HIV stands for Human Immunodeficiency Virus. It is a virus which affects the immune system. The immune system is the body’s way of fighting off germs, illnesses and infections.
For more facts about HIV, visit this page.
CD4 cells are part of the immune system. Your immune system works in your body to keep you well. CD4 cells are in the blood, they fight off germs and help prevent illness from developing in your body. CD4 cells are measured by taking your blood. Measuring the number of CD4 cells in your body is a good way to see how HIV is affecting you and your immune system. It is also measured to see if your HIV medication is working. The aim is to have a high CD4 number which is a sign that you have high immunity and your cells can fight off illnesses.
A viral load is the amount of virus that is your blood. It is measured by taking your blood. The number counted in your body is a good way to see how HIV is affecting you and your immune system. The aim is to have a low viral load count. When your viral load is very low it becomes classed as undetectable. (see next question)
Having an undetectable viral load means there are such low levels of HIV in your blood that it cannot be seen or measured, even with sophisticated scientific equipment. When your viral load is undetectable, the virus cannot impact your immune system, an undetectable viral keeps you well. If you have an undetectable viral load, you cannot pass on HIV during sex (with or without a condom).
It can be difficult to take medication for a range of reasons. Below are some challenges that young people have told us they face and tips on how to overcome them.
Forgetting: if you find taking your medication difficult to remember, you could:
- ask an adult you live with to remind you;
- take your medication at the same time as someone else in your home, (or a friend you know from CHIVA- you can remind each other)
- ask your clinic for a pill box. A pill box is a container made up of smaller sections, with days of the week written on each section, which you can put your medication into. Each day, you open the relevant section for that day and take the medication inside. If you ever forget if you’ve taken your medication or not, you can check the pill box – if the box is empty for that day, it means you’ve taken it and if not – you can take it! It’s important to refill the box each week!
- Pill box keychain: having your pills on a small key chain can be helpful if your schedule is varied and you’re not always at home when it’s time to take your medication
- set an alarm on your phone
- Use an app such as pill reminder or carezone- thess can also help if you have multiple medicines to take at different times during the day
Side effects: If side effects are a barrier, talk to your doctor or nurse about it.. Together you might be able to discuss different options (including changing the times you take your medication, taking it at a meal time, changing your medication, or taking other medication to help reduce the side effects from your HIV medication.
Reminded of HIV: We understand that the daily reminder of living with HIV might be difficult for some people. To help ease these feelings, it might be helpful to focus on the purpose of the medication and how it supports you to live well. It can also help to connect with other young people who know what you’re going through. If you are struggling to accept your HIV status, you can talk to CHIVA. We support a range of young people living in the UK and Ireland. You can get in touch with us here.
HIV impacts people in different ways. Some people who are not taking their medication can feel ill quickly, whilst others even without medication may feel fine for a while. Regardless of how you may feel or look, without medication, HIV is still negatively impacting your immune system. Medication keeps you well and strong so that your body can fight off infections, germs and bacteria, so it’s important to keep taking them even if you do feel well.
HIV is transmitted from person to person, but it doesn’t mean it will happen every time there is a possible route of transmission. Firstly there needs to be high levels of HIV in the body, (a high viral load) and then the virus needs to be strong enough (usually because a person is not taking medicine or the medicine is not working properly any more) for it to be passed on. It is quite common to find siblings where some have HIV and others don’t, and there are different reasons for this.
If your sibling(s) is older: at the time your mum was pregnant with your older sibling(s), her viral load may not have been high enough to pass on HIV during pregnancy, delivery, or breast feeding. If a person isn’t taking medication, research shows there is a 15% to 45% chance of HIV being passed onto the baby, so transmission isn’t expected everytime. Also, your mum may not have had HIV at the time she was pregnant with your older sibling(s).
If your sibling(s) is younger: your mum may have found out about her HIV status by the time she was pregnant with them. This means she was able to take the medication or (maybe) have a different birth delivery or feeding options to stop HIV being passed on through vaginal birth or breast feeding. With the right medical interventions (taking HIV medication or having a cesarean section – if the person is not undetectable) the chance of passing on HIV is reduced to less than 5%. The chances of passing on HIV are even lower than this if the baby is not breastfed.
Your mum may not have known about her HIV status when she was pregnant with your younger siblings (and therefore was not taking medication). If that is the case, it is important that HIV is not passed on during every pregnancy/birth (there 15% to 45% chance).
