Telling people about HIV status is a big step, especially when you’ve just found out you’re positive. Some people should be told right away; with others, you have time to think it over.
It’s important to tell people you might have infected or who might have infected you—sex partners or people you’ve shared needles with. They need to find out so they can get tested. Your provider, counsellor, or case manager may also be able to help you inform partners. If those don’t seem like good options, health departments can notify your contacts and advise them to get tested without revealing your name.
Think about telling friends or family members you rely on for emotional support. It’s critical to have a support system when dealing with HIV infection. Think about the important people in your life. Will they be there for you? Will they respect your confidentiality? If so, think about telling them. Family members don’t need to know just because they’re family members. You pose no risk to them, and you may outlive them anyway. You should tell them if they’ll become part of your support network.
If you’re not comfortable telling friends or family members, then you need to look elsewhere. Ask about support groups, counsellors, peer advocates, or therapists in your community. Internet chat groups, while not the best source of reliable medical information, can be helpful places to share your experiences with others HIV-positive people in an anonymous setting.
You should also inform your health care providers including doctors, dentists, counselors, and therapists. They need to know your HIV status to be able to take care of your properly. If you have a provider you don’t feel you can tell, then it may be time to change providers.
You don’t have to tell to your boss, your co-workers, your plumber, or the guy sitting next to you on the bus.
Comments from Patients
Michael’s comment: Sometimes I had to console the people I chose to tell. I found myself having to take on the supportive role, rather than feeling supported. I also found that no one kept my secret. Be prepared.
Rose’s comment: Be careful who you tell, and tell them carefully. When I was first diagnosed 20 years ago, I told my mother and one of my sisters. They gave me a lot of support in the beginning, but they were afraid to let anyone else find out. My sister told people I would be dead from a brain tumor in 6 months. My mom would only invite me and my kids over when no else was around. We had to drink out of paper cups, eat off paper plates, and take out our own garbage. When I didn’t die in 6 months, my sister stating telling people that my daughter and I were positive thinking she was protecting the community.
Things got better for me when I started speaking publicly about HIV. I talked about the discrimination I faced within my mom and family. As my family got educated, they became more supportive. They apologized for the way they treated me, but I still felt angry.
I wound up taking care of my sister when she got cancer. I didn’t show my anger because she was dying and I loved her. I wish I’d been treated the same way.