A brief guide to the information you need and the issues you may be facing now that you’ve tested HIV+.
HIV has been in Canada for over 20 years now, and during that time we’ve learned many things about the virus that causes AIDS. On the positive side, we now understand how it affects the immune system, and how to control HIV with antiviral medication. At the same time, there is still no cure, people are still getting infected, and the infection rate is actually increasing in some social groups.
Still, things have got a lot better in recent years. New treatments have greatly improved the health prospects for HIV+ people, and negative attitudes towards people with HIV are slowly beginning to change. It’s important to keep these things in mind as you learn to cope with HIV infection.
But even if things are getting better, this doesn’t make it any easier to learn you’ve tested HIV+. The progress we’ve made doesn’t lessen the impact of a positive result, the sense of panic and disbelief you might feel, or the sinking feeling that you’re no longer in control of your life. It also doesn’t help if you’re feeling angry at yourself for getting infected, or at the person you think infected you. You may also be worrying about other issues: who will find out, who you’ll have to tell, whether you can still have sex, how long you’ll be able to work. And finally, the worst fear of all, when will you get sick?
So take some time to let yourself react. And if you don’t feel anything at all right now, give yourself time to let it sink in. Talk about it if you can with a counsellor, your doctor, or a friend you trust. It’s much easier to deal with a crisis by getting a bit of help, rather than facing it on your own.
And no matter how bad you’re feeling, keep one thing in mind. Testing HIV+ is not a death sentence. Many of us are alive and feeling well 15 to 20 years after we were infected. So don’t worry about making major changes in your life right now. You still have time to take action to maintain your health.
Testing positive doesn’t necessarily mean you have or will ever get AIDS. Research has shown that without medication, most people develop AIDS about 10 years after they were infected. However, research also shows that new treatments for HIV can slow down or even stop the virus from reproducing in your body. And a small percentage of people may have strong enough immune systems to control HIV without medication. So even though we don’t have a cure yet, your health prospects are much better than they were even a few years ago.
The first step is to get a doctor who has experience caring for people with HIV. If you’re not sure your own doctor can provide this kind of care, an HIV counsellor, public health nurse or close friend may be able to recommend someone. Your doctor is required by law to keep your medical records confidential, so don’t put off getting medical care out of fear of other people finding out. You may also want to bring along a friend or family member for support, at your first visit.
Another important point to consider: if you think you may have been infected for a long time, you need to see a doctor fairly soon. The longer you’ve been infected without treatment, the more damage HIV may have done to your immune system. Antiviral therapy can halt this process, so it may be worth while to see a doctor sooner rather than later.
At your first visit, your doctor may spend most of the session counselling you about HIV.This should be followed by a detailed medical history, as well as a number of blood tests. One of the most important tests tells how rapidly HIV is reproducing in your blood (viral load tests).Another measures how much your immune system has been affected by HIV (CD4 or T4 tests. CD4 cells direct the immune system, but are also infected by HIV). Both these tests will help determine if and when you should start taking antiviral medication.
There are a number of ways you can play an active role in maintaining your health, as well. Before visiting your doctor, write down the questions you want to ask. Make sure you understand what your doctor has told you. Consider keeping a journal where you record your doctor’s instructions and explanations. This will help you remember what happened during your appointment, and give you a better understanding of your HIV infection. If you have several things to talk about, ask for a longer appointment (say, 20 to 30 minutes), so your doctor has enough time to deal with your needs. And if you want a second opinion on a particular issue,don’t hesitate to ask your doctor for a referral to an HIV specialist.
In the past few years, major advances have been made in treating HIV and related infections. Most of these medications are very expensive, however, and you may be worried about whether you can even afford them. Fortunately, there are a number of options to help you cover the cost of your medications, so no one should go without treatment because they think they can’t afford it. Some people have insurance plans which will pay for most or all of their drug costs. If you don’t have private insurance, the Ontario government’s Trillium Drug Plan will cover the cost of most of your medications. Your doctor, nurse, or a benefits counsellor at an AIDS service organisation will be able to help you sort this out.
But in any case, you don’t need to start treatment until you’re ready. Most doctors prefer to monitor your CD4 count and viral load for a while, before recommending antiviral therapy. Besides, all decisions about testing and treatment should be made by you and your doctor together. Your doctor should be willing to explain the pros and cons of any medication prescribed, and take time to answer all your questions. Don’t let your doctor (or anyone else) pressure you into taking medication or submitting to any medical procedures before you’ve made up your own mind.
Some people consult doctors who prescribe herbal treatments or practise alternative forms of medicine (e.g. naturopaths) for advice on treating HIV. There has been very little research done on alternative treatments, so we don’t really know what impact they might have on HIV infection. If you decide to take alternative treatments along with or instead of antiviral medications, it’s important to let your doctor know. Any medications you take could affect your health, and could interact with other medications your doctor prescribes.
