When I was diagnosed, I was given some very informative websites, which all helped me understand more about HIV, the treatment and, for the most part, answered the questions I had. But everything felt very clinical and a little rose tinted.
I wanted something more…. real life?
For me, the thought of sitting in a support group in a local hall somewhere seemed like hell…Flashbacks to the scene in RENT, anyone?
I started Chat Positive to share my journey, the ups and the downs of living with HIV, in the hope that it will educate those that want to know a little more, and inspire those who, maybe still, are struggling to come to terms with being HIV+.
You are not alone in feeling alone…
The main thing I have learnt in the time this blog has been live, is that there are SO MANY people that are affected by HIV. People I have known for years and perfect strangers have messaged to talk about their experiences, but maybe haven’t had the courage to speak openly about it. If you are reading this and are struggling to come to terms with your diagnosis, please know that you are not alone.
Until recently, I felt like I was having to hide a part of myself; that I couldn’t be honest around people I loved, because I was worried about what they might think.
I have only lived with HIV since June 2018, and seven months on I can say that I have accepted that it is a part of me that I simply cannot change.
If you can’t change it… accept it. LOVR YOURSELF
Since speaking openly about my HIV status, I have taken ownership of it. People can think what they like, but I haven’t let it defeat me. And hopefully, by speaking out, it will help chip away at the stigma that is still all too prevalent.
I would never call myself a ‘Scene-Queen’, but those that know me know I do love the occasional night out…. but secretly don’t we all?
When I do go out, I always prefer a gay club over a straight club, partly because I feel much safer but mostly for the better music.
In the last year, and as an indirect result of a break-up, I have found great friendships with a group of gay men around my age. Some single, some couples, but all of whom are lovely, genuine people with different backgrounds and careers. Surprisingly, I’ve never really had a friendship circle quite like this, even working in theatre all my life. Every now and then we get together for a night out somewhere in London.
This night was just like any other night out; Mandatory pre-drinks followed by a slightly fuzzy tube journey to the club. This time in Clapham.
The club was packed and I’d noticed one or two guys look at me across the bar etc. Usually a little bit of attention is great a great ego boost, but all I kept thinking was:
‘…if only they knew…’
All of a sudden, I was on the dance floor, looking around and thinking I must be the only one in that room who is going through this.
Eventually, I made a beeline for the door. Texting my friends that I’d left, in the Uber home.
On reflection, that was a bit dramatic. If there was a show of hands how many positive guys were in that bar that night, I think the results would surprise everyone.
Apparently, 1 in 7 gay men in London are HIV positive. Yet, for that moment, in a bar where I usually feel safe and comfortable, I felt so isolated and judged before anyone had even made judgement.
Truth be told, I didn’t give anyone the chance to judge me because I didn’t want to face the rejection.
I might point out that I wasn’t on a night out in the hope of hooking up by the end of it, but feeling that there is a complication should that situation arise made me question everything.
At the end of the day, it is safer to have sex with someone who is HIV+ and Undetectable than it is to have sex with someone who doesn’t know their status.
The stigma with HIV is still out there, and I think it is actually more prevalent in the LGBT+ community than we like to admit. Mostly, it’s down to ignorance and misguided information. But, as a result, places that are usually ‘safe’ for gay men, be it online or in real life, can be tough places to navigate.
To anyone reading this who has not been through it, I guess this weeks post may seem pretty irrelevant, but to those who have been through something similar, know that you’re not alone in feeling alone.
As always, please feel free to comment and share this Chat Positive blog and help reduce the stigma around HIV.
When I found out I was HIV Positive, all I could think about was how different my life would become and how people’s perception of me would change.
At the time, I was getting over a break up and trying to stand on my own two feet. Like most people trying to get over someone, I was questioning everything about myself and every aspect of my life. My self-confidence was already questionable so hearing that I’d tested positive couldn’t come at a worse time.
