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 am experiencing sadness. Ofc I am. This post is not about that though ...it's about trying to figure out if the anger I'm also feeling is justified or not.

Why would you assume that ? Do you not think that OP is entitled to take time out to be angry for the position he has potentially left her in ? She will be the one left behind, potentially with children to look after and a mortgage to pay with no insurance to compensate. She has reason to be angry. I’m flabbergasted that so many posters think OP should take any responsibility for researching his condition when he couldn’t be arsed to do it himself. Where is his responsibility in all of this ?

I didn't know there was no cure

But if he wasn't having active treatment for it, why would you think there was?

I'm sorry op, I have the greatest sympathy for the shock and sadness you're experiencing, but I believe your anger is misplaced.

No one knows how long they will live for Stephen Hawkins massively outlined his expected lifespan for eg. And parents have to bury their children. He's done nothing wrong.

Yes OP. The anger you feel is justified and it’s fine for it to be separate from the sadness you feel at the situation you’re both in.

For whatever reason he wasn’t upfront about the severity of his illness and minimised it. Did he continue to minimise it after you told him what you had found from googling ? If so then it’s understandable that you put it to the back of your mind if he convinced you that the google information was worst case scenario and didn’t apply to him - that’s often the case.

I also think that the fact that he’s been refused life insurance shouldn’t be taken as evidence that he’s facing an early death - insurers will often use that worse case scenario to justify a refusal. If he declared the health condition when applying why did they not ask for a medical examination before an outright refusal ?

If I were you I wouldn’t rely any further on the information you’ve found on Google. I was diagnosed with cancer last year and my consultant gave me a list of reliable and accredited research websites where I could find out more information and he warned me against general googling because medical information on the internet is notoriously inaccurate and often presents information not relevant to the person doing the googling.

I think the way forward for you both now is to make an appointment with your GP and ask for a referral to a specialist. Your plans for the future will need to change and be based on accurate information straight from the horses’ mouth so to speak - based on your husbands’ condition, the severity of it and the likely prognosis specific to him and not a generalisation from the internet. Then you can plan properly for what comes next.

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.

It's not clear from your posts (and possibly you are unsure) whether the issue facing your husband is:

a. Historically before surgery people with this condition always died in their 40s and 50s. Those who had the surgery are now all in their 40s and younger and going strong but no one knows what their new life expectancy will be.

b. Even with the surgery that started in the 1980s everyone with the condition is dying in their 40s or 50s.

Those are two really different things.

It sounds more like you're talking about it being the first situation, which is a lot more optimistic and means the future is very uncertain rather than worst case scenario. So I'm not sure what else your husband was supposed to tell you.

How can you possibly say he’s done nothing wrong ? He hasn’t taken responsibility for his own health condition. While he was single he could bury his head in the sand and not want to know the full extent and he could minimise it all he wanted - he was the only one affected. The minute he asked OP to marry him all of that changed - probably even before that, when he knew the relationship was serious. It was his responsibility to make sure he knew as far as possible the likely prognosis, and to make OP fully aware of the ramifications so that she could make an informed decision.

The fact that the majority of us have no idea how long we will live doesn’t apply here. He had information that his lifespan could potentially be significantly affected and he chose to minimise it. That’s on him, not OP.

OP, I think you are being unfair.

He hasn’t ‘put you in danger’. He didn’t make himself ill. He just is.
He doesn’t know how long he will live, like the rest of us.
He didn’t want to talk about it, because talking about a life-limiting condition is hard and scary.

I think it would have been better if he had been able to discuss it more earlier on, but he didn’t hide it from you. You could have gone and found out more if you had wanted to.

Being angry now is unfair and not helpful. Try to focus on finding out current expectations and moving forward on that basis.

How is OP trapped by her partner when she said she would have married and had kids with him anyway even if she had known what she knows now?

She said she would still have married him, but questioned whether she would still have had kids.

