Get Support — Even if it Means Disclosing Your HIV Status

Talking about Your HIV Diagnosis

Get Support — Even if it Means Disclosing Your HIV Status

By Dr GaryCA Published at December 31, 2012 Views 969 Comments 1

Gary McClain, PhD, is a therapist and educator who works primarily with individuals living with chronic medical conditions, as well as their families and caregivers. He has written extensively on health and body-mind-spirit topics, including a regular column on mental health in HIV Plus magazine. He maintains a website,, with information and inspiration for newly-diagnosed patients.

Talking about your diagnosis with someone who cares about you can help a lot. Don’t bottle up all of those feelings that learning that you are HIV positive can bring up.

“Great idea,” you may be thinking. “But it’s not that easy. Talking about my HIV diagnosis also means having to disclose. How fair is that? “

Facing the Fear

When you’re first diagnosed, telling someone can feel like the hardest thing you’ve done in your whole life. Contemplating that first time, or those first few times, can bring up a lot of feelings, like fear and shame and sadness. You might be concerned that you will be judged. You might feel like you are letting the other person down. And you might wonder if your relationship will change in some way, and not necessarily for the better. Or that the person you tell might start worrying about you.

So getting support can be complicated, or at least feel that way. But the alternative is to isolate yourself from the people you care about when you need them. And at a time when, most likely, they would want to be there for you.

Tips to Help You Disclose Your HIV Status

So here are some ideas that can help you to take the first step:

Choose someone you trust and who you think can handle the news. Sure, not everybody in your social network is ready to talk about HIV, especially as it relates to you. Some people are educated about HIV than others, and have been in situations where they are more likely to understand what it means to be HIV positive, and what it no longer means. And some people in your network are better listeners than others.

Let people surprise you. If you read the minds of everybody you know in advance, and make assumptions about how they might react, then you may talk yourself out of telling anyone. Focus on the people who you know, in your heart of hearts, love you and accept you for who you are. But leave some room for surprise. Sometimes the person you fear might fall apart is the one who turns out to be a rock.

Offer some reassurance. Let the person that you disclose your HIV status to that you are working with a doctor that you trust and that you plan to do everything possible to stay healthy. You might want to introduce this early on in the conversation.

But also let yourself have your feelings, and show your feelings. After all, the purpose of reaching out for support is to get your support. Tell the person that you have chosen to support you that you need them to just listen to how you are feeling, that you want to be able to express all of the feelings that your status brings up, even the feelings that aren’t so comfortable to express, or to listen to. After all, this is about you getting support.

Be willing to be a peer educator. While attitudes about HIV have changed, there are still a lot of people out there who aren’t up on the latest progress in HIV treatment. When you disclose your diagnosis, you might want to share some of the information you have been given by printing out a Web page or giving out a pamphlet.

Insist — gently and repeatedly _ that you don’t need anyone to watch over your health. After learning someone we care about has a health condition, it is only human to want to “fix” them, out of real concern, and to avoid our own feelings of helplessness. But mothering can feel like smothering. Assure whomever you choose to tell that you are handling things and refuse to be their partner in anxiety. (And if this is a person who can’t – or won’t – see beyond your diagnosis, then this someone who can’t be helpful, at least right now.)

If you have a bad experience, don’t take it personally. You may be surprised in not such a good way, and learn that the person who you thought might be supportive is not going to be helpful at all. People are who they are, and they may react in prejudice or ignorance that you didn’t expect. Remind yourself that this doesn’t mean other people in your life will behave the same way.

Keep in mind that you don’t have to tell everybody. You are in control here. You can choose who you want to tell, who you don’t want to tell. And when you decide to do it. Learning to disclose is a process. The goal at this point should be to get some emotional support for yourself so that you don’t have to deal with news on your own. You’ve got lots of time to make decisions about whom you bring into the fold.

Consider talking to a counselor or an HIV educator. Professionals who are comfortable with HIV can be a great source of support. They are trained to be listeners and they can help you to gain a perspective on your emotions, as well as help you to make decisions about disclosing your status. You may want to start by talking to a professional, and give yourself more time to disclose your status to the people in your life. Again, you’re in control.

The point is: Don’t go through this alone. Reach out to someone who can listen. Support is power!

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