Theme: Nobody can know
Do you have to go to hospital again? What's wrong with you then? Hey, how come you know so much about HIV, have you got it yourself by any chance? What sort of pills are those you're taking there? If you have HIV, these are questions that you do not want to be asked. That's why you make an excuse when you have to go to the hospital for a check-up. And try not to make it too obvious during biology lessons that you know more than the rest of the class. But you have to take pills, every day and at the same time. Even if you go out or stay over somewhere. It is often a real hassle to get them down unnoticed. Because you really don't want to be asked annoying questions or for someone to google your pills.
At first 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.
I just had to say that I had to go upstairs for a moment because my mom was calling.
What about when I was 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. I now take Atripla®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.
My parents found out (that I have HIV) because the health insurer let them see a printout of my expenses. The word Eviplera® appeared several times, that's the name of the pills that I take. My mom looked it up on the Internet and found out what it was for. My mom wanted to see what I was spending my money on because she thinks I spend it on unnecessary things. They were giving me 200 euro a month, which is why they wanted to see what I was spending it on. On Internet banking she saw that a large amount had been debited by the health insurer at the end of the year for the excess. I had asked the health insurer not to let them see any statements but in the end they did it anyway. I was very angry because they had promised not to. I was already an adult and no longer received financial support. I now live on a study grant.
My best friends don't know that I have HIV. I don't want to tell them either. I'm ashamed of it. I also don't know how they would react. They could shut me out and I don't want that. Do I take the medication when they're around? Yes, but they don't notice. When it's time to take my medication, I grab my key and start playing with it. My medication is in a fob on my keyring. Nobody notices.
I never forget to take my medication. 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 I take the 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.
Thea (49), mother of Gerald (14), both have HIV
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.
What do I say when I have to go to the hospital? I make up an excuse that I'm going to see someone I know or something. I don't have to go to the hospital very often, once or twice for blood tests. Then we often go into town and combine it with an outing.
I take Eviplera®. It's going well except that I almost forget about it sometimes. Then I take it just in time. Do I take it when other people are around? Sometimes if I go out for a meal then I have to, but I do it on the sly.
I now take a two-in-one pill, Kivexa® and Viramune®, once a day.
Yes, at 5.30 in the evening. I make sure I do it at home. I am allowed to take it with me to my friends' houses. Do other people see me taking them? No, I make sure they don't. I don't want them to see. I'm scared they would start asking questions.
I have to go to the hospital every three months of course, and they also hear about that at school. They ask me why I have to go to the hospital. I don't know what to say and make something up. Then I say I have to take medication for my lungs or something.
Staying over somewhere? Yes, but only at people's houses whom I've told I have something wrong with my lungs. When I have to take my tablets, they think it's because I have something wrong with my lungs. They support me and help me to remember to take my pills, which is nice. It's just not that great that they don't know the truth.
I take my medication in secret where nobody can see, in my mom's room. My big brother doesn't even know. What about when I stay over somewhere? Then I take them with me, go to the bathroom and take them there. If people wouldn't react so stupidly, I wouldn't care so much, but to protect myself against their reactions I do it that way. I don't like sneaking around, but it is the solution. At school, they often ask why I have to go to the hospital and I say I have anemia, but I don't really know what that is myself. I also have an iron deficiency.‹