Joyce (20) has HIV.

How long have you had HIV?

Ever since I was born, so for twenty years.

Do you know how you got it?

My mom got it from my dad. He lived in Thailand for a year and did a bit of fooling around there so to speak. My mom comes from the Philippines. My dad is Dutch.

When was it discovered?

I've had it since I was born but they only found out later when I was about six. My dad didn't know he had it, but I think he had a suspicion. My mom wasn't allowed to do certain things, like breastfeed. My mom found that a bit strange but thought it was just the Dutch culture. My little brother doesn't have it. I do because I received too much blood, I was told.

How did they find out?

I wasn't sick, but my dad became really sick one day. He was admitted to hospital and there it emerged that he had HIV. Before that, he hadn't wanted to take an HIV test because he had been in Thailand. He hadn't told my mom anything. When they knew that he had HIV, they tested us as well. My mom and I had it too, but my little brother didn't.

Then what happened?

I was initially sent to the hospital in Tilburg. There they told my mom that there was a special children's hospital and that's where I was eventually sent. My dad was totally against it because of the travel costs, but my mum thought the health of her child was more important than the expense.

What can you remember about this initial period?

I had to go to the hospital a lot. Every three months, I went for a check-up at the Wilhelmina Children's Hospital (WKZ). In the beginning I had to take little blue pills. I had trouble swallowing them. My mom made them into a drink but it was really horrible. I'll never forget that. I had to have it four times a day.

How did it go with taking the pills?

I asked why I had to take them seeing as I wasn't sick? My mom said I had a condition for which I would always have to take something. She gave examples of other children who also had some kind of condition. She knew exactly how to deal with it and I took them. When my parents were still together, things often didn't go well. My dad was a bit careless about taking the pills. I can remember once when my mom had to work in the evening and I didn't want to take my pills, so my father just said "don't then". Then the next day I told my mom that I hadn't taken my medication. My mom was angry with my dad because he didn't take responsibility. Because he didn't take his pills properly, he deteriorated more and more. Once my parents were divorced, things were okay.

What did you say to the children in your class when you had to go to the hospital?

They knew. Because my dad was really sick, the whole street knew about it and word got round. So at school they knew as well. One day, there was absolute chaos at school. The health service was called in. I can't really remember anything else about it. My teacher from the 1st and 2nd grade always really helped us. She had a book called "Brenda has a dragon in her blood" and used it to inform the class. I also took my medication in class. When my alarm went off the children would say: "Joyce, you have to take your medication."

When were you told?

I've known that I have a 'dragon in my blood' ever since it was discovered. And that I have to take medication for it. It was not until later on at the hospital that I was told what it was called. I was about twelve years old then.

When you were told, how did that affect you?

It didn't, it was just normal. I see it as a basic need that I have to take pills. I don't think negatively. That's the way it is and I have to accept it. I don't want it to get me down. Of course I have days when I wonder why me, but then I get over it right away.

What kind of pills are you on now and how is it going with taking them?

I now take Kivexa® and Stocrin® and taking them is going great, I never forget. I take then at 10 p.m. When I take my pills I get very drowsy and my muscles go weak as if I were drunk or something. I've never been drunk, but that's what other people say. Drowsy and heavy. That passes by around 1 a.m. but after that I can't sleep very well because I'm wide awake. I do try to go back to sleep. I dream a lot and also have nightmares. I also notice that I'm still tired in the morning. From the pills that are in your body.

Do you find it hard to follow the hygiene rules?

I personally don't use anyone else's toothbrush. I think that's a bit unsavory.

Do you tell other people?

Yes, I'm very open about it. My mom isn't at all.

Your mom isn't as open about it?

When my dad became sick, there was a lot of gossiping about it in the Filipino community. So everyone from the Filipino community knew. My mom is open about it with the people that she knows well and the people that already know. But she doesn't tell new people. And her boyfriend knows of course.

Who do you tell or not tell?

I make choices. I have to know someone inside out and if I really trust that person, then I tell them. Then we're good friends. When I have told people, they've often also told me something that they don't usually share with others. The bond then immediately becomes stronger. Many of my friends are homosexual. They often don't use protection, very happy-go-lucky. But since they found out about me, they've been taking more care.

What about at work?

At my previous workplace, two people knew. I had a good bond with them. I'm trained as a medical assistant. I particularly want to help people who have a chronic disease with what they're going through. From my experience (not that they'll know), I can empathize better. Unfortunately, my contract has not been renewed for financial reasons, so I'm looking for a job.

Has it ever happened that someone didn't want to see you anymore after you told them?

No. When I tell someone, I also provide them with information immediately. I then invite them to my house, as I have loads of books. And if they have any questions, they can ask them right away. I know better than the school books. At high school, I noticed that the information was no longer accurate, it was outdated. I told the teacher that after the lesson. I was pretty open about it, but I didn't say it in front of the class. My mentors know about it. For safety reasons, so they knew what they could and could not do.

What did the information say that was no longer accurate?

That you can't have children. I said that it is possible and explained how. New school books arrived immediately. You have to provide the right information at school, otherwise it will become even more of a taboo. Someone from the class even gave a talk about it once.

