Jane (45) is the mother of Ashley (15) who has HIV. She is also HIV positive herself.

When did you find out that Ashley was HIV positive?

Six months after she was born. I was breastfeeding and then one day it just wasn't working anymore. She wasn't drinking, eating or growing. At the hospital, they couldn't find anything wrong and we were referred to Nijmegen. That's where we heard that she had HIV.

How did that affect you?

A lot. I was surprised and shocked. We thought she was going to die. I didn't know anything about it. But the internist reassured us. He said that she would have a fantastic future, there were so many developments, we didn't need to worry about it.

What happened next?

We had to be tested. It had to have come from one of us. My husband thought it was him, but I immediately said I didn't think so. It turned out that I had it. The values were so high that either I must have had it for years or I had just contracted it from the blood transfusion during the birth. They couldn't find out if the blood bags were contaminated. Nobody could say.

How did that affect you?

I had to spring into action right away. Ashley was very sick. Before she could be given medication, she first had to start eating and growing. That had to start. With me it was a question of taking medication and then it was okay. With her there was more work to do. She needed to get better.

How did it go when the treatment was started?

Very slowly because she didn't want to eat anything. She was tube fed. She was admitted to hospital a few times to learn how to eat. After a few months it started going well and then she was allowed to go home.

How did you get through it?

With a lot of willpower. At one point my husband had given up hope. Eating was problematic for her until she was three. The medication had to be given with food, but she kept gagging and then it came back out. She had to take it four times a day and that was a real nightmare. My husband and I are still together. We have also overcome that.

How were things with Ashley when she was a bit older?

Good. She didn't know any different than having to take medication. But one day she noticed that I had to take medication as well and asked me why. Then I told her that we have the same condition. We made it out to be a liver disorder. She was quite a chatterbox and we were worried about other people's reactions. Maybe it wouldn't be too bad, but you do sometimes hear stories of people withdrawing completely, and I find that really pathetic. In Amsterdam you're one of a thousand, but in a small place like this you're the only one. Then you get a reputation. The mother as well. I just don't want that.

Then the day comes when you have to tell her, were you dreading it?

Yes, very much so. How would she react? Would she blame me? Would she think I was a dirty slut or something? I had all kinds of reservations. But the conversation went extremely well. We had prepared her by telling her that she had a blood disease and that she would hear more about it at the hospital the next day. We didn't mention the word HIV.

How did the conversation go?

First we had a conversation together, my consultant was there and so was her consultant.
Then we left for a moment and she stayed alone with the consultants. It was a long and intense conversation. Everything was explained, with us there and the consultants. It was perfect. We made another appointment for a few days later in case she had any questions, but she didn't.

Did she change her mind?

No, she didn't. We often asked her about it, but she didn't have any questions. Well, once she wanted to know what HIV means. The abbreviation that is.

What were you most worried about?

That Ashley would find it difficult not to tell people. My biggest fear was that she would tell others. There are friends who say they are your best friend and then after a while you're dropped and the whole school knows about it and you become an outcast. We have really stressed to her not to say anything. And explained that it was for her own protection. I knew that would be the most difficult thing for her.

How are things with her now?

Good. The virus is in her blood but it's not active. So then you have no reason to tell anyone. All dentists wear gloves for example and use new instruments for each patient. If the virus were active, then there would be a small chance that you could infect someone. But for that you've got to have blood-to-blood contact. There is therefore no risk, so you don't need to tell people.

How do you see her future?

Positively.

What about finding a partner?

When she gets a boyfriend and it becomes serious, she'll have to tell him. It'll be different telling someone you're in love with than the class for example. But I think that will happen once she's left school and then I don't think it's such a risk anymore. At the moment, I think she's still too young to bring it out into the open.

How is it going with taking medication?

I'm always there. We take our medication at the same time. But if she stays over somewhere or goes out in the evening, I send her a text to say it's time for her medication. I'm sure she'll forget it one day if her phone isn't on. Then when she looks at the clock, she'll remember, I suspect. My text message always reads "It's a quarter past seven".

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

I think there could be a bit more. But the Dutch public is not open to it. People are a bit scared of it and not particularly interested. It's not really up their street. They don't need to know anything about it because it won't happen to them. They think it has to do with sex or drugs. That's often true, but it can also be contracted through a blood transfusion or through someone that you've trusted. Like possibly my boyfriend twenty-five years ago. I was engaged and I trusted him. So innocent people can also get it.