Thea (49) is the mother of Gerald (14). They both have HIV.

When did you find out that you have HIV?

I was admitted to hospital because I was really sick. My blood cells turned out to be abnormal and I had dual lung disease, Pneumocystis carinii pneumonia (PCP). So it was clear what was wrong.

How did that affect you?

I rang a good friend and my husband and they immediately said that it's not like it used to be and that it's treatable. It's fine to live with. And I have children so I have a lot to live for. I had to carry on. I shouldn't have been around much longer because I had full-blown AIDS. I had an immune score of ten. The rug is pulled out from under you, also because you're so miserable and sick that you think you can't stand it any longer. I was just forty, my youngest had recently stopped breastfeeding. That's nine years ago now.

Did you have any symptoms?

No, I still cycled all the time, but suddenly I became so sick that I couldn't even manage to get upstairs. Even though I was very sporty.

Do you have any idea how you contracted it?

I only had one boyfriend that I wanted to go further with. The only one I've ever had and now my husband. I lived with him in Kenya for three years where I performed the necessary medical procedures, such as removing placentas. I worked in a clinic and there was a lot of AIDS there. I also once touched a leg that was wounded. That was the first thing that sprang to mind as the cause. I also once gave a blood transfusion to one of my brothers who was very sick. It's also possible that things didn't go quite right there when inserting the needle.

When it was discovered that you had it, did everyone have to be tested?

My two sons have it but my husband doesn't. That was good news for him, especially because he's a Kenyan. A black man. But the fact that I've given my children this illness is the worst thing that can happen to you as a mother.

You didn't know at the time?

No, and even during the pregnancies my blood wasn't screened. There was no reason to. The eldest was born in Kenya. He wasn't tested in the Netherlands either.

So that was a shock.

It still is actually. It's easier now because, fortunately, the children are doing well and coping with it well. But every time they have to go for a check-up, the youngest is terrified of needles, so it breaks my heart again.

Have they asked about it?

No, and I haven't actually explained it clearly either. But one way or another they know that they got it from me. Maybe I said what it was once. I have it and they have it, but they don't yet ask how they got it. The youngest is eleven years old. He knows too.

The policy is to tell them from the age of twelve. Did you consciously decide to tell them earlier?

It just happened that way. You just deal with everything. We go to a magnetic therapist who keeps us in shape and helps us to deal with it psychologically. My husband also went to a faith healer with my son. That's when my son found out what he had. He was nine years old at the time.

What do you tell the people around you?

I don't say anything about it. We don't give it a name, I do that as a precaution. When Gerald had to be admitted to the hospital, we said that he had gone to stay with relatives. Fortunately, no questions were asked about it or about my situation. Very occasionally, someone asks if everything is okay again. Then I say that it's all fine now.

What are you afraid might happen if they knew?

For me, the worst thing would be if the children were avoided by their friends. With my family, some of whom are highly educated, I can see that they are still wondering whether it really won't do any harm if the children play together. And whether they can drink from the same cup. Some of them have difficulty giving you a kiss. And these are my brothers and sisters. You get the feeling they don't know exactly what the situation is. It also happened to me even though I wasn't living a sordid life at all. I wasn't just out to have fun all the time. Maybe they think: Thea got it just like that, so we will too soon. Particularly with regard to sex I'm not a libertine, that's what people always think, or with regard to drugs, but I'm not at all.
With children, you never know what can happen when they're playing. They could fall over. Parents are very sensitive when it comes to their children. If they knew, they really wouldn't come near us anymore.

This shows how little people know about it then?

Yes, that's why I made inquiries and called the HIV association to find out how I stand legally. Whether I have to tell people or not. There is no need to. When the children go on a school trip or to camp, I always say that they mustn't do anything crazy and must be careful not to cut themselves or get any wounds.

What have you taught them?

Particularly before they knew, I taught them that anything can be in your blood, bacteria or viruses. That they must never touch anyone else's blood, and that others mustn't touch their blood either. That they always had to be careful around that.

Do you also teach them not to talk about it?

