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The following is a guest post from a friend of beyondpositive, on why they don’t feel able to be publicly out about their HIV status.

I’m posting this anonymously because I don’t want you all to know my real name.

It’s not that I don’t want you to know my real name. A few readers will guess who I am just from the way I write. Some of them will even be friends of mine who didn’t know I’m positive. And that’s ok.

But, unlike the other contributors to this site, Tom has agreed to hide my real name. I know that one of the best things I can to do fight the stigma of HIV is to be honest and open; Kristian Johns made this point very clearly in his recent article for FS mag: “Coming out as HIV-positive… again”.

I’d love to be open and help Tom and Kristian and all the other positive voices make a difference – but I have a problem with that. Well more than one problem: my parents.

Don’t get me wrong, I love my family. They’re great people, they were accepting when I came out as gay and they’ll love me no matter what happens in my life. But the last time they heard anything about HIV and AIDS will have been an advert with a tombstone.

I’m sure they’d be fine with my diagnosis. But only after hours of education and emotional explaining. Hours of helping them realise that I’m not about to die horribly next week, that cleaning the cat’s litter tray doesn’t mean I’m going to die of brain disease.

My parents are intelligent people; they’re capable of understanding the numbers. Of grasping the importance of my CD4 count. Of following the trends of my liver function and whether I should consider changing my combination. Of sharing my joy at having become undetectable.

But at the same time it feels like it would be somehow selfish of me.

It feels like most of what they’d gain from knowing would be worry; it doesn’t matter that the worry isn’t merited. They’d be concerned by every possible symptom, over the ‘tan’ of jaundice from my atazanavir, over whether being tired is an indication of something else being wrong.

It’s not that I’m ashamed of this big secret; I’ve told lots of my friends. But most of them are queer (or queer-friendly) people who have lived under the shadow of HIV since they came out. They have a support mechanism around them who understand that this isn’t the big deal it used to be.

My parents’ friends are all retirees; most of them probably read the Daily Mail. We know there shouldn’t be stigma attached to our status, but my parents and their friends won’t. They’ll be embarrassed to talk about HIV with their friends. Their friends won’t know that HIV isn’t a big deal, that my health is well managed, that catching a cold won’t put me in hospital.

I worry that they might feel upset or betrayed if they find out about my status later on. I’d hate to think that they thought I didn’t trust and respect them with the information. But if they need to know in the future they’ll understand that the reason I’m not telling them is because it’s not important. HIV doesn’t define me and it’s not a big problem I need them to support me with.

Of course it would be easier for me to be open about my status. I’m a very honest person; having to keep a secret is something I find tough. And I’m an intelligent guy who doesn’t give a shit what strangers think, useful qualities if I wanted to be an advocate and campaigner.

But the cost of that openness would be stress for my family. It doesn’t seem like it would enrich their lives to compensate for that disquiet. But it does feel like it would be arrogant of me to expect my family to deal with the stress, just so that I can save myself the trouble of keeping a secret.

I’m sure some of you readers will sympathise, some of you will disagree completely. That’s what the comments are for.

Anon.

10 COMMENTS

  1. Any sensible person will accept and respect your choice to do whatever is best for you and those around you.

    Becky

  2. That was such an interesting read. It can be frustrating trying to educate others (older family members especially) about HIV, and I can totally understand why you’d choose not to ‘come out’ about your HIV status.

    I know that I’ve caused some worry among family and friends since coming out as HIV positive, but I felt the need to do something to change attitudes. It’s hard to change attitudes to HIV without talking about it, and it’s hard to make HIV a conversation point without people wondering “why’s he talking about this? is he positive?” – perhaps it shouldn’t be this way, but it is.

    I believe I could never have fully come to terms with my HIV diagnosis without being open about it, but if you can be happy without that coming out process, that’s just fine 🙂 It’s really interesting to read about the reasons behind your decision, so thank you for writing this piece.

  3. As someone who’s become very open about being HIV-positive in the past few years, I wanted to thank you for writing this post.

    I have been living with HIV since 2007, but it’s only recently with the support and encouragement I’ve gained through volunteering with Terrence Higgins Trust and GMFA, as well as from my friends and family, that I have felt able to become so open. But as open as I am – I was interviewed live on BBC Radio 2 a few weeks ago – I still sometimes find it difficult to disclose my status. For instance, my colleagues know that I volunteer with THT and that I recently became a trustee of the charity, and yet something stops me talking to them about my own positive status.

    What I know is that it should be everyone’s individual right who they disclose their status to and to what extent. Being out works for me, but I know it won’t work for everyone.

    I characterise the last seven years for me as a journey – and I’m so glad I walked down that road. If you want to embark on that journey, I think it’s about taking small steps. With the right support, I am sure you will surprise yourself. One final thing though: don’t ever feel like you’re not being honest. It’s always your choice.

  4. Interesting article that captures a dilema many face. There is no wrong or right about whom you tell and when. It essentially has to be about you, when you are ready and if you feel its apprioprate.