There are many different possibilities to this question. The answers may or may not bring comfort. If you would like to talk more about how you’re feeling, you can contact us here. We can talk to you confidentially or support you to have a conversation with your parents/guardians about this.
There is currently no cure for HIV but scientists are working on one, and are also working on vaccines (to prevent people from getting HIV). It is not clear yet when these might be available and research is ongoing.
Scientists are also working on injectables, which would mean being able to give HIV medicine through a needle. This could mean people living with HIV would have the option to have an injection every month/two months, rather than having to take daily tablets.
Yes, you can have a baby if you are living with HIV, and your baby can be born without HIV. There are different options available to you depending on whether you have a detectable or undetectable viral load. With the right medical care, your baby can be born without HIV, If you are on HIV medication and you are undetectable, the chance of you transmitting HIV to your child is less than 1%. For more information on different situations visit this AIDSMAP page.
If you are taking your HIV medication and you have an undetectable viral load, you cannot pass on HIV during sex. If your viral load is detectable, it is possible to pass on HIV. Using condoms or PrEP can prevent this.
Regardless of your viral load, it is important to think about your sexual wellbeing, and that of your sexual partner’s.
You don’t have to tell your school/college/uni or work about your HIV status. Some people choose to though. if you do decide to do this, the school/college/uni must keep this information confidential. To find out more visit this page on rights.
Most jobs do not require you to tell your workplace or manager about your HIV status. The only exception is if you want to become a commercial pilot, dentist or surgeon. You can still do these jobs if you are HIV positive, but you will need to agree to have additional blood tests. You cannot be on the front line of armed forces if you are HIV positive. To find out more about this, and why, visit this page.
There is no single way to tell someone that you have HIV, but it is important to tell them at a time you feel ready and when you feel like you know the basics about HIV yourself, so that you can answer any questions the person you’re telling might have, if you feel comfortable doing that. We have a lot more information to help you prepare for talking to someone about your HIV. Some people have also found our film ‘Life Growing Up’ useful to share with others once they have told them about their HIV, as it answers a lot of the questions people may have.
For more information visit this page.
Unfortunately, for some people living with HIV, their status is shared before they are ready to share it themselves. If someone is in a professional role (such as a doctor, nurse, teacher or support worker) they must keep your HIV status confidential. This means there are laws against them sharing your HIV status – unless it is under special circumstances. For more information about this, confidentiality and your rights, visit this page.
If someone you know and trust personally (like a friend or family member) shares your HIV status, you can get support from your clinic or CHIVA about what next steps to take to manage the situation. Each situation will be individual and will have different impacts, so it’s important to get the support you need to deal with it.
Stigma is when a person is seen or treated in a negative way, because of something they experience (like a health or mental health condition) or because of something that makes up their identity (such as their gender, age, sexuality, ethnicity, religion, etc.) Stigma is often based on the wrong information and on stereotypes.
Stigma can lead to discrimination which can be direct and obvious, such as in making negative comments and teasing, or unintentional or more subtle where the person may avoid contact with you, or say incorrect or stereotypical things that are accidentally hurtful. If you think someone is treating you unfairly because of your HIV, please seek help as it is illegal for them to act in this way and there are rights in place to protect you. Get in touch with us if you are at all worried about this.
There are many people living with HIV across the world. Here are just a few:
Saidy Brown (HIV advocate, who particularly focuses on the experiences of young people growing up with HIV – South Africa based)
Angelina Namiba (HIV activist – UK based)
Mercy Shibemba (winner of the Diana Princess of Wales Award, former CHIVA Youth Committee chair, and HIV activist – UK based) HIV Positive and proud: What’s with the stigma? BBC News
Danez Smith (performance poet and writer – US based)
Magic Johnson (former basketball player – US based)
Gareth Thomas (former Wales rugby captain – UK based)
Lloyd Russell-Moyle (MP – UK based): Nicholas Niwagaba (HIV and sexual and reproductive rights advocate – Uganda based)
Conchita Wurst (Eurovision song contest winner with a platinum certified debut album).
Right here! CHIVA organises online and face-to-face events for young people living with HIV to connect with other young people across the UK and Ireland. We run quarterly regional support groups, plus a Support Camp and a creative arts residential every year, as well as other smaller events throughout the year.
We also have a list of other organisations supporting people living with HIV in the UK.