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Support for HIV partner

76 replies

deb45 · 23/02/2024 12:37

My first post on here and have hesitated too long!
My husband is HIV positive. He caught it about 4 years before we met and it's under control with drugs so that he can't pass it on but it means occasional hospital visits for a check up and to collect medication. He asks me to come along for 'support' as he doesn't like hospitals generally anyway and I do but I find myself dreading it and feeling really low for days before and after and wanting support myself! I've asked him to go alone as he used to before we met but he gets angry and says I'm being selfish and should 'be there' for him which I understand but wish the whole thing didn't make me feel crap. When we met he hid his HIV status from me and I found out by chance which doesn't help my feelings. I can't talk to anyone else as he doesn't understandably want me to tell anyone. Am I being unreasonable?

OP posts:
deb45 · 23/02/2024 20:38

HIVpos · 23/02/2024 19:25

Hi @deb45 I volunteer in peer support. I'm sorry to hear of your experience with your partner. There are many people - both men and women - who choose not to tell anyone outside their clinic of their HIV diagnosis whether it's their partner, family, friends or children. We are all different in how we handle it and there can be many factors like stigma (experienced from others and self stigma), being judged, ethnicity, poor mental health, not wanting to worry others and so on. Some might prefer instead to just take their medication which, once the viral load is suppressed, means they can't pass it on. Just to clarify, forgetting the odd pill or vomiting does not pose a risk - the virus doesn't suddenly rise up making someone infectious, it takes time.

It's concerning that he eked his meds out as that can be a risk and taking them this way should not be done. I know things were difficult during lockdown - I remember trying to contact the remote pharmacy to get more meds and kept on being cut off which was really frustrating. I wonder if he might prefer to try (and be considered for) the injectables we have now in the UK which replaces daily pills? You are probably aware of the option to go on PrEP if he is not consistent in taking his meds though sound like he might be now?

From what I can read it has not got to where he has put you at risk, though there might be the potential to do so. It sounds like you have had a rough time and you both need support. If you are in the UK I can suggest a charity that offers online support for people living with or affected by HIV. This support can be for couples or individuals and includes partners.
https://www.plushealth.org.uk/peer-support.html

Edited to add - if he struggles with going to hospitals is there a smaller clinic not too far from you that offers HIV services? I was seen at a stand alone sexual health clinic when first diagnosed though have since transferred to a hospital based clinic.

Edited

That's really helpful, thank you. I didn't know there were injections available as well as pills nowadays.

OP posts:
ThisOldThang · 23/02/2024 20:44

Yeah. I'd have canned the relationship the moment I found out that I'd been deceived into having (unprotected?) sex with somebody that was HIV positive.

Sweetheart7 · 23/02/2024 20:46

Opentooffers · 23/02/2024 19:47

If a person was religiously and resonsponsibly taking their meds, putting nobody at risk and wanted it to remain private that's understandable. This is not that case, and what he does is simply not acceptable and is deplorable.
When pills seen, he should of explained then, but lied about their purpose.
When asked how he caught it, he lied about his sexuality.
Pretty much shows he's a lier in general so it's no surprise OP doesn't believe what comes out of his mouth anymore. That's no way to have to live though, so you should leave the marriage. Stuff his support, he should be on his own. I'm pretty sure there will be a long list of other lies he's told you over time.

There's always a risk. HIV is a big deal and the man had a duty of care to disclose this right from day dot. I would be horrified if I had sex with a person then they told me after. OP the disrespect is unreal.

HIVpos · 23/02/2024 22:36

The science is clear that on effective medication the virus cannot be passed on. This continues to be the case as shown by all the couples having sex where one has HIV and is not passing it on to their partner. I’ve attached a link with more information and in it is a link to all the studies that have been done over the years showing that this is the case. https://i-base.info/u-equals-u/

@deb45 I’ve attached a recent article about injectables. They’re still very expensive and certain criteria needs to be met to use them but might be an option at some point.
https://www.aidsmap.com/about-hiv/what-do-we-know-about-injectable-hiv-medication

What do we know about injectable HIV medication?

