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I just found out I’m HIV positive
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I just found out I’m HIV positive

If you have just been diagnosed this can be a scary time.

Stop. Take time. It is going to be ok.

An HIV diagnosis may be unexpected. Or may have been something you were worrying about for a long time.

Even though it may not feel like it, your health will be better now you know your HIV status. This is because you can now get the right monitoring and treatment.

Finding out you are HIV positive changes how you feel about your life. It is likely to change your relationships with other people. You have the time to work this all out.

It will probably take a while for the news to sink in. Some aspects of being HIV positive take time to come to terms with.

Even if you feel worried, frightened, upset or angry now, it will get easier. You will still be able do all the things you wanted to do before you learned that you were HIV positive.

HIV for most people can be easily managed and treated. This doesn’t mean that life will always be easy or that HIV should been taken lightly. It does mean that if you are careful, you can live a long and healthy life.

Treatment is highly effective, generally easy to take and is now routinely recommended for anyone who is HIV positive. Being on treatment also makes it difficult to pass HIV to other people.

Although finding out you are HIV positive is a shock, it will get easier.

Modern treatment means that you can still do everything you planned before you found out you were positive. You can also have as long and as healthy a life as if you were HIV negative.

Confidentiality

After you are diagnosed, the only people who know your status will be you, your doctor and other health care workers involved in your care at the HIV clinic.

  • Healthcare workers can not tell anyone about your results without your permission, including your family doctor or your partner.
  • Who you choose to tell, and when you tell them, is for you to decide.

Getting support

Think about who you can trust with this information. Think about whether this is news they will be able to deal with. Once you tell someone you can not take that information back.

  • If you think that the person you want to tell will not be able to cope, then you may have to do the research first, to help them with the news.
  • If you do not want to talk to a friend or family members, then at least speak to one of the health advisers or counsellors at your clinic. They should be able to help you with your first questions. They can also help you access other support services.
  • Outside the clinic, many HIV community organisations run phonelines and support groups.

Friends and family

Because HIV is now largely treatable, there is rarely any urgency to have to tell other people until you feel ready to do this. You can take time to learn about HIV and treatment before you tell family and friends who may still be shocked and worried.

  • Telling someone your HIV status may change how they think about you or how they treat you. Many people may have a more positive response now because there is treatment. Many others will have a gut reaction based on fear and worry. Stigma is still a problem in many communities.
  • On the other hand, keeping things secret in the long-term is likely to cause you stress. It will make a big difference and will help you to have at least one or two close friends who you can talk to.

Peer support

Knowing other people who are also HIV positive can made life a lot easier. Being HIV positive without knowing anyone else in the same circumstances is difficult.

It really helps to be able to talk to someone who is living with HIV.

Here at Body Positive Dorset we have a Blog that you can read and join, or simply send us a message with your questions. We have all been in the same situation as you, and have been through what you are going through now. So we are here to help and reassure you that you are not alone. We may be able to put you directly in touch with someone in your area.

Online forums are a good way to communicate with other people, especially if your are more geographically isolated. The best and most established is run by poz.com. Although it is based in the US the poz forums include a lot of contributions from people elsewhere.

More recently, the THT set up a similar forum based in the UK called myHIV.org . This requires a more complicated registration process but you can still do this using a made up name if you want to do this anonymously. You need a working email address to register.

If this is all new to you, it will take time to get your bearings and build up your strength to deal positively with your new life. It will also depend on where in the world you live.

The following suggestions may help:

  1. Take some time to let the information sink in – unless you have symptoms – ie you feel ill – there is rarely any urgency to starting treatment, however the latest WHO guidelines recommend starting ART treatment as soon as you are diagnosed.
  2. Ask at the centre that you tested at, where your closest and best HIV doctors work – I know healthcare systems vary greatly in different countries. In the UK Sexual Health Departments can test and diagnose if you are positive, and then arrange for you to see a Sexual Health Advisor who can discuss your diagnosis with you.
  3. You will need to have a blood test called ‘CD4 T cell count’ to see whether HIV has affected your immune system yet, and a viral load test if it is available in your country.
  4. Find some good sources of accurate, easy to understand, clear information so you can learn about your diagnosis, and the benefits of treatment if and when you need it. You can go through the other FAQs on this page, go to the Links page and get good information from those sites. You can also visit our Contact page where you can ask a question or send us a message. Please visit our Blog page where you can read posts from other HIV Poz people about their own stories and issues related to HIV.
  5. It is difficult to deal with an HIV diagnosis on your own. Consider telling a close friend that you trust, or see whether there is an HIV support group or organisation in your area. It can help to meet and know other people in a similar situation. Many organisations also offer support services, such as phonelines, where you can talk anonymously, if this is important to you at first.