After getting over the initial shock from the diagnosis, I became very aware that I was still a single man approaching 30. The only way I could describe the feeling was damaged.
I was damaged goods and nobody would want to be with me now.
Perhaps, this was because of my previous ignorance to HIV combined with my low self esteem, but I couldn’t see a way out and certainly couldn’t see a future with someone.
I just assumed that nobody would understand and that even if I did meet someone, it wouldn’t be fair to burden them with the responsibility and reputation of being with a HIV+ partner.
Seven months on, along with a lot of therapy, I can see that, whilst maybe a rational thought at the time, these thoughts are simply unnecessary.
By speaking openly and honestly about my HIV status, with you, friends and potential partners, it removes the possibility of it becoming a taboo subject and gives ME the ownership. I’m sure, as with anything, that people will still judge and talk behind my back, but at the end of the day… who cares?
A great friend of mine gave me some valuable advice:
“In life, you have two options: If you don’t like something, you can change it or accept it.”
I can’t change it so I’m forced to accept it; and in doing so I have learnt to accept a lot more about myself that I did before.
It is not my responsibly if other people can’t accept me as I am; be that my sexuality, gender, political views or HIV status. As long as I am honest and open, then the responsibility falls to the other person… and if they can’t accept you that is their issue to deal with and not yours.
In my experience, albeit limited at the moment, I have heard nothing but support from friends, family and people I don’t know from all over the world. The perception that no-one will give you the time of day, and that people won’t find you attractive anymore is false. There are going to be people out there that may not be as accepting as I would hope, but it will be down to us to spread the word, open a dialogue and ultimately get rid of the stigma that surrounds HIV.
Yes, I have taken a bit of a knock, but I have learned a lot more about myself and feel a lot stronger for it.
As always, share this blog!
You’d be amazed at how many unassuming people it will help.
Until very recently, when it came to telling people I was HIV positive, it felt like I was re-living my ‘coming out’ years all over again. (A part of my life I prefer not to dwell on too much).
The anticipation, knowing you going to have a difficult conversation with someone
The worry, of what they might say or do, that their opinion of you will change, and you will forever be known as ‘their friend with HIV’
The shame, the judgement, the fear
Trust me, I felt it all. But actually, after preparing myself for the worst outcome from everyone, I can honestly say that not a single person has said anything discouraging or insulting. In fact, I have had nothing but kindness, love and support.
My close friends were the first people that knew. I live in London, and as a result, like so many of us, live away from family. Friends down here are my family.
I wouldn’t say it was easy telling them; there was still the worry that they would see me as something different, or start unnecessarily worrying about me constantly. I considered just getting through it by myself and not burdening them, but soon felt that if I didn’t talk about it with someone I would explode.
A side note to any friends that may be reading this: it is in no way a reflection on the value of our friendship, but a state of mind you go through when you balance every possibility and outcome.
Some friends I found infinitely easier to tell than others, and it tended to be the ones that I had known the longest that were hardest to tell. Perhaps it was because we had memories from growing up together, and when you’re young you never imagine something like this could happen.
Thankfully, everyone I confided in offered nothing but love and support with no judgement.
What helped me – and I offer this as advice to anyone who may be struggling to talk to people – was knowing I could tell them “I will be ok.”
Unpleasant. Awkward. Necessary!
It’s never a nice conversation to have with anyone that they may be a risk they’ve been in contact with an STI. Especially the mother of all STI’s. But, it had to be done. At the end of the day someone’s life, and potentially many others, could be at risk. So I swallowed my pride and got on with it… I’d deal with my ego later.
My health advisor kindly offered to do this anonymously on my behalf, but I genuinely cared for the people that could be affected and wanted them to respect me for telling them personally… even if it could be an unfavourable outcome…
The way the virus works is there is an ‘incubation period’ of 2-6 weeks, from being infected to becoming ‘detectable’. As such it gives a timeframe of potential partners that could have caused the infection.
