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.

And you waited until now to research his condition...

Well how much did he tell you when you first met/got serious? Or did he not mention it at all until you were married?

That's a massive relief. I would also have been totally pissed off not knowing before having kids.
However, not much you can do now, just count your blessings and carry on.

Well, my husband has a congenital heart disease, he was operated on as a kid and again at 21. That part is fine. Now the other valve is failing. He is 52. We didn´t have any idea this would play out like this. Each case is unique. For him it has always been his normal. It sucks? yeah mate. But this is life. Nothing is assured. My dad was the picture of health, a sportsman, he was as dead as a dodo at 56 when I was 15 and my brother 12. Shit happens.
After his final op at 21 years old my husband was told "live a normal life, do normal things". And he has taken it to heart (pun not intended).
I think you would be well advised to access therapy in order to process this anger/fear.

Apologies, I phrased that badly - I meant that she's angry that he can't get insurance, but of course that is basically because the insurance companies have decided that he isn't worth a gamble.

Obviously they just look at spreadsheets and crunch the numbers and statistics as to whether they believe a stranger will likely make them a profit or not; they aren't assessing whether or not they want to marry somebody whom they apparently love.

Its mind blowing that you didn't research this when your DH told you the condition he had. I can't even imagine a scenario where my husband, or even a man I'd just started dating, told me he had a serious condition and I didn't find out as much as possible about it. Information is literally at your fingertips now. Do you even know if this condition is hereditary? Are you just assuming your children are healthy because theyre not yet showing symptoms? Could they be carriers of a gene which could then be passed to their children? You both need to pull your heads out of the sand.

Hes in the wrong, of course. He told OP he had a potentially life limiting condition but he "looked fine on the outside"

Not wanting to derail, but this very much reminds me of the self-appointed blue badge 'police', for whom "Well, you look OK to me" and basing their behaviours on that is the only consideration they believe has any merit - and if their 'second-gear valuation' of somebody else's situation turns out to be very wrong... well that's the other person's fault too.

I am not a genetics consultant but what you describe is the situation only for autosomal dominant conditions.

Most genetic conditions do not follow this pattern and are autosomal recessive which means both parents need to be carriers, the most well known condition being cystic fibrosis.

I think your misinterpreting the insurance thing a bit. It's not that they think he won't live past his sixties, they just don't have any data. They are conservative by nature. It doesn't sound like he was trying to deceive you.

I can imagine your DH is absolutely terrified that he won't see his kids grow up.

He told you.

You knew.

You both didn't address what this actually meant and are now facing it due to he life insurance being declined it's much more real.

Focus on the next 20, 30 years etc rather than what it's.

Counselling might help too for both of you.

The fact that he didn't actually convey the severity of it and after years is now in shock to find out about the severity of it. After building a life with him.

The responsibility was and is his, not hers.

Just to clarify to there has also been some dishonesty from his side before marriage but I chose to forgive him for that. This was nothing to do with his health though.

I am not at all upset that I can't get a house nor that he can't get insurance.

What upsets me is the trust. Yes he told me about his condition but he just brushed it off.

Also there isn't much research or online resources available on the internet anyways as it's a rare medical condition - I did do my research.

We rushed into our marriage. That's the biggest problem.

He is a great husband partner and father, and I was finally starting to enjoy my life. But now Il scared this would be short lived. I'm not angry he has this condition. OFC not.

I just feel a little let down (and yes I do agree that I am also to blame here)

I think I would react like you if this happened to me as a result of the fear so I'm not judging.

However, I do think YABU. Everyone has to die of something and even if we don't have a known condition ourselves usually our family history provides strong clues about what the future might hold. Presumably there's illnesses present in your family or someone might have died in middle age? Would you have expected your DH to refuse to have a future with you based on that?

It sounds like the health outcomes might be hugely different for someone of your husband's age anyway due to the surgery that became available in the 80s and that its more a case of them being unable to say how long this new generation of people affected will live.

I don't think you come across well here.

He told you the name of his condition. As he had it in childhood, he maybe is not even aware of life expectancy as his parents would have handled it all and it would have been confusing. In addition, he likely has 'moved on' from on and tries not not to dwell on it. When you live with a medical condition for many years and yet feel fine, it becomes your new normal, and you feel and look and act and live normally.

I vote you are being unreasonable.

You absolutely get to be “fucking furious” that your DH failed to spell out the true nature of his life shortening medical condition because he was in denial and, let’s be honest here, because he was worried you would end the relationship. You just do.

It seems a very strange (and not very wise) reaction to just wait to be spoonfed information, a wealth of which is available to you at the click of a few buttons.

When I happen to see in the news that a celebrity - whom I'll never meet and who has no importance in my life other than maybe bringing me a bit of entertainment - has been diagnosed with a serious medical condition that I've never heard of, curiosity will invariably lead to me looking online for at least the basic facts about the condition.

I absolutely cannot remotely fathom why somebody wouldn't instantly do the same when they're told about a serious condition that affects somebody whom they are considering marrying.

I think every word of this is deranged, ethically unsound, practically unworkable and - regarding your misuse of the concept of coercion - frankly offensive. So I won't bother unpicking it or arguing any further. Have a nice day. Thoughts and prayers to your loved ones, especially those who aren't in full health.

Not necessarily, it depends on the disorder, so please stop with the scaremongering!

OP I would genuinely ask Chat GPT about this as it will give you a fuller answer based on all the limited information out there and discount what might now be out of date following medical advances. You might find it very reassuring.

Ask something like: "What is the life expectancy for someone with XX condition born in 1990 and living in the UK? What interventions will likely be needed in future and what treatment options will be available?"

Guessing some sort of heart abnormalities

Think perhaps both of you have been in denial and your should seek some counselling
He perhaps could have explained better but you also
Could have researched more
But your here now and you've got kids so hope you can find a way through

I think it was downplayed to him by his parents all his life. I don’t think he was maliciously hiding anything.

My husband has a condition where he had an operation at twenty years old. He told me but he also seemed ‘fine’ and ‘downplayed’ it. He was also refused an insurance I think but it’s not something we were too interested and had multiple quotes etc… It’s something we just don’t dwell on to be honest. He is fine and has regular check ups. I wouldn't not be with him if he had his condition after we met.

Why didn’t you just Google it? I find it quite bizarre you didn’t have any curiosity about his illness. I’d have been looking into it.

I just feel a little let down (and yes I do agree that I am also to blame here)

I think you feel let down by the reality of the circumstances and it's human nature to seek an outlet. You are angry that his life lifespan may be shorter than average. But by him giving you his diagnosis you were made aware that possibility before having children.
Blaming him or indeed yourself is neither reasonable nor helpful. You need help in dealing with the emotions you are experiencing now.

Who is to say you @Anonymous1899 won't get terminal illness and die before him.
Life is a lottery.

I apologise for any scaremongering. I was of course referring to my own genetic mutation and should have made that clearer.

Also there isn't much research or online resources available on the internet anyways as it's a rare medical condition - I did do my research.

It must be a phenomenally rare condition if there's nothing much online about it. But if there's no online info about it, how would you expect him to know all about it to be able to present the whole, comprehensive scenario to you?

Being told as a child that you have an illness doesn't make you an expert in it - especially if it's something frightening that many people probably wouldn't ever want to seek out even the very limited information on anyway.