In this section you will find general information about Living with HIV:
- Living with HIV
- Thinking about HIV
- Talking about HIV
- Socialising with HIV
- Sex and HIV (including PEP)
- Information for Partners, Families, Friends, Co-Workers
Living with HIV
As well as the free services available from GOSHH there are many other resources for People Living With HIV (PLWHIV). These resources can help you to decide what you would like to do now you know you are living with HIV.
Some people find that they need to make no changes at all to their lifestyle in order to manage living with HIV. Other people decide to make some changes about diet, exercise, rest, work or relationships. Talking to someone about the type of things you are thinking and what you can do to help yourself live a full and active, happy and healthy life, may be beneficial for you.
Some people may like the opportunity to talk to someone who is also living with HIV. We call this peer support. If you feel you would like peer support, or general support, please contact us and we can arrange for you to meet a project worker to discuss your options. We do facilitate a peer support group for people living with HIV and if you would like to join, please contact us.
Information on the services we provide for people living with HIV can be found in our leaflet.
Living with HIV in Ireland may be different from living with HIV in other countries. Dublin AIDS Alliance have published a great book called ‘Living with HIV in Ireland: A Self Help Guide’ which you can download here if you wish.
Thinking about HIV
Receiving a HIV diagnosis is often a time of crisis for people. Part of the crisis includes receiving a lot of information you might not fully understand. Some people choose to research HIV after they have been diagnosed and many websites are not suitable, up to date, or realistic about living with HIV. There are some websites that are respectful, informative, regularly updated and realistic about living with HIV. We have listed some of them here:
- http://positivenow.ie/about-positive-now/ (Positive Now – Ireland)
- http://www.tht.org.uk/myhiv (Terence Higgins Trust)
- http://positivelyuk.org/women/ (Positive Women)
- http://positivelyuk.org/men/ (Positive Women)
If you find other resources you think are worth sharing please let us know and we will add them to this list.
Talking about HIV
Although HIV is a notifiable infection in Ireland, this only means that the Doctor who diagnosed you needs to inform the Health Surveillance Centre that a person has been diagnosed – the information provided is anonymous. You do not have to tell anyone about your HIV status if you do not want to.
There are times when it is beneficial to you to talk about your HIV; however once you have told someone then you lose control of your information and you cannot prevent them from telling other people. You may want to tell a loved one, or friend, that you have been diagnosed with HIV. You may wish to inform your GP or employer. You may decide to tell everyone. Who you tell is up to you, and it will depend on how you feel about people knowing, and how well you think you will be able to handle their reactions. Some things you might wish to reflect on before telling someone could include:
- Why do I want to tell this person I am living with HIV?
- Is it important to me how this person reacts to my information?
- Can I answer questions they may have about HIV?
- How do I want to tell them?
- Do I need someone with me when I say this?
- Have I got all the information I need to make sure they can get support if they need it?
- Do I need to talk this through with someone first?
Our counselling and support service can provide practical and emotional support for you if you decide you want to tell someone you have been diagnosed with HIV. We can also support the person you have told, if they need it. We have more than one support worker here, so you can both receive support from different workers and your confidentiality will be maintained.
You can also talk through your options with your HIV consultant during your hospital visits. You will begin to hear lots of new phrases like CD4 and Viral Load. It is ok to ask your consultant or support worker what these phrases mean. Your health care is important and it needs to be right for you so if someone says something about HIV that you do not understand, you can ask them to be clearer.
Socialising with HIV
Everyone reacts to a HIV diagnosis differently. Some people find it quite stressful and can get tired easily, or feel down. You may find that you want to socialise but that you are not sure your friends will understand. It is important to remember that whatever you need to do, is right for you. Some people chose to change the way they socialise after they have been diagnosed with HIV, other people don’t.
Everyone has a different way of dealing with HIV in social situations. Try to be aware of your needs when you are visiting people, out with friends, or when friends come over. The most important thing for you to remember is that you are not putting anyone at risk from HIV by hugging them, chatting with them, kissing them, sharing food or drink with them, laughing with them, dancing with them or relaxing with them. You can enjoy your life just as much, now you know you are living with HIV, as you did before you received your diagnosis.
If you are taking HIV medication, you may be concerned about people noticing. There are ways to ensure people do not notice you taking medication and we can discuss this with you if you would like.
Some people chose to change the type of things they do when socialising, especially around smoking, drinking alcohol, or taking drugs. If you would like information or support about cutting down or stopping smoking, drugs, or alcohol, please talk to one of our support workers. We can tell you about what’s available and you can decide the best way forward for you.
Sex and HIV
For many people, being diagnosed with HIV can feel like the end of their sex life. Fears of transmitting HIV, concerns about telling sexual partners, thoughts about changes to sexual practices or being overwhelmed by medical information can all affect how you feel and think. It is natural for people’s libidos to change a little after a HIV diagnosis. For some people this does not last for very long, for others it can take some time to return to feeling sexy again.
