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

Btw I never had sex ed at school either. They don't talk about it much nowadays according to my DDs - and their view is there is more important stuff like chlamydia to learn about.

Sex ed is supposed to be getting a total facelift with more current info for all STIs, but the government is dragging it's heels somewhat.

Hopelesslydevoted yes HIV has come very far. However there is still so much work to be done in raising awareness and stigma especially in other countries. We don't have babies born with HIV here, but is still happens elsewhere sadly.

I really don't know why it has developed so fast compared to other areas. It is certain that it is more easily treatable when compared to something like diabetes. Research done on any autoimmune illnesses can helps others - there were studies done on Raltegravir (an HIV med) given to people with MS not too long ago - didn't go anywhere unfortunately.

Unfortunately HIV is attracting less and less money as the NHS and charities struggle. Clinics in some areas can't cope and some are closed down due to funding.

I would say that there are just as skilled researchers trying to cure cancer. I don't know if it has been easier to create treatments that work. there is still so much to understand about the virus, but it's great that more is being discovered all the time.

Re treating HIV in the elderly - well it's a relatively new things that people living with HIV are lasting so long now.

There is not reason why the VL shouldn't be kept at undetectable levels till someone dies. whether causes are unrelated or not is going to become something more and more difficult to decide as time goes on I think. Apparently we are slightly more prone to get certain cancers etc percentage-wise. but then take someone who pre diagnosis smoked like a chimney and was really unfit. then when diagnosed he stops smoking and starts to eat healthily and exercise. The chances are he will live longer.

I came across this which you might find interesting www.thebodypro.com/content/80775/one-docs-advice-for-caring-for-elderly-patients-wi.html

As I get older personally I would be concerned at remembering to take my meds, and any interactions with anything else I need to take. I think as injections come in things will get easier for the elderly as the responsibility is taken away, so to speak.

Just thought I'd throw in there...I'm definitely being cremated when I die as it's the one way of killing off the virus for good! (freezing doesn't do it but it heating to over 60 degrees does

matchingpjs as surferjet said, yes AIDS does still very much exist in other countries. And the examples you gave fit the bill exactly - people when drunk or high are more prone to engaging in risky sex/sharing needles etc. You are absolutely right the memories from the 80s are hard to forget. Luckily some younger people are oblivious to how things were, but should be made aware of how things are.

In the UK the term is not used any more. In the past anyone who had a CD4 count (type of white blood cell used to measure the immune system) of under 200 was classed as having AIDS. To most people that would mean they were probably going to die. However because treatment is so good nowadays they don't die. So it is termed as late onset HIV. It is still used a lot in the USA.

Unfortunately so many people are still being diagnosed late in the UK, simply because they don't think they are at risk, or don't test. The first sign for them is other little niggly illnesses like skin problems as the immune system gets depleted.

So basically in England/Wales if you can't infect someone because you have an undetectable viral load, and you only want a hookup (a term I learnt only recently from dating appsone night stand - then you don't need to tell.

Oh, because of the viral load. Got it. Thanks.

You’ve learnt an awful lot about this in a short time, haven’t you? It must help you feel more in control.

Thanks for the thread.

Thank you for sharing all this, you have such important knowledge that needs spreading, but at the same time this comes from such a personal and upsetting, well, traumatically devastating thing happening to you... even though it’s not a death sentence it’s still overwhelming and bloody shit.

Yes is does help with the control thing. We often say that - that we feel a total loss of control on diagnosis. Clinics do their best but the loss of confidence can be really overwhelming. Trying to take back control is something we can try to do, as in how we feel about the Virus and about ourselves. This can take time andis where peer support can really help and chatting to others in the same boat.

Haha I think I should have your username WellThisIsShit - so appropriate . But yes ‘tis shit....thank you . And hopefully this thread will help others.

Name change check

@HIVpos thanks for answering my question. I'm glad your girls have dealt with it well. Have they told any of their friends or is it very much kept to your nearest and dearest? How did your parents react?

