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Dave R

Dave R

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

You can find much more information about neuropathy and HIV on www.neuropathyandhiv.blogspot.com and here on The Body, along with articles about other subjects.

Aug20

Coming out with HIV! Are you sure?

Wednesday, 20 August 2014 Written by // Dave R Categories // Newly Diagnosed, Living with HIV, Opinion Pieces, Population Specific , Dave R

Dave R: Coming out with HIV is difficult and can have wide-ranging consequences. Many people are tempted and even encouraged to challenge the world with their new truth - but have they thought it through?

Coming out with HIV! Are you sure?

‘My son was diagnosed with HIV. Understandably I was absolutely devastated. My own son, a filthy homo.’

Who knew twenty years ago that there’d be such peer pressure to be brave and come out to the world if you become HIV positive!

I blame the ‘it gets better’ crowd; it’s a natural follow on from the pressure to come out if you’re gay. Be brave; love yourself; come out of the viral closet and be proud of it! It’ll help remove stigma!

Yeah, yeah, sounds good but my advice is, don’t do it unless you’ve thought it through and certainly don’t do it because of any sort of peer pressure. Peer pressure is a powerful motivator and you can quickly get caught up in the hype and all the flag waving but it almost always comes via a sort of media movement where it looks like everybody’s doing it and living happily ever after but don’t be fooled: some may and some most definitely may not! Letting the world know you’re gay is difficult enough but letting them know you’re HIV positive is a potential minefield and needs a thorough awareness of what might go wrong.

For me, it doesn’t matter anymore. If you stumble across a profile of mine anywhere on the net, you’ll see straight away that I’m HIV+ mainly because there’s no point in hiding it anymore. However, I’m approaching the end of my life, both socially and physically. I’ve got nothing to lose by being open about it at the get-go; saves time and bullshit and endless rejection when they find out later anyway. For me life’s too short to play the sort of silly on-line games and first denial dates in the hope that they’ll be smitten before they find out and it’s too late. But I’m 64 and most people new to HIV are much younger and have far more of their life ahead of them.

If you’ve got a whole life ahead of you and you’re unlucky enough to have been infected then maybe you should weigh up your options very carefully before buying the T-shirt and letting the world deal with you as a poz person.

Here’s a few tips about coming out with HIV

They’re not definitive but they may just encourage you to look at the bigger picture before getting the megaphone out. Breaking the news that you have a chronic illness has to be a delicate process and one that needs to be planned with care. After all, it’s not only your life that’s going to change after you tell your story but the lives of those around you who are about to be forced into looking at you differently and evaluating their own attitudes and prejudices.

Remember, for most people they still have images of tombstones crashing to the ground in 80’s government TV adverts. Like it or not and logical or not, the first thing people think about when confronted with the acronym HIV is death. You can’t just chuck it at them and expect them to take it lightly. There’s nothing more guaranteed to summon up scary mental images than HIV. There’s a long way to go before the LGBT community, never mind the general public, is fully aware that HIV is a treatable and manageable disease that if treated and managed properly, is of very little danger to themselves (or others).

You may be convinced that you can abandon condoms if you’re healthy and undetectable but don’t expect those outside the HIV community (and many of those inside) to believe you for a minute.

Only reveal on a need-to-know basis.

Some people really don’t need to know – it’s either none of their damned business (e.g. work colleagues) or may hurt them and worry them more than the truth is worth (e.g. elderly relatives). Telling certain types of people about your status may hurt you most in the end so taking out an ad in the local church newsletter may not be such a good idea!

Once you’ve made your short-list of people you might like to tell, look at each name and ask yourself: “Is my illness bound to come up eventually? Do I look so different that certain assumptions are going to be made? Will this person be affected directly by what I’m going through?” If the answer is yes, then it might be wise to keep that person on the list. If the answers are no, then do they really need to know?

Similarly, it might be sensible to avoid telling someone who has already expressed prejudice or insensitivity towards LGBT issues in general and HIV in particular. It sounds appealing to want to make them face their prejudices by revealing your own situation but it can backfire on you. Maybe it’s best to let them figure it out on their own if and when it ever becomes an issue between you.

Prepare a short and concise summary.

How do you feel when other people drone on and on about their medical woes? Do your eyes go blank after ten minutes? Well, surprise, surprise, that’s what happens and there’s no reason that other people will react differently to you if you do the same. It may seem that HIV has taken over your life and is dominating your every waking thought and your head may be full of doctor’s appointments, medication regimes, flare ups of this that or the other but that’s your reality not other people’s.

It may sound harsh but you’ll get much more constructive help, support and advice if you start off small, so to speak. Write a short summary of the relevant facts (where and how you were infected may not be relevant and a bit too juicy for some listeners!) and define the situation in such a way that you avoid drama. You’ll find your listeners will respond much better and give you a great deal of kudos for remaining calm and ‘taking it so well’.

Having a defined speech ready will also separate you from your disease. HIV doesn’t have to define you and your personality is no different to what it was before but many people like to think that the crushing news has probably brought you to the depths of depression but then their reactions from that point on will be awash with sentimentality and instead of supporting you through your journey, you’ll find some wanting to take over and save you from yourself. It can become more about their Good Samaritan tendencies than about you and the reality of your situation.

You may well be crying out for emotional support, that’s perfectly normal but try to avoid making that the focal point when you tell your story. In that way, you can choose those best equipped to genuinely help you later. You’ll soon find out who genuinely wants to help and who’s a fair-weather friend overcome by the moment and the drama of it all. The best people are those who tell you they’re at the end of a phone if you need them and leave it at that (you’ll soon find out if they genuinely mean it or not!)

