Ashley (15) and her mother Jane (45) both have HIV.

How long have you known that you have HIV?

I have known since I was twelve. They told me because I got my first period. Because the virus is in your blood, they decided that I needed to know. When I become sexually active, I could transmit it.

What did you make of that conversation?

I was quite shocked and thought: this isn't happening to me. At first I wanted to run away and have nothing to do with it, but now I've accepted it. I know that I can live with it and that I can have children. I can also be sexually active, as long as I practice safe sex.

What did you know about HIV?

Not much, I knew that AIDS was terminal and that HIV was the same. Now I know that HIV is less active and AIDS is extremely active.

Were you already going to the hospital?

Yes, I had to go to the hospital every three months for blood tests and check-ups. I didn't know why. I have always told people that I have a liver disorder, but I have no idea how I came up with that. I've never asked questions about it. I thought I would just accept it. I made this excuse up myself.

How do you feel at the moment?

It's an illness and I would prefer not to have it but I do have it and I feel special because of it. People who know about it accept me as I am, with HIV.

Who knows about it?

My parents, my uncle and aunt, my grandpa and grandmas and another uncle.

How did you get HIV?

I don't know. My mom doesn't know either. During the birth she lost a lot of blood so she was given blood. At that time, it wasn't yet being thoroughly checked. Maybe it was from that. Maybe when she was living in Zimbabwe she had unsafe sex with someone who was infected. She can't remember. It can be in your body for twenty years without you knowing about it. I was born in the Netherlands.

Do you think it's important to know?

Not necessarily, I can't do anything about it. Things have moved on so far in terms of research on blood, that people are no longer infected through blood transfusions. I think it only happens now through unsafe sex and in third world countries.

Do you ever want to tell other people?

I recently had a really good chat with my best friend and she told me a few secrets. I really felt like telling her then, but I didn't. I was afraid to, imagine if we had an argument or something. That does sometimes happen. It's a different kind of secret that she has.

Are you afraid that you'll lose your friend?

I think she would look at me very strangely. And that she wouldn't dare do certain things anymore. Everyone thinks that you mustn't come into contact with a person's saliva or touch their hands and so on. People think the strangest things, but they don't know exactly what HIV is and that's what I'm afraid of. I now also spend some time giving information sessions and so on, as well as going to school. We had a project week about being different and I told my story, but I told it as if it were a friend of mine. That way I can talk about my illness, but through another person.

Is that a relief?

Yes, I think people try to imagine what it's like.

What do they know about it in your class?

They know that it exists and think that it's terminal, but they don't know that you can live a normal life when you are infected.

Do you have a boyfriend and do you find that difficult?

I have a boyfriend but it's not difficult because I'm not sexually active yet. I think that if our relationship lasts, I may become sexually active. I don't know if I would tell him. Because you can just have sex without knowing that about each other, using a condom.

What medication do you take?

Trizivir® twice a day.

How is it going with that?

It's going really well. I never forget to take it. My mom always sends me a text saying "medication" and if I go away I have to take it with me. Then my friends say: "Oh yeah, your AIDS pills." They say it as a joke and I think to myself "if only you knew!" They think I have a liver disorder or that I take them for the enamel disorder on my teeth, which I do actually have.

Do you take your pills in front of everyone?

Yes, because they think it's for my liver. They sometimes ask the name of the pills and I say I can't remember it off the top off my head.

Do you know everything about HIV?

No. They always ask me if there's anything else I want to know, but I really don't need to know everything. I know what I want to know and just accept it.

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

Occasionally we go away for the weekend, that's organized by the hospitals. The first time I went along I was the only white person with blond hair and blue eyes! I was shocked. I didn't feel very comfortable in the beginning. After that it all went well and I went hiking with everyone.

What do you like about meeting others?

I like that we all have the same condition and can talk about it. We can share our problems. We have a lot of contact, we're in a WhatsApp group and arrange things together like a day in Rotterdam, for example.

Is it helpful being able to tell your story there?

Yes. I talk to one boy a lot. I really like that. I thought that it only happened to girls, but that's not true. That idea changed when I saw all the others.

Are you going to tell others in the future?

I don't think I'll tell people at work when I'm older. If moms, for example, know that I have HIV, they might not bring their child to the daycare center where I work. I think I'll tell my good friends though.

Do you talk about it with anyone?

I mostly talk to the boy I mentioned or my parents. Then they tell me what they think and what decision they would make if they were me. They try hard to empathize with what I'm going through.

Have you ever noticed your mother feeling regret for passing HIV on to you?

No, I've never seen that. But I've never asked her. I can talk about it easily at home, but just not when my little sister is around. She's only ten. She'll be allowed to know when she's older. She has a right to know in my opinion. I don't think my little sister will not want to see me anymore. I think she'll continue to treat me the same as she does now. And accept me as I am.

If she were to find out in the street that you have HIV, what do you think would happen?

I think she would distance herself from me. But there are not many older kids living around here, they are mostly younger kids. They would think I'd had unsafe sex or something. And then really distance themselves from me, and think that my sister was also affected by it.

Do you feel like you are carrying a burden in your life?

No, I've accepted it. I can do whatever I want. I can even drink alcohol, just not too much. If you're under the influence of alcohol, you will also be looking for sexual activity more and I think things could go wrong with that. People that I know have problems with that. It can happen to anyone.

What advice do you have for children who are facing this for the first time?

Accept it for what it is. It took me a long time to do. Six months to a year.

What do you find the hardest?

Not telling people. Other people don't have to deal with all this and I do. Why do I have this now? All those sorts of questions went through my head. But that just made me more unhappy. And it didn't achieve anything.

What do you think of the information provided about HIV in the Netherlands?

There should be more posters and the information provided in schools should be better. They should have a whole week at school about HIV. They do that for things like diabetes. Many people start having sex at a young age. There needs to be good information about HIV and AIDS. You should be able to obtain it for free somewhere or at least very cheaply. I think Dutch people don't realize that HIV also occurs in their environment. And if it does occur, it's good to know what you're dealing with.