AIBU to feel angry husband downplayed rare condition and life expectancy?

[Anonymous1899]

He got diagnosed with a very rare medical condition when he was a baby. He had to have surgeries because of this when he was a kid. On the outside he seems perfectly fine and you couldn't tell her has anything 'wrong' with him. But apparently his medical condition reduces his life expectancy in the long term. People with this condition have survived only in to their 40s and 50s
Medical intervention for this procedure is quite new and only started in the 80s so there are no statistics or data on people who have live longer than 40-50 years old.

When we got married my husband did tell me the name of the medical condition, he did tell me about his surgeries and he seems absolutely fine on a day to day basis. Whenever we have talked about it, he says 'I'll be fine'

I did google his condition in the past and while it did seem life threatening, seeing as my husband looks 'fine' on the outside I didn't really dwell on it

However what threw me off is that he got refused life insurance in the country we live in when trying to purchase a house, as the insurers basically don't believe he will life for another 30 years (we are in our early 30s)

I did more research on his condition and found out that the surgeries he had are only 'palliative' and not a cure. Meaning that his condition will most likely worsen with age. The more I read about it, the more I realize this condition is worse than I thought and I don't think my husband shared enough with me on this

He's the one diagnosed with it, he's the one who's been through the surgeries and had all the medical appointments, he should have known more about his condition right? Should he not have told me that he might have a reduced life expectancy before we got married and emphasized on this point so that I can make an informed decision about my future??

We have kids now and im so angry at him for putting my kids and my future in danger. Is this selfish of him? Or am I over reacting.

I do agree that no one really knows what the outcome looks like for people with this condition. It's more like a 'wait and watch' situation but shouldn't he have told me more about all of this?

When we have talked about this in the past he did genuinely seem lost about the medical jargon of his condition as was I.

However, when the insurers refused him life insurance, he asked me ' do you feel like I haven't told you enough about my condition before we got married?'
I said yes and he said its because he thinks he was in denial about his condition.

Do you think he was consciously witholding information from me? I feel fooled.

I know this health condition is not his fault and doctors can't predict what the future would look like, no one knows etc. but why couldn't he have told me exactly that instead of keep on saying that 'he'll be fine'? For me that is minimizing it.

How would telling you he didn't know what the future holds be any better? You have no evidence and nor does he that he won't be fine? For all you know he will be fine and everything you've said so far about the progress in treatment in such a short time does indeed suggests he will live a long happy life.

Well if he told you the name of condition and you researched it then why not?

I'll ask again @Anonymous1899 When did your dh last have any medical involvement? Was it as a baby/child?

How do you know who told him about his condition and what was actually said?

It's been deleted after I reported it

Nope. It’s still there in the conversation history.

Think you are looking at another one

Why didn't you know?

A friend of mine has a very rare life limiting illness. There is limited info out there as it is so rare but I have googled and googled and googled. I know everything about it. I have read research papers, I have joined a tiny global info sharing group. I have done absolutely everything in my power to understand what she is going through now, what she will go through in the future what treatments there are, what trials there are to find a cure and what I can do to help. All of that and she's just a friend. I'm not marrying her or having kids with her or setting up mortgages and life insurance with her. The impact of her illness on me does not come close to the impact of your husband's illness on you. And yet you appear to have done nothing. I just cannot get my head around you not even doing a basic Google search.

Nope. The post you said you were going to report from 14:00 is still there. The one you posted at 14:10 however, has been deleted...

You both knew that he was one of the first beneficiaries of a pioneering treatment, for a condition which had previously been 100% fatal within days of birth. How could he possibly know the effect on his life expectancy, if all the other patients were still alive? It was obvious that he had no basis to say 'I'll be fine'. So why did you believe him?

You wanted to believe him because you were in love. And now, for some reason, you want to be angry with him. You have to let it go, surely?

So you're really angry that he's not been fully open with you about other stuff, it's not just this. This is about how he approaches telling you stuff that affects you, it's not about the medical condition really.

The one you said you reported for the use of bad language is still there. Your own post previous to that at 14.10 has been deleted. MN don’t delete for the use of bad language. They do delete for getting personal - deliberately insulting or aggressive language which can be interpreted as a personal attack on another poster.

We’re all going to die. He told you about the condition. He must have been living in denial if he applied for 30 years of insurance. How does anyone live with this hanging over them?