How did that go?

I cried. My best friend who knew, noticed that I really found it hard. Everyone was looking at me and wondering why I was crying. At first they thought I was laughing because it was about sex. As part of the talk, they had also relayed the bad stories about HIV and AIDS, and that's not nice to hear. I obviously know what it's really like. When they noticed I was crying, I was taken aside. Then I explained to the teacher why I was crying. Afterward the kids in class were obviously asking why I cried. So I told them an excuse that someone in the family had HIV.

What do you think of the information provided about HIV?

I don't think schools do it very well. I hear from my nephew what kind of information the school provides. It's not correct. From my little brother as well. He is really affected by it. The schools know a lot about some things, but not others. Although you can get HIV from blood-to-blood contact, if a wound is really bleeding and a drop of my blood gets into it, nothing will happen. But the information provided says that it will. Blood-to-blood contact is not dangerous if you don't have the virus in your blood and you take your medication regularly. Then the chance is extremely small. I'm very precise about that. During my training, however, we were given very good information.

Do you keep up with the news about HIV?

If I see a newspaper article, I cut it out to read it quietly at home. On World AIDS Day, I watch a lot of TV. I want to increase my knowledge so that I can pass it on to others. I sometimes have days when I really want to find out how the virus originated. But it's hard to find. Something to do with monkeys I think. I don't know exactly.

Does your mom know a lot about it?

She's from the Philippines and knew nothing about it at all in the beginning. She thought she would die within a few months. But the hospital provided her with the correct information and now she is positive about life. We just talk about it now and again at home. My little brother and my boyfriend also talk about it with us. I live with my boyfriend and we go round to eat at my mom's house every Wednesday. Then it sometimes comes up.

Does your mom have a sense of guilt toward you?

I think so. In the beginning she found it hard with me because she felt that it was her fault. She also found it hard that I wasn't breastfed. She always thinks that it's her fault. But it's my dad's fault. He should have been honest and got tested.

You have a boyfriend, when did you tell him?

I trusted him completely and wanted to tell him as soon as possible. If he didn't want to be with me anymore, then it would have been easier for me to get over him – before we built up a relationship. We've now been together for five and a half years.

[j3]How did he take it?[/h3]
He was very quiet for a moment, but immediately became positive and started asking questions. He told me honestly that he cried about it at home. He was sad because he loves me and hadn't expected it. But I had already let him see that I was taking medication and going for regular check-ups.

Do you spend much time with other young people who have HIV?

Yes, I met them at the hospital when I was about thirteen. Then I was invited on a trip and got to know some new people. I have seven fellow HIV sufferers as my best friends. We have group chats on WhatsApp and also meet up with each other. We are true best friends! We call ourselves TFC, Team Family Camp. We see each other as family. Most of the people from the group occasionally post something online saying that they are going to camp, and then other people ask "what camp?" They don't know about TFC and that's great.

What makes it so special?

You can immediately reveal your deepest secrets. Everyone is very open with each other. The idea that you can trust someone because you know that everyone has the same thing. That makes the bond strong. It's nice to talk to each other because we know how the other person is feeling. You can give each other advice and talk about it together.

What do you find hard about living with HIV?

The mortgage applications. I don't know exactly yet whether you can get a whole or a partial mortgage. I find it a bit unfair, the mortgage rules. You obviously can't lie. You have to have a blood test taken. I think it's pretty stupid that you can be refused because of it. That you don't have the same rights.
And in the past you couldn't go to America, but you can now. You can't get into some countries; you have to state on a questionnaire what condition you have. When you check in, they see your pills and then they can investigate. And at work, I sometimes notice that I get sick more quickly. I have a lot of problems with my bowels and my periods. I don't want to take the contraceptive pill. Other friends with HIV don't either. I think it's because we already take so many pills.

Do you worry about your future?

No, I don't actually. I had a lot of questions about having children, but nowadays you can have sex without a condom if you are taking your medication properly and the virus is untraceable in your blood after six months. But I don't want to do it without one yet. I always use a condom. There's always a chance you could get pregnant because the pill doesn't work well with the medication.

What is the best advice that you can give to children with HIV?

If you want to tell someone other than another HIV sufferer, such as your best friend who is really trustworthy, invite them to your house and calmly explain to them what it is. Personally, I like it when my friends know what's wrong when I'm sick or have to go for check-ups. Before my friends tell anyone else, I want them to get my permission first. I want to know who knows and who doesn't instead of hearing afterward. That's an important thing to add. I also want them to be honest with me about whether they want to continue our friendship. I've not yet experienced anyone who didn't.
There was a time when there was a lot of gossiping, like at my high school. That was really tough. This was due to the fact that someone (whom I hadn't told) had gossiped about me at school. My boyfriend's parents found out from someone else as well. He had a really hard time. He even moved out because his parents didn't accept it. For the last two years, his parents have accepted me and everything has turned out okay. We have continued to live in our neighborhood. The older residents still remember that when I fell over as a small child I always shouted: "Don't touch me!" My mom taught me that I think.