This page is about injectables used for HIV treatment. The first complete HIV treatment provided by long-acting injections is a combination of two medications.

https://www.aidsmap.com/about-hiv/what-do-we-know-about-injectable-hiv-medication

Catoo · 23/02/2024 23:45

I’m sorry your partner is a selfish prick OP.

You deserve better.

I honestly hope one day you can see him for what he is, and leave
💐

TwylaSands · 24/02/2024 00:08

Catoo · 23/02/2024 23:45

I’m sorry your partner is a selfish prick OP.

You deserve better.

I honestly hope one day you can see him for what he is, and leave
💐

This. You knew before marrying him he was a liar and selfish. That’s not love

Shitlord · 24/02/2024 01:13

HIVpos · 23/02/2024 22:36

The science is clear that on effective medication the virus cannot be passed on. This continues to be the case as shown by all the couples having sex where one has HIV and is not passing it on to their partner. I’ve attached a link with more information and in it is a link to all the studies that have been done over the years showing that this is the case. https://i-base.info/u-equals-u/

@deb45 I’ve attached a recent article about injectables. They’re still very expensive and certain criteria needs to be met to use them but might be an option at some point.
https://www.aidsmap.com/about-hiv/what-do-we-know-about-injectable-hiv-medication

With all respect, on the first point, that's if it is taken reliably. The partner has form for not taking it reliably so I'm not sure of the purpose of your post assuring her of the efficacy of the medication.

Treehuggingmutherfunkin · 24/02/2024 02:05

Hiding his status is unforgivable

deb45 · 24/02/2024 02:25

Thank you for all your support and advice. Even though it's a few years since I discovered him hiding his HIV status and I always think it's water under the bridge so to speak, these hospital visits do seem to open this old wound. Our relationship is far from healthy I know, in many ways, but am just trying to come out from under my shell and get help (maybe get angry as was suggested earlier on here!)

OP posts:
misssunshine4040 · 24/02/2024 03:53

deb45 · 23/02/2024 14:29

I'm 47 and all the finding out and hurt was about 7 years ago so have since dealt with it so to speak and yes married him but these hospital visits just bring it back and make me feel crap but otherwise I don't even think of his condition otherwise. However I do worry that if I don't accompany him he won't go at all and has only a couple of weeks of meds left so know I have to

So you worry that the only way to keep yourself safe from transmission is to physically ensure you are there to see he gets his treatment as you do not trust him to go himself.

Ultimately you do not trust this man to keep you safe, or be reliable and be an honest and trustworthy person.

Your aversion to the appointments is your psyche screaming out to you that this is wrong and you need to get out.
You are putting all your energy into a person who doesn't care about you.
You don't need counselling, you need to be free of being a prisoner to someone else's problems

Catoo · 24/02/2024 08:35

deb45 · 24/02/2024 02:25

Thank you for all your support and advice. Even though it's a few years since I discovered him hiding his HIV status and I always think it's water under the bridge so to speak, these hospital visits do seem to open this old wound. Our relationship is far from healthy I know, in many ways, but am just trying to come out from under my shell and get help (maybe get angry as was suggested earlier on here!)

It’s not water under the bridge is it OP?
You’ve bitten this down for too long out of loyalty maybe? Wanting to be kind? But it won’t go away.

In my personal opinion he is using you, maybe quite unconsciously, as a shield. I think he has guilt and shame about being gay (maybe bi) and catching HIV (whether he should feel like this is immaterial). His way of trying to ‘put it right’ was to find a woman to settle down with to appear like any other ‘straight’ man.

You going to the appointments is part of that. He feels less judged sitting there with a wife, than as a single gay man who didn’t take precautions.

Take some time out to reflect OP. Is this the life for you? A man who always puts himself first. A man who enjoys sex with lots of men. Can he really have switched that part of himself off?

Willing to bet he hates it if you suggest condoms even if he’s skipped his meds. Or he avoids sex a lot of the time.

💐

deb45 · 24/02/2024 11:49

"feels less judged sitting there with a wife" I never thought of it like that and yes probably true as we are always the only couple I see there as it's all single men in the waiting room

OP posts:
WetBandits · 24/02/2024 12:01

Hi OP, I’m going to try and answer your actual question amid all the people telling you that you should leave him for not having told you that he was living with HIV. It doesn’t have to be a death sentence anymore, as you and your DH know full well!

