How can we educate more people about what it is to live with HIV? How do we spread the word about HIV prevention? How do we build a society where there is no HIV stigma?
A young woman, 18 years old, was interviewed by WebMD.com to tell her story of having been born with HIV, living with it as a child, and living with it now as an adult. She asked that the interview be anonymous. Read her story below.
“I was born with HIV. My father gave it to my mother before I was born. I have an older brother but he does not have it. When I was born, my father was in the hospital. They didn’t know what he had, and they never suspected he was HIV positive. That was the last test they tried.
“My mother was in one hospital while I was being born, and my father was in another hospital. They tested my mother and she was positive. They found out when I was born that I was HIV positive, but they weren’t sure at first if it would go away [hyperlink added]. So they kept testing. It never went away. I have been living it my whole life. I can’t say it is a horrible thing. It is sad because my father passed away a couple of months after I was born. And I still worry about my mother.
“A lot of my family still doesn’t know. They wouldn’t be understanding, so we kept it away from them.
“Growing up I had to go to the National Institutes of Health and get blood drawn. I knew something was wrong, but I never understood the extent of it until I was in fifth grade and began understanding that people were not comfortable and did not understand my situation. The worst part was taking the medications and not being able to eat after it. That was my biggest complaint until I reached middle school.
“I knew my mom had it, too, and she was all I had. I worried about her dying and leaving me alone.
“My mom always told my teachers [that I had HIV] because if I got a cut on the playground they would have to take care of it. And when [I entered middle school], my teacher couldn’t handle it and said she didn’t want to teach me.
“I was so scared in middle school. I thought, ‘I can’t tell anyone, no one wants to be my friend.’ And it still is like that sometimes. I am OK. I am really healthy. My doctor tells me I am doing really great. I am thankful for my positive mindset. But it is hard having friendships and relationships. By now you’d think people would know a lot about HIV, but they don’t. I would never tell someone I was not close to. Even when I do feel close enough to someone to tell them, I wonder. Are they going to say, ‘Get away from me! Don’t touch me!’ The truth is that people really do look at you differently when they know you are HIV positive.
“It is hard. I have a boyfriend now and he knows and is understanding. But I know people’s ignorance is not going to go away. I still think people are going to hate me or not want to be my friend when they learn I have HIV.
“I worry about my mom, still. My brother, he has told me he wishes he had it instead of me. But I say, ‘No, don’t wish for that, it isn’t something I would ever want.’ It is something you can take and make it a great thing to live your life to the fullest, or you can just be depressed about it. It would be different if you are used to living without it and then have it. I think that would be much harder.
“I do not know what it is like not to have it. I have never been sick. I’ve been taking the same medicine for 13 years. They changed the medicines only once because I was on the same regimen for so long. That was the only time I got sick, [which] was in reaction to the change in medicines.
“I never really got sick enough to go to the hospital. There are days I feel sick, but I have hope. I thank God because I look at others and see how much worse my situation could be. I look normal and am normal in every other aspect of my physical health.
“I plan on keeping on trucking. I plan on doing great. I wouldn’t be this way without the medicines and theoretical advances and technology. And I haven’t gone through half of the drugs yet, and that makes me happy. But it is a hard disease to have.
“It is a lot better now. Because I know I am going to be OK. I know it has gone this far and it is only going to get better. It is a bad situation, and I am making the best of it.
“I know now that people know more about HIV and AIDS. It is not now a hush-hush thing. On TV there is AIDS awareness. People want to help others and care. But I am not one to say, ‘Look at me, this is what I have.’
“I feel like people are more aware now than they ever have been. But just because there are medicines out there, and things like MTV spots and speakers who come to schools and speak to the students – even so, young people still don’t think it will happen to them. You still have to be careful.
“I think, especially for younger generations, they couldn’t even imagine knowing someone with the disease. They all sleep around, they don’t care. They protect themselves, but that doesn’t always help. They think nobody they know could ever have HIV. They would never guess I do.
“My message to other people with HIV is that I know it is hard for people to cope with. But, living though my experience, I know it is livable. You have to keep yourself healthy and be smart. You are going to be scared. It is only natural to feel that way. But your truest friends and those who love you will be OK. If you care about them enough, they will be understanding. From what I have seen, everyone has been understanding, even though I thought they wouldn’t be. Everyone has loved me more, not less, from knowing how strong a person I am. So don’t be scared is pretty much my message.
“If people don’t understand, it is their loss. That is how I think of it. There are people out there like that, but I have not met them. Like my middle-school teacher, they just don’t know. They think if you get it, you are going to die. They don’t know enough about it still. Their education level on it is slim.
“I love my doctors so far. I appreciate them and know that without them I would not be here today. People say doctors just do it for the money. But what they have done in terms of research and treatment has saved my life. I say thank you.
“Looking forward? Honestly, I don’t know. I don’t think there will be a cure. Eventually, maybe there will be a cure, but more likely it will be you can live with it and you will be fine.”