In many ways, having HIV is a similar experience for both men and women, but there are some important differences. For one thing, HIV may cause different symptoms in mid and later stages of infection, such as a greater risk of developing abnormal cervical cells, pelvic inflammatory disease and hard-to-treat vaginal infections. This means HIV+ women may need to get more regular Pap smears and gynecological exams. Another issue is the effect of antiviral therapy, which may cause different side-effects in women. However, women are no more likely to progress to AIDS or fail to respond to combination therapy than men.
Testing positive is sometimes more difficult for women, because they may not know any other people with HIV or even people they can talk to about it. If your doctor is your major (or only) source of support in regards to HIV, it’s important to make sure s/he is familiar with the experience and needs of women who are HIV+. AIDS service organisations can also provide counselling and support, as can some sexual health clinics and public health units. Women may also have more difficulty telling their sexual partners than men do. In some cases, telling your partner you’ve tested positive could lead to violent repercussions, so it may be more difficult for women to decide whom to tell, or how to go about it. On the other hand, many partners are very accepting, and are major sources of support.
Another important issue faced by HIV+ women is pregnancy. What happens if you’re pregnant when you’re infected, or if you decide to become pregnant? Is it possible to prevent a fetus from becoming infected? Recently, antiviral medications have been been shown to substantially reduce (though not eliminate) the risk of infecting a fetus or newborn child, and most doctors would encourage HIV+ women who become pregnant to consider treatment. Another consideration is that pregnancy and parenthood can be a major drain on your physical and mental resources, so you may want to consider waiting till you’re feeling more adjusted to your HIV status before considering pregnancy.
Being infected through intravenous drug use does not make it any more likely that you will progress to AIDS, or be unable to respond to treatment. However, ongoing drug use may make it more difficult to stick to treatment regimens, or even to practise safer sex and needle use. Besides, using a lot of street or party drugs on a regular basis may weaken your immune system’s efforts to fight HIV, so it’s important to consider what you’re using, and what impact it may have on your health. It’s also very important to choose a doctor who is empathetic, and experienced in dealing with social and medical issues faced by IV drug users. For example, some doctors are licensed to prescribe methadone, which has been shown to improve health prospects for HIV+ drug users when taken as part of a treatment program.
It is not easy to pass HIV to another person. Close physical contact, food preparation and sharing towels and clothes are all OK. However, sharing personal items such as razors and tooth brushes could be risky if there was blood present. The main risks in infecting others are unsafe sex and needle sharing. This doesn’t mean you should stop having safer sex, though you may not feel like sex at all, at least for a while. But if your relationship has been unsafe up to this point, it may be difficult to suddenly start using condoms, or switch to lower risk kinds of sex.
If you’re not sure about what’s safe and how to protect your partners, talk to a public health nurse or counsellor, or your doctor. And remember that if you’re being safe now, you don’t need to make any changes, or tell any future partners unless you choose to.
You still need to be careful about re-infecting yourself. Some HIV+ people decide it’s OK to be unsafe with each other, since they’ve already been infected. However, picking up new strains of HIV can make a major difference in your health, as well as your response to antiviral drugs. Finally, safer sex protects you against a number of other sexually transmitted infections (like gonorrhea and chlamydia), so it’s important to keep taking precautions.
You don’t have to tell anyone until you’re ready. So think over who you want support from, and decide how best to tell them. If you just can’t tell anyone at first, talk it over with a counsellor or ask your doctor for advice. But don’t underestimate the value of support in dealing with HIV. Take your time in telling other people. Employers and co-workers don’t need to know, and your family can wait till you’ve adjusted to being HIV+. It’s easier to tell them when you’re more on top of things, since you may have to support them in dealing with their own reactions.
How about sexual and needle-sharing partners? A lover or regular sexual partner should know, since this is a very important factor in both your lives, and your partner will need to find out about his or her HIV status. As for partners in the past, you should inform people with whom you’ve had unsafe sex or shared needles, since this may encourage them to get tested as well. Of course, if you don’t know some of your partners, you may not be able to get in touch with them.
Telling sexual partners can be difficult, and you may need some help from a counsellor in deciding who to tell, and how to go about it.
Your doctor is required by law to make sure your sexual and needle sharing partners are informed. However, this should only be done after you have talked about it with your doctor, and in a way that you are comfortable with. You will not be required to disclose if it is dangerous for you to do so.
Your doctor is required to inform the public health department that you are under his/her care, and that sexual transmission and telling partners have been discussed. There is no reason for the health department to contact you unless you need help from them in informing partners. Furthermore, they are required by law to keep your situation completely confidential. If public health talks to your partners, it will be done anonymously, so your identity will never be revealed.