Has your DH been offered any peer support? We have a very good peer support network at the clinic I work at, so there may be someone on hand who is living a similar life to your DH who might be willing to attend his appointments with him, it’s worth him asking his HIV team to see if there is a similar scheme in place for him. If not, the Terrence Higgins Trust has a peer support network.

The George House Trust link has a support service for families and partners of people living with HIV.

I fully appreciate the emotional toll of knowing and understanding that U=U but also the ‘what ifs’ that come with that, and the crossing your fingers every time he has bloods that his VL remains undetectable and that his CD4 count is good.

Your DH is very lucky to have a supportive partner and he needs to understand that it’s just as hard for you as it is for him.

SUPPORT FOR PARTNERS, FAMILY AND FRIENDS OF PEOPLE LIVING

https://ght.org.uk/support-partners-family-and-friends-people-living-hiv

WetBandits · 24/02/2024 12:04

Just to add, we have many, many serodiscordant couples within our service, lots have been together for decades and the other person has remained HIV negative. Some clients attend alone, some with their partners. You will always be talked about at his appointments, whether you are present or not, as we recognise that you are just as important as he is. Flowers

Betterbuckleupbarbara · 24/02/2024 12:10

@WetBandits You’re missing the point of the thread though.

He deliberately lied to OP and put her at risk but not taking his medication correctly, much else is irrelevant.

It’s also not OPs responsibility to manage his healthcare.

Catoo · 24/02/2024 12:26

Betterbuckleupbarbara · 24/02/2024 12:10

@WetBandits You’re missing the point of the thread though.

He deliberately lied to OP and put her at risk but not taking his medication correctly, much else is irrelevant.

It’s also not OPs responsibility to manage his healthcare.

Seconded

HIVpos · 24/02/2024 14:58

The point of a thread often turns into what people responding want it to be rather than what the OP is asking, and with assumptions often made.

It's clear that you’re both uncomfortable in going to the hospital where your husband receives his care and that you need support too - which is very relevant. As @WetBandits mentions this is something very much recognised by our clinics and increasingly being acknowledged by HIV charities, though funding can be difficult in offering this. Our (usually 6 monthly) appointment are not just about weight and height, bloods taken and meds picked up/delivered. It’s also very much about how we are getting on from a physical and mental perspective, any coping mechanisms we are using if we are struggling, our relationships and how best to support us and those close to us. This chat with our consultant or nurse and being able to ask questions can often take up the majority of the appointment and I hope that this is happening and he is engaging with it.

You mentioned that your husband didn’t take his meds correctly at one point through not wanting to go to the hospital over the pandemic – it’s not clear if he told you this at the time so you were aware of the potential for his viral load to become detectable. You’re aware from the Dr. that it didn’t rise sufficiently for it to be a risk to you if you were having unprotected sex. The studies done showing U=U were based on have a viral load of less than 200. The machine that measures mine goes to less than 20. If for whatever reason it were to rise a bit I still wouldn't be able to pass it on.

I previously mentioned PrEP as being an option which presumably your husband’s clinic would have discussed with you if they thought it was needed. It sounds like your husband is sharing the challenges he is facing with you but maybe not understanding of the challenges you are also facing. If you’re able you could discuss this with him and his consultant/nurse together and your concern that if you don’t go to his appointments with him he won’t go. Your husband should understand that ultimately he is responsible to his care and his clinic should be able to help if he is struggling with this – and you too.

Peer support can be a part of overall support. I’ve already mentioned Plushealth which has the benefit of supporting people affected by HIV too and is accessible from anywhere in the UK. GHT in Manchester is a fantastic charity and good to see they also have support in place for people affected by HIV - not just people living with the virus. THT as mentioned also has several services online and in person for your husband, and depending where you live there are others including for you. Happy to private message more details if you wish. It can be a very lonely experience in having or living with someone with HIV and not being able to talk about it with others who might understand what you’re going through. Sadly there are many serodiscordant couples who feel they cannot talk about it outside of the clinic.