Things will get easier, although it may take time, remember you are not alone, we are here to help.

If you are HIV positive, choosing who to tell can be difficult and it’s important to think about how different people may react to being told that you have been diagnosed with HIV.

You may feel like telling people soon after you receive your HIV diagnosis – but remember that once you’ve told someone you can’t ‘un-tell’ them.

It is important to think about how different people may react to being told that you have been diagnosed with HIV. Things to think about include:

  • Why do I want to talk to this person about my HIV status?
  • What are the benefits of telling them?
  • Are they good at talking about emotional issues?
  • How would I like them to react ideally?
  • What will I do if they don’t react in the way I expect or hope for?
  • Can I trust them not to tell other people?

Telling someone that you have HIV can be a very positive experience and will hopefully mean that you have someone to offer you support.

But you have to be prepared for different reactions. Some people may become upset at your news, especially if they don’t know much about HIV. It might be useful to have some basic information to hand them to look at and provide reassurance.

Unfortunately some people may not react in the way you hope and may be unkind or discriminatory. If this happens there is support available to you such as counselling or support groups. This may vary depending on your location.

Before telling people it can be helpful to talk it over with a healthcare professional at your clinic.

Whether to tell your friends about your HIV diagnosis will depend upon your relationship with them. Often, confiding in a good friend can be an invaluable source of support.

Friends can be as close as your family, or even closer. If you haven’t shared much personal information with friends in the past you might not want to tell them about your HIV status. It may be helpful to ask yourself if the person you want to tell:

  • has been helpful when you talked about problems in the past.
  • accepts and loves you.
  • respects your privacy.
  • is a good listener.
  • is practical, sensible and reliable.

It is important to think about how they might react. You may have friends who are already knowledgeable about HIV and others who know less; so it is important to be prepared for any reaction.

Deciding which friends to tell might also depend upon culture. In some cultures HIV is something which is hard to talk about because of the fears people have about it or the myths they believe.

Also, friends from any culture may believe incorrect information about HIV and treat you differently or unkindly. If you think your friend might react like this, it may be easier for you to get support from an HIV organisation or a support group for other people living with HIV.

Sometimes people become upset and have exaggerated worries about what your HIV diagnosis means for your health.

They may also be concerned about the risk of the virus passing to them. So it can be a good idea to have leaflets to hand to give to them so they feel reassured.

If you have been diagnosed with HIV you may be thinking about telling family members – but your decision will depend on the relationship you already have with them.

It may be helpful to ask yourself if the person you want to tell:

  • has been helpful when you talked about problems in the past.
  • accepts and loves you.
  • respects your privacy.
  • is a good listener.
  • is practical, sensible and reliable.

Family members may have incorrect information about HIV and treat you differently or unkindly. If you think your family might react like this it may be easier to get some support from an HIV organisation or a support group for people living with HIV.

If you do decide to tell someone in your family, it might be useful to have some leaflets you can show them – people may have exaggerated worries about HIV and having something to read may be reassuring.

Some people worry that if they become unwell and have to be admitted to hospital, the medical staff might disclose their HIV status to their relatives against their will.

Generally doctors wouldn’t disclose someone’s HIV status. They might explain that the person has a condition like pneumonia, for example, without mentioning their HIV infection.

In some situations medical staff might encourage people to disclose their HIV status so they can get support from their family, but they will not force them to do so.

Often people don’t understand the ways HIV can be passed on, or they may feel worried and upset about your health.

They will be reassured to know that you’re getting good care from your HIV clinic and that you know where to get support and how to take care of yourself.

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HIV Basics

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HIV Transmission

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Do I have HIV or need to test?

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HIV Testing

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HIV Treatment

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