When the doctors diagnosed me as I was ‘seroconverting’, I knew who my potential partners were. It did also mean that I couldn’t have been the one to have given it to them, though I can’t say it made the calls any easier.
Seroconversion is the period of time when you go from being HIV- to HIV+ is often accompanied by flu-like symptoms, and takes place a few weeks after initial infection.
I picked up the phone, took a deep breath, re-arranged the pillows on my bed, took another deep breath, straightened the picture that had been askew for months, took another deep breath and called.
The phone-calls were easier than I thought they would be, and I hope that they respected me for talking to them personally… even if it was over the phone. I am still very close to them and they have supported me unconditionally since.
I am lucky to have a family full of love and support. Yet, as many people have already told me with their own experience of HIV, telling family members was hardest of all.
It really did feel like I was coming out all over again. I didn’t want any of them to worry about me because I knew I would be ok… even if I wasn’t at the time.
I chose not to tell any of them until I knew for sure either way. After all, there was no point in us all worrying about something unnecessarily. Once the diagnosis had been confirmed, I bit the bullet.
My brothers were both fine about it, offering support if I needed, but I think my Mum took a little time to get her head around it. Don’t forget, she, unlike my brothers, lived through the 80’s and 90’s when HIV was essentially a death sentence. She, like me at the start, knew little of the medical advances and treatment available now and little about the virus itself.
After explaining that I was being well looked after and with the right treatment I will live a next to normal life, things were fine. My mum is an incredibly strong woman and has supported me through thick and thin… and continues to do so. I wouldn’t be writing this blog if it wasn’t for the immense love and support that come from my family.
The point I am trying to make is that by educating others about the disease, its treatment and prevention, the less cause for concern there is. That’s not to say HIV shouldn’t be taken seriously… it absolutely should. But with a little understanding the stigma you feel when you are diagnosed will soon disappear.
As always, please share this blog. You’d be amazed at the amount of people who feel they can’t speak out about HIV and have lived with this burden for so long.
You know those dramatic scenes in films, where the person is sitting in the consultation room hearing bad news… the sound fades out and the camera zooms in on the doctors lips moving. Well, for me, that’s what it was like.
I don’t mean to be dramatic, I guess it’s just in my nature. Over the next month or so I was in and out of hospital more times than I care to count. In fairness, the more I went, the easier it got.
As I walked through the corridors of the hospital, I felt that everyone was looking at me as if they knew what I had and what clinic I was going to… sounds ridiculous, doesn’t it?
The first few appointments felt like information overload. They must have told me the same thing about how the virus works and what to do with treatment so many times and by the time I got back to the car I found I hadn’t actually taken much of it in at all. Thankfully, the medical team had plenty of leaflets and links to great websites that really helped. I’ve included some of those here.
Each time, they take more blood samples and various other jabs to boost immunity for other things like Hep A, B, C etc. Luckily, I have no fear of injections, needles or anything like that… don’t get me wrong, I don’t want to know the in’s and out’s of what’s going on while they do it, but as long as I’m looking away it’s fine.
At this point I would say, if injections aren’t your thing, it really isn’t that bad. It’s over and done with in minute or two, a scratch is all you will feel and, at the end of the day, it will save your life.
The treatment for HIV, in my case at least, has been fairly straightforward. Two tablets once a day. Everyday. It sounds really simple, but its the ‘everyday’ thing which is the hardest. I’ve never been good to sticking to new routines…
I’m the sort of person who joins the gym in January and goes religiously for two weeks, forgets to go one day, is busy the next and before I know it, summer has been and gone and I’m writing Christmas cards thinking “I really should go to the gym again…”
But this was serious. My doctor had explained why it was vital I take my meds at the same time every day without fail.
“If you don’t, the virus can build an immunity to the treatment drug, rendering it useless…”
There are a variety different combinations to try, but the more options you keep open, the better. I take Truvada and Dolutegravir and the only side effect I notice is some rather vivid dreams… but if I’m totally honest sometimes they’re hilarious so I really don’t mind them.
