You've probably come to this page because you've found out that you have HIV and you are starting to look around for some information on what this means. You might also be wanting to know what you can do about it. You're taking the first step on the life-long journey of learning to live with HIV.
In this discussion, we're going to cover two topics: what you need to know right now as a person who is newly diagnosed, and what you can do as you adjust to this new factor in your life.
What You Need to Know
You Are OK ...
The first thing you need to know is that you are OK. You are not going to die right away. You do not have to tell everyone that you are HIV positive. But most importantly, you do not have to pretend that everything is as it was before, because it is not. Just remember, your life is not over. You have plenty of time to deal with this news.
Receiving a diagnosis of HIV changes your life forever. It is normal that you will feel a lot of different emotions as you come to accept the idea of living with HIV. How are you feeling right now? Maybe you have just found out, and you're calm. Or maybe you found out a month or two ago and were OK until someone made a thoughtless remark. Or maybe you've been drinking and partying a bit too much or have retreated into your shell, but now feel you can't do that forever.
Whatever you are feeling, it is really important to tell yourself that it's OK and to give yourself permission to feel those feelings. It's a good idea to let them out -- be angry, be sad, be confident, be calm, be afraid, be numb. If you become overwhelmed by your feelings, try to be careful not to hurt yourself or those around you. Consider getting help from professional counsellors, from friends and family, and especially from other people living with HIV. Talking about your feelings can help a lot.
... And You Have a Future
You may not believe it right now, but HIV is not a death sentence. There have been significant advances in the care and treatment of HIV. People with HIV now live long, productive lives. In fact, doctors speculate that many people with HIV might live out their natural lifespan.
So, since you're likely to be around a while, you have a future. You can still have sex, you can still have meaningful relationships, you can still have a family and you can still have a career. Maybe you are thinking that there is no point in pursuing any of the goals you had before being diagnosed. Tell yourself it's OK to feel discouraged right now, but don't give up on yourself or your dreams. If you're feeling sad and hopeless or if you don't enjoy the things you normally do, and it's not going away, you might want to speak to your doctor about it. You may be experiencing depression. This is normal and there are treatments that can help you.
Are there going to be a lot of new challenges? Yes -- both health-related and social -- but there are services and individuals available to help you. There are groups called AIDS service organizations, or A.S.O.s for short, that help people with HIV, people like you. ASOs are also a good way to find other people living with HIV. You might not be ready to contact an ASO yet, and that's fine. Take your time. They will be there to help you when you are ready to talk with somebody. In the Resources section, you can find ways to get connected to an ASO in your area.
You might be feeling like you wish you had never found out about your diagnosis. It's true that it is hard to hear at first. But the fact that you have been diagnosed means that you can take steps to take care of yourself. Knowledge is power. It's a cliché, but with HIV it's true. By knowing your status, you can decide how you want to live with the virus. Maybe you won't want to know too much at first, but as time goes by, have confidence that you'll learn what you need to, and you'll find your own way of living with HIV.
What You Can Do
If you haven't done so already, do your best to find a doctor who is experienced in treating patients with HIV. If you have a family doctor, it may be that they are already very knowledgeable about HIV and how to treat it. Or they might not have a lot of experience with HIV-positive patients. If this is the case, they will probably refer you to an HIV doctor to make sure you get the medical care you need. An HIV doctor could be an HIV specialist or a non-specialist doctor who has many HIV-positive patients. The thought of having a new doctor might be scary, but HIV treatment can be very complex and you want to make sure you are getting care from someone who knows about HIV treatment. Sometimes finding an HIV doctor can be difficult, especially if you live in a rural area. Unfortunately, there aren't very many HIV doctors outside of the largest cities in Canada. Your best bet is to contact your local AIDS service organization (ASO) for information about HIV doctors in your region. The Resources section lists ways to find an ASO close to you.
Once you are connected with an HIV doctor, your next step might be to find out about the services available to you as a person living with HIV. Local ASOs are found across the country and they offer a lot of different services for people living with HIV/AIDS, including counselling, referrals, and advocacy. Depending on the organization, they might also offer services like a food bank or a needle exchange. The Resources section lists Web sites that can help you find an ASO in your area.
ASOs are also one of the best places to connect with other people with HIV. For example, your local ASO might organize confidential support groups, or they might have a peer-mentor program where you can be paired with someone who's been living with HIV for a while. Connecting with people who have HIV and who understand your concerns and needs is a fantastic way to learn about how to live with the virus. When you feel you're ready to talk, peers can offer support to help you deal with the emotions you're experiencing and can give you practical advice about how to live with the disease. Here is what some people with HIV said they wished they knew when they were first diagnosed (links to external page).
Remember, everyone has a different way of dealing with HIV and some people seek more support than others, so don't be afraid to ask for help or information.
Tell (Some) People About Your Diagnosis
You might want to tell people who are close to you that you have HIV so that you can get emotional 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 is a good listener? You may tell different people for different reasons.
If you do decide you want to tell someone, here are some tips that might make it easier for you:
- Choose carefully who you tell
- Pick a safe, comfortable place to have the talk
- Prepare yourself
- Emphasize the importance of confidentiality
- Have realistic expectations
- Don't feel responsible for the other person's reaction
You may also decide to tell certain healthcare providers, like your dentist, so that they can give you the most appropriate care.
Or, you may tell others so that they can be aware of the risk of exposure to HIV. You might tell your former, current and future sex partners so that they can get tested, or to protect their health. If you are uncomfortable telling a former sex partner that you have HIV, you can ask Public Health to notify them anonymously.
