Young People

Living with HIV

Our youth services are run by young people living with HIV themselves, so we understand the challenges you are facing and can provide practical support to help you achieve the best emotional, social, and physical well-being.

So whether you’ve recently been diagnosed, are moving to adult services, are managing medications, or dealing with college or personal relationships – we can help. We are positive.

We need more peer led services like this, I didn't know how to express fears or find a solution to my doubts because I never knew how. I have met friends that I can speak to about HIV without fear of judgement.
Since accessing the youth service I ahve a better understand of my HIV and I now know that I am not facing this alone, HIV does not definte me. I do!

Personal Stories

Read the personal stories of other young people who we’ve helped here

support for young people living with HIV from other young people living with HIV

Our Services

Recently Diagnosed?

Have you tested HIV positive for the first time in the last 18 months? We know that being diagnosed with HIV can be a worrying and confusing time. With our programme of workshops, one to one support and groups, help is never far away

Our recently diagnosed weekend workshops are here to help you gain a better understanding of HIV, talk about treatment options and discuss living with HIV as part of everyday life. You’ll also meet other people in a similar position, facing the same kind of concerns. Dates and further information can be found here

1-to-1 Peer Support

What is peer support?

Peer Support links people with similar issues so that they can share knowledge and experience.

Who delivers our peer support?

Our Peer Workers are people living with HIV themselves who are trained to provide a comprehensive package of emotional and practical support around all aspects of living with HIV.

Advice on Benefits and Welfare

If you are experiencing financial difficulties or need support around welfare, our benefits advisor can help

Our benefits advise team can check your benefit entitlements, help you to complete the necessary forms, advocate with the Department of Work and Pensions and your local council and attend medical assessments with you. Appointments are available by request.

Advice in Clinic

If you want to meet one of our mentors in your hospital or health clinic, we provide peer support in several London clinics

St Mary’s Hospital (900 Clinic) – Every Tuesday

Mortimer Market (TEAM Clinic) – Every other Tuesday 16:00-20:00

For further details on clinic dates please email info@positvelyuk.org

Want more information or to talk to someone? Contact us on 020 7713 0444 or email info@positivelyuk.org

We can help you with:

Through one-to-one and group peer support we can help you with:

  • An HIV diagnosis
  • Sexual health
  • Relationships
  • Starting a family
  • Social Services
  • HIV treatment and adherence
  • Disclosure
  • Finance and benefits

Frequently Asked Questions

HIV (human immunodeficiency virus) is a virus that attacks the immune system. It is a transmissible virus that is present in blood, genital fluids (semen, vaginal fluids, and moisture in the rectum) and breast milk. It is mainly passed on to someone else during unprotected anal, vaginal and oral sex or by sharing injecting equipment.

Whereas HIV is a virus that can be passed on, AIDS (acquired immune deficiency syndrome) is a combination of illnesses and symptoms caused by having HIV over time. The virus affects the body’s immune system, the part of the body which usually works to fight off germs such as bacteria and viruses. A weakened immune system leaves the body more vulnerable to attack by a range of different diseases and opportunistic infections. It may take many years for somebody who has HIV to develop AIDS if they are not on treatment. HIV medication can stop the virus damaging the immune system altogether.
 

No, there is currently no cure for HIV/AIDS but modern HIV treatments are very effective and help to manage your HIV. They suppress the levels of the virus in your body down to very tiny amounts until they are so low (Doctors call this undetectable) in blood samples, which is the goal of treatment. As long as you take your medication correctly at the times prescribed (known as adherence) you can expect the virus to stay at this very low level indefinitely.
 

HIV is not an easy virus to catch sexually, but if you are worried that you may have been exposed to a risk the first thing you should do is go to your doctor or a sexual health clinic and get an HIV test. If you do this straight away (and within 72 hours) you may also be prescribed PEP (post exposure prophylaxis) which can stop the virus before it has a chance to take hold. PEP is also available at any hospital Accident and Emergency department. (If you have an undetectable viral load the risk of passing HIV is extremely low, close to zero. Please consult your doctor if you are unsure about your viral load or medication).

It’s also helpful to understand how HIV is and is not transmitted.

HIV is found in body fluids including genital fluids (vaginal fluids, semen and moisture in the rectum), and blood. The main ways that HIV is passed on are through unprotected anal or vaginal sex and by sharing injecting equipment. Performing oral sex may pose a small risk if there are sores or bleeding gums, as this provides an easy route for infection, but the person with HIV would need to have high virus levels (viral load) to make this likely. Condoms provide excellent protection against HIV transmission during sex. Effective HIV treatment, which reduces viral load, has been shown to reduce the risk of transmission.

