How should I be feeling now I know I’m HIV+?

People react differently to receiving a HIV+ diagnosis. This is natural as no two people are the same, we are all individuals. There is not necessarily a right or wrong way to react, and like many other people who have been diagnosed HIV+ you may be feeling or worried about any one or more of the following:

• You may be feeling shock or anger
• You may just feel "numb" or a feeling of "emptiness"
• You may feel angry at yourself or the person you suspect to have infected you
• You may feel guilty that you put yourself at risk (e.g. having had unprotected sex) of infection
• You may feel isolated, "I must be the only person with HIV, or feeling like this"
• You may feel like the situation (being HIV+) is outside of your control
• You may feel insecure about the future "how long do I have?"
• You may feel like "hiding away" or "shouting it from the roof-tops."
• You may feel relieved that you now know your situation
• You may feel regret for having found out your situation
• You may feel anxious or depressed
• You may be worried if you have passed on the virus to somebody else (your partner or children)
• You may be worried about who to tell about your HIV status (close family and friends)
• You may be worried about who to tell about your HIV status (work colleagues, GP, dentist and other people that you are not necessarily "close" to)
• You may be worried about other people finding out about your situation and how they may react
• You may be worried about your current and future health
• You may be worried about your ability to carry on or start working in the future
• You may be worried about practical issues such as housing, finances, your children’s care
• You may be worried about if or when to start anti-HIV treatment
• You may feel worried about where you can get services or support
• You may feel worried about sex and your future sex life
• You may feel worried about your diet, smoking, alcohol or recreational drug-use

It is important to remember that you are the same person as you were before you got your HIV test result. The only real difference is that you are now aware of your HIV status whereas you were not before.

It is not unusual for someone to feel any or all of the above, when they discover they are HIV+ (or if they have any other health problem for that matter). It is important that you allow yourself to feel what you feel and give yourself time to adjust to this news. Many HIV+ people describe the first few weeks (or even months) after diagnosis as an ‘emotional roller-coaster’.

Not everybody’s reaction is necessarily typical or negative; some people feel that their diagnosis gives them a new "focus" on their life and the future.

Do I have to make a lot of changes in my life?

Ultimately this is up to you, although it may be wise to not make any dramatic changes straight away (e.g. suddenly going on a health-food kick). Some people do make many changes because of their HIV status and sometimes find this a time when they ‘Re-address their priorities in life’

It is important that you look at how you can take care of yourself and your immune system and some ways of doing this could include things like:

• Getting proper rest
• Reducing stress
• Having a better diet
• Having a "healthier" life-style, for example reducing smoking, alcohol or other recreational drug-use
• Regular exercise

Many HIV+ people don’t make such changes or only do so to a certain degree: "If I gave up smoking right now, I couldn’t deal with the stress". Again, it is up to each individual and making too many changes in your life all at one time can, in itself, be stressful.

Do I have to tell people?

This again has to be your decision and depends on the people you are considering telling, why and how you want to do so and how you think they may react. Some HIV+ people decide not to tell anybody about their situation, others want to take time to adjust to the situation themselves before they tell anybody else.

It is a major decision to make, however, and you need to think through all the possibilities before you take any action.
It is important to remember you are not obliged to tell anybody about your situation; it is information that is personal to you and for you and nobody else to share on your behalf unless you ask them to do so.

What about the person who infected me?

You may or may not know who passed on HIV to you; in fact, they themselves may not know they are HIV+. If you do know the person who infected you and they do not know their HIV status, it is important that they be notified to prevent further infection. You may not feel comfortable in doing this, in which case a Health Advisor at a G.U.M. Clinic may be able to give you advice and contact them (they do not necessarily need to give any information about you).

Some HIV+ people feel angry with the person from whom they got HIV, however it is important to remember:

• The person may not be aware of their HIV status
• Nothing can change the fact that you are now HIV+, no matter how angry you may feel about this person
• We all have to take responsibility for our own actions. If we have put ourselves at risk of HIV infection (through having unprotected sex or sharing needles during drug-use) we must take responsibility for that action and move forward. It may sound like a cliché, but we cannot turn back the clock, all we can do now is move forward.

What can I do to take control of my situation?

Some positive steps you may wish to take include:

• Educating yourself about HIV, how it works, how to avoid some of the HIV-related illnesses or recognise their symptoms, the currently available treatments for HIV, their benefits and side effects. ‘Information = Empowerment = Choices’;
• Talking about your feelings might help: this could be with a partner, relative or friend that you trust, a counsellor or Health Advisor, a support group or a telephone helpline;
• Talking to other HIV+ people: this may help you feel less isolated, many of the fears and concerns you might have as a person living with HIV are often shared by others in a similar situation;
• Having regular health checks (including CD4 Counts and Viral Load tests) will help you and your doctor to decide if and when you should start anti-HIV treatment;
• Many HIV+ people believe that a ‘positive outlook’ has helped them in coping with HIV, they describe it as ‘I’m in control of HIV, it’s not in control of me’;
• Other than medication there are other approaches that some HIV+ people use to boost their immune system, such as the use of Complementary therapies (e.g. Aromatherapy, massage and Acupuncture), these can also help with dealing with stress, symptoms or side-effects of treatment;
• You may want to take Vitamin or other food supplements; these can help with boosting the immune system and the side effects of treatments. Good nutrition is important in HIV infection; you must to a Dietician, or your HIV specialist for further information and advice as some vitamins/supplements may interfere with HIV medication;
• Practical issues such as housing, employment, welfare benefits could be resolved through talking to a Social Worker.

Should I start taking anti-HIV treatment immediately?

There are many different view-points on this issue. Any decision to start anti-HIV treatment should be made in partnership with a doctor. You may wish to consider the following factors before you make a decision:

• Your CD4 count level (more particularly the trend of results, rather than on the basis of one result) which is the measure of an important part of the immune system;
• Your Viral Load Test level (again it can sometimes be the ‘trend’ that is more significant than a single isolated result). This measures the number of virus particles in a cubic millimetre of blood – remember this test cannot measure HIV in other parts of the body such as the lymph nodes;
• The current state of your physical health;
• The current state of your emotional and psychological health and ability to cope with and adhere to the treatment regimes associated with anti-HIV treatment. For example, when you are newly diagnosed you may be feeling stressed and having to stick to a treatment regime at this time may not be something you feel comfortable with;
• Are you ‘ready’ to start taking treatment? Would taking anti-HIV treatment make you feel more ‘in control’ of HIV or would it feel that ‘HIV is taking over my life’. How you feel about this issue can have a major influence on your ability to adhere to the regimes;
• What are the potential side-effects of the treatments your doctor proposes to prescribe and are you prepared and able to deal with them?

It is important to remember that recent advances in anti-HIV treatment means that many people with HIV are living longer with HIV. However, decisions in regard to anti-HIV treatment are becoming increasingly complex. It is important that you make an informed decision about taking such treatments and that you can stick to those decisions. It is now increasingly recognised that adherence to treatments and their complex regimes is a major factor in the success or failure of such treatments.

The decision to start taking treatment is ultimately your own, talking to your doctor, HIV organisations, accessing information and talking to other HIV+ people can help you make the decision, but it must ultimately be your informed choice.