You may have heard about the Cuerrier case, where an HIV+ man was found guilty of sexual assault, after telling two women he was HIV negative, then having unprotected intercourse with them. The case came to court because the women eventually decided to press criminal charges. The case went all the way to the Supreme Court, which ruled that HIV+ people must reveal their HIV status before having sex. However, the ruling also said that if an HIV+ person was taken to court for not disclosing his/her status, but had used condoms or engaged in lower risk sex, he or she might not be found guilty of sexual assault.
The bottom line is that it’s not clear what this legal decision will mean for HIV+ people. Lawyers working in the field of HIV have said they doubt many charges will be laid. Still, the decision is another good reason to use condoms, and to avoid situations where you might be unable to practise safer sex.
Being HIV+ doesn’t mean you have to stop working. You may occasionally need to take time off from work to visit your doctor, or to deal with other issues related to testing positive. But most HIV+ people continue to work for a long time, even after starting antiviral therapy. In fact, some people who have left work are now returning, since antiviral therapy has dramatically improved their health.
On the other hand, if you do need some time off for medical or other reasons, you are entitled to take that time. If you’re worried about income support, you can discuss this with a counsellor or your doctor.
Getting support is an important way of dealing with the stress of testing positive. This could simply mean having a friend or family member to talk to when you’re feeling anxious or upset about your HIV status. Research has shown that there are connections between your mental outlook, your ability to manage stress and maintaining good health.
Many people get the support they need from friends, particularly friends who are also HIV+. And for some people, the family is the most important and ongoing source of support, so don’t assume your family can’t deal with it unless you’re pretty sure how they’d react.
However, you may not be ready to tell any one else yet, or there may be no one you feel you can trust. In that case, HIV clinics or AIDS service organisations may be able to provide short-term counselling to help you sort things out. Some organisations have support groups where you can meet other HIV+ men or women in a safe and confidential environment to talk about issues relating to testing positive. These services are listed on the back of this brochure.
If you’re having a lot of trouble dealing with HIV (or any other issue in your life, for that matter), you should think about seeing a therapist. Talk it over with your doctor or counsellor, and ask for a referral based on your specific counselling needs.
Above all, don’t put off asking for help because you feel ashamed, or because you feel that you should be able to deal with it yourself.
There are a number of things you can do to stay well, apart from taking antiviral medication. Building a good relationship with your doctor is very important, particularly a doctor who helps you participate in decisions affecting your health care. Paying attention to your need for support is just as important. It’s much easier to deal with stressful issues related to HIV if you have someone to talk things over with.
There are other ways you can help take care of yourself , as well. Good nutrition, regular exercise and getting enough rest can help maintain your physical and mental health. You may also need to look at how much alcohol and party drugs you use. In moderation, these substances can help you relax and reduce stress, but too much can interfere with your efforts to maintain your health. Some drugs can even cause serious medical problems, because of the way they react to HIV medications you may be taking.
Finally, getting involved in social and volunteer activities can help you manage stress by taking your mind off HIV-related worries. It can also give you a sense of satisfaction from interacting with and helping other people, which contributes to a positive outlook on HIV infection.
A positive attitude is still one of the best ways of maintaining physical and mental well-being. The prospects for HIV+ people have improved considerably in the past few years, particularly if you take advantage of medical and social services available to you. At the same time, it can’t be denied that HIV+ people face many difficult issues, and may need help in staying on top of things. Despite recent medical advances, we still don’t have a cure,though better treatments are on the horizon.
One final thing to keep in mind is that you’re not alone. In Canada, thousands of people have tested positive, and many have learned to live with HIV much better than they thought they could at first. With good medical care and attention to your support needs, you can stay well and lead a productive and full life, just as many others are doing.
The following organisations all provide counselling and referral services in person and by phone as well as public education programs. Additional services are listed under individual organizations.
|Hassle Free Men/trans clinic||416 · 922 · 0566|
|Hassle Free Women/trans clinic||416 · 922 · 0566|
|Africans in Partnership Against AIDS||416 · 924 · 5256|
|AIDS Committee of Toronto (ACT)||416 · 340 · 2437|
|Alliance for South Asian AIDS Prevention (ASAP)||416 · 599 · 2727|
|Asian Community AIDS Services (ACAS)||416 · 963 · 4300|
|Black Coalition for AIDS Prevention (Black CAP)||416 · 977 · 7725|
|Centre for Spanish Speaking Peoples||416 · 925 · 2800|
|Canadian AIDS Treatment Information Exchange (CATIE)||416 · 203 · 7122
1 · 800 · 263 · 1638
|David Kelly Counselling Program
Lesbian and Gay counselling. HIV counselling.
|416 · 595 · 9618|
|Ministry of Health
AIDS and Sexual Health Hotline
|416 · 392 · 2437|
|Mother-Risk HIV health line||1 · 888 · 246 · 5840|
|People with AIDS Foundation (PWA)||416 · 506 · 1400|
|Positive Youth Outreach||416 · 340 · 8484 ext. 265|
Services for families, especially women and children.
|416 · 596 · 7703|