I get what you mean about going to the clinic and it just being men in there, and it might be easy for some to assume they are all gay. As an older woman I’m ok with it, aware that hetero diagnoses are increasing more than in the gay population currently and found that my new clinic has more women there. About a third of people living with HIV in the UK are women (over 50% are worldwide) and they are getting their care somewhere! We can get our care where we choose. There were a few reasons I switched, one being my usually low blood pressure used to go right up every time it was taken there. I felt that I related the place with the traumatic experience I experienced when first diagnosed and swapping to somewhere else has helped. This is why I wondered if it is something your husband might consider doing and might help you too?

Hopefully in sharing some of this from my perspective and what I’ve found this might help you a little.

QueenBitch666 · 25/02/2024 01:03

I couldn't get past the deceit. Despicable behaviour from your dh.

LifeExperience · 25/02/2024 01:10

I would never be able to trust a man who would hide something so important from me. At it's core it demonstrates a complete lack of respect for you and your human right to make fully-informed decisions about sex and health. I would have to leave.

coffeeandcake91 · 20/03/2024 21:21

I’m sorry, I know this post is a month old but I couldn’t not post.

This man is dangerous to be with. He is dishonest and will put your life at risk. And you’re willingly staying with him.

I say this having read the entire thread.

He has lied about how he caught HIV, lied about his sexuality, lied about his status, made you feel guilty after you found out by chance, has cut back on taking his medication when he ‘feels low’ which puts you at risk, and becomes angry when he feels you don’t support him????!!!!!

Having HIV and taking medication to prevent transmission is one thing. The above is something entirely different.

You are putting your health and safety at risk by being with this man.

He doesn’t give a shit about you or your health. He doesn’t love you, because you would never treat someone you love and respect in this way OP.

To answer your original question, you are NOT being unreasonable to not want to go with him. But I think you already know that.

Venturini · 21/03/2024 10:15

deb45 · 23/02/2024 16:07

He's not said that as such but he has cut back on tablets in the past when he's been low on them

Whhhhhhhhhy are you married to this guys when he clearly doesn’t give a flying fuck about you and your health? I swear the bar is so low it is actually in hell.

Venturini · 21/03/2024 10:15

Ugh old post but the point remains.

Shitlord · 21/03/2024 10:27

It’s also very much about how we are getting on from a physical and mental perspective, any coping mechanisms we are using if we are struggling, our relationships and how best to support us and those close to us. This chat with our consultant or nurse and being able to ask questions can often take up the majority of the appointment

This is a history/ consultation. I respect your experience but please don't try to discredit the advice of others who are trained in and have worked in the sexual health and public health fields

HoppingPavlova · 21/03/2024 10:32

@Darkenergy Sorry but I don't agree with the level of disgust on here that he didn't tell you. If he knew it was untransmissable there's no more reason to disclose it than any other health condition. There's no risk to you. You could argue that in a serious relationship you should disclose any health issue but that doesn't matter warrant this kind of judgement

So, what about if it’s subsequently discovered that there was a manufacturing or quality issue with the medication and certain batches were not meeting shelf-life for efficacy, or there were issues and batches were not homogenous with some tablets being over potent and some under potent (and therefore not effective). You do realise that medicine are Recalled for these sorts of things right? And that such issues generally aren’t picked up until the affected batches are well and truly in use. Sure, the chance that it will happen with a batch he has been dispensed is very low but not impossible. Given the ramifications if this unlikely event doesn’t d occur, he has an OBLIGATION to disclose IF he is having sex with someone. Full stop.

HIVpos · 21/03/2024 12:58

Shitlord · 21/03/2024 10:27

It’s also very much about how we are getting on from a physical and mental perspective, any coping mechanisms we are using if we are struggling, our relationships and how best to support us and those close to us. This chat with our consultant or nurse and being able to ask questions can often take up the majority of the appointment

This is a history/ consultation. I respect your experience but please don't try to discredit the advice of others who are trained in and have worked in the sexual health and public health fields

I'm not sure in what way I'm discrediting the advice of others trained in the SH field? I very much respect and appreciate the support we get from our clinics, however sometimes the clinic where we seek support or the consultant we see might not be the right one for us and this is something acknowledged by the consultants themselves. As well as supporting others with HIV I'm also involved in projects with these HCPs in further training and giving the patient perspective, as well as attending conferences. It's recognised that our voices are all equal.