I'm HIV positive AMA

[HIVpos]

Although most MNers seem to know this stuff, I keep on seeing incorrect info posted (a few days ago it was something about HIV taking 18 months to show up on tests - so untrue!!!)

Anyway - my "coming out" post from last year is here if anyone is interested www.mumsnet.com/Talk/relationships/2942589-Getting-back-in-the-saddle-and-HIV

Gosh, your story is so scary- thank you for sharing so that other people are aware!

Does HIV affect your day to day living very much?

Do you think there should be more sexual health education targeted at your generation?

Yes it is a bit scary, isn’t it LadyLance - I mean who’d have thought divorced women of a certain age could get this - I was so naive! So yes it would be good to see more done to educate us - both male and female. This is my mini effort

Day to day living - not really any impact. I take a couple of pills with supper and that’s it. I go to the clinic twice a year and get viral load test done to check I’m still undetectable (ie non infectious). Plus checks for other things like kidney health. Basically a mini MOT.

You're very brave to do this, but I think it's important to talk about it too.

I'm glad there's not a major impact on your life :)

Have you been on any dates since your diagnosis? Do you prefer to tell a potential partner about your HIV status early on, or keep it private until you get to know each other better?

Also, what are your feelings towards the guy you contracted HIV from? Was he aware of his HIV status at the time or not?

How long have you lived with this? How were you diagnosed? Xx

I understand that undetectable is untransmissable by sex. But if somebody only has a viral load blood test every 6 months could they be unknowingly infectious for a few months before their next monitoring test is due?

How was the news of your diagnosis broken to you by the doctor/ nurse? Is there anything you wish they had done differently when giving the diagnosis?

Has anyone reacted badly or have your received any ignorant comments? (I really hope not).

I think the improvements in HIV treatments and care are surely one of the biggest medical advance over the last couple of decades. Rhetorical question that one I guess .

Thank you for sharing your story. I'm glad to hear your health checks are going well and your daily life is unaffected. My question is - how has your diagnosis changed your outlook on life?

I’d be lying if I said it hasn’t had a major impact on my life tbh. I thought post a shitty long marriage that life was beginning again. Then this . The mental part of an HIV diagnosis and getting your head round it is way more difficult than the physical I’d say.

lostinjapan excellent question. There are HIV dating sites but not a lot of choice there. I’d always planned to try dating again, so I joined a couple of regular sites. I wanted to do it sooner rather than later before I bottled it! OkCupid was good in that it’s question based, one of which is “would you date someone with HIV” . My first date was with someone who’d answered yes to that - for all I know, HIV pos himself, or perhaps more educated? Anyway I didn’t fancy him so no need to disclose.

I’ve had a few dates and second dates but not taken anything further so far . I guess I’m quite wary, but if I did meet anyone and wanted to take things further then yes, I’d disclose, but only after he got to know me first.

As for the guy I contracted it from, well I’d already finished with him before I went to get tested, so other than telling him he should go and get tested I’ve had no contact with him. The vast majority don’t know they have HIV when they infect someone else, so the easiest thing for me is to believe that he didn’t either and concentrate on myself.

Lem I was infected at the end of 2016 and went through seroconversion in Jan 2017. However I just thought it was a sick bug at the time. It was only when I went for a full STI check up in April after the relationship finished that I found out.

So you’ve not talked to the bloke who you caught it from? He’s not been in contact to confirm or deny he was the source? Do t you want to talk to him from a closure perspective, or do t you see that as a necessity and are happy to get on with life?

You are very generous to share your experience with us.
I have read your original posting through the link you gave on this thread.
It's as easy as that, to be healthy one month and life changes the next. Could happen to any one of us who is not with a life partner and perhaps sadly some who are.
You mentioned your age, you remember the havoc and misery that the virus used to cause .

Have memories of the awful emergence of AIDS ever affected you?
Are you able to take your diagnosis on board as it exists now and not what it was?

(I use the term AIDS because back then first anyone knew of infection, it was fully blown and a mystery. There was no knowledge of HIV. In fact even the term AIDS had not been coined).

Hopelesslydevoted once someone has had an undetectable viral load for 6 months and continues to be adherent to meds etc there is no reason to believe that this will change before the next test. Also the partner study 2016 which proved this, was done on people who had a viral load under 200. The machines that measure UD now do so even lower at

Thank you for this thread. It's a topic very close to my heart.

Btw, the U=U message (undetectable equals untransmissable) is endorced by all major organisations - British HIV association, NHS etc

Ticcinalot Everyone I've told has been great - if extremely shocked! I think this was due to the fact I am female, older, not promiscuous etc, plus they know me! It's difficult to explain to people that anyone can get this. I have had to do a lot of educating as, like them, I hadn't got a clue beforehand.

One person did think I might have infected them from sharing a drink. At one point I tried to seek counselling from the National Counselling Directory, but the person I picked who said they specialised in HIV....didn't! They wanted to address the wrong things, eg thought I could get HIV even more if I had sex with the guy again etc

Yes, melonscoffer major advances have been made, but a lot still needs to be done to get that frigging tombstone ad out of peoples' heads. Nowadays people can be diagnosed really late, go on treatment and recover. This is why the term AIDs is not really used any more. I have chatted to people who had pretty well zero immune system when diagnosed, but who still recovered. We are very lucky to be living in this day and age and for that I am really grateful. I was never really that affected personally in the 80s. I was too busy living my life and it was pretty well put across as a gay thing, and I knew very few gay people.

