Aids/HIV information, Symptoms, treatment

Because of the stigma attached to HIV/AIDS many people feel guilty or ashamed after learning that they’re HIV positive. Experiencing AIDSphobia (fear of people with HIV/AIDS), homophobia (fear and hatred of lesbians and gay men), or any kind of prejudice is hurtful. Some people worry about what others will think when they find out. Worries about HIV can bring up uncomfortable feelings about your sexuality or drug use. You may worry about infecting others, or think that AIDS is a punishment. The reality is that no one is at fault for being HIV positive.

 You may need to develop ways to protect yourself emotionally from other people’s prejudice, whether that means not telling people about your HIV status, or joining together with others to work for change.Sometimes language is used to pressure you to deal with your emotions in ways other people think are right. Often the word “denial” is used in a way that is judgemental and assumes that there is a “correct” way to respond to HIV/AIDS. The word “anger” also gets misused. For example, you may complain about receiving poor health care and be told that you are “carrying around a lot of anger.” This is insulting and a way to avoid addressing your concerns.

Telling someone you’re HIV positive is a very personal decision. Who to tell, when and how to tell them, and why you want to tell them are all important questions. One reason to tell someone you’re HIV positive is to have someone to talk with about what you’re going through.

Family, partners, and friends

 The people who are already close to you can give you support. To help you decide who to tell, you could ask yourself the following questions. Who do you feel ought to know? Who accepts and doesn’t judge you? Who loves and values you? Who respects your privacy? Who is practical and sensible and reliable? Who has responded well to requests for help in the past? Who’s a good listener? You may decide to tell different people for different reasons.

 You may be afraid of how loved ones will react to your having HIV. Depending on your situation, there may be certain people who are hard to tell - maybe your parents, or your children, your partner, or your close friends. You may have to tell people things about yourself that they didn’t know. If you’re gay, or bisexual, and people don’t know, talking to them about HIV can be difficult. This can also be true if you have been having sex outside a relationship, or if you use drugs, and people don’t know. But many spouses, partners, friends, and relatives will be able to recognize the courage and trust it takes to talk about being HIV positive. Many people with HIV find that taking a chance and talking with people they trust results in deeper, closer relationships. You have to balance the risk of rejection with the possibility of support. A counsellor at your nearest AIDS group or needle exchange program can help you decide whether, or when, to tell someone. A counsellor can also help you deal with your feelings about how people react when you do tell them.

You don’t have to tell anybody until you’re ready. And you don’t have to tell everyone all at once. You’ll probably find that you feel comfortable with different people at different times. Trust those feelings and do what feels right.

Other people with HIV

Talking with other people who have had the same kinds of experiences as you can give you support and practical tips about how to deal with issues. These people can help you develop a strategy for managing your health by sharing what has worked for them.

You may eventually decide that you want to be public about your HIV status. Speaking in public forums, attending conferences, and participating in AIDS activism can be interesting and rewarding. On the other hand, you may decide to tell only a couple of people who are close to you. This can be a very different issue depending on whether you live in a big city, small town, or rural or remote area. The important thing is that you choose who to tell and how to tell them, and that the people close to you respect your decision.

Your doctor

 If you don’t feel comfortable telling the doctor you go to now, it may be a good idea to find a new one. This can be hard if you don’t live in a city, because there are fewer doctors to choose from. You may find yourself educating your doctor about AIDS. Your nearest AIDS group can make referrals to knowledgable doctors and can recommend material for your doctor to read. You or your doctor can also contact the Community AIDS Treatment Information Exchange’s HIV/AIDS Treatment Information Network for treatment information. Finding a doctor who knows how to treat HIV/AIDS is important. Doctors who are not specialists but who know a lot about HIV/AIDS are sometimes called HIV primary care physicians. 

Other people you deal with

 You have the right to privacy, and it’s up to you to decide whether you’re going to give personal information to someone. Unfortunately, some people still discriminate against those who have HIV. Use your judgement with people you don’t know very well. If you don’t want people you tell to tell anyone else, make that clear.

In most cases, your employer and the people you work with do not need to know. Landlords and neighbours do not need to know. Unfavourable reactions could affect your housing situation or cause other problems that you don’t need

Sexual partners and people you share needles with

Discussing your HIV status with someone you’re having sex with is a very different issue from telling someone in order to receive support. It can be hard to decide whether and when to tell that person. Do you tell someone as soon as you meet him or her, or do you wait until you’re going to have sex? Does it make a difference whether this is a one-night stand or an ongoing relationship? What if prostitution is how you make your living?Some people say you should tell anyone you’re having sex or shooting drugs with. Other people say you don’t have to if you’re practising safer sex and using needles safely. This is something you’ll have to think about. Talking about it with other people who are HIV positive may help you make up your mind.You might consider contacting people who you have had unsafe sex with, or anyone you’ve shared needles unsafely with, so that they can decide whether they want to be tested or not. Unless you were tested anonymously, if you’ve just recently tested HIV positive you may be contacted by your local public health office and asked to give the names of recent sexual partners or people you’ve shared needles with. A counsellor at your nearest AIDS group can help you figure out who needs to know and may be able to give you suggestions about how to deal with the public health office.There have been a couple of legal cases where people who knew they were HIV positive have been taken to court for infecting another person through unsafe sex. The law in this area keeps changing.Sometimes people are afraid to talk about their HIV status or safer sex because of how other people may react. This fear can make a lot of sense, especially if you’re worried about rejection or violence. No one should ever push you into sex that you don’t want. If you need advice on how to get your partner(s) to have safer sex, or if you have fears about your relationship or safety, talk to someone at your nearest AIDS group.There are sections on sexually transmitted diseases and safer sex in Chapter 7. You can also get information on safer sex from your nearest AIDS group or public health office. You (or you and your partner[s]) may also want to talk about sex with a counsellor. Counsellors are available at most AIDS groups.Remember, deciding who you’re going to tell is up to you.

