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

@Melliegrantfirstlady
Fuck off eh?
You are taking the piss whilst pretending to be disingenuous.
(Look that word up in a dictionary - you may find it useful in your GCSEs)

@HIVpos
Have you told your daughters?
How have they reacted?

I’d have to say that’s one of the dafter questions I’ve been asked (apart from the fact I didn’t do anal with the guy I got it from as it’s not always spread that way!)

It’s a bit like asking how you can create the flu virus if someone infected with it sneezes on you. Any virus if it takes hold basically multiplies. The HIV virus uses the body’s own immune system to do this and integrates itself in to be a part of it.

Somanymistakes yes I told my DC. They were shocked of course - a bit weird that I’d brought them up to stay safe etc and then this happened. I realise they have to make their own mistakes but hopefully they will also learn from mine. They were good at reminding me to take my meds at the start, but we don’t really talk much about it now. I think they found it difficult to understand the level of my upset, but then who can unless they experience something like this themselves?

My work background is immunology/life sciences based and I'm very happy to see more governments in the world taking into account the results of the partner study, officially declaring people with undetectable HIV non infectious. OP, do you think the stigma will ever lessen?

Hi op.
Thank you for this thread.
Fantastic advances have been made in the treatment of HIV in recent years which is great, I heard only last week that a vaccine is on the horizon!

So, my questions.

1. do you feel the stigma around HIV ( which is apparently worse within the gay communities ) will ever completely go? & secondly, how do you stop yourself being ( not sure what the word is, angry? resentful? ) that you were the 1 in 1000 ( I think? ) that contracted the virus. ? The ‘why me’ thing. Basically, how do you keep it all together?

Thank you .

I don't any questions.
However I'd just like to agree You're very courageous.

It just bloody shows you though doesn't it.
You never know the minute.
I wish you well.

Thank you so much for this thread OP. Thank you for being so open and articulate. I didn't consider myself uniformed or naive but after reading this I've learned I was exactly that!!

Do you have fatigue? Or are you pretty much completely symptomatically unaffected?

I suffer with different autoimmune conditions and CBT helped me a lot. Have you had any kind of mental therapy apart from the session with the odd "specialist"?

Thanks for your answer.
BTW the article was many years ago so pre undetectable is untransmissable knowledge, or at least the journalist wasn't aware of that, I should have explained that.

NC for this. I’m pretty sure one of my parents has HIV (recognized a medication a few years back) but never said anything. I want them to know I love them and care/ happy to help but I guess they didn’t tell me for a reason. Would you bring it up or leave it?

Thank you for the last messages, and thank you babyspider. They are similar so will try to answer them together

This is a link to the partner study if anyone's interested i-base.info/qa-on-the-partner-study/ Basically 58,000 instances of condomless sex between serodiscordant couples (one HIV pos and on medication and one HIV neg) - zero infection.

Unfortunately there is a lot of old info still out there - so easy to read stuff on the internet that isn't true anymore. I don't blame anyone for being misinformed/naive - I certainly was! And misinformation is still being spread - there was an article in the Daily Fail on PrEP a couple of days a go with wrong information. I believe the journalist was invited for a coffee and some educating but as far as I know has not accepted!!

Stigma is still out there although there is a lot being done to try to reduce it. For a lot of us HIV pos people the stigma is actually inside us and we possibly make it worse for ourselves, partially due to the need to keep it secret, so it's shame really. It takes a while to wrap our heads round our diagnosis - some people think they're going to die soon, they can't travel, or work - one person was told they couldn't even keep a dog (ok this wasn't in the UK). Even some of the medical profession is not up to date.

what I would love to see is another ad campaign which starts off with the tombstone ad to get attention, but then goes on to say how it is nowadays. So basically STILL don't die of ignorance, get tested, know your status get on treatment - and live!

I've been pretty lucky really. I would say the person I got the best reaction from was my dentist. He just looked at me blankly (I was in a bit of a state when I told him) and said it wasn't such a big deal nowadays and there was more infectious stuff out there. He was clued up, yet someone who saw another dentist somewhere in the south of England, was told they had to have the last appointment of the day, extra precautions were needed etc.

surfer - yes, there are vaccine trials. Luckily there is research being done all the time. However it will all take time. I personally do not see a cure in my lifetime. What will come next will be injections done every month/2 months.

