Recently diagnosed with HIV: life goes on

With the right medical treatment and care, most people living with HIV in the UK are now expected to have a more or less normal lifespan. For example, a 40-year-old starting treatment today can expect to live into their 70s or 80s.

The earlier HIV is diagnosed and treated, the better your long-term health will be. Taking your medicines, not smoking and having a healthy lifestyle all make a difference.

If you’ve heard or experienced frightening things about HIV, it probably comes from a time or place where effective treatment wasn't available. That's not the situation in the UK today. With effective treatment, most people live well.

This means that HIV doesn't have to stop you from carrying on with the rest of your life. Most people living with HIV do carry on with their jobs and their usual activities, have relationships, and plan for the future.

And while adjusting to having HIV takes time, some people come to find positives in their experience. They describe a greater appreciation for life and health, a renewed focus on looking after themselves, and support from people close to them or others living with HIV.

Having a baby

Every year in the UK, over a thousand women living with HIV give birth and almost all have healthy babies who do not have HIV. You can avoid passing on HIV by:

• taking anti-HIV drugs during pregnancy,
• making a careful choice between formula feeding and breastfeeding (also known as chest-feeding), and
• giving the new baby anti-HIV medication for a few weeks.

Taking HIV treatment during pregnancy will protect your baby from getting HIV, and you may also need it for your own health. If the drugs reduce the amount of HIV in your blood to very low levels, you will usually be able to have a vaginal delivery.

You will have a choice about whether to formula feed or breastfeed. Formula feeding removes any risk of passing on HIV, while breastfeeding carries a very small risk even when your viral load is undetectable. Your HIV clinic can help you weigh up what's right for you.

Thanks to these safety measures, 99.8% of babies born to people living with HIV in the UK do not have HIV.

If you’re thinking about having a baby, but aren’t pregnant yet, it’s a good idea to talk to your HIV doctor about how you can prepare for a healthy pregnancy. 

Becoming a father

HIV can be passed on from mother to baby during pregnancy, but it cannot be passed directly from the father to the baby. 

Your doctor can give you and your partner advice on how she can have your child without her acquiring HIV. If you are taking HIV treatment, have an undetectable viral load and always take your pills, you don’t need to worry about passing HIV on.

Should I tell?

If you’ve just been told you have HIV, you may be feeling upset or confused. You may want to talk about it with other people. But it’s probably not a good idea to rush into telling lots of people that you have HIV before you’ve got used to the news yourself.

Although you will still be able to tell people later on, you can never ‘un-tell’ someone. Many people have fears, prejudices or negative attitudes about HIV.

Nonetheless, telling the right person can be a very positive experience. It can help you to get support when you most need it, and it can sometimes make relationships stronger.

For each person who you are thinking of telling, think about why you want to tell them and what you hope to achieve by doing so. Telling someone about your HIV status should not be something you are pressured into doing. 

Try thinking about how this new information will affect the person. Imagine the best way they could react – and the worst.

You may also want to think about the best time and place to raise the subject, and make sure that you only tell people you can trust to keep it to themselves.

Did you tell anyone that you were going to have an HIV test? If you did, it’s worth thinking about how you’ll answer their questions.

Telling family and friends

Whether to tell family and friends may depend on the type of relationship you have with them. If you don’t usually discuss personal matters, do you want to talk about this?

But there may be somebody you’re close to who has been helpful in the past. Is there someone calm, supportive and trustworthy you could turn to now?

Generally, people’s reactions will depend on what they know, or think they know, about the subject. There are lots of fears and myths associated with HIV. Some people you tell could be hostile or unkind.

Sometimes people do not know much about HIV, or have lots of questions. You might find it useful to have factual leaflets about HIV to hand to provide reassurance.

Other people may surprise you with their understanding and acceptance.

Telling your current partner

If you are in a relationship at the moment, telling your partner might open up a crucial source of support.

On the other hand, it could be a difficult situation for both you and your partner to deal with. There could be questions about how you acquired HIV. It may take some time for you and your partner to work through the issues that come up.

There may be concerns about whether you could have passed HIV on to your partner, or whether you could in the future.

Equally, there’s also the possibility that it was your partner who passed HIV on to you. It’s important that your partner gets tested for HIV – staff at your HIV clinic can help with this.

Some people face particularly difficult situations. You may rely on your partner for money or be worried about violence.

You may want some help or support to think these issues through. This will be available through your clinic, a local support group or THT Direct (0808 802 1221).

Telling a new partner

Telling sexual partners, or potential partners, can be daunting. You might be worried about being rejected if you tell someone you have HIV.

Your partner may have concerns about the risk of HIV being passed on, but may not be aware that effective HIV treatment prevents this. Letting them know about undetectable viral load may help them feel less anxious about sex. It has helped many couples feel that one of them having HIV is not ‘a big deal’.

You do need to think about the law, especially if there is a risk of HIV being passed on.

Timing can be important. It can be difficult to talk about HIV when you have only just met someone, but putting it off may cause problems later on. Some people find it easier when the first contact is online, rather than face to face.  

You can get advice from your clinic, a local support group or THT Direct (0808 802 1221). It may be helpful to talk to other people living with HIV about how they deal with these kind of situations.

Work and travel

As a general rule, your employer does not need to know about your HIV status – it rarely affects people’s ability to do their job.

If you’re worried about gossip being spread, you may want to keep the news to yourself. On the other hand, if your employer knows, it may be easier to have time off for appointments or to deal with periods of sickness.

In the UK, it’s illegal for an employer to discriminate against employees (or potential employees) because they have HIV.

People living with HIV are able to travel to most countries of the world. But some countries have restrictions, most often for people applying for a work or resident’s visa. This includes Russia and many countries in the Middle East.