Yes he should have been transparent with you, certainly when you started talking about having a family. He clearly understands that he’s withheld information because he’s asked you if he should have told you more.

Stephen Hawking had a worth of $20m when he died, hardly the same thing.

What’s that got to do with him outliving the life expectancy associated with his condition?! You can’t pay to live longer

I’m a bit confused at some of the comments. No one should be piling on anyone anyway.
But to me it sounds like your husband told you about his condition and that it may shorten his life expectancy. But that he, his family members, medical professions AND even specialists do not have much information on the condition. What do you think he should have done? If it were me I would have researched and researched anyway. I have been in a similar position previously.
Of course if he deliberately misled you or lied to you then you have a right to be angry but I’m not sure he did that (from what you’ve said).
Can you say what sort of disease it is? Someone may have experience

He didn’t lie!

He told her exactly what his condition was, and what treatment he had. She was able to see for herself that it was life threatening. As she herself says, no one knows what the life expectancy is for people who had the surgeries. How was her husband supposed to know?

In fact, the situation is no different from what she has always known it to be, with a lot of uncertainty but hopeful for good outcomes.

But you never thought to ask what the cure was? And when he was going to have whatever procedure or medication needed for the cure?

Because they cant buy a house or get life insurance for him.

But what more does OP know now than before and what did her DH know? If OP chose to have kids whilst knowing DH’s was life limiting then she knew she would be in a situation where she had kids who lost their father younger than the average age.

It being hereditary or not is a bit of a red herring because OP’s kids are fine and hearing. But if OP chose to have kids without ever once asking or researching if the condition could be passed down and the changes of that then she must take some responsibility for that because that’s just a normal consideration when family planning to think through things like that and discuss them.

OP has never said her husband knew and/or hid the hereditary nature of the condition so I just don’t really see how things would be different.

Advances in technology have brought greater clarity on the condition but there’s no deception here on the part of her DH unless he knew and deliberately withheld the life limiting and hereditary nature of his condition which he didn’t and, even if he did on the hereditary side, that hasn’t affected the children anyway because they’ve avoided it.

There is no condition SO rare that it doesn’t say online whether it’s curable, or has been cured.

And OP, your excuse for suddenly finding all this info is that ChatGPT didn’t exist 2-3 years ago. Bad news: I mean, the basics are that ChatGPT did exist that “long” ago, and ChatGPT is based on sources that already are 2+ years old online, which means the information was ALREADY online for OP to find. As someone with an incredibly rare combination of diseases (odds are 1 in a billion), there’s still a paper showing at least one person had it besides me and their outcome. So no, I refuse to believe this information wasn’t available two years ago. ChatGPT doesn’t just pull info out of its own arse. Now, if OP was in denial and didn’t want to know and just blindly listened to her husband, that’s a whole different kettle of fish; we all do things that aren’t in our long-term best interests when we feel afraid or overwhelmed.

That said, OP, if you really need research, like someone to read or help you with medical papers about it so you feel informed and more in control, NOT by AI, please let me know and I’ll help you find some stuff. For the record, one of my conditions was a death sentence before the 1950s. Medicine learns and it changes, often for the better.

Also, if this condition isn’t hereditary, then your husband has been incredibly unlucky. I would imagine you’re going to discover it is linked to genetics (a lot of the rare conditions are), but maybe not a straight pattern of inheritance.

Some people could do with a little compassion but why bother when you can kick someone who's already down.

I think there has been some misunderstanding.

You can get a mortgage without a life insurance.

OP also rightly wants to be able to insure themselves.

My friend lost her husband suddenly and had a huge mortgage. She would have been in a terrible situation if they didn’t have life insurance. The life insurance covered the mortgage.

Again, why are you putting the onus on OP finding this out online when her life partner should have TOLD her pre-marriage and kids?

But he told her what he knew.

The OP has clearly said even the consultants don't know any more than her / him so what the heck more can he do?