SD1978 I spoke to the guy a few times. It did concern me when he seemed to be doing nothing about it initially (which is his prerogative really). However he did eventually go and get tested at his clinic and started on meds. Yes - I definitely felt closure when I knew this.

There's no 2 ways about it that he was the source, given the timing of things and my somewhat limited sex life!!! Most people don't actually know who infected them. People don't go get tested enough and too many are still being diagnosed late.

ScreamingValenta Yes it has changed my outlook on life. I think I've become more caring of other peoples' problems. I focus more on my health, eating properly, exercise etc. It has even been said that people living with HIV will live longer than they would have without it because they take care of themselves more.

I also take the attitude that if I don't like something I do what I can to change it - as in a "life's too short" sort of thing.

From your experience of telling friends and family about your diagnosis, do you think the public as a whole are educated and aware about the developments in HIV treatment? Or is it still seen by many as being a ‘death sentence’? Do you think there’s a generational divide in that respect i.e. do younger people have a better understanding about modern day HIV treatment and prognosis?

Lostinjapan the younger generation tend to know more than the older I think. Sex Ed in schools is I believe getting a revamp, though it’s taking time for this to happen.

I find it amazing how much HIV is out there in the news etc - stuff I never paid attention to before. I don’t think people realise the advances continually being made - eg they are now trialling injections to be done once monthly/every 2 months as an option to meds. Then there’s all the cure research. What’s great is that something used for one autoimmune illness might be useful for another.

We now have PrEP to help prevent HIV, and PEP, which is a bit like the morning after pill. Then there’s home tests where you get the result there and then (like pregnancy tests!) you can even get a test through the post free atm test.tht.org.uk/ And instead of taking 3 different medications now 2 are being shown to be just as effective, potentially reducing toxicity.

Thanks for answering my questions. Can I ask a couple more?

What would be your honest reaction if somebody changed their mind about having sex when they found out?

Based on an article I read in a gay men's magazine (doctors waiting room, I'm a straight woman) criticising people who changed their mind about having protected sex due to their partner disclosing HIV. Basically saying, the risk is zero or close to zero, so you are being ridiculous to change your mind for this reason, and you are encouraging people to not disclose in future. Logically it makes sense! But I'm uncomfortable with the idea that we have to be logical in decisions relating to having sex. Just wondering if you have any thoughts about the matter. Sorry if too intrusive.

No it’s not too intrusive Hopelesslydevoted – lots of thoughts but a bit of a jumble in my head so will try to make it coherent!

Re the first question, well I’ve asked myself what I’d do if the shoe were on the other foot. I think it would take a while for me to get my head round it tbh if someone told me they were HIV pos – I mean most of the guys I’d be likely to date would have lived through the tombstone ad years – unless I go for a toyboy

First off, I wouldn’t disclose till I thought we clicked and he might be relationship material. I’m sure there are clues I could come with as to how he’d react. I don’t think I’d tell him and expect to have sex straight after. I’d want to him think about it a bit first….at least 10 minutes or so Yes, of course I’d be gutted if I really liked him and he knocked me back but I’d hope he liked me for me and was intelligent/open enough to understand the situation. It is scary though – dating is tough enough as it is without HIV! If it was a no go then he wasn’t for me anyway.

Ah yes – I think gay people have it worse than straight people – there can be so much discrimination there. Last week there was an article saying that nearly 1/3 of gay people swipe left on HIV pos. dating app users – and these are HIV pos people on effective treatment. Weirdly they would prefer to indulge in bareback sex with a guy who hasn’t mentioned his status (and might not know it) – as in potentially more risky.

A lot of guys on apps like Grindr don’t put their status up due to discrimination, or they might say they are on PrEP. If they are only looking for a hookup then there is not need to disclose – not in England anyway. Others put their statuses on in an effort to educate people – all credit to them! Times are changing, albeit slowly.

At least HIV pos people know what they have and haven’t got. I regularly get asked if I need any other STI testing ie have I had any “risky” sex If you think about it, I’d be at more risk of catching something off someone else that they would me! In a relationship, I would not have unprotected sex unless he had a full STI screen!

Btw – it’s zero risk – not negligible, or low or close to zero

Thanks for sharing your story. I live in a country with extremely high HIV rates. Lots more to be done but the emphasis here is on “know your status”.
I have an HIV test every year as part of my medical. It’s a tiny pin prick and the results come through within about 3 mins.
I think normalising HIV tests are one of the best ways to reduce hiv infection rates. It astounds me that people can have a STI test and it doesn’t include a simple HIV test.

I agree Rainbow the only time I've ever been asked if I want an HIV test is when I was pregnant. That extra layer of permission needed....shouldn't be - it should just be done as standard. Even at my clinic when I went to get tested, I was asked more than once it I wanted the HIV test, whereas the others were just done.

This is why a lot of people discover their status when pregnant, or giving blood, or as part of a medical needed for work or for a visa to live in another country.

There are some countries (I have just visited one) where HIV testing is not routinely done in pregnancy and unfortunately babies are then born living with HIV. So much stigma for even taking the test! It is left to the midwives to do what they can.

There are moves to include HIV testing in some GP practices here - when moving into the area and signing on as a new patient for example in an area deemed as high risk.

I get confused about how a person gets infected.

It states an infected person passes hiv on through bodily fluids but how did that infected person get it?

Does this mean you can create hiv in yourself if your partner ejaculates into your anus?

Melliegrantfirstlady I honestly mean no offence to you but are you really being serious?

op do you often get asked daft questions?

best of luck to you.