HIV does not have to impact on your enjoyment of sex. Pleasure is something everyone is entitled to feel and express. Living with HIV does not change this. How you go about negotiating sex might change, and the type of sex you have could change (some people start to use condoms for example); the key to having sex when you are living with HIV is feeling ready to begin being sexually active after diagnosis.
If you are already in a sexual relationship you might need to stop having sex for a while, just until you feel ready again. This does not mean that the intimacy between you has to stop, it just changes a little. There are many different types of sexual activities you can try, that you may be very happy with, until you gain your full libido back again. We can support you to decide the best way for you to deal with these changes and if you are going to talk to your sexual partner(s), what you would like to say.
If you are having sex with someone and you are concerned that they may have been at risk from HIV transmission there is an emergency medication, which can be taken within 72 hours of the event, that helps to reduce the risk of developing HIV.
This medication is called Post Exposure Prophylaxis (PEP) and is available through some STI Clinics as well as emergency departments in hospitals. You can find a list of places in Ireland where PEP is available here.
Living with HIV – Information for Partners, Family, Friends, and Co-Workers
Upon hearing that someone you know is living with HIV it may cause many different emotions in you. Hopefully you will have heard it directly from the person themselves, and it will have taken a lot of courage for them to tell you. It is usual to experience shock, anger, fear, hurt, worry, and confusion. You may not know anything about HIV at all.
Everyone has different levels of knowledge and we all respond differently to life situations. We would recommend that as well as communicating with the person who is living with HIV, you also contact us. Talking to someone at GOSHH in confidence may help to clear up myths and misinformation you already have about HIV, and can also offer a safe space for you to express your emotions.
Someone who is living with HIV is a person who has received a positive diagnosis for HIV from a doctor or specialist. They may have only just received the information, or they could have been living with the knowledge for quite some time. It does not mean that they have AIDS and in most cases they will continue to live a long and healthy life.
It may be difficult for you to believe at first but HIV can only be transmitted in certain ways. You can continue living with, visiting, or working with someone who is living with HIV and not be at risk. Sometimes the initial shock of hearing your partner, friend, or family member has received a HIV diagnosis can prompt strong reactions like not wanting to touch them, hug them, or eat with them. Knowing the facts about HIV can help you to recover from this shock.
Once you have recovered from the shock, depending on the nature of your relationship with the person, you may be able to offer support. People who are living with HIV can often be scared of rejection by family and friends. If they have told you their status it means they have placed a huge trust in you. If someone has recently been diagnosed they may not have answers to a lot of the questions you might have. Try not to bombard them with questions. You can get information from us. The important thing is to listen and treat them the same as you always did.
One thing you may like to learn, if you don’t already know the information, are the universal procedures.
As there is no risk of HIV transmission from everyday contact with someone who is living with HIV, no-one in your family will be at risk from HIV. There is no need to stop family members from seeing each other, cuddling each other, or playing games together. HIV can only be transmitted from mother to child during pregnancy, and birth or after birth whilst breast feeding. There is no direct route of transmission for children from parents through everyday circumstances.
If you are a sexual partner of someone who is HIV positive you may be worried about whether you have caught HIV. It is important to remember that unless you get a HIV test you cannot know. Lying in bed and worrying about it will not tell you the answer, having a HIV test is the only way to know. You may like to think about getting tested for HIV. GOSHH can offer you information and support. HIV is quite a weak virus compared to other blood born viruses and it does not survive outside the body. Transmission can also be prevented by barriers such as condoms.
You may also be concerned that your partner has had sex with other people outside of your relationship. This is not necessarily the case. In a lot of cases people have no idea where the HIV came from as they have never been tested before and, even though a single incident of risk can result in HIV transmission, most people have had more than one incident of risk. If you or your partner ever had unprotected sex with someone before you met each other then neither of you can be sure where the HIV within your relationship came from, unless you have tested negative previously.
People who are living with HIV are not required to tell anyone about their HIV status. If you know someone who is living with HIV it is important that you only tell people you can trust. You may like to discuss who you can talk to with the person themselves.
Co-Workers and Employers
As there is no risk of HIV transmission from everyday contact with someone who is living with HIV, working with someone does not mean you will contract HIV from them.
If you are working with someone who is living with HIV then by Irish law this is classed as a disability according to Equality Legislation. This means that a person cannot be treated differently from anyone else within the workplace just because they are living with HIV. It also means that unless the person is subject to the usual disciplinary procedures for usual disciplinary situations, a person may not be suspended from work or fired because of their HIV status.
If you would like training around HIV for your workplace please contact our sexual health project worker.