HIV in the gay press. I was going out and drinking a lot to escape the truth. Then there was a turning point a few years later and I re-evaluated my life, myself and HIV.

I took the step of going to a clinic, I started to go for regular check-ups and it wasn't long before I was on meds, CD4 at the time was about 160 viral load- not sure but was very high I'd also lost a lot of weight but because I was still in my 20's I just looked like your average slim guy (but I was really aware of it).

I would still socialise with friends but take the meds in the toilet, never forgetting to take them. My social life has changed as I have got older and I don’t like to stay out late so taking my meds is even less of a burden I also only drink on rare occasions as I have such a low alcohol tolerance and I hate feeling hungover!.

My viral load is undetectable and CD4 stable and has been that way for several years now (about 10). I have leant a lot about myself since my diagnosis and how I deal with things; I have become more head strong and I don't give up very easily, I have always been private but because of the diagnosis I am even more private about things such as my health although I do talk to very close friends about it- its important to have at least one person who isn't a clinician that you can talk to although they are helpful.

I work out, eat sensibly and work on maintaining my health through regular exercise. The weight has come back on I don’t have any facial or bodily muscle wasting and am please about that, it would really get me down if I had lipodystrophy or facial artophy.  I never for one minute forget how my life changed and whilst I no longer dwell on the past I do have days when I feel depressed because of the whole situation but then I look at my life and the things I have achieved and that makes me feel better and more determined to do something with my life.

I have not been in a long term relationship because I guess I'm afraid of the reaction if I told the person, there have been short term relationships but I never feel I know the guy enough to tell them. Although saying that I did date a guy and he disclosed his status and we talked about our experiences- it was a nice change to feel I could talk openly about it. I do think about the future and what it holds but as long as I have good friends who I meet regardless of whether they know my status, that’s the important thing. I do think as I get older I’ am more likely to tell a guy, I guess because I know my self on a deeper level and feel more comfortable in my skin, HIV is part of my life but it does not control my life.

Ryan

I have been dating my bf for almost 3 months now and for the first time ever I have meet that one person we all strive to meet

We decided over a month ago to go for a regular test and at the time I had no reason to believe the outcome would be anything to worry about as only having a test a few months before being negative

I was at work and got a call from my local clinic and was asked to come in as soon as I could , I kinda knew something was wrong for the tension in the persons voice , I went in nervous as hell and I was told I was diagnosed with HIV and felt like my world had come to some kind of end

And my next thought straight away was god my bf and knowing the fact we had not be sensible and the guilt that I have pertinently altered someone else life forever

I managed to walk out of there and called my friend who picked me up and we just drove an drove and it all come out in floods of tears and all I wanted was my mum the hardest next step was telling her

I had this compelling convulsion to want to tell her and have that hug you can only really get from a parent my friend drove me home to my mums and I just blurted it out

We both cried and sat there and spoke and sat in silence at times and then the bombshell of telling my dad he come over and I told him and he fell to the floor one of the most hardest things I could ever tell my parents

And the biggest thing was telling the person who I had fallen in love with that I was and there was a risk they could be and the fear they would walk away , but in actual fact they where so so supportive and understanding and said that would not ever be a reason to leave someone for

The hard thing is I know my status now and the next thing is the waiting that my bf has to go through over the next few months to find the results and I hope and pray every night that he will be OK

I have gone through a wave of emotions and feelings and its been one hell of a time in my life and I am so so thankful of the support I have from my bf and family and the support I can give them

And I would hope anyone that’s reading this it will feel at the start like your life has ended and how will you function but believe me something like this really does make you put your life into perspective and how precious the time we have and what life deals us is what makes us stronger and strive to carry on and believe in ourself s and make what we have the best we can

I wont lie and say I don’t have my down days but I have some really great days and there is not a day that my status is on my mind on a daily basis but I have the conviction and energy to carry on and make my life mean something important to me.

 

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