Oh yes - the why me thing...I thought that so so much. Yes it upset me incredibly. It just seemed so unfair. I don't think I did keep it together very well for quite a while. I felt like I was walking round with a big HIV neon sign over my head and it was all I could think about.

I tried to be proactive about it. I wrote on here to warn others. I joined an HIV forum and did a peer mentoring course and treatment certificate to learn more about it and help others. This in turn helps me.

Somanymistakes I did wonder if they were taking the piss or genuinely uninformed! I think I could ask my 9 year old and she would know...

I assume I said yes to every test during pregnancy, but I can't remember though so probably sensible to be tested again.

Thank you for this thread, it's a brilliant reminder to get checked and to be careful. HIVpos I admire you and I'd be bloody proud to be a friend in your circumstances. Your diagnosis isn't who you are, it's just part of you. But are you happy?

Checking name change

Thank you for your reply.
All the very best to you

dannigrace sorry to hear about your autoimmune conditions. I understand some can be quite hard to diagnose sometimes.

No I don't have fatigue. Some people do complain of that which could be due to their meds combo. I've had all sorts of minor things in the past year that could be menopause related. It can be quite confusing trying to work out what is related to meno and what to the meds. I'm on low dose oestrogen patches (50mg) atm - I already have the Mirena in, as I think it will be beneficial.

Luckily I have been fit and healthy for a number of years, don't smoke, drink in moderation and go to the gym. I now try to eat more healthily than before - oily fish, vitamin D in winter etc.

As I said upthread, the mental bit is tougher than the physical. The consultant gave me a phone number for counselling and suggested mindfulness. Tbh I found chatting in the HIV forum helped as much as anything - discovering I wasn't alone and my feelings were normal.

OP I've been HIV positive since 2008. I take 3 pills a day am healthy and have no effects at all. What I do have to say though, is seroconversion can, in rare cases kill. I got meningoencephalitis whilst seroconverting and was close to death for a week. Thankfully I pulled through with only a minor amount of brain damage and double vision that lasted a month, but I wished this was more commonly known.

PS the pain was worse than anything I've ever known (Apols for the hijack!)

Jimjamjooney that's a tough one. I don't know how old you are, and how open a relationship you have with your parents. They might not want to worry you about it, or just think it's not your place to know, or think you might see them differently.

Perhaps you could bring it up in conversation and acknowledge how different things are nowadays - length of life the same, effective meds without the side affects of the past etc. Times this could have been done recently were the Seb storyline on Corrie, and donations to CHIVA (childrens HIV Association) requested by Harry & Meghan when they got married. Just something mentioned in passing to show you're ok with it.

Hi namechanged - i knew I wouldn't be the only one here!!! No problem - it all contributes.

It's true, seroconversion can be life threatening for some, and we might not get the "standard" symptoms - yet others get nothing at all. Sorry about the pain. Did you get diagnosed at that point? Mine wasn't diagnosed - both my Dr and I thought it was a sick bug (it just lasted a long time!). I thought it was something more when half my hair fell out the following month.

OP - I remember reading your original thread - just wanted to add my message of thanks and well wishes to you... (btw what did you decide with regards to your dentist?)

Waves! Yes I got diagnosed pretty quickly and have had two very healthy children since. 😊. However the partner study hadn't been released when I had my children so I had to go through the hell of waiting 18 months to see whether I'd infected them. I don't want to use the term lightly but I think I have PTSD related to this....

Brazzle - you probably did get tested during pregnancy as you'd prob. remember if you refused it.

Thank you for your kind words - it is true that I felt like it defined me at the start - not so much now. Am I happy? Well, I still get upset. It's still an unknown if anyone would want me, but then there are HIV pos people in relationships who are unhappy - could be a case of the grass is always greener. I look at the positives in my life (yes, there's always a pun in that word now ) and I guess I am lucky with what I have.

PS have been lucky to have the most amazing dentist and the most beautiful human being of a consultant. I love the NHS more than I can say...

Well done on sharing.. But I'd be completely terrified to have sex with a person with HIV. Didn't rtft but how is it not possible to transfer it?

I did read your other thread and I think you should be telling your dentist so they can take extra precautions.