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Telling family and friends about your HIV

Cristian writes:

Dear Jim,

Since my diagnosis in the summer, I’ve told one or two close friends but am finding it hard to be more open about my status and haven’t told my family yet. I’m going home to see them at Christmas and would like them to know but am worried how they’ll react.

What shall I do?

Dear Cristian,

You’re far from alone. Telling our friends and family about our HIV status is one of the biggest challenges we face as people living with HIV and having feelings of uncertainty around it is very common. Deciding who to tell, when and how to do it can feel so overwhelming, especially after a new diagnosis, that some of us opt to stay in the viral closet for fear of negative reaction, judgement and rejection. For us gay men, we remember only too well how that feels from our experiences coming out as gay and how we approach disclosing out HIV status is closely informed by those times. In many ways it’s a second coming out.

Here are my 5 most important things to consider when disclosing to family and friends:

It’s your choice who you tell, and yours alone

The first thing to remember is that choosing who to tell and not tell is your personal decision. You don’t have to tell anybody, or feel any pressure to do so – it’s your choice and your right. Living with HIV is in many ways no different from living with any chronic medical condition and is a private matter. So when you do decide to open up, it’s better to be selective and take your time to consider who to tell and how to tell them. You want to get it right, because once you’ve told people you can’t take it back.

Once you’ve decided to tell, be clear why you are doing the telling

Usually, we’ll be telling family and friends because something important has happened to us and we want to share important things with those we are closest to. But we should check in with ourselves whether we’re feeling anxious and are just doing it to ‘dump’ our feelings. Often being able to talk about what’s on our mind is a great relief and that is enough in itself, but if you’re not sure you’ll get the support or understanding, or that they won’t be able to handle it, then think carefully. A good rule of thumb is to ask yourself the question, what is the benefit to me of telling them? If that’s not clear, don’t do it.

Think about what you want to say

Once you’ve decided to disclose, it’s good to think about what you want to say in advance and be ready for the questions. You might want to say that you’re telling them because of how much they mean to you and how much you love them. And that you want them to be there for you. Think about what it is you want to tell them about your HIV. Keep it simple if you can – you don’t have to tell your life story. You’ll probably want them to know that they don’t need to worry about your health, and that you’re going to be OK. And whether you’re on meds or not. Or undetectable. Offer to answer their questions but be prepared for the ‘how did you get it?’ one (errr… through sex?). Basically, the better informed you are, the more likely you are to re-assure them and reduce any anxiety they may have. If you’re anxious, they’ll probably be anxious too. In my experience, how you are and come across in these situations will determine more than anything else the reaction you get.

Be ready for the reaction

Having said that, we can never know for certain how people will react. So we need to be ready for this. Christmas may or may not be a good time to do it, depending on who is around and how long you’re all around for, so think about that. Whatever the response you get, and even if it doesn’t go the way you’d hoped, more than likely when that person has digested the news and thought about it, their reaction will change. I always find it useful to remember that my knowledge and understanding of HIV before I was diagnosed was, to my shame, not great so if I am faced with ignorance then I’ll be sympathetic, rather than defensive. The act of telling is not in my experience a one-off event, but rather a journey, a conversation, that takes time to unfold and develop. In fact, on receiving the news, it’s the other person that might want to get support and talk to someone else about it, so you need to consider whether you’re happy with them disclosing to other people or whether you’d prefer it kept in confidence.

And if all this just feels too difficult, don’t isolate yourself

There may be lots of reasons why you still don’t feel able to tell your nearest and dearest. Perhaps you’re not out, or there are cultural attitudes in your community that would simply make being open about your HIV status an unbearable prospect. If this is the case, then don’t isolate yourself. Allow yourself to draw on the support and experiences of others that have been in the same situation. A number of organisations, including Positively UK, provide one to one and group support giving you opportunities to explore your feelings and hear how others have dealt with these issues in a safe and confidential space.

For further guidance on telling people about your HIV try these websites:

  • aidsmap – telling people you have HIV
  • Life with HIV
  • MyHIV – Telling People

I’ve been very lucky in that all the people I’ve told have been supportive and this has only strengthened my ties with family and friends. I come from a close family so it never even occurred to me not to tell them. But in terms of my friends, I made a conscious decision that if they couldn’t deal with it, then really they weren’t people I wanted in my life. People living with HIV that I know and work with often talk about their post diagnosis life as being like a ‘filter’, an opportunity to re-assess their relationships and focus on those that are genuine and nurturing. Time to get rid of the fake friends perhaps.

There’s no perfect roadmap to disclosing your status Cristian, but if you trust your instinct and not your fears, you’ll be on the right track. Thousands of others have dealt with this and have found their way through it. You will get through it too.

If you’ve got a question you’d like answered around living with HIV, please email jfielder@positivelyuk.org

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