Someone living with HIV/AIDS, you may experience prejudice, or stigma (when someone tries to make you feel bad or ashamed). Too many people still don’t understand how the virus is spread, and a social stigma is attached to many of the communities that have been most affected by AIDS. AIDS has been wrongly associated with the lifestyles of so-called “high-risk groups,” rather than with risky activities. Add to this the misconceptions that HIV is easily spread and that testing HIV positive means you’re on the verge of death, and it makes some people feel that those living with HIV/AIDS are dangerous.

Whether you’re gay or not, you may have to deal with homophobia - fear and hatred of lesbians and gay men. If you are lesbian, gay, or bisexual, or if you don’t label yourself in any of these ways but have sex with members of the same sex, homophobia can hurt you in a very personal way.

If you are straight, you may find it difficult to use the services of AIDS groups which mostly serve the gay community. And you may resent people being prejudiced against you because they think you are something that you aren’t, especially if you dislike or fear homosexuality yourself.

The stigma associated with HIV/AIDS is much broader than homophobia. Gender, class, cultural beliefs, language, education, ability, etc., all affect how easily people can use services. If you are not connected to people who are affected by HIV or AIDS, you may find it difficult to get information and support.

 It is the responsibility of different levels of government and of AIDS groups to overcome these barriers, but there are things you can do. For instance, you may want to help educate people about HIV and AIDS, or get involved in an AIDS group or activist group to help make changes. You’ll have to figure out for yourself how to respond to prejudice. Remember, you don’t have to educate everyone you meet about HIV and AIDS.Stigma affects who you decide to tell about your HIV status.

There is no “correct” way to respond emotionally to living with HIV and AIDS. And it’s not simply a matter of dealing with your emotions and then having things go back to normal. Dealing with your emotions is always an ongoing process of adjusting and readjusting. You may want to resist changes in your life and hold onto the way things were before you knew you were HIV positive. You may find yourself feeling angry and frustrated. Anger can take many forms. You may feel anger as well as sadness when friends or loved ones with HIV get sick or die. Anger can be a positive force, and it often drives people to become involved with AIDS activism. For some people, discovering that they’re HIV positive can actually bring relief from uncertainty. Or you may have been bothered by health problems without understanding why you had them. Finally knowing can bring some relief and allow you to take action.

Some AIDS groups provide many kinds of services, information, and referrals that can be useful to you. They may offer people you can talk to (this sometimes includes peer support groups and counsellors), information on treatments, education about HIV infection, help with financial problems, legal services, political advocacy, needle exchanges, care teams or buddies, transportation, and many other things. And they can direct you to physicians, complementary therapists, counsellors, lawyers, social workers, clinics, hospitals, and detox centres.   

Larger cities have more groups and more resources. In some areas people have established AIDS groups to address their specific needs. For example, there are groups of gay men, women, Aboriginal people, people from different cultures, deaf people, prostitutes, people with hemophilia, drug users, and prisoners. Services are available in several languages and are offered in ways that are sensitive to different cultural groups. If you have access to a computer you may be able to communicate with AIDS groups through the Internet. Contact your nearest AIDS group to see what’s available in your area.

When you’ve been told you have HIV or AIDS, it’s natural to have questions like, “What will happen to my health?” “Can I or should I continue to have sex?” and “Should I tell my family?” It may seem that there are too many questions and no place to start.People who have HIV or AIDS face many challenges. Having a weakened immune system is hard on your body. It can be emotionally overwhelming, and can leave you discouraged and despairing.You are not alone.

There are things you can do to stay healthy longer. The more we learn about HIV and AIDS, the longer people are living. There are ways to prevent infections and delay the progression of HIV disease. And if you do get sick, there are many new treatments that can help.Figuring out how you’re going to look after your health can help you avoid health problems. Your approach should be flexible so it can respond to changes in your life.To take care of yourself physically, you can exercise, eat properly, take antiretroviral drugs, take treatments to prevent infections, take vitamins, and get plenty of rest.

 Mental and emotional health are just as important. It helps to talk about HIV to the people who are important in your life. Other people who have HIV may be able to understand your feelings and offer advice. You may want to check out a support group. Some community-based AIDS groups can provide counsellors and help you find other forms of emotional support. Consider becoming more involved in your community. For some people, spiritual and religious beliefs are helpful; you may find guidance from an Aboriginal elder or other religious leader, or through prayer, traditional Aboriginal healing, or meditation.

Different things will work for different people; find out what works for you. Your nearest AIDS group, other people living with HIV/AIDS, complementary therapists, and health care professionals can all give you advice. Make the changes that you feel comfortable with, and don’t try to do everything at once.