@namechange6789
Would you mind me asking a question? (I hope you haven't answered this already and I'm wasting your time). How did you contract HIV? When you were so ill during seroconversion, did the doctors/you realise what was wrong or did you find out by chance then or later? I had no idea that seroconversion was so traumatic. I thought it was like having a mild, short-lived case of flu.

I'm quite old so was around during the "AIDS - Don't die of ignorance" campaign. Although I can imagine the medical world was in a frenzy, i think the way the government handled it was so damaging. People were too scared to get tested, actively and aggressively ostracizing and rejecting those who suffered from the disease, it put fear into sociefy but I'm not sure it increasesd condom usage at all.

I found it so traumatizing that I developed health anxiety and became very screwed up about having a sexual.relationship with anyone. I developed OCD about sex and disease. I was also a nurse and found it very hard to keep my fears in check - I used to dream about needle stick injuries. In the end I had to see a psychiatrist because I developed such anxiety about the possibility of contracting it from invisible splashes of blood or body fluids/toilets/sex (always used the most protective condom but was too scared to enjoy it really). In the end I was convinced I had it and even thought about killing myself so my family wouldn't have the shame of it. I guess it must have been tied up with other issues in my life and generalized anxiety but it manifested itself for like that. It wasn't about feeling disgust for those who had it, more an absolute certainty that I would get it no matter how careful I was. My mum had a very prudish and distasteful view of sex so it probably was tied up with that.

I'm over all that now - it seems like a different life. But I wouldn't be surprised if many people who remember that advertising campaign remain fearful and would not tolerate the idea of inclusion for those who have contracted the disease. It bred fear and encouraged a lousy attitude towards those who have it. I think the younger generations haven't been exposed to that level of fear mongering.

I hope I haven't offended you at all with this post. Thank you for talking about it.

For those who have been pregnant since HIV diagnosis - what advice were you given regarding conception, pregnancy, birth, breastfeeding?

Thsnkyou for this thread OP. I am another person scarred by the 80s AIDs epidemic and television camlaign. It was awful how it created so many prejudices and fears. People were terrified.

I refused HIV testing during pregnancy as i was pertified.

It does seem to be a very different kettle of fish these days. I cant help but wonder if testing should be seen as routine as smear tests. Such is the stigma people are still afraid on a head in the sand type of way.

I told dp about the uninfective status and he said he is not sure he could take the risk which just goes to show how people need to be re educated about HIV.

Time for a new tv campaign!

@Somanymistakes I'm another one who was traumatised by that campaign. Think I was about 10 when the tombstone advert started on tv, it completely warped my view of sex.

Thank you for raising awareness of this issue , being a lesbian feminist have heard many similar cases, from many straight women

I hope you are getting the support , lots of love to you
Liz & Jo xxx

Somanymistakes I'm sorry you had all the anxiety problems - sounds like a mix of bad timing with the tombstone ad at an impressionable age, the fact that you're a nurse, and your mother's view of sex. At least you got it sussed eventually - and I hope you are now having an amazing sex life!!

In the 80s I spent most of my time working abroad. I saw the ad and basically thought it had nothing to do with me so although it had an impact as a "terrible disease" it's just nothing I thought I'd ever get. I understand that those for whom it did have an impact might think "why do I want to get tested and know" considering the side effects of the meds then! Also the fact people didn't start meds straight away, unlike nowadays. they started when their immune system stated to fail mostly.

You might be interested to know though that HIV anxiety is still a thing with a lot of people - and not just older people. People still get scared shitless that they've got it from someone of "unknown status" from, say a blow job, or protected sex where the condom slipped a little (but didn't come off or shred so no risk) or sharing equipment, say, at the hairdressers, or believing the rumours about it being in food. they almost try to talk themselves into having it!

Btw although needles stick injuries and transmission have been known - albeit rarely) in hospital settings, there has not been one recorded case of HIV transmission in stepping on a discarded needle. And you can't get it from toilet seats - I'm sure you know that now!

