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.

This.

Also if its congenital things change over the years with advancements in treatment. Has he seen a specialist recently. With congenital heart disease for example things are changing and what was said 30 years ago doesn't always apply now.

The internet has been easily accessible for at least 25 years. I can't believe you didnt google it! Certainly before you had xhildren with him!
You say your dh had treatment for this as a very young child, do you really think he was told, or would have taken in at the time how much it would shorten his life? It is possible he didn't really know, any more about it than you

She did but she disregarded what she read becasue he 'looked ok' and he said 'he'd be fine.'

Of course he wasn’t. Because nobody has ever heard of it.

Oh no, independently seek out information as a woman in order to make an informed decision that might affect your future! Surely not!

I agree with this. This thread has been eye-opening.

Besides, no one knows how much time we have. OP could end up dying before him.

Why would you want an unqualified person to tell you...you would go to a medical to get correct info. OP has known about this since before marriage. And never even got professional advice before conceiving

I know, unbelievable she didn't take professional advice on it

What an insensitive, awful thing to say, don’t you dare presume to know me. I have lost family menbers due to terminal illness and I have first hand experience how it affects those left behind, which is why I’m here to support OP from a pile on from people like you.

OP is in turmoil and she doesn’t need the added pain of you.

If a man was complaining that he'd been deceived and coerced by his selfish wife who had a medical condition but hadn't presented him with a full life expectancy report before they married, I would call him a cunt, either to his face or in a thread. And if it wasa thread on MN I wouldn't be alone - he'd be torn to shreds (and quite rightly so).

Not really sure what bearing gender has on this situation at all. Unless... there is an unspoken implication that the OP is failing to be a "provider" in the traditional male sense? I don't have any sympathy for that - men having to be providers and protectors is bullshit nonsense.

For someone who typed the words below - which actually made me gasp, they're probably the worst things posted in this thread amid stiff competition - you have an awful lot of nerve taking offence at being called insensitive:

OP, you’re saddled with a man you can’t buy a house with or get life insurance with so he can at least provide his children with security should he die.
I can see why you’re angry, he tricked you into marriage and kids to get a carer for life.

Saddled? Tricked? No, sorry, you don't get to play the delicate flower here.

Where do you draw the line though? Should women also put private detectives on to fiancés to make sure they’re not cheats before marrying them?

You're effectively saying that OP’s husband didn’t owe her honesty, which is a slippery slope.

You have delusions of grandeur if you think you have any bearing on what I say here.

Sorry you didn’t get to pile on to the OP, better luck bullying a woman on the next thread.

Totally agree
..these comments were nasty and agree worst on the thread

Nope..your previous comments were so nasty. You should b ashamed

Actually some of the worst comments on this thread are from you piling on to the OP.

OP told you her husband never framed the illness as 'life limiting' and you pipe up with 'The OP was aware before marriage it was life threatening.'

No idea who you think you are that you can tell OP about her own life, but it's extremely nasty and you need to stop.

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Snowyowl99 · Today 07:51

Anonymous1899 · Today 07:37
He never framed it as 'life limiting'

Show quote history
The OP was aware before marriage it was life threatening.

Well said.

no one know what could happen to people with this kind of condition. Even the doctor who operated on him doesn't know.

If this is true, that means that everyone in his treatment cohort has survived to date without relapse.

He doesn't have a reduced life expectancy. He has an unknown life expectancy. His parents could have sat him down at eighteen and said 'people who've had your treatment have so far survived into their twenties'. Today, you know that survival extends into the forties. His personal ten year horizon will continue moving until, eventually, the whole ten-year sub-cohort will have - quite possibly - died of other causes. He could be in his nineties by then. Then you'll know.

But for now, nobody knows. So I really don't understand your problem.

Is he being monitored? Has his doctor reported relapses in other survivors of the same treatment? That would be new information.

Thats not true, he told her it was a condition that would give him l'ess time' she knew he had had various operations and that there was no cure. There was no talk about becoming grandparents or old together... she googled his condition, knew that it was something he could die younger from.

Honestly I find your reaction rather odd. In your posts no where is there sadness that you may lose your husband early , your focus 100% seems to be anger that he didn't research it enough and tell you about it.
I can only assume that your marriage isn't a particularly happy one anyway?

So SHE disregarded it just as much as he was un denial then 🤷‍♀️ shes as mych to blame.

All this has risen because he can't get life insurance because of his condition. There are many many people out there who cant get life insurance (my husband cant due to kidney diease, my son in law due to same condition) they look 'ok' too but still have the diease and one day, if they dont die from something else, will die from this.

What people on here cant understand is that

1. he told her he had it
2. She accepted he had it
3. she knew he had had numerous operations for it
4. she knew it was rare
5. she googled it and read up about it
6. only now has she come to realise how serious it is because he cant get life insurance
7. after being married for some years and having children, now shes pissed off because she has only just realised how serious his condition is
8. SHE is being VERY unreasonable.
9. in sickness & in health
10. last one for measurements- u can still get a mortgage without life insurance. My husband did and 25 years later its paid off and he's still here, with stage 4 kidney diease!

I think this is what it comes down to in the end. He knew he had a life limiting condition and didn’t bother finding out exactly how it would affect him as time went on, whether it was genetic and what the average life span is of someone with the condition.

This is something that should have been talked about and investigated before they married and had children - and Google is not the way to do it. A GP consultation with a referral to a specialist so that they could both have proper information on which to base life decisions, instead of relying on internet information which generalises and in many cases will present worse case scenarios which are not relevant to specific individuals.

No one here knows exactly how he presented this condition to OP or what information she found on googling the first time round - evidently it wasn’t enough to set alarm bells ringing - especially if he was continuing to play it down. Clearly the alarm only sounded loud and clear when he was refused the life insurance, and now it’s come home to OP that they both should have been a lot more concerned than they were.

Maybe OP should have paid a bit more attention and investigated further before having children, but that in no way absolves this man of his responsibilities. He is the one with the life limiting condition. He is the one who chose not to take responsibility for it, and he is the one who wasn’t honest with OP. Posters are telling her she should have sought professional advice. How ? No GP or specialist is going to discuss someone elses’ medical history without their consent, and we don’t know that she has it. And why is it her responsibility to take charge of his health condition.

Interesting that nothing in your post mentions that he should have taken responsibility for his own condition. OP has already said he told her he had it, and told her he had childhood surgeries to address it - also that he didn’t present it as a life limiting condition and played it down. We don’t know what kind of information came up when OP googled first time round - internet medical information is notoriously unreliable and often presents worse case scenarios which may or may not be relevant.

I agree that OP should have paid more attention and investigated more but quite how she would do this if he wasn’t on board with it I have no idea, because no GP or specialist is going to discuss someone elses’ medical history without their express consent.

In sickness and in health is a two way street. If you’re not upfront about a condition that will possibly leave your future kids fatherless and your wife a widow before her time, then you’re not keeping up your end of the bargain - why would you expect your partner to keep up theirs ? And whether or not life insurance is important depends very much on your perspective. If you’re the one who’s likely to be left behind with children to look after and a mortgage to pay, then I would imagine that yes, it’s very important.