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.

YANBU if he's said "I have jddndjehe dkdnehe syndrome, I'm fine, I had surgeries as a kid to fix it." And it's a rare condition that isn't explained in simple terms on NHS or wiki. And then it turns out that actually it's a hereditary disease that reduced life expectantly to 40-50yrs I'd be steaming.

And you'd also have the right to be annoyed that becuase hos life expectancy is so much shorter it severely impacts your ