My partner and I were both diagnosed HIV, around about the same time.

2003 was the worst year ever. I can remember it like it was yesterday. I didn't even get my bum on the seat and the doctor had blurted out "your results have come back positive". I sat there numb, in shock, then started crying. I had only ever heard of Freddie Mercury from Queen dying from AIDS so I instantly thought I was going to die. The doctor told me I was being stupid. Ten years later, here I am, still alive writing this guest blog

My partner and I managed to keep the diagnosis quiet, like a dirty secret, for three years until it all came to a head.

My partner took seriously ill. He was rushed to hospital in an ambulance ,with blue lights flashing and sirens wailing. It was the talk of the small village where we lived at the time. The rumour mill went into overdrive. Even a cashier in the local supermarket had the nerve to ask his dad if the rumours were true. She ended up with half a dozen eggs on her head, free range at that.That’s a small village for you.

In any event, he was taken to Ward 42 at the Western General Hospital which is where HIV patients are treated. i knew then it was all going to come out.

His sister and dad arrived at the hospital. She knew in her gut what I was about to say before I even said it. I just blurted it out then started crying. I am known for liking a good cry. You should see the state I get in watching "Beaches"

He was put on fluids, taken for MRI scans and put on antiretrovirals - Kaletra if I remember. He had a lumber puncture which missed the diagnosis of a brain virus. By the time they did a second lumber puncture it was too late. His CD4 count was down to 4. About four weeks after his admission he was put on life support when his lungs collapsed and he went into a coma which was said to be irreversible. That was the worst time ever. We had to plan a funeral  - I still have the disc of 4 songs that were picked -  as the consultant said there was no way back from the coma

But eight days later he was awake. It was like a miracle. He was put on feeding drips and had to have a catheter fitted. He would sleep all day and be awake all night. He was having up to 24 showers a night; in his mind he needed to shower to be warmed up. For the first four months he had no idea he was even in the hospital, no knowledge of anything that was happening around him. Without the staff on the ward and his consultants Dr Wilkes and Lisa, I don't think he would have made it

Life insurance policies and mortgage insurance in the U.K do not cover HIV, unless you are prepared to pay mega huge premiums, so in between all the hospital stuff we had to get a lawyer to do a bankruptcy on him. We lost the apartment and the business, three shops that my partner had built up to a worldwide business via the web. It was a terrible time. Apart from with his sister, the HIV was never spoken about. His illness was always referred to as "the brain virus". Why I don't know, but it was. Still to this day, eight years later, it’s called "the brain virus"

The brain virus affected the memory part of his brain so to this day he still has no short term memory. Everything has to be written on sheets of paper or he will forget in seconds what he has just been told.

I lived in the hospital for eight months while he was being treated. I was suffering from stress and my own health was suffering. I lost loads of weight and was looking ill, just as he was beginning to look healthy. But after eight months he was sent to a respite unit for brain injuries. Most people in there had been in car crashes and had severe injuries. He was only there for a month just to get him used to simple things like shopping and exercise.

After a total of eight months in hospital and a month in the brain unit, nine months in total, he was allowed home. It was the best day ever when he got out. We had rib-eye steak with fries to celebrate. After that, we had to live with his parents as we had lost our apartment. It was stressful for them too as they were used to living by themselves and here they were with two grown adults.

We had to apply to the state to see what benefits he was entitled to. He was entitled to Disability Living Allowance as he is classed as having a severe disability. Myself, well I suffer depression for which I get treatment and my HIV results are always good when I get my blood drawn every three month. My consultant Dr Gordon Scott is a living legend. Without his wise words and help I think I would have given up a long time ago.

It’s been five years since he was in hospital. He can’t work as his short term memory is non-existent.He keeps in touch with everybody through his Facebook account. I work part time in an HIV respite centre in Edinburgh. It’s a great job where every day is different. It was opened by the late Princess Diana 20 odd years ago when AIDS was a big taboo. She came and touched AIDS patients.

We lost everything we had to HIV. Gone are the six times a year visits to the States. You learn to live with what you have. Apart from our families we don't really keep in touch with anyone, apart from my dearest friend David in Toronto, whom we have visited. It seems to have made us very withdrawn. We are quite happy in our small house with our two cats, Fluffy and Lucky and our garden. I like to bake cakes.

We still keep our diagnosis to ourselves. It’s nobody's business but ours and in Scotland. especially in the small village where we live, it still has a large amount of stigma attached to it. If it was cancer we would get loads of sympathy but HIV gets no sympathy, as in Edinburgh, it's still thought of as that gay disease.

Small town mentality I call it. It’s still our dirty secret.

About the author: A gay man, happily partnered for 20 odd years, living in Edinburgh  - or Auld Reekie as some people call it.

March 15, 2013 - 11:30 pm

Met a guy last night online who was visiting LA for the weekend. We meet up this evening and found we had more than just a simple mutual attraction. He's newly POZ (just six months) so when he got an eyefull of the tattoo he was a bit confused but being in the medical field he quickly connected the dots. His reaction, like many, was supportive yet I got the distinct feeling it wasn't for him. Coming from a more traditional background I think being openly gay and now POZ was more than enough for him to deal with though he did have a nice tribal tattoo.  I wonder if the tattoo would have been an issue for him if we wanted something more serious or maybe he would want one as well ... there's a thought.  

March 17, 2013 - 12:30 am 

We decided to meet up late this evening but because I presently have roommates and like my privacy we chose a more ‘interesting’ venue to hang out at, the local gay bathhouse.  To be honest I have avoided the bathhouses for many years as they no longer hold much appeal. But lacking a place, seeing how he had never been to one before and me desiring to gauge the reaction of people to the tattoo in a sexually charged environment, the bathhouse on a late Saturday evening was the perfect place. 

We did the grand tour of the smallest bathhouse in LA and while he was filling his eyes with the sights - bathhouses by nature defy description so I will not attempt - I was focused on the patrons and their reactions … which was nothing.  That said, we were never approached, nor did we approach anyone to get any sort of reaction.  After a thorough once over of the place we retired to our room and later headed out to West Hollywood. 

March 17, 2013, 2:30 am 

We arrived at one of my old haunts, the now remodelled Mickey’s bar for after hours but instead of dancing we found ourselves on the patio talking.  He attended small high school where he was openly gay, a handsome guy who was into weightlifting at the time and had the respect of his fellow classmates.  Now in his early 30’s he was having to quickly come to terms with being HIV+, something he was having issues accepting and this caused him difficulties disclosing.

Knowing he came from a small southern community I asked if he had told anyone of his family he was positive, something I have yet to do.  Upon his diagnose he called his siblings and told them, “I am HIV+, I need you to go on the web tonight and learn about it because when I call you tomorrow I am going to need your support!” and hung up.  He called back the next evening and when they answered the verdict was unanimous “you are not going to die!”  I have to be honest, this was one of the most simple yet powerful disclosure stories I have ever heard.  

March 17, 2013 - 4:30 am 

We spoke some more and being the night was still felt young to us we decided to retire to LA's largest bathhouse to round out the evening.  If I was going to get a reaction to the tattoo I imagined it would be at this location. Though it was late, there were still lots of people awake and looking to connect. We got a room on the ground floor and made a quick tour of this location; it had changed a bit since my last visit years earlier but the general layout remained the same, with a basement, ground floor and upstairs. 

My guest had a mind to get a third to join us, so we set out on a search. There was no shortage of guys and though we made several attempts, whether being a couple was too intimidating or the tattoo worried the players or the general luck of the evening, we were unsuccessful. Neither approached nor shunned, without actually interviewing someone I couldn't say for certain what was the root issue, if any. So much for testing the tattoo at the bathhouses. 

March 24, 2013 - 10:00 pm 

Yet another in my series of my trips to the Korean spa with the tattoo, one guy struck up a conversation about it saying it looked like the Olympic symbol (it does have three semi concentric rings), I corrected him saying it was actually a biohazard symbol and left it at that.  I was not particularly interested in informing him of my status as this was still the Korean spa and I didn't feel entirely comfortable just announcing my status randomly, sort of defeats the idea of limiting disclosure.  However if he pressed me I would have willingly explained why I was wearing the tattoo as it’s purpose is to promote discussion and it definitely empowers me to disclose. 

March 26, 11:45 pm 

Sitting in the spa at the gym before closing, just myself and another guy (seen him before never talked to him), when out of the blue he commented on the tattoo saying it looked like a gay symbol. (In fact the biohazard tatt is rainbow coloured so it serves to ID me as gay to the observant).  In context this was the day of the US Supreme Court hearing the arguments regarding the Defense Of Marriage Act (DOMA) and the following day they were scheduled to hear Proposition 8 arguments and he was curious how I felt about it as well as the possible outcome.  This was fascinating, as the tattoo appears to get people talking about things that are close to my heart other than just my status. This was a great and most unanticipated result. 

March 30, 2013 9:00 pm 

Arrived late to the Korean spa. I had problems applying the tattoo that evening; the skin seems oddly irritated but I ignored this and off to the spa I went. Only ten minutes into my visit I notice the tattoo, a thin sheet of acetate glued to my skin, was bubbling up. Argh! I pressed hard to get it to adhere and thought it would just stick ... it didn't.  The temporary tattoo that I usually wore for three to five days without any issues was coming unglued.  By the time I was done with my 70 minute session it had peeled up to the point that once I returned to my locker to change I needed to remove it.  It appears my skin has built up an allergic reaction causing the temporary tattoo to not only bubble up but actually cause physical pain to the application site.

So no more temporary tats, the universe has spoken! 

April 1, 2103 10:45 pm 

In the shower at the gym the following evening, a sexy young black guy is one shower over and is clearly looking for some action. Never been one for public play but without the tattoo I felt oddly more naked than I already was ... interesting that the tattoo appears to work for me both as a shield as well as a warning. 

April 6, 11:30 am 

Finally I made contact with Jill Jordan, a highly respected and innovative tattoo artist! Set an appointment with her for April 14th at 1:00 pm. My gym buddy Alonso is so excited he also wants to meet Jill (he has a tattoo of his own in mind). 

April 7, 2013 9:00 pm 

I meet up with my first former bf David while he was visiting LA and being that he was one of the inner circle of people who knew I was poz I wasted no time telling him about my desire to get the biohazard tattoo. Why open with the tattoo? David and I have also had a very deep connection on a spiritual level and I wanted to hear him ask "what is your intention?" 

I gave him my canned answer - it will make it easier to disclose, show solidarity to the HIV+ community, etc., yet I was merely buying time to really look deeper and see if I could find an even more tangible answer. This was always the way with us because of our connection and frankly it's quite refreshing to speak about life in terms of spirit and action.  Oddly I rarely avail myself of such opportunities anymore ... makes me wonder why. 

We had both been through some serious life events, broken relationships, health and financial issues, yet we seemed to be better off for it all.  By the end of the evening I was feeling very comfortable with David again and was ready to give him a better answer with regards to my intent of getting the tattoo. 

First, I wasn't branding my soul, only the body. It reminds me to be mindful of the infection but not overwhelmed by it. A few years ago I might have found such a reminder very disturbing, a constant reflection of a mistake I made and was unable to undo. But now much, like knowing I will die, I am coming to terms with it. The tattoo reminds me my life and time on this earth is precious as well as short and to embrace life at every opportunity. 

Second, the tattoo is a method of communication of not just my HIV status or that I am gay (the rainbow flag has many people identifying as a gay symbol) but purely as an art form with a language all its own.  I trust many will appreciate it on many levels but haters will hate and how I deal with such situations will be a measure of my own growth.  Most reactions have been good and I predict that though this seems like a bold act now it will be passé in 10 years but no less important to me! 

Lastly, it memorializes the freedom of my mind if not body from HIV (my spirit has always been free and I am beginning to appreciate that more and more). David applauded my intention and asked me to meditate further on this act. II told him I would and let him know what conclusions I reached. 

April 10, 10:00 pm 

Over the following days I considered what David and I talked about and we shared more messages over FaceBook when it dawned upon us - damn this tattoo really does get people talking. That’s when it hit me this was an immerging aspect, not just to communicate to other people but to get people talking - about HIV, about gay issues, breaking down the barriers we put up in our daily lives.  I am not so naïve to think this tattoo will change the world but getting people talking is a great start! 

“Rome wasn’t built in a day.”

Proverb 

“Ten seconds?! Is there nothing faster?!!”

Homer Simpson

(noticing the time remaining on the microwave) 

I’ve been talking with a good friend in a situation not unlike mine in my work, and while there are differences both in the communities in which we live and in the “audience” we seek to engage, the similarities and frustrations are similar. 

We all live in a world that has become increasingly used to immediate gratification. We expect that everything happens at the click of a mouse and the speed of cable connections. I remember someone telling me in 1997 that 58kbs was as fast as an Internet connection could ever possibly be. 

He was incorrect. 

My friend and I were and are (he left his work) in the process of building community. But in a world where we want everything yesterday, community building is old-fashioned and impossibly slow. It is the snail mail to email and apps for finding the next trick via GPS: “Mr. Hot Stuff is 10 metres from your current location…” Building community doesn’t come with a users’ manual and tutorials. It is a process that involves developing trust and connections and fostering and engaging people in connecting with each other. Those things don’t come with a clear timeline or rules. 

Average Joe’s in Vancouver has been going since the late 1980s, early 1990s. It’s a way to connect poz guys with each other in community. I doubt that in the early days there was more than a handful of men showing up for coffee or pizza, but the persistence and interest in being connected to people was important enough that it has blossomed into a large group of men living with HIV and various permutations of the original that suit others’ interests. Those early days were also well before anything like the internet was a concept we could grasp and cell phones were a technology requiring a forklift. 

In University I studied Music History. One of the most stunning things that I learned was how slowly ideas evolve. Back then it would take 500 years for one concept to replace another. These days, we expect the next i-something or other to come along within 6 months, if not sooner. We are like the wretched, selfish little girl Veruca Salt in Willy Wonka: “I want it NOW!!” 

But that’s not how it works. And the unfortunate casualties in our ever growing need for immediate gratification include the delicate blooms of real in-person communities. Health Authorities and funding agencies have the same expectations for delivering up “community” as though it were some sort of Athena, sprung fully-formed from the head of Zeus. There is no nuance anymore. If it isn’t countable and statistically significant, we have failed. 

The program for which I work, Positively Connected, has a small number of HIV+ guys on the email list and a small but slowly growing number of men attending events. It took a year to get this many out and every now and then one more person gets added and perhaps one drops away. It’s a process that involves talking or writing and connecting and re-connecting and trying something and failing and trying something else. I can’t just Facebook it into existence. I can’t make something new happen like it’s been running for years. I can’t make little conservative Victoria be like metropolitan Vancouver. And yet, there is an unspoken belief that’s how it all happens. 

Facebook is interesting because it’s a faux community. In fact, the whole online world is a fabrication. This does not mean that I don’t feel connected to people and my “friends”, but it’s not the same as being with someone in a café across a table talking over coffee, or physically hugging them – oddly hugging a computer monitor isn’t that pleasant. The people on social media are real people, and we’re connected but we’re not connected. I can’t walk down the street to visit my friend in Toronto for a beer, or have breakfast with my friend in Malaysia. Social media is an amazing thing and a useful tool as well, and I’ve had conversations with people I never would have met otherwise, and it leaves a hole in me: I will never likely meet most of those people who are probably amazing creatures. Making friends used to take weeks or months; now it only takes the clicking of the “confirm” button, and being in a community means simply “liking” a page. 

