Managing your health: a guide for people living with HIV

1. You've just been diagnosed with HIV…

If you've recently found out you have HIV, you are probably starting to look around for some information on what this means. You might also want to know what you can do about it. Reading this chapter is an excellent place to start. You're taking the first step on the life-long journey of learning to live with HIV.

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 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.

It is normal that you will feel a lot of different emotions as you come to accept the idea of living with HIV.

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're calm, maybe you're freaked out, or maybe you were OK until someone made a thoughtless remark. 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.

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You have a future

People with HIV now live long, productive lives.

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 think that with treatment, 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 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 the feelings are 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.

There are groups called AIDS service organizations, or ASOs for short, that help people with HIV.

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, sometimes referred to as ASOs, that help people with HIV—people like you. AIDS service organizations are also a good way to meet other people living with HIV. You might not be ready to contact an AIDS service organization yet, and that's fine. Take your time. They will be there to help you when you are ready to talk with someone.

The fact that you have been diagnosed with HIV means that you can take steps to take care of yourself.

You might find yourself wishing 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.

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How this book can help you

Managing your health will take you through the steps you need to know about in order to take care of yourself as you learn to live with HIV.

Managing your health will take you through the steps you need to know about in order to take care of yourself as you learn to live with HIV. Some of the first things you might consider doing are locating a doctor who has experience treating people with HIV, connecting with services for people with HIV and learning how to keep yourself and the people around you healthy. Managing your health chapters that you might want to look at next include Chapter 2, HIV ... the basics, and Chapter 3, Your healthcare team.

This chapter is adapted from the CATIE publication "Just diagnosed with HIV."

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Resources

Just Diagnosed – Online learning module for people who have recently been diagnosed with HIV
Living with HIV: starting points – Easy to read primer on viral load, CD4+ cell counts and healthy living
HIV411 – A listing of ASOs and other HIV-related services throughout Canada

Other relevant resources can be accessed through the CATIE Ordering Centre or by calling CATIE at 1-800-263-1638.

About the authors

David McLay and Annika OllnerAnnika Ollner and David McLay joined the CATIE team in early 2006 and worked together on several projects to provide health information to people with HIV.

Annika’s adventures in HIV have taken her from the campus of McGill University in Montreal where she advocated for better access to HIV drugs in the developing world, to the towns of the western African country of Guinea, where she participated in a capacity-building internship around HIV prevention.

David’s first connection with the HIV community was also in Montreal where he became involved at AIDS Community Care Montreal, first as a user of their services and then as editor of their monthly newsletter. David, in his role as managing editor, oversees many CATIE publications, including The Positive Side.

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