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.

Yet somehow you’re mad at your DH for not knowing something his doctors don’t even know about his health such is the rarity and ambiguity of his condition?

YABVU!

but he should have been the one to explain that that would mean

What information do you think he was withholding? Nobody knows the life expectancy of his cohort (ie children born after the treatment became available), and that includes him. He hid nothing.

I only recently found more information on this condition chatgpt.

Chatgpt didn't exist 2-3 years ago..

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. He probably didn't want to because he was in denial or didn't want me to leave. I wouldn't have left but I would have wanted to know more about what I was getting myself into.

How was he supposed to know what you would want you know? He opened the discussion and told you his condition. The ball was then in your court.

You seem to be feeling that he is guilty of entrapment. But unless he actively lied to you in discussion then that's not reasonable.

He should have said he doesnt know how long he will live and should have been clear about that. Especially before we had kids

But did you actually ask him? He won't or can't answer questions you didn't pose, particularly if he is denial. You had agency in this too.

I'm sorry for you both - it's a shit situation - but being angry here is BU.

If you’d have stayed anyway and you know now, what difference would it have made? You’d have married him and had his kids if he told you all the details anyway so what exactly has he fooled you into doing that you wouldn’t have done with the full picture?

Why do you keep referring to them as "my kids" and not "our kids"? They're his kids too.

He probably thought that having given you the information that he had this condition, you'd be able join whatever dots you wanted about what it meant for you down the line.

I heartily agree with this. Who, on discovering that their young child has a serious condition, sits them down and gives them the whole gloomy story? Even when there's no medical condition in the mix at all and children directly ask about death and if/when they will die, we would all invariably stress that they will most probably be very, very, very old, after living a wonderful, amazing long life; nobody is going to start talking to a young child about the many people who do die tragically young for various reasons, and give them the statistics as to why they too may be one of them.

We would all emphasise the positives - to them and to ourselves - as well as hoping that medical advances over the coming years might dramatically change their outlook. And if you've always done that from when they're young, and brought them up to appreciate and celebrate the life that they have, when exactly do you decide that they've had that peace for long enough and now it's time to cast a huge dark shadow over the rest of their life?

I understand u worry that ur kids will grow up without their dad, thats understandable, but what if he got cancer ... or got hit by a bus? Harsh but true ..

You keep saying there’s not a lot about his condition online, if there’s nothing , what else do you want him to tell you. He’s not sure if he’ll be here in 30 years time because it’s like he’s the statistics, all he can do is hope for the best.
He told you the name of the condition and you checked online and saw what you can see which is what he knows too. He wouldn’t know he can’t get life insurance as he wouldn’t have tried to get one as a child so nothing he can tell you.
You keep trying to make this about you but he’s the one with the life limiting illness, etc so he’s just as affected.
The reality is no one is guaranteed tomorrow, someone else might be born healthy and die of cancer at 30, we all live our lives best based on what we know now.

You are being completely unreasonable. He told you his condition, you researched it and then married/had children.

sounds like you have BOTH buried your head in the sand. This is completely as much on you as him but you are blaming him now he can’t get insurance.

She did know. She googled it. She read the info and decided not to dwell on it. And yet here she is…

He should have said he doesnt know how long he will live

You mean he's in exactly the same boat as the rest of us? We all have risk factors, known and unknown. Why give disproportionate weight to this factor, which, whilst known, is of unknown magnitude?

Sorry I did t realize no insurance meant no health insurance in England as it's not like that in my country. He probably should have been more upfront with you.

That said, ai isn't a good source, it gets a lot of things wrong.

You knew his condition was life-threatening, but you chose to ignore this until it came to a head with life insurance. You are being completely unreasonable, but that's normal when you're in the second stage of grief. Try to get to the fifth ASAP.

When I met my husband I was 23, he was 27. He had a medical condition and was told he might not live through his 30’s. We went ahead and got married, I decided whatever happened I loved him and would settle for any time with him.

He’s now almost 72.

If you loved him and wanted to marry him, that’s the most important thing. Your partner may have been in denial, may have been withholding deliberately - who knows? But my husband has absolutely no memory of being told about the 30s thing. Sometimes we just block things out unconsciously.

And who knows how long that will take or cost. The OP doesn't mention him having access to a specialist doctor or regular appointments regarding this.
Using AI is something she can do immediately to try and give her a fuller picture of what she's dealing with. What is your actual concern about using AI to get information and to put the medical literature she's trying to interpret into something she can actually understand?

Your husband disclosed his condition and that he had surgeries as a child. It's something that's the norm to him.

You could have researched it deeper but you chose not to, even when planning to have kids. You're not the victim here. I think your anger is unwarranted and misplaced. You act like he's hidden something from you when he hasn't done that at all.

No life comes with guarantees.

That said, I wouldn't be doing medical research on a rare disorder through ChatGPT.

If you truly loved him you would have married him anyway.
sounds like no one is precisely sure what life expectancy for your husband may have.
I would see a solicitor and have all of the forward planning done in case the worse happens and he does die at an earlier than average age, and also plan financially for this possibility.

Fucking hell 🙄

Tough one - he has condemned you to a lonely old age and the kids to losing their father early (and their kids will never have a grandfather), but on the other hand it really sucks for him, and he is the poor sod who has to live with the condition. If you really loved each other when you met, wouldn’t you have got married anyway? I guess he didn’t say anything in case it put you off, and tbh I can understand his thinking - he might have had to spend his entire life alone if he had been totally up front about it with you or anyone else. So maybe the best thing to do is love each other and enjoy each other’s company while you both have each other, rather than letting something from the past that neither of you can do anything about, spoil what time you have left together.

To be fair he has known all along that he may not see his children grow into adults. The whole point of the OP is that she has only just found out.

The OP is in shock. It appears that she still cares for his husband. There is no where she says she is going to kick him to the kerb. She is upset that her life partner may not be with her into retirement. It sounds like a rare disorder based on her only just finding things out now.

Yes, I read an article recently that made the very good point that our lives are all marked by two significant dates - the one we are born on and the one we die on. But we only ever know one of those two dates ourselves. My dad was born on 15th May and died on Armistice Day, and it would certainly have made Armistice Day feel a bit different all those years while he was still alive, if we had known we were commemorating his death as well as those of all the soldiers who died.

Is the condition hereditary? If he wasn't explicit about life expectancy and it being passed on to future children, then I think I understand your concern over how he managed things. I'm glad your children are fine.