For many poz folk I know that the online world may be the only connection they have to other poz people, and for that I say “Huzzah, Mark Zuckerberg et al!” People living with the stigma of HIV (and many in small and rural communities) need those connections online: they are vital to maintaining our mental health and sense of belonging. But it also points out how glacially “real life” communities form. The sad part of the online world is that it is replacing real life interaction: it’s quick, it’s easy and I can turn it off whenever I want. 

There’s a book called “A Very Private Life” by Michael Frayn written in 1968. In it he explores a world like the one we’re creating: everyone lives in little rooms with only a screen connecting us to the outside world. A young woman accidentally comes in contact with a man in London. She falls in love and must leave her cubicle to meet him. Are we moving toward this world – where we are shut away from each other and more comfortable with that distance? Or are we willing to step outside that which is immediate and known, stop texting and risk the search for a community of which we can’t be sure and where we can surely find belonging? 

There’s a big world out there and it’s full of uncertainty and surprise and fear and love. 

And there’s no app for that.

Contrary to some hysterically hyped headlines this past week, HIV is not on the verge of being cured in the next three months, nor have scientists found an effective vaccine.

The truth is that a hopeful compound to force HIV out of hiding is under study, and the results should be known in the near future. Unfortunately, however, even if researchers hit a home run with this drug, it won't likely be a cure by itself and we will still be waiting for the day that we have a vaccine or other types of immune therapy to help the body kill any remaining infected cells. 

Let's unpack the hype. Last week the London Daily Telegraph ran a story on this new compound, but claimed that a cure was just around the corner. The reporter apparently misquoted the researcher and overly hyped what he'd been told. The reporter has since toned down his piece and changed the headline due to pressure from a prominent activist in England and likely due in part to a piece the researchers themselves felt compelled to post to refute the article's claims. Unfortunately, the press outside of London grabbed hold and has been retreading the original uncorrected story since then.

Here is the real story. First, contrary to some reports there is no actual vaccine involved at this point. That's probably the most mystifying and frustrating thing. Instead, there is a class of drugs that helps cause HIV that is bound up inside the DNA of resting immune cells to begin reproducing. If we want to cure HIV, then that's the first thing we'll have to do -- to unmask the hidden HIV. The class of drugs is called HDAC inhibitors.

Thus far, there have been four studies of this class of drug. Two were conducted with a very weak form called valproic acid that ultimately had no effect. Two more recent studies were with a drug called vorinostat and showed at least transient increases in HIV RNA production from latent cells, indicating activity, but the effect was also somewhat weak and didn't have the ultimate effect we'd want to see, which is to reduce the amount of HIV DNA there. That would tell us that we are actually reducing the size of the HIV reservoir.

The researchers in Denmark are using a more potent HDAC inhibitor called panobinostat. All of us in the cure advocacy arena have good hopes about the drug, but it is a very, very long way from being a cure all by itself and the very small Phase I study being run by the Danish researchers has yet to publicly report any results. Panobinostat may turn out to be a potent way to kick start HIV replication, but we'll probably have to pair it with a vaccine in order to kill those latent cells that panobinostat has woken up. Unfortunately, we're quite a ways away from having such a vaccine.

It says something quite sad about the state of science journalism in general that articles like this make it out the door. The hype that never pans out ultimately makes people so skeptical about the kind of work Project Inform advocates for and reports on. It's also sadly the case that stories like this, where the reporter, or the researcher -- or both -- hypes a study and claims a cure is just around the corner are all too common. We'll do our best to set the record straight when these arise.

This article original appeared in TheBody.com here.