Marjee (18) has HIV.

How long have you had HIV?

When I was four years old I got really sick. At the hospital they discovered that I was HIV positive.

Can you remember anything about it?

No, it's too long ago.

How did it go in the years after that?

I didn't notice any difference. I did have to come for a check-up every few months.

Have you always lived in the Netherlands?

I lived in Tanzania until I was three. I came over here with my whole family.

Do you have any brothers or sisters?

I'm an only child.

When were you told you had HIV?

When I was sixteen I think.

How did that affect you?

Not much because I already had a suspicion. At the hospital you see all the folders about HIV. My mom said that I came for stomach ache, which I did actually also have. But the older I became, the stranger I found it that I had to go to hospital every three months for stomach ache. I was also on medication. I started with nine pills, but now I only take one.

What did you think of so many pills?

Very annoying. I had to take nine pills in the morning and nine pills in the evening. I was usually outside playing and then my mom called me inside to take my medication.

What did you say to the other children when that happened?

Nothing, I just had to say that I had to go upstairs for a moment because my mom was calling.

What about when you were staying over somewhere?

Then I always had to return home to take my pills. Sometimes I wasn't allowed to go out until after I'd taken my medication.

Were you able to talk about it at home when you found out that you were HIV positive?

Yes. My mom expected me to react differently. She thought I would be sad or angry, but that wasn't the case.

Why were you not told until you were sixteen?

I think my mom thought it was better to tell me a bit later. I haven't discussed this with her. After my dad died she told me. He also had HIV. He died in Rwanda. She thought that was a good time to tell me I think.

Do you resent her for not telling you until so late?

No, not really. My mom has HIV herself. She hasn't told anyone apart from her sister. I live alone with my mom.

Before you knew, did you ever ask your mom what exactly was the matter with you?

I think I did ask and she was worried that I really wanted to know. Also after what happened to my dad.

Which school are you at now?

At the ROC (Regional Education and Training Center). I want to be a medical assistant.

What do you tell other people yourself?

Nothing. But I have told two boyfriends and one female friend. The boys took it well, but my female friend didn't. I was disappointed about that because we had been friends for quite a long time. She's also training to be a medical assistant. And I've known her since high school, so I expected her to take it well. That was awful, but that's life.

How did you tell your boyfriends?

I started by testing them first and asked how they would react if someone had HIV. I thought if they reacted well, I would tell them the whole story in one go. But I didn't do it all in one go. Every few months I said something about it. The first was a boyfriend who I was in love with. He accepted it and didn't mind at all. Everyone has something, he said. He was also okay with the fact that he could get it as well if we had sex. And he didn't mind using a condom.

How do you deal with hygiene?

There's a simple rule; it's either with a condom or not at all.

Did you also tell him what measures you have to take?

I told him how it's transmitted.

What did he actually know about it?

Quite a lot, but he didn't know that mothers could also pass it on to their children.

The first time, it took weeks before you were able to tell your boyfriend. How did it go with your second boyfriend?

It was a little easier because I wasn't as nervous. The female friend came after that.

Did you notice right away that it wasn't going well?

She reacted a bit shocked in the beginning but it still went okay. But two weeks later she said she didn't want anything more to do with me because I have the virus. I think it was down to ignorance.

Were you nervous before telling people?

Terribly. The first time it took me weeks to come out with it, but the second time I rehearsed everything in my head and worked out a whole plan for telling him.

Did the hospital offer you any assistance with that?

They advised that you are best to listen to your feelings and then be honest. If you tell someone, you have to tell them everything.

What do your fellow students at the ROC know about HIV?

I think most people at my college know quite a lot. They know what it is and that it's not as dangerous as it once was, but I think they also find it a bit scary knowing someone with HIV.

How much did your classmates at high school know?

Nothing at all. They knew that it existed, how it was transmitted, but nothing else.

Was it discussed in biology lessons in your class at school?

Yes, it was. And on World AIDS Day, two people from Tanzania came to school to tell us about it.

Did you want to tell someone at that point?

No, not really. I've had it for so long and it's been alright for so long. Nobody knows about it so why should I suddenly tell people then.

How is it going with taking the medication? Is it always successful?

I now take Atripla® and it's going well. I have a very good CD4 count.

Do you ever forget?

Sure, once or twice a month, not very often.

Do you go out?

Yes.

Do you stay over at other people's houses?

Yes, and the rule from earlier still applies. I take my medication at 8 p.m. After that I can go out and do things. I prefer not to take my medication with me. Imagine if someone saw it. I'm very careful about that. But if someone comes over to sleep at my house, I say that I've suffered from stomach ache for years and that's why I take medication.

Did people used to ask about it when you had to go to hospital?

My mom would call to say I was sick and I was a good girl who never said anything about it at school.

Do you know that you can have children one day?

I was told all of that at the Amsterdam University Medical Centers (location AMC) that it's possible to have a child without HIV.

When will you tell your own child about it? Do you ever think about that?

That depends. Maybe there will be a magic cure and I won't have HIV anymore, then I won't tell them anything. If not, I think I will be able to tell them. But that also depends on the child.

Is it a relief when you tell someone?

Sure. It helps me a bit.

Do you ever worry?

No, not at all, it's all going well now. I don't worry about it.

Do you ever do things with The Young Ones?

I try to go every time. It's nice to be able to take your medication without worrying and to hear the stories and experiences of others.

Are they very different from yours then?

Some are, some not. One girl who told people that she had HIV lived in a village. The whole village turned against her. I've not had that experience.

Do you look each other up online as well?

Yes, I have a few friends from doing that, we see each other every few months.

Do you ever go back to Rwanda?

I've been there once.

How do they deal with HIV there, and what is the situation with medication?

It's a real taboo in Rwanda and Tanzania. I think there's a lot less medication. I once went to a hospital there because my niece was in with burns. I went to other departments and saw people there with fungi and wounds on their lips. You get little or no medication there.

The main difference is the taboo?

Yes, but I don't just go around telling people here either.

Would you like to do something about it?

I would like to do voluntary work. Something in education. Giving English lessons or lessons on health at a hospital. Especially now that I'm training as a medical assistant. I might want to become a nurse. I want to gain experience in another part of the world.