Just diagnosed with HIV
What you can do
Get connected and talk to a doctor about HIV treatment
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 care you need, or you can ask for a referral. An HIV doctor could be an HIV specialist or a GP (general practitioner) who has many HIV-positive patients. Make sure your doctor knows about HIV treatment. Sometimes finding an HIV doctor can be difficult, especially if you live in a rural area. Unfortunately, there aren’t many HIV doctors outside of the largest cities in Canada. Your best bet is to contact your local HIV organization for information about HIV doctors in your region. Visit HIV411.ca to find an HIV organization close to you.
Your HIV doctor will talk to you about starting HIV medications (also called HIV treatment, antiretroviral therapy, or ART). Studies show that starting treatment early has huge benefits for your long-term health and for your lifespan. We now know that delaying treatment increases a person’s risk of developing serious illnesses, such as cancer, cardiovascular disease and life-threatening infections.
For some people, starting treatment right away might be tough due to personal circumstances (for example, if you travel a lot, you might be concerned that you won’t be able to take your meds every day at the same time). For others, side effects are a concern. Many people wonder how they will pay for their medications and whether insurance will cover the cost. Discuss these issues with your doctor.
- What do I need to do to be able to take my treatment every day, on an ongoing basis?
- How will it affect my daily life?
- What are some tools that can help to remind me to take my meds every day?
- What kind of coverage do I have?
In case you have a picture of HIV treatment involving handfuls of pills that you have to take every day, rest assured that treatment today has come a long way and can be simple to take. Many people need to take just one pill a day. And with the newer medications, most people do not experience serious side effects.
In addition to connecting with an HIV doctor, you will want to find out about the services available to you as a person living with HIV. HIV organizations across the country offer a variety of different services for people with HIV, including counselling, referrals, support groups and advocacy. Some also offer services like a food bank or a harm reduction program, with needle/syringe distribution. Visit HIV411.ca to find an HIV organization near you.
HIV organizations are also one of the best places to connect with other people with HIV. For example, your local HIV organization might organize confidential support groups, or they might have a peer-mentor program where you can pair up 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 are the stories of four HIV-positive youth.
- 4 people with HIV tell us how they feel about HIV treatment.
- Here is what some people with HIV said they wished they knew when they were first diagnosed.
- The Positive Side, CATIE’s health and wellness magazine for people living with HIV.
Remember, everyone has a different way of dealing with HIV and some people want more support than others. Don’t be afraid to ask for help and 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, 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 can you count on to respect your privacy? Who is practical and sensible and reliable? Who is a good listener? You may tell different people for different reasons.
If you decide you do want to tell someone, here are some tips that might make it easier for you:
- Choose carefully who you tell. You can always tell someone later but you can’t un-tell.
- Prepare yourself. Before disclosing, think about what you do and don’t want to tell.
- Pick a safe, comfortable place to have the talk. Try to choose a time when you won’t be interrupted.
- Have realistic expectations.
- Consider the different ways the person you’re telling might react and how you will respond.
- Don’t feel responsible for the other person’s reaction.
- Be prepared for questions they may have. You might also want to bring a brochure or resource about HIV to give to them.
- Emphasize the importance of confidentiality.
You may also decide to tell certain healthcare providers, like your dentist, so that they can give you the most appropriate care.
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 have sex that poses what the courts call “a realistic possibility of transmission.” In Canada a person with HIV can, in certain circumstances, be criminally prosecuted for having sex without telling their partner about their HIV status.
This might sound scary, 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 HIV organization. As well, other people with HIV can share their experiences with you.
If you feel uncomfortable about telling a former sex partner that you have HIV, you can ask Public Health to notify them anonymously.
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.
To learn more about your rights and responsibilities concerning disclosure, read:
- HIV Disclosure and the Law: What You Need to Know – Positive Women’s Network
- HIV Disclosure to Sexual Partners: Questions and Answers for Newcomers (available in 5 languages)
- Know Your Rights (available in 7 languages) – Canadian HIV/AIDS Legal Network
- HIV non-disclosure and criminal law: Implications of recent Supreme Court of Canada decisions for people living with HIV: Questions and answers – Canadian HIV/AIDS Legal Network
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.
Some people find that learning about HIV and HIV treatment makes them feel more in control. It’s true that the amount of information about HIV treatment 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).
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. In addition to taking HIV meds, you can eat well, exercise and get the emotional support you need. For people living with HIV, 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. If you do street drugs, you can also take steps to minimize the potential harms and learn how to protect your health as well as the health of the people you do drugs with. 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 and how you can avoid passing HIV on to your children, your sex partners or the people you do drugs with.
HIV can be transmitted through five bodily fluids:
- semen (including pre-cum)
- rectal fluid
- vaginal fluid
- breast milk
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.
You can take steps to practice safer sex:
- If you are not already on HIV treatment, talk to your doctor about starting treatment. HIV drugs can not only protect your health but also greatly reduce the risk of HIV transmission.
Use a latex, polyurethane or nitrile condom correctly every time you have vaginal or anal sex. You can use an external condom (sometimes called a male condom) or an internal condom (also called a female condom). Throw out the condom after each sex act and do not use a condom with more than one partner. This can help prevent the transmission of HIV as well as other sexually transmitted infections, such as gonorrhea and syphilis. (Use only water-based or silicone-based lubricants with latex condoms. Oil-based lubricants can make them break.)
If your partner is HIV-negative, he or she might be a candidate for PrEP, or pre-exposure prophylaxis. This involves an HIV-negative person taking certain HIV drugs every day to reduce their risk of getting HIV. Your partner can talk to their doctor to find out if PrEP might be right for them.
- Get tested for STIs regularly. Having an STI increases your risk of getting and passing HIV and other STIs.
- Avoid sharing sex toys (and if you do, cover each one with a new condom before each use). It is also important to clean your toys between vaginal and anal use.
- Consider using a condom or dental dam when you have oral sex. Oral sex is much less risky than vaginal or anal sex, but it’s not completely safe.
- Choose forms of sexual stimulation that pose little or no chance of HIV, like masturbation or sensual massage.
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. Prevention is even more important during the first six months of 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%.
If you use drugs, there are also things you can do to protect yourself and the people you do drugs with. To practise safer drug use…
- Use a new, sterile needle and syringe every time you use.
- Use your own drug equipment (such as pipes, bills, straws, cookers, water, alcohol swabs) every time. Never share equipment, not even with your sex partner.
- Get new needles and supplies from your local harm reduction program, needle/syringe program or community health centre. To find an HIV organization near you, go to HIV411.ca or visit canadianharmreduction.com and click on “Links” and then “Harm Reduction.”
- After using, dispose of your used needle/syringe and other drug equipment. This will reduce the risk of passing HIV as well as hepatitis C and other blood-borne infections on to others. Use a Sharps container (available at most needle/syringe distribution programs) or take your used equipment to a pharmacy so they can dispose of it safely.
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. Visit the HIV Prevention webpage to find reliable sources.