Deciding on the best time of day took a bit of thought, but in the end I settled for 8am. I know that I’m usually just getting out of bed around that time if I’m working, and if I’m not, my alarm goes off, I take them, I roll over and go back to sleep. I travel a lot for work so I keep a pill pot in my car and I carry some in my bag too. That way, I know if I don’t take them at home, I have plenty with me.
When I hear the alarm, it is a reminder that I have HIV. At first it, inevitably, played on my mind. There are a couple of things that keep me going; The first, it’s just two tablets… there are people who have it far worse with treatments for other illnesses. The second, I never begrudge taking them… by that I mean, at first it really did feel like a burden knowing I had to take them. Now, if ever I feel like it’s a chore, I quickly remind myself that those small tablets are the thing that will keep me alive and well. It’s amazing how that thought can give something so tiny so much weight…
As always, please feel free to comment with your experiences or ask any questions you may have. You can comment anonymously below.
I was working from home and being unusually productive for a Friday afternoon when the phone rang with an withheld number. I answered and it was a nurse from the GUM clinic… I’d recently been in for a routine check up and volunteered myself to start the PrEP trial that was taking place in my area. (A drug that protects from HIV)
“…Something is showing up on your test results and you need to come back for further tests, ASAP…”
My heart sank.
I’ve got it. I know it. I’ve got it.
I asked if I was HIV positive and she couldn’t answer at this stage… but there was a chance.
I’d been in earlier that week and they said I was eligible for the trial and even given me a months supply of the PrEP drug. So why call me at 4:30 on a Friday? Why not wait until Monday morning?
“We need to make sure you haven’t started taking PrEP”
Luckily I hadn’t.
Basically, PrEP is a drug that protects from HIV but is also used in the treatment of those with HIV, in combination with other drugs. If a person is infected and takes PrEP without the other drugs then the virus can become immune to it, making treatment more difficult. Hence the urgency of her phone call.
The conversation ended and I sat alone in my flat and my world felt like it was ending. I don’t think I’d ever felt this scared…. or alone.
The next morning I went to Dean Street Medical Centre in London, on the advice given by the nurse, as there was a possibility they had the facility to get the results back over the weekend.
They took bloods, that had to be sent to the lab, and did a rapid finger prick test. That showed up negative, however, I was told by the doctor that whilst rapid tests are a great screening tool, they can’t be 100% reliable as the virus needs to be in your body for a length of time before it will show up. (I’m not going to pretend to know the ins and outs as it’s beyond my knowledge). As it happens there labs were shut until Monday.
For the rest of that weekend I was a mess. It was the fear of the unknown that was eating away. I spoke to one or two of my close friends in London about it, but I didn’t feel like I needed to burden my family with the worry because there was still a chance it would be nothing.
Monday came and I was seen at my local GUM clinic for yet more bloods. This time they got most of the results back by the Tuesday morning, whilst they were still waiting for my Viral Load (a count of how much of the virus is in your body) the doctor made the assessment that my results would likely come back positive and that we should begin treatment…. which meant more blood tests.
I remember sitting in the consultation room absolutely sobbing. I didn’t know where to start, and it felt like information overload as the doctors, nurses and healthcare advisors tried to explain everything as kindly as possible.
At this point I have to say how incredible the medical staff were.
They gave me my medication, tons of information to take away with me, follow-up appointments, and told me they’d call when the Viral Load result came in.
The phone rings with a withheld number. It’s the doctor with my results.
My Viral Load was 10,000,000+ (a count of how many copies of the virus per ml of blood)… usually it should be zero.
My CD4 was 350 (a count of your white blood cells)… usually it should be between 500 and 1500.
It was quite scary hearing the doctor talk about numbers in the millions. I’d started treatment and knew I was being looked after in that sense. But I felt like I was at the bottom of a very large mountain, and knew that mentally and physically I had a long way to go.