Living with HIV

Finding out you have HIV isn’t easy. However, getting support, learning about treatment options and figuring out how to talk about it with your partner(s) can help you feel more prepared to move on and live a happy, healthy life. Below are some tips and information informed by youth ages 13-29 living with HIV.

Dealing with the diagnosis

• How someone feels when they first get a positive HIV test result is different for everyone. You may be in shock and all the information you receive may be overwhelming. Allow yourself time to process it. You can always return to the clinic to ask questions or read the information when you feel ready.
• You aren’t expected to remember everything you hear and read about your diagnosis. It’s a learning process and eventually the information and terminology will become second nature.
• You may have a lot of questions about what life will be like now. You don’t have to struggle with these thoughts alone. There are a lot of programs and supports for PHA (people living with HIV and/or AIDS) in Toronto (see the back page for info).
• Your first instinct may be to tell someone close to you. This can be helpful, but make sure they are someone you can truly trust and will be supportive of you.
• Not everyone is entitled to know your status. No one can tell that you have HIV by looking at you. No one can get HIV from having everyday contact with you.
• Seek out information from reliable and accurate websites (see back page for examples). Be aware that other websites may contain hurtful and inaccurate content.
• How each person feels about living with HIV can be different and sometimes very personal. Some people identify closely as a PHA, and for some it may not a major part of who they are.
• You can live a normal healthy life. You can go to school, have relationships, have sex, make art, party, have a family, work and travel. Life will go on.

Some important terms

It may be helpful to know the following terms as they are often used to discuss health and treatment for those living with HIV.

• CD4 (cluster of differentiation): Your immune system contains different types of cells that protect the body from infection. One type of these cells is called the CD4 or T-cells. HIV attacks these cells and uses them to make more copies of HIV. This is how HIV weakens the immune system, leaving the body at risk for illness and infections known as “opportunistic infections.”
• Opportunistic infections: Infections that are usually kept under control by a healthy immune system. If HIV weakens the immune system, these infections can’t be controlled and illness occurs. An HIV-positive person is diagnosed with AIDS when their CD4 levels are low and they become ill from these opportunistic infections or cancers.
• Viral load: This is the amount of HIV present in the blood. HIV treatment tries to reduce your viral load. If your viral load becomes so low that it cannot be detected on a test, it is called “undetectable”. You still have HIV, but having an undetectable viral load strengthens your immune system and makes it so you cannot spread the virus to your partner(s) and reduces the risk of spreading it to a fetus if you are pregnant.
• U=U: This stands for “undetectable=untransmittable”, which means that if you have an undetectable viral load, you cannot pass HIV to your sexual partners.

Treatment and HIV

• Once you’ve received a positive result, you will be referred to a specialist or clinic with your consent. You may feel like you aren’t ready for this step, and that’s okay. But remember, the earlier you learn about your options, the better.
• Depending on where you were referred, you will be assigned a team of clinicians that may include doctors, nurse practitioners, social workers, and mental health clinicians. The first few visits will involve tests like taking blood or physical exams to determine your overall health and monitor your viral load and CD4 count.
• There are many treatment options available that help lower your viral load, minimize the effects of HIV on your body and reduce or eliminate the likelihood of passing on the virus. Some of these include daily pills or monthly injections. Discuss what kind of treatment is right for you with your clinicians, and know that it is okay to start your treatment on your own terms.
• Some treatments may have side effects, like nausea. Some go away on their own, but if it is impacting how you live your life, talk to your clinicians about it.
• You have the right to a doctor who is supportive and respectful. If you feel uncomfortable with your doctor, visit the AIDS Committee of Toronto (ACT) website (actoronto.org) for a list of HIV-care specialists in Toronto and resources on choosing a doctor who fits your needs.

Disclosure (telling someone you are HIV-positive)

• You can choose who to disclose your HIV status to on your own terms.
• In Canada, there are laws around HIV disclosure and sexual activity. Even though everyone is responsible for their own sexual health, this law puts the responsibility on PHAs to disclose. To learn more, visit the HIV/AIDS Legal Clinic of Ontario (halco.org).
• Disclosing can be difficult: you may worry your partner may not respond well, or tell other people. However, having an open and honest conversation with your partner(s) can build greater trust and intimacy and allows your partner(s) to make informed decisions.
• You may feel like you have to provide all the information about HIV to others when disclosing. There are resources available, like pamphlets or websites, to provide to others for education.
• You and your partner(s) can also explore new ways to have a healthy, exciting, and fulfilling sex life/romantic relationship.
• Your worth as a person didn’t change when you tested positive, and it shouldn’t change if someone reacts badly to your disclosure. It is HIV that is being rejected, not you. Many people are comfortable having a relationship with an HIV-positive person.

Hot, healthy sex life and HIV

• Like everyone, people living with HIV have a right to consensual, safe and hot sex. Confidence is sexy – if you believe you deserve good sex and caring partners, chances are you will find them.
• Sex can feel complicated. It may remind you of how you got HIV or you may worry about passing it on to a partner. Take your time. Find ways to make yourself feel sexy. The more comfortable you are with being HIV-positive, the better sex you will have.
• Get educated with your partner(s) about different safer sex practices. See the websites on the next page for more information.
• If your partner(s) are HIV negative, there are medications they can take to reduce the risk of getting HIV, called pre-exposure prophylaxis (PrEP). Check out our PrEP pamphlet or speak to a clinician for more details.

Dealing with stigma

• Some people may say inaccurate and hurtful things about HIV and PHA. Spend time with people who love and accept you, and who are educated/willing to educate themselves on the facts about HIV.
• Get involved in HIV organizations in your community. Many organizations have social and volunteer opportunities.
• Get support for your feelings, whatever they may be. See a counselor, join a group, dance, make art, exercise, or meditate.

Resources

2-Spirited People of the First Nations: www.2spirits.org
AIDS Committee of Toronto (ACT): actoronto.org
Alliance for South Asian AIDS Prevention: asaap.com
Asian Community AIDS Services: acas.org
Black Coalition for AIDS Prevention: www.black-cap.com
Where to? (resource connections): www.whereto.catie.ca
HIV/AIDS Legal Clinic of Ontario: halco.org
Ontario Aboriginal HIV/AIDS Strategy: www.oahas.org
Toronto People with AIDS Foundation: pwatoronto.org
The Works (safer injection supplies and harm reduction): http://www.toronto.ca/health/sexualhealth/sh_the_works.html