Telling others or keeping it to yourself?

Strangely, for many people, the most difficult thing about living with HIV is not so much the condition itself or thevertellen treatment, but the way some people react to you. You might continue to wonder for the rest of your life: ‘Whom should I tell about my HIV? And when should I bring it up?’ Or do you choose to keep it to yourself? People will very often reactive in a positive way if you tell them about your HIV. But sometimes you might also get a negative reaction, and that can have a huge impact. If you decide to tell certain people but not others, can you trust those people not to tell anyone else? For many people with HIV it is a very gradual process: as time goes on, they tell it to more and more people. But it can also happen that someone is very open about it at first but later decides not to tell any new people about it, for example if he or she starts a new job.

You won’t find any ready-made answers here. No one can give you those. What we can do is tell you about how other people deal with things. A Hiv Vereniging study showed that four in ten people with HIV had told everyone in their family about their HIV, while one in seven had not told anyone in their family. One-third had told all their friends, while one in ten had told no one in their circle of friends. At work, people are less open about their HIV: half of those who took part in the study had told none of their co-workers.

The experiences of others
Everyone deals with HIV in his or her own way. A sampling of experiences from the book Plus Minus:

Mark: ‘You can’t process something like that on your own. I wanted to share it with a few people I trusted completely.’

Simon knew straight away that he wanted to be open about his HIV with everyone: family members, friends, and his fellow employees in the police force. He has never regretted his decision.

Things got complicated for Nikos because he told his girlfriend and his parents-in-law, but not his own mother. This is a real burden for his mother- in-law, since she is a good friend of Nikos’s mother. But she respects Nikos’s choice and is keeping the news to herself.

Petra told her parents and teachers. Because her parents didn’t want Grandma to find out, and because her ex-boyfriend lives in the same village as Grandma, she did not tell her ex and other members of her family. But her ex-boyfriend studies at the same school as Petra. For one teacher who has Petra’s ex-boyfriend in his class, it is very difficult not being able to talk to him about it. But the teachers have kept their promise not to tell anyone else.

A Member of Parliament told it in confidence to a fellow party member and a high-ranking official, and both of them have kept it to themselves.

Lisa’s father told the news to his other daughter, and Rob’s manager told it to Rob’s co-workers. Those others did not react negatively, but still....

Why would you want to tell people about your HIV?
Because HIV plays an important role in your life from time to time. It is on your min and you would like to be able to share that with people who are close to you.

  • You prefer not to live with a secret.
  • You feel the need for support. And this way, you will discover who your real friends are and who may not be such good friends.
  • You think that others will understand you better if they know that you have HIV.
  • You notice that you are becoming more closed in other areas too, because you have not told people that you have HIV.
  • You want to be able to take your HIV medications openly, in front of others. Or you do not want to have to think of an excuse each time your alarm sounds as a reminder to take your pills.
  • You simply do not know why you should not say it. You think HIV is a normal condition or should be seen as one. If you had some other condition, you would tell people that too.

And when should you tell others about your HIV?
Many people with HIV have the feeling that there is no such thing as a ‘perfect moment’ to tell some- one that you have HIV.

  • Straightaway 
    Because you are afraid your sex partner might otherwise run a risk of becoming infected. Or because you do not want to be disappointed later. Because you simply want to get it over with. Or because you have too often heard: ‘Why are you only telling me this now?’
  • After you have known each other for a while 
    Because that way the other can get to know you as a person first. Or because that way you won’t have the feeling that you are being labelled straight away.

If you want to tell a group of people, for example the people you work with, the members of your family or your team mates, should you tell them separately? That way you can respond to each person individually. Or should you tell everyone at the same time? That way, people can talk about it among themselves and you will not have to worry about it anymore.

Why would you not want to tell others about your HIV?
You are still not sure whether you want others to know. Once you have told someone that you have HIV, you cannot ‘undo’ that.

  • You are ashamed of your HIV or you feel guilty about it.
  • You do not want to be labelled. You are afraid that others will think of you as being dirty or that you are gay or a whore, or that you have had a wild sex life. You do not want other people to see you differently or act differently towards you
  • You have already had some negative experiences yourself, or you have heard of the negative experiences of others.
  • You are not having any problems from your HIV and it does not play an important role in your life.
  • You do not want to have the feeling that you are burdening others with your problem.
  • You do not want to create problems: an employer might not offer you a job; a date might decide to cancel.
  • You do not know whether you can trust someone not to tell others.
  • You have the feeling that you are not (yet) emotionally strong enough. If you could feel confident when you tell someone about your HIV, there might be less chance of getting negative reactions. And if you did get a negative reaction, you would be able to deal with it better.
  • You do not want to have to be like a social worker. If you tell someone about your HIV and that person knows little about it, you may have to give them a lot of information and that can be very emotionally charged.
  • You already practice safe sex. So it really doesn’t make any difference if you tell your partner or not. The important thing is not what you say in bed, but what you do! You think it is hypocritical if someone no longer wants to do certain things – or even anything more – in bed with you after you have told them about your HIV.
  • You don’t feel the need to share it with anyone.
  • You can’t think of any reason why you would tell anyone.

No obligation to tell anyone
You do not need to tell anyone that you have HIV. That includes people at work, your family doctor (GP), your medical specialist and your company doctor. Of course it might be better for you if you told your doctor, since HIV could play a role in any health problems that you might have. All doctors (also company doctors) are bound by a duty of professional confidentiality. That means they are not allowed to tell anyone that you have HIV unless you give them permission to do that. If you are already using HIV medications and a different doctor prescribes other medicines for you, it is a good idea to tell him or her about it, since there are many possible interactions between HIV medications and other kinds of medicine. If you are absolutely sure you do not want to do that: your pharmacy will also check for any possible interactions.

What about your dentist?
You can tell your dentist, but you are not required to. It might be to your advantage to tell him or her about your HIV, since your dentist could be the first one to notice that your immune system is getting weaker, for example if you have Candida or little ulcers (aphthae) on your tongue or gums. All caregivers need to assume that anyone could have HIV or a disease like Hepatitis. Hepatitis is much easier to pass on to other people than HIV. That means that your dentist must always have good hygiene while working. Many people who tell their dentist about their HIV are only scheduled for the very last appointment of a day. That is not really necessary. The standard hygienic measures that your dentist takes are enough. That means that any patient who visits the dentist after you also runs no risk. Some dentists use the excuse that they have more time to explain things at the end of the day. Others say that they need more time to clean their instruments afterwards. Those kinds of excuses only work to increase the stigma, of course.


Hiv Vereniging Nederland

Eerste Helmersstraat 17


020 6 160 160
>> directions



020 689 25 77

For questions about living with HIV. Available monday, tuesday and thursday from 2 PM till 10 PM

>> read more


Support the association and become a member
>> contact Servicepunt