I think this is the crux of the matter. It’s clear that OP isn’t angry about the health condition itself as she was aware of it. I think the problem is that up to the point where his life insurance was refused she had allowed herself to be reassured by his minimisation of his condition. The refusal set alarm bells ringing and prompted OP to research it in more detail and with that has come the realisation of the extent to which he’s minimised, and a potential pattern of behaviour.

The OP is clearly angry but hasn't given any clear, objective information in any of her posts to warrant this being a 'pattern of behaviour '.

The only information we have, is that her future dh was 'dishonest' about something early in her relationship and that she forgave him.

The issue with his health is completely different. He told her the condition he has. He told her he might have been in denial but OP is refusing to accept this despite reacting in exactly the same way herself! She is determined to be angry. She is determined to apportion blame.

Counselling has been suggested throughout the thread so can she can unpick what it is that she is so angry about. Because her reaction to the health scenario as described in her multiple posts is considered unreasonable by the majority on this thread.

OP had just as much responsibility to understand her dh's condition before having children as he had. And rejection by life insurance is no evidence at all that he is likely to die prematurely.

So babies born prior to the surgery becoming available died immediately but now that the surgery is available, they're all living normal lives. Is your only evidence that it could be life-limiting the fact that nobody has lived long enough to prove otherwise? Or are there known, documented, long-term health impacts?

@HoskinsChoice what a truly wonderful friend you are (I mean that genuinely)

It sounds like he didn’t really know that much about it though to be fair OP.
You said even the hospital and consultants don’t really know much.
How rare is the condition?
Like one in thousands? Millions?

I understand the lack of information part as my child has a rare condition although not life limiting like your husband’s it’s 1 in 50,000 but there are a few resources about it online.
Im a very curious person and research everything so I won’t stop until I’ve found information, is it that rare there’s not one resource online?

I think it’s partly he’s buried his head in the sand/is in denial and he’s actually not been given viable information himself.

Whilst it's lovely of you to say this, I don't agree. I don't see me doing a bit of research into a loved one's illness as being wonderful. I see it as bog standard human behaviour. Which is why I'm so baffled by the OP's lack of interest/attention in/to her husband's illness.

I imagine this is a really difficult process of discovery for you and while some might think it's selfish of you to be looking only at the money side of things, I wonder if you are doing that because it's an emotionally safer starting point.

If this is so, I would really think this all through and give it a lot of time before confronting your DH over this as this is all so unfair on him too. And he may live well into old age, none of us know when our time is to come even those of us with excellent health.

Work through the logistics of all this, but don't let it destroy what you have because what you have is precious and we all only really have now.

Chat gpt only pulls together information it finds online, the information itself will still have been available. It mainly sounds like you were both young and 40/50 doesn't sound that young when you're 20. My mum died at 56 of congenital heart disease that worsens and wasnt picked up until she was 50. My siblings and I all have it in our 30s and 40s and are being watched for progression. 56 is young of course it is but even at 30 as I was when she died it didn't seem SO young. It does now at 43. However my mum had a lot of exacerbating factors and we've been told we could live decades longer than she did.

You're angry at the fear and loss of the control we All think we have and at facing his mortality as much as you're angry at him.

This.
If it is something like left hypoplastic heart syndrome, there really isn't any evidence he is likely to die in middle age at all, OP is just surmising.
The evidence is: they used to die at birth, now they don't.
Nobody knows if they will live normal life expectancies or not.
Insurance turning them down means very little, as others have said.

I know that he's the one with the condition but he should have been the one to explain that that would mean for me or my kids down the line.

You just said he didn't know. Even his medical team didn't know because there is very little data. He told you what he did know. He told you the name of the condition, what surgery he'd had. You did the research on it and as you said, there was very little information available. How should he have known more than you did? He had the same info as you. Very little.

I get that you're scared but you're not coming across well here.

HLHS doesn't quite fit the OP's description, because it's not that rare, lots of information has been available about it for decades, and the oldest patients are still only about forty. Patients with HLHS are monitored in case they need a pacemaker/anti-clotting medication/a transplant, and OP would surely have been aware of that. It must be something rarer.

Yes, I agree. That's why I said "something like" that.
It does sound like there isn't enough information but there certainly isn't information that he will die in middle age.

Agreed. There's a lot of misunderstanding on the thread about the significance of the fact that there are no survivors over fifty. It doesn't mean a life expectancy of fifty, because those fifty year-olds are still alive.