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Learning You Are HIV Positive

Coping with and talking about your HIV test result

Andrew Sullivan is a successful writer based in the US. He is living with HIVScream, shout, cry, laugh, hide, run away, feel numb, scared, lonely, relieved. How did you think you would react to a positive result before you actually had the HIV test? Were you right? There are some things that you can only understand when they happen to you.

Reaction to the result is different for everyone. Over time, you'll find a way of dealing with it that suits you, but it might be quite different to the way other people cope with it. Try and think about living - thousands of other people live full and rewarding lives despite HIV, you can do it too.

"Just like every other person I know, I was very shocked since I just got tested five months prior." - Cliff

"I remember driving to the hospital thinking to myself, it's going to be negative. I was quite sure it was going to be negative. But it wasn't. "I'm sorry to say it has come back positive" the nurse said. Then the surprising thing happened, I didn't fall apart. For so long I had thought about what I would do if I became HIV+, and in those thoughts it was always the same, that I wouldn't cope. Don't get me wrong, I wasn't over the moon about the result but I didn't break down. I just decided to deal with it." - Patrick

Your first action as a person living with HIV is make a choice - what to do next. The choices won't stop there; making the right ones to enrich and extend your life might play an increasing part in every new day. This page is about giving you the choice to take control, make informed decisions, and get on with your life.

"To all of us who are positive stay strong and don't let anyone put you down, life is not a rehearsal it is here and now so live the best way you can. Just know that every exit is an entry somewhere, and life goes on, stress free" - Nomakanjani

Please go to our stories section if you would like to read personal stories of people living with HIV.

It's not easy

No one ever suggested any of this would be easy. If you need time and space to think your situation through, take it. Whatever you're going through is natural. How you deal with this news is up to you. HIV is threatening your existence, so it's alright to be angry. If you are scared, express your fears. Don't be hard on yourself and don't force yourself to be strong if you don't want to be.

Stress is natural and affects your emotions. It can help you to deal with some situations. However, excessive stress can cause physical symptoms, it can damage your immune system and make you ill. Take stock and find ways of managing the stress in your life. Find ways to relax and recharge your batteries. Listen to your body; if you are tired, rest and you'll be better for it.

Choose things that work for you

HIV can bring anxieties. One way of tackling these are through getting information, by learning about your condition, gaining confidence in it, in yourself and making informed choices for your future.

"I am a 29 year old gay Latino who found out he has been HIV + since '97. Back then I, like everyone around me, saw this as a death sentence. I have come to learn that this not true. After my diagnosis, I started looking for all the information I could find on HIV. I felt that right off the bat I needed to know what I was up against. I also needed to make sure my family and close friends knew what was going on in my life. HIV is not something people can nor should they go through alone. You need people to win this fight, whether it's family, friends or a support group, people are the key. - " - Juan

Getting information

Receiving a positive diagnosis, even if you were anticipating the result, is often very unsettling. As a result some people just accept the information they are given without really understanding it, or forget to ask questions essential for their peace of mind. However, being well-informed about HIV and related issues can be vital and doctors, support organisations and other people living with HIV can all provide both advice and information.

Ultimately all decisions relating to your life will still be made by you, so if you are unclear about anything, for example the different types of HIV drugs or the side effects of antiretroviral drug treatment, then ASK. Although the issues HIV raises can be surrounded by jargon, being assertive and getting informed can be as useful as any treatment.

Who to tell?

A couple living with HIV in Kenya and their two sonsWho is told, and how, can take a bit of thinking through. Telling close friends and family can provide enormous relief and support, but it can also cause problems. Do people really need to know? Do they need to know immediately? Unfortunately, it's a fact of life that there's still a lot of stigma attached to an HIV diagnosis.

"If anyone reads this and has just been diagnosed I know its hard but there is light at the end of the tunnel and just keep going on and never look back. I have come to learn to be careful who you tell as this causes major problems take it from experience. People at work found out and this has been hard, my family disowned me when I personally told them. The best point I think is only tell those you can trust like your doctor or closest friend." - Matt

Many people are still afraid of catching HIV through normal social contact. Your background or culture may also play a part in how difficult it might be for you to tell other people that you are HIV positive.

"We have been very closed about our status for several reasons. We live in a rural area, our kids, my job (nurse), and his job (he works with the public)." - Anon

Who you tell and how you tell them will take a bit of thinking through. There can be advantages to talking openly about your status, but it could cause you problems. Be careful who you tell, don't rush off and tell everyone straight away - you might regret telling them later. Do they really have to know? If so, do they have to know now, or can you leave it till later? But sharing the news of your positive status with the right people can strengthen personal relationships and help you feel less isolated.

"I have also told two people at work. After I had told them I thought Oh God I have put such a huge burden on them, because I asked them to keep this big secret, but they told me that they felt privileged that I trusted them so much that I could tell them. Since telling them nothing has changed between us, but now they come to doctors appointments with me, and they are people I can talk to about my worries." - Patrick

Probably the first thing that someone you tell will think about is how you got infected. If they're kind enough not to actually ask, be careful that they aren't making assumptions about you. For example, in some countries an HIV positive heterosexual man is automatically assumed by many to be gay. This could cause problems if anti-gay legislation is enforced in that country.