Dose the information

After your big reveal, there are bound to be lots of questions and the further removed from your HIV-related world people feel, the more questions they may have. However, over-sharing can be self-defeating. Most outsiders just want to know what they can do to help in a practical sense; they don’t want to hear about your social life and even less about your sex life. That sort of information needs to be kept within the circle of friends who both understand and can offer expert advice.

Similarly, any strange malfunctions of your body can be talked about but may be not in the sort of detail that you would like. Don’t get me wrong, it’s very understandable to want to talk about your worries and physical problems but you need to choose your listeners carefully.

Things have a habit of coming back to you later and an emotional outpouring of everything that makes your heart heavy may reveal things you’ll regret sharing later. You can see by people’s reactions if it’s a question of ‘Waaayyy too much information!’ You want people’s emotional and practical support but you don’t want to shock or embarrass – there’s nothing more guaranteed to cause people to slip away quickly than if they feel that they’ve been put in an awkward position by knowing things about you that they didn’t want to know.

This all sounds somewhat cowardly I know and I’m not suggesting you don’t have every right to tell what you want to whom you want. The problem is that in the first weeks and months of knowing your new status, you can be emotionally vulnerable and desperate for sympathy and help but you should only trust details of your private life to those who are there for the long haul and those who you know will stay loyal to you come what may.

Try to be the response you would like to get

By which I mean, if you want a level-headed and calm response then you may need to be level-headed and calm yourself. In situations like this people like to follow your lead. They’re not certain how they should react and need to take a lead from how you tell your story. If you’re frustrated and angry, they may well be frustrated and angry too – it’s meant to be supportive and they just want to be angry for you but it’s not what you really want is it? If you’re sad and depressed, people will want to be sad and depressed with you – in support so to speak – when in fact, you need a stronger and more proactive response than that. It’s rocks you’re looking for not shifting sands like you may be yourself.

If you can possibly be cool and calm and tell your news in terms of facts rather than emotions, you stand a good chance that people will think, okay, I need to keep my shit together too and support him (or her) in the best way possible.

It’s entirely possible that you haven’t come to terms with the news yourself and that can be a risky time to tell others what’s happened. You’re emotional, confused and maybe scared and of course you need someone to talk to but then you should choose wisely. Tell a selected number of people you can trust with your life but don’t be tempted into making a universal announcement, otherwise some of the pitfalls I’ve mentioned earlier may come back to haunt you at a later date. Once the genie’s out of the bottle, you can’t stuff him back in. It’s all about making the right choices.

If you’re already comfortable with your new medical status and feel strong enough to cope with any judgements that may come your way, then you’ll be able to make good decisions as to who you tell.

Make it matter of fact

It may be a nightmare for you but if you’re on a wider social network, try not to twitter about every last detail. People are too far removed from the source and may not have the right sort of knowledge to understand what you’re going through.

If you decide to come out on social networks, try to keep it generic. Stick to the facts and keep calm. It can be a great way of breaking the ice when you do meet up with your followers: they’re already prepared but not overwhelmed with too many details and your emotional state at each stage of the process.

Most adult conversations don’t address why someone is gay, or why they have HIV, it’s enough to know that those two things are a fact. You can let your readers know about the major hurdles you’re facing but don’t leave them with the opportunity to make moral judgments about how you live your life.

Finally

It’s a tightrope, I know, when you are faced with telling people you’re HIV positive and that’s precisely why you should have as level a head as possible when you do it. I have absolutely no right to advise anybody how and when they should pass on information as loaded as an HIV status but I have seen people broken by the antagonistic responses from people they thought they could count on. It took them by surprise, shocked and hurt them. They had expected nothing but sympathy and support and were totally unprepared for how cruel people can be.

Learning you’re HIV+ for the first time generally brings out two reactions from people. Either you want to clam up and keep it completely to yourself and find it difficult to talk to even your best friends or closest family; or you have the urge to broadcast it to the world. Both approaches have their dangers but the latter can bring a shit-storm down on your head before you’re anywhere near ready for it.

Human nature means that some people are going to react badly, or negatively to your news but you can minimise the effect that has on you by thinking it through first and being ready for any unpleasantness before it happens.

I would argue that coming out with HIV is far harder than coming out as being gay. An HIV status immediately brings certain images into people’s heads. It’s wrong and hopelessly out of date but it’s unfortunately still true. People’s worst fears about you when they heard you were LGBT, become confirmed and magnified by an HIV label. The fears are theirs and their problem but nevertheless it will affect you in some way and there are very few people with HIV who haven’t lost friends and acquaintances (even family members) on hearing of their new chronic illness. You can take much of the sting out of the tail by being prepared and not jumping into the confessional too soon.

You don’t have to bend to pressure from anyone, or anything else. It’s your decision to make and only you will know the best time to do it but remember, it’s like ripples in a pond: once people have that information, many of them feel the need to share it with someone else and so on and so on and before you know it, many more people know far too much about you and there’s very little you can do about it. Of course it’s brave of people to post a YouTube video announcing their status but that’s their decision, not yours and hopefully they’ve thought any consequences through.

There’s a responsibility attached to telling others you’re HIV positive; a responsibility to other people but above all a responsibility to yourself. I hope you do it but I hope you think through what you’re about to do before you do it.

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