Saliva, spit, urine and faeces are not infectious for HIV. You cannot get HIV from kissing, hugging, or by shaking hands with somebody with HIV – or any other normal social contact. Nor can you get HIV by being in the same place as someone with HIV, or by sharing household items such as crockery, cutlery, or bed linen. HIV is not passed on by spitting, sneezing or coughing. Many sexual situations have no risk of transmitting HIV such as masturbation, receiving oral sex and vaginal or anal sex using a condom.

Telling a sexual partner about HIV is an individual decision, and it can be difficult one to make. If you would like support around it you could speak to one of our youth peer-support worker, someone else living with HIV who has gone through similar experiences.

Further information on risks of transmission can be found at aidsmap and i-base
 

The BHIVA (British HIV Association) guidelines (Section 8.4.1; page 50) recommend that all mothers known to be HIV positive, regardless of antiretroviral therapy, and infant PEP, should be advised to exclusively formula feed from birth.

If you are unsure about any of the information provided our trained mentor mothers are here to help.

Always consult your doctor for health related matters.
 

If you are on the pill (female contraceptive pill) you need to tell your doctor. Some pills are not effective in combination with some HIV treatments. Other things such as diarrhoea or taking antibiotics may also affect the pill. Always consult your doctor if in any doubt.
 

Talking about our HIV and disclosing our status to others is one of the most challenging things about living with HIV. Deciding who and how to tell can feel very daunting, especially when we are first diagnosed. There are lots of different people we might want to disclose to: a partner, family, friends, work colleagues and healthcare providers. Here are some general tips on how to go about this. For more information and things to consider with particular audiences, download our Talking about HIV factsheet.

General disclosure tips

  • You don’t have to tell anyone or everyone. The choice is yours about whom to tell. Be selective
  • Easy does it. In most situations, you can take your time to consider who to tell and how to tell them
  • Consider the five “W’s” when thinking about disclosure: who, what, when, where and why:
    • Who do you need to tell?
    • What do you want to tell them about your HIV infection and what are you expecting from the person you are disclosing your HIV status to?
    • When should you tell them?
    • Where is the best place to have this conversation?
    • Why are you telling them?
  • Consider whether there is a real purpose for you to tell this person or if you are simply feeling anxious and want to “dump” your feelings
  • Telling people indiscriminately may affect your life in ways you haven’t considered
  • You have a virus. That doesn’t mean you’ve done anything wrong. You don’t have anything to apologize for simply because you are HIV positive
  • Keep it simple. You don’t have to tell the story of your life
  • Avoid isolating yourself about your status. If you are still not able to tell close friends, family members or other loved ones about your HIV status, allow yourself to draw upon the support and experience available to you, through organized groups in the HIV community
  • There’s no perfect roadmap for how to disclose. Trust your instinct, not your fears
  • Whatever the response you receive in a specific situation, and even if it doesn’t go the way you’d hoped, you’re going to survive it and your life will go on
  • Millions of others have dealt with this experience and have found their way through it. You will get through it too
  • Choosing whom to tell or not tell is your personal decision. It’s your choice and your right
  • Telling people is easier when you have good knowledge about HIV, as you will be more confident about answering potential questions
  • Like most things in life, telling people gets easier with practice
  •  

Having HIV can affect people’s feelings about sex in many different ways. Some people become anxious about passing HIV on, or feel less desirable. While some people may go off sex altogether for a time, others might instead look for it more and more. It may seem more important than ever to feel wanted or to have moments of intimacy and pleasure.

Some people living with HIV believe that a partner with HIV is the perfect solution. These days, with so many people on treatment with an ‘undetectable’ viral load, there are many people living with HIV who are in relationships where the partner is not HIV positive. Whatever the HIV status of your partner, the success of a relationship will probably be determined more by shared interests rather than HIV status.

Most people living with HIV do continue to have sex and form relationships. If you use condoms, it’s unlikely that you will pass HIV on to a sexual partner. If your HIV treatment is effective and your viral load is ‘undetectable’, it’s unlikely that you will pass HIV on to a sexual partner, even if you don’t use condoms.

However, condoms are important for your health too – they will protect you from sexually transmitted infections. Some infections, such as hepatitis C, can be more difficult to treat when you have HIV. So it’s a good idea, particularly if you have multiple sexual partners, to get regular sexual health check-ups.
 

It is helpful to have HIV specialised services around you, it allows you to engage with other young people living with HIV. Ask your doctors or clinicians about these. However since in some area there are not many young people living with HIV you may have to move around.
 

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