Re your question about telling my girls - I have no idea if they have told anyone else, but I don't think so. When I told them I made sure there was someone else for them to talk to - for one DD a mutual friend, and the other her bf who would be really laid back about it (she said later she didn't tell him though). Really it's up to anyone I tell if they tell anyone else and that is something I cannot control. However by people talking about it with others - eg other mothers with their kids, it helps raise awareness. My parents are dead and I don't honestly know if I would have told them. They were pretty old fashioned and would have been mortified I should imagine. However I know of others who have told their parents, who have been great and really supportive.

I have told a few friends, some of whom have been really wonderful. The problem with HIV is the more you feel you have to keep it a secret, the more you feel self stigmatised by it IYSWIM. A lot of people feel for various reasons that they can't tell anyone IRL, and can become really isolated by it as a result.

Hopelesslydevoted the main advice would be is make sure you are adherent to your meds so that vertical transmission doesn't occur. Have sex as normal - there's no need do anything different nowadays. However you should inform your HIV consultant that you are TTC. There are certain HIV meds that are contraindicated when pregnant - eg DTG (dolutegravir) has recently flagged up as a possible safety issue.

I understand the you get an additional early scan - I'm not sure if there is anything else that is different when pregnant. Perhaps namechanged can answer more on that.

Birth nowadays - do as normal. Breastfeeding - I studied this recently so will copy & paste below ...might be long and prob TMI!

HIV can be found in breastmilk of a woman who is HIV pos.
In the UK exclusive formula feeding is recommended, However support should be fully given to mothers who are stable on ART, UD and wish to breastfeed. Feeling they are unable to do so can have financial and psychological repercussions and could lead to ”secret” sporadic breastfeeding, which could put the baby at more risk of contracting the virus.
Infection for the baby is perceived as very low risk in this case but precautions should be taken. Exclusive breastfeeding for 6 months is recommended rather than mixed feeding, as formula can irritate the immature gut of the baby, causing lesions that can allow the virus to enter the bloodstream. Also less regular feeding can result in inflammation of the mother’s breast, and therefore shedding more virus to the baby.
Breast inflammation such as cracked nipples and sores in the baby’s mouth (which gives the virus an easier route) should also be treated promptly as this could increase the risk of infection.
Adherence is paramount in the mother, and regular testing of both mother and baby should be done from birth onwards. The baby should also take ART (zidovudine) for 4 weeks.
Quality and quantity in this scenario should therefore be low, and as long as the virus does not enter the baby’s bloodstream the risk should be minimal.
If the mother is not on ART and has a detectable viral load, or on ART but not adherent, and chooses to breastfeed, this would constitute a child protection concern. The risk of vertical transmission would be much higher due to the quality and quantity of the virus and much greater possibility of it entering the baby’s bloodstream and infection taking place.
BHIVA guidelines differ somewhat to WHO guidelines, where exclusive breastfeeding is recommended, although, as above, following all safety precautions.

Thank you HIVpos for starting this AMA

However by people talking about it with others - eg other mothers with their kids, it helps raise awareness. My parents are dead and I don't honestly know if I would have told them. They were pretty old fashioned and would have been mortified I should imagine.

I'm really happy that you are doing so well post-diagnosis. A parent of mine was diagnosed 15 years ago, and it has essentially destroyed their life. I didn't know for the first few years- it was only visiting in hospital when they had PCP pneumonia and I saw the medication list on their chart, that it clicked.
Unfortunately my parent not wanting to burden me or siblings, told only my DGP and I feel their utterly terrible reaction to the diagnosis (mortified is the right word) has compounded my parent's own sadness at it, rather than it being a problem shared, as such.
They, in their massively misguided attempt to 'keep my parent well' after HIV had them stay back at their home to recover from the illness which had led to diagnosis, but insisted they used separate cups, cutlery and plates, their clothes and bedding washed separately from the familys, and the bathroom and toilet were bleached after use. This was told to me by deeply upset parent years later, who said they meant well, but that exclusion and isolation barely disguised revulsion made them feel like a walking bag of infection and they wanted to die, which was why they had never felt able to tell me or my siblings.
I only found out as they'd stopped taking their antiRV in the hope they'd die, and this 2nd bout of PCP pneumonia led to the hospital admission where I saw their chart.
I was disgusted with my grandparents, and felt sadness that my DP had been made to feel so ashamed and dirty, which led to not wanting to admit their status to their own DC for fear we'd also treat them differently.