    However, are you ‘protecting them” or you? They may well stress until they gain a better understanding but this may well be compensated for by the relationship you have with them becomming closer. Consider that if you tell them you are in the position to give them information they need but more importantly express how you feel about it namely “it doesn’t define you and you regard it as unimportant”. Are you giving them the credit they deserve?

    Just some food for thought. I am very open about it and it gives me the freedom to be an activist. However I more then appreciate that the important issue is for you to make your decisions about how you manage your HIV regardless of what anyone might say or comment.

  5. Hi Nameless One (sounds kinda western soap opera – forgive my sense of humour – somebody needs to!) I can understand your attitude almost completely. I come from such a dysfunctional family that I changed my name by common use in 1989 and then by deed poll when the government started getting snotty about names in 2009. At that point my mother used to delight in sending my partner birthday and xmas cards (addressed to my partner as Mr Craftman and signed by Mrs Craftman up until his death in 2007, when she started getting nasty).) I was lucky in that he (one of the biggest bullies to walk the earth was dead and she always felt guilty about not being a lesbian.

    How different it could have been in a different job or with different family I’ve got fifteen to twenty relatives around the UK and Canada, but what is the point? If we were all in the same village, there might be a point, which is why I admire your stand back point of view. And it’s a point of view we’re going to have to take more and more seriously as we age, as more and more of us each the age of burying out parents. Unless they come up with that vaccine or other wonder-drug soon, we’re, erm, screwed. Except , of course those who had the foresight to have kids (and I’m not suggesting for a moment that that’s why you had kids!).

    Many of us are hitting that point in the road where where not too steady ourselves, especially longer term diagnosed people. Nameless, you bring up an excellent question, and a question that needs to be answer sooner rather than later (else we’d just go away and and die in a corner somewhere heaven forfend)

    It’s a point the Sainted Lisa Power was working on when she retired: I’d love to see someone take over from here on this issue at least. I hope that THT continues her work and I suggest that those interested in this post would probably find my post on the “Three Epidemics” interesting. Sorry Nameless. I don’t mean to hijack your beautifully written post, but if we don’t hang together, we’ll sure as hell hang separately! Thank you for a beautifully written article, which expands on themes, but with more skill, I’d already tried to explore. Consider yourself invited for dinner, Sir!

    Steve

  6. I respect your desire to protect your privacy & to spare your parents’ their worry & pain. I once felt the same, but my condition, post diagnosis made that impossible.

    The path of publicity is not for everyone & no one should feel compelled to follow it, nor denigrated because they have chosen another. There is no shame in keeping your counsel.

    I chose to be public as much for those who couldn’t as for myself. I’m sure I’m not the only one. I don’t, nor will I judge anyone who, for whatever reason, doesn’t follow me ‘over the top’.

    You’ve shown immense courage in sharing your situation. For that I salute you, after all it can’t have been easy.

    Take care & good health,

    Hywel x

  7. Your choices are purely your own to make and that is something I respect without reservation.

    My own experience with myself and friends has been that parents, and older generations in general, are far better equipped to hear this news than we often give them credit for. Mothers worry. That’s what they do regardless.

    I might suggest that you turn around the idea that you are being “selfish” by telling them, and instead consider that the more selfish choice is not to share with your parents something that is fundamental to your life. You mention how intelligent they are; so I imagine they have watched the news and have a basic understanding that living with HIV isn’t what it used to be. And better still, they have you — healthy, engaged, living happily I will assume — as a very present example of what HIV looks like today.

    This isn’t meant to dissuade your choices, but to allow others in your situation a moment to consider an alternative to this dilemma. Again, I fully respect the choice of anyone in your situation.

    Mark

  8. An interesting post Anon,

    I am out to my parents and all my friends know too, but at the same time I don’t feel I can advocate with my face in the paper on the news, a chat show etc, because I don’t want my parents to have to deal with any comments from people they know who might recognise me.

    At the same time I know they don’t worry about me every day, now that they are educated to understand that I can lead a long and healthy life and they have seen me get on with my life, they no longer see it as a constant worry, we don’t talk about it all the time – only when I have my results back from the clinic.

    I do, however, get annoyed and frustrated when people go around saying that everyone should be out to everyone – how else will we fight stigma – but this just isn’t an option for some people and others need to respect that. As a good friend of mine rightly says, we should all “out” as far as we are able.

    From a parents point of view (I am not one but know from my own parents) they would have felt failed as parents if I couldn’t have gone to them with such huge news.

    Much as HIV does not rule my life, my thoughts, my actions, it is a part of my life and is something that we deal with. I think that when my parents saw me out of hospital after Viral Pneumonia, on the mend and getting on with my life, they got on with theirs too.

    I think that each and every person should do what is right for them and their circumstance – no-one has to live our lives apart from ourselves so people have no right to make those of us who haven’t made declarations to everyone, feel like we are prolonging the stigma attached to HIV.

    Always be true to you.

    Lisa
    x

  9. I was diagnosed in 2003 it took me a long time to be as open as I am I have a support group on facebook called the voice of HIV for support, education, etc anyone is welcome send me a friend request or send me a join request to the group see you there keep being strong.

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