You might be wondering: what are my rights and responsibilities? Am I obligated to tell people about my HIV status? The answer is generally no, you do not have to tell your employers, landlords, healthcare providers, family or friends if you don't want to. Your HIV status is a part of your personal health information and that is your business. However, HIV-positive people do have a legal duty to disclose their status before they engage in any activity that places another person at significant risk of HIV infection (such as unprotected sex or sharing needles). In Canada a person with HIV may be criminally prosecuted for having unprotected sex without telling their partner about their HIV status.
This is probably scary news, but it doesn't mean that you can't have an active, healthy sex life. (See the HIV prevention links in the Resources section for ways to make sex safer). If you are looking for advice about how to tell sex partners about your diagnosis, you might ask for advice from a counsellor at your local ASO. As well, other people with HIV can share their experiences with you. Use the links in the Resources section to read about some personal perspectives on disclosure.
Remember you don't have to tell everybody, and you should evaluate the risk to you before you tell -- unfortunately there is still stigma and fear attached to HIV, even though discrimination against people with HIV is illegal. Think carefully about disclosing to someone if it might be dangerous for you to do so.
The Resources section lists links to Web sites with more information about your rights and responsibilities concerning disclosure.
Keep Yourself Healthy
Remember: today, people with HIV are living for a long time with the infection. Part of making that happen is keeping yourself healthy, and that means taking control of your health. Learning about HIV and its effects on your body means that you can be in control of the virus and not it in control of you.
You won't necessarily need to start treatment right away. The decision to start will be something that you will discuss with your doctor. Together you will weigh many factors. During this time, you might find it helpful to learn more about HIV and HIV treatment.
It's true that the amount of HIV treatment information available can be overwhelming because HIV treatment is complicated and there is new information all the time. But there are excellent, reliable HIV treatment resources that can help, including CATIE (that's us, the Canadian AIDS Treatment Information Exchange). Other HIV treatment resources are listed in the Resources section.
If you learned of your HIV diagnosis because you had a life-threatening infection, then a good first step might be to learn more about that particular infection and its treatment and prevention. You likely took some medications to help fight the infection and your doctor or nurse spoke with you about some of the basics of taking care of yourself. You might have received a lot of information really quickly. If you missed some of it, don't hesitate to ask again at your next visit.
Aside from learning about HIV there are other aspects to keeping healthy; some are simple while others might be more difficult. Three of the most important things you can do are eat well, exercise and get the emotional support you need. For people living with HIV/AIDS, staying healthy means taking care of your immune system. That includes eating nutritious food, exercising regularly and finding ways to deal with anxiety, stress and depression.
Also, drinking alcohol and using drugs can make it harder for you to stay healthy as a person with HIV. You might decide to try to change your habits. Don't be afraid to ask for help if you need it.
Keep the People Around You Healthy
Keeping the people around you healthy means preventing HIV transmission. Find out how HIV is transmitted so that you'll know how to avoid passing HIV on to your children, your sexual partners or the people you do drugs with. HIV can be transmitted through four bodily fluids: blood, semen, vaginal fluid and breast milk. So practise safer sex by using a condom and not sharing sex toys. And if you inject drugs, don't share needles, water and other injecting equipment. Be assured that HIV is not transmitted by sneezes or coughs, by casual contact (handshakes, hugs or kisses), by sharing cups, plates, utensils or food, by using the same towels or bed sheets, or by swimming in the same pool.
As a person with HIV, you should also consider being tested and treated for any sexually transmitted infections (STIs), because having an STI makes it easier to transmit HIV. Another thing to keep in mind is that if you are newly infected, the amount of virus in your body is very high so HIV can be transmitted more easily. It is especially important to use prevention methods during the first six months after infection.
If you are pregnant or would like to become pregnant, talk to a doctor who is experienced in HIV care about reducing the risk of transmitting HIV to your baby. If proper precautions are taken, the risk of mother-to-child transmission can be reduced to less than 1%.
There is a lot of information out there about preventing HIV transmission, and you want to make sure that what you're reading or hearing is accurate. Use the HIV prevention links in the Resources section to find reliable sources. And remember, the responsibility for prevention belongs both to you and the person at risk of being infected.
Finally, focus on living positively with HIV. This might sound impossible at first, but there are people who can help you with this -- whether it's friends, family or other people living with HIV/AIDS. Don't underestimate the power of a positive attitude! It will help you to live a longer, happier and healthier life.
Finding ASOs in Your Area
CATIE's toll-free phone line 1-800-263-1638 and Web site
Canadian AIDS Society and CAS members
Links on the Canadian HIV/AIDS Information Centre Web site
Disclosure: Your Rights and Responsibilities
Disclosing Your HIV-Positive Status from the Canadian HIV/AIDS Legal Network
Disclosure: Personal Perspectives
To disclose or not to disclose? from The Positive Side
Disclosure Dilemmas from UK-based Positive Nation
HIV Treatment Information
CATIE's toll-free phone line 1-800-263-1638 [if you're in Canada] and Web site, where you'll find:
Treatment resources from the British Columbia Persons with AIDS Society
Preventing HIV Transmission
Specific Web documents on HIV transmission
HIV Transmission Guidelines for Assessing Risk from the Canadian AIDS Society
Positive Prevention Resources from BCPWA Society
How Risky is it? from the New Mexico AIDS InfoNet
Other resources about receiving a diagnosis of HIV
Now that you know - life after diagnosis from Voices of Positive Women
Day One: After you've tested positive from Project Inform
How do I start? from the New Mexico AIDS InfoNet
Video interviews with people living with HIV from the English charity DIPEx