I'm happy that in theory, more is known now and the stigma is not as overwhelming as it once was- but I've found that the attitude is still dangerously ignorant.

For example, I have a male friend who has said the transmission risk is higher for Gay men, so he wouldn't 'tempt fate' by sleeping with a HIV+ male, but has happily gone bareback with people he's met on Grindr because "a poz man would insist on using condoms, wouldn't they?"

I had a family member contract HIV through contaminated blood in the late 80s and he died less than two years later.
Obviously there was a lot of stigma at the time, which has resulted in his full condition being something of a "family secret".

To what extent do you think the 80s "tombstone" mindset still exists?

I used to be a dentist and cold sores worried me far more than any blood borne virus. Particularly HIV. If anyone feels they get different treatment because of their status they should report the clinic and find someone else to treat them. Outrageous.

Lem you are right - it should be normalised and then people wouldn't be so scared by having the test. They should stop asking for that extra layer of consent. Also they should be done as standard in GPs' surgeries. A lot of people find stigma in just attending a sexual health clinic, as in there is something "unclean" in even going to one.

So yes, a new campaign - and make clear how much meds and life expectancy have moved on. It doesn't surprise me that your DP said he wouldn't want to take the risk. However HIV is actually really difficult to catch. I know couples who have had unprotected sex for years without knowing that one is HIV positive - and one didn't infect the other. When I got married back in the early 90s it didn't occur to either of us to get tested for any STIs, despite both of us having previous partners.

Liz & Jo this is true - HIV diagnoses are rising in older straight people getting divorced and moving on to new relationships. I'm not a feminist myself, but I do think women get missed out a bit as we make up ⅓ of people living with HIV in the UK. Sofia Forum and THT recently did a study on "Women & HIV - Invisible no Longer" sophiaforum.net/index.php/hiv-and-women-invisible-no-longer/

A lot of women "came out" and told their stories in the news and magazines etc which was great

Wow NameChange354 that is so sad . I guess sometimes parents try their best, but their best is so misguided and comes from a place of ignorance. It is stories like this that make me unsurprised that people want to take their own lives. People can still be pretty shitty in what they say unfortunately - on apps like Grindr etc. You have to highly respect those who put themselves out in the public eye to try to raise awareness.

Ah yes - it is a common thing that people think they are less at risk having bareback sex with someone of unknown status rather than someone living with HIV and on effective treatment - and know they have no other infections ('coz the flipping consultant asks if they need testing every time they go to the clinic for regular blood check ups!!!). As for using condoms - well yes I would insist as I know that I am uninfectious, but I don"t know if the guy I'm planning to have sex with is!). Some peoples' logic!....Actually it's stigma!

Btw if anyone is interested, transmission is higher in gay men as the lining of the anus is thinner and more susceptible to abrasions and tearing (thus allowing the virus to enter) than that of the vagina

Fairfax - yes, even now it is kept as a "family secret" by a lot of people. I haven't heard of anyone dying so soon after being infected though. I'm guessing he was poorly with something else to start with which is why he needed the transfusion.

As said, yes the tombstone mindset still exists for a lot of people. Campaigns are started to reduce this (THT has a "can't pass it on" campaign going atm - www.tht.org.uk/our-work/our-campaigns/cant-pass-it-on ) but imo it needs to be more widely spread.

MrsMorton yes, cold sores are more infectious than HIV in a dentist setting. Some people do I believe get treated badly still and it shouldn't happen

From what I know there wasn't much could be done in the 80s so it could be swift. Officially the cause of death was put on the DC a respiratory complaint IIRC.

I wonder if he was really poorly anyway, and with the virus in the transfusion his body couldn’t cope? I met someone last year who had a blood transfusion infected with HIV many years ago in Africa (possibly for malaria?). He didn’t actually find out his status till years later, is now on meds and doing fine.