Support for HIV partner

[deb45]

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?

@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.

Untransmissible if he reliably and continuously takes his meds. I would want to know if a partner needed meds to stop them transmitting HIV to me, so that I could make an informed decision about whether I felt able to live my life based on trusting them to continue to do so correctly. I'm unsure why that seems to be a shocking boundary to you?

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 if you don't comply with what he wants, he will refuse treatment and then what? Will he blame you for his refusing treatment and his health declining? Has he refused treatment to control your actions previously?

Did I wake up in the 1980's?

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

That sounds very close to emotional blackmail to me. I completely agree with Lemsipper, what a shitty way to behave.

Not sure who you're confusing me with but just to clarify we've not had children together

I know right, my exact thoughts, how can so many people be so proudly and openly ignorant.

What's he said to suggest he will stop taking his medication?

I would not currently consider this man's HIV under control or him safe to have sex with if he is threatening to stop taking his medication. It sounds like a method of control.

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

@deb45 another poster stated they remember you posting through your pregnancies and I read it like you were conceiving not knowing his status, so now assume I misread that. My fault for reading too fast.

He lied to you, and you still married him, which shows you are vulnerable can be manipulated by him which has lead to this. He's very lucky you stuck by him, but given he lied, he has no right to get angry at you. He made decisions leading to him catching it, so he should deal with it, he lied so he should be understanding of why, for you, going would bring back that he lied.
Did he tell you about the circumstances of how he came to catch it, or has he kept that hidden too?
I think the level of distress this is giving you shows that on a deep level, you know it was a bad idea to continue to marry and have a relationship with someone capable of that big a lie. Chances are, if he's the sort to do that, he's going to be easily capable of other lies too, so it doesn't reflect well in a general sense to his character, and the anger shows up his character too - or lack of.
Tell him exactly why it gives you anxiety, and if he still has no empathy, just for your own peace of mind, refuse to go.
I hope, that he could stop taking his meds as a 'punishment' to you is just in your head, but if he dangles this as leverage to get you to go, then he is clearly a very manipulative man and you should leave asap - it should give you the ick ( not the him, his behaviour).

' not the HIV' his behaviour

I work in HIV care and I think you are feeling quite reasonable about this. Having a partner who is living with a long term condition can be difficult. It's an extra layer of worry and responsibility, never mind on top of it, that in your case, there was dishonesty in your early relationship that this all brings up again.

I think it's perfectly okay to not want to go to his clinic appointments with him. I would say nowadays it would be quite unusual for a partner to attend for a routine appointment, except maybe in the quite early days after diagnosis, if they needed some support themselves or in understanding U=U and viral suppression or around TTC, pregnancy, etc. I have a long-term condition (not HIV, but one I have to take daily meds for and for life) and honestly, even really early on pre-diagnosis, when they actually thought it might be cancer, I've never brought my partner along. It's my responsibility to manage my health. It's not nice to go to the hospital or go for tests, etc. but it's just life when you have a condition that needs lifelong care.

I would expect dh to support me in lots of ways - like taking over at home on a day I feel ill, bringing me whatever if I had to be in hospital for any reason, being understanding that I can't eat or drink certain things, making sure I have the time I need to take care of myself and stay well - like time for exercise and other self care. But he's not my parent. He doesn't need to chaperone me. I could ask and he could offer, but ultimately, it's not his responsibility to attend my appts as long as I have capacity to make medical decisions for myself.

I think it's okay to say no to attending and I think it's okay to offer to support in other ways, but your dh needs to accept his own diagnosis and take on the full responsibility for managing it and handling his own emotions about it. If you are concerned that he may stop taking his meds to manipulate you, then you shouldn't be having sex with him, certainly not unprotected, if you don't feel confident that he is treatment adherent.

That said, one reason you may want to attend with him is to talk to his HCP about your concerns and ask if there is any support for the two of you as a couple. If he is struggling, there is often an in-house psychologist or a peer supporter who he can be referred to for extra support.

I fell in love with who I thought he was and still love him despite the lies and the way he went about deceiving me. He even lied and told me he caught it off a girl without telling me he was sleeping with lots of men at the time so statistically I know what's more likely but it's not something we discuss anymore as I don't believe him and again too painful to dredge it all up.

He has already shown you that he is OK with increasing the risk of passing it on to you, rather that keeping his stock of meds up, by taking less 😮This is really bad, a seriously bad sign, he is not a good man in any sense and really not to be trusted. I'm not surprised you get in a state and are fearful. He's using his condition to control you. He's even telling you that he risks your health. He's setting you up to feel like this so you do what he wants. It's shocking behaviour, and for that, you should of left him already and I hope you find your anger eventually and do so.

Oh my god this gets Worse and WORSE as you write more @deb45 .

OMG! Lying about being bi or gay too. Just what on earth are you doing? Love has made you blind to everything. I hope you open your eyes soon.
Love is not about forgiving all you know about someone. Get yourself some counselling because your level of forgiveness is dangerously off the charts! Has he even been faithful in your relationship that you know of?

He cuts back on his meds when he is low?

Does he care about your safety at all?

Yes he did during Covid when he couldn't face going in but eventually got some posted out to him, was taking one every three days rather than daily :(

Yes he did during Covid when he couldn't face going in but eventually got some posted out to him, was taking one every three days rather than daily :(

What is the health implication of him doing this?

Does it mean you wouldn't be adequately safeguarded if you were to have sex?

Luckily his viral load didn't go up enough for him to be infectious but his doctor did say it could potentially have done so I/he was just lucky

Luckily his viral load didn't go up enough for him to be infectious but his doctor did say it could potentially have done so I/he was just lucky

This would be unforgivable for me. He's knowingly put your health at risk despite you already forgiving him for being dishonest repeatedly in the past.

Do you have kids even if not with him?

You need to ask yourself whether you want to be with someone for the rest of your life when they have proven themselves to be untrustworthy on a number of fronts over the years.

I can't believe people are trying to make this about posters being bigoted again HIV sufferers. Trust me, no.

This man's behaviour is what makes him dangerous.

If he was honest and took his medication reliably without event that would be one thing but he doesn't.

He has lied from the start and shown patterns of putting the OP at risk.

Plenty of people have HIV, manage it and their relationships just fine.

He is not one of them.

It's a shame a stigma exists still, yes. But that doesn't mean it is a trivial condition the OP should risk catching. Posters shouldn't not point out his outrageous control tactics and selfishness so as to be kind.

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.

It’s a difficult one controlled and untrabnsmittable the risk is minimal

but you should be told the thing is when
it’s a big thing to drop into a new relationship and then when is the right time by the time you realise it’s the right time you’ve left it too long and it’s too late

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.