Yes, it doesn't require any effort not to talk about it. The eldest keeps a lot inside. He is happy, but he just doesn't tell people that sort of thing. The youngest is more of a chatterbox, but we have taught him that he definitely shouldn't tell others, because you don't know how people will react. He has always had problems with his ears, so he's allowed to play that card. The youngest isn't receiving any medication yet.

What about the eldest?

He was in the eighth grade and his liver function declined slightly. His blood clotting time started to become abnormal and the doctors thought it would be better if he went on the medication to ensure stability. In that situation, you're more or less compelled to follow the advice of the doctors. Another factor was that the doctors preferred to start at the age of ten because starting medication during puberty is often met with resistance from the child. I didn't actually want him to yet. Partly because I knew what the side effects were.

Does Gerald suffer from side effects?

He doesn't say much about them and we don't notice them much either. He's continuing to do pretty well.

Do you suffer from side effects?

Yes.

Does that worry you?

Atripla® is a real drug. If you ever take it in the middle of the day, you notice that you're pretty stoned, and that worries me. We take the same medication. I also dream a lot and therefore don't sleep well. There's a lot going round in your head. After an hour, you notice that your whole body is burning up. Then you become very drowsy. Each time is different to the next. You are better not to take it with food, but I do, or just before going to bed. It seems to be a bit milder with some food.

Does Gerald take the medication at home?

If he goes on a school excursion or to a party, he's allowed to take it when he gets home. I have given him medication to take with him before, but then there's a chance that he'll forget or that people will see it. Or that he'll get the side effects that I suffer myself; I don't want to do that to him.

How do you see the future?

I'm hopeful that things will become more stable in a way. There are numerous medications
available. Maybe they can do without it for a while and see how the body manages. I follow the latest developments, for example relating to dormant cells. That they give medication when they become active, so as to tackle the dormant cells.

Do you ever lie awake worrying about your children?

No, not that much. Only occasionally. The eldest is now starting to get older and I think about girlfriends and how I should deal with that.

Will you involve the hospital in that?

No, I'll largely do it myself. Once there is a girl on the scene, they will have to be very certain first and keep their mouth shut initially. And also do it safely. If they have a secure feeling about it then they can discuss it. Then you know someone well enough and the foundations have been laid, and you hope that they won't leave you because of it. Then we'll also be a few years further down the line.
I'm happy to tell them that myself, I know my children. I also want to give my children good guidance. They should be confident that they can tell me anything.

Do you talk about it much?

No.

The children never ask you anything about the illness?

They don't actually. And because there's very little wrong with them, they can do anything they want. I don't specifically emphasize it either. And don't restrict them in their day-to-day life. I don't want them to be constantly thinking or worrying about it.

How do you think the condition is portrayed in the Netherlands?

There is always too much emphasis on the future. They are all AIDS orphans, it's all really bad, you can hardly work anymore. It is portrayed as a significant impairment. A visible chronic condition. But my children aren't impaired at all, they look fine and are growing well. They aren't unwell or sickly.

What bothers you most about the negative image created?

Above all the sexual aspect. The idea that you sleep with 'every Tom, Dick and Harry' and don't take it seriously. The debauchery surrounding it. I was once invited to speak at a college for medical students to explain how I was coping with HIV, how things are going for me now and how I contracted it. I wanted to emphasize that you can also get HIV in other ways. It doesn't always come from sex, debauchery or drugs.

What advice would you give to people who end up in the same situation?

Passing on the illness isn't something that you do on purpose. It's rotten and annoying that you have it, but it's more of a secondary issue in life than a main issue. And indeed, it need never become one. Therapy compliance is important and a good lifestyle, then you can go far. With children, you shouldn't put too much emphasis on the fact that they're sick. I put that into practice as well.

Is there anything else you'd like to share?

If you have to go to Rotterdam, then you're really sick. Everyone in this neighborhood knows that. You can't keep coming to school with another excuse. It becomes so difficult with all the questions as to why. I really fought to ensure that the children don't have to go to hospital during school time. At first the hospital didn't want to cooperate, so we looked for other doctors and another hospital. They found me obstinate, but it eventually worked.