Talk to people you can trust, but try to make sure they will respect your need and right to confidentiality on this issue. Try to make sure whoever you discuss it with is sympathetic to your viewpoint, someone who won't judge you on your lifestyle, sexuality or being HIV positive.

This might be difficult, and though you think you know who your friends are, telling others about this might either confirm or damage personal relationships.

If you are gay, some people find that telling others about your status is like "coming out" all over again.

Your partner

Just as your HIV positive result was possibly a big event to happen in your life, if you're in a relationship the news will also have an impact on your partner. Consider the highly emotional aspects of revealing your status and, if possible, avoid the "heat of the moment" to reveal all. No two relationships are the same, so it's difficult to give advice in this situation.

If you're going to tell, don't delay it for too long. If they are negative, or untested, they might resent you keeping it to yourself, adding unnecessary worry about any risk of infection they might have been in.

"I wish that anyone who has been diagnosed with the virus if you are involve in a relationship and you do not want to tell that person practice safe sex at all times and let us try to stop the spread of HIV/AIDS." - Angella, partner of an HIV positive man

Of course, if you discussed the issue before you were tested, talking through the result might be easier.

Previous partners

You'll probably need a lot of time to work this one through. Whether you tell previous partners depends on lots of things, including whether you're still involved with them now, what they know about HIV, whether they're HIV positive themselves (and how do you find out?), and whether they need to know, perhaps because you had unsafe sex with them before you knew your status. How will either of you deal with worrying about who gave whom what?

Children

If you have children, you may have additional concerns about whether to tell them your diagnosis and whether they need to be tested too. Parents may well need to talk to someone with experience in this area - your clinic or local AIDS service organisation, or other parents with HIV might be able to help.

Friends

Disclosure could be when you find out who your friends really are. Carefully deciding who to tell might teach you how to deal with telling others. Common reactions are: shock, pity, disbelief, helplessness, or endless questions. Some people may decide they don't want to know or see you any more. But your real friends will carry on as before, liking and loving you for who you are, supporting you through any problems you have.

"I know it must be hard for every and each of you. Not just for you with HIV or AIDS but also for the people that do love you. It is hard for me." - Maria

Remember, being HIV positive does not stop you from being the person you were before you knew your test result.

"Individuals living with HIV, are not asking to be different. They are no different than anyone else, only that they are living with an illness and that illness is HIV." - Bradford

Family

No two families are the same either. If your immediate family are supportive and loving, your news will bring them anxiety and pain, but could also strengthen your relationship. The alternative is that some members of your family will shun you. If you're gay don't assume your family don't know if you haven't come out to them. They may have chosen to ignore "that part of your life", perhaps inventing their own excuses. Not telling parents could eventually make them even more upset. You know your family better than anyone else does, it might be a gamble, but it's your decision.

Your culture may make it impossible to discuss HIV with your family and friends. There are many organisations and helplines who may be able to put you in touch with other people in a similar situation to you who might be able to offer support or listen to your concerns.

"It is hard as a mom to see this and not be able to fix it. I was able to when she was little, she would get hurt and I could fix it. I feel helpless now, as I can't fix this disease that she has. Her other sibling don't seem to be able to overlook the sickness and see their sister as a person. She has gave me many a sleepless nights and so many wonderful gifts over the years how am I going to be able to let go and let god take care." - J who has an HIV positive daughter

Choosing to have children

Many women feel that because they or their partner are HIV positive, they can't have children. This is not the case, although there are a number of issues that need to be considered.

If both partners are HIV positive, sexual intercourse without a condom can still be risky. This is because there are different strains of HIV. If a person is re-infected with a different strain, they may be more susceptible to difficulties with antiretroviral treatment.

If a woman living with HIV wants to have children with an uninfected partner, her partner may be at risk of HIV infection if they have unprotected sex. To get around this many couples try artificial insemination, so that there is no risk of infection.

When the man is HIV positive, some couples choose to use a technique known as 'sperm washing'. This involves separating the sperm cells from the semen, which is thought to virtually eliminate the risk of HIV transmission. Sperm washing is however expensive, and is unavailable in some parts of the world.

Ensuring her unborn child is uninfected is usually a high priority for an infected pregnant woman. Effective treatment now exists to prevent the transmission of HIV from mother-to-child during pregnancy and birth. Guidelines are also available to help prevent the transmission of HIV through breastfeeding. Considerations about taking treatment for your own health when you are HIV positive and pregnant are discussed in our page about HIV and pregnancy.

Related organisations - Learning you are HIV Positive


All the quotations are extracts from stories sent to AVERT. If you would like to add your personal story of living with HIV or AIDS, then please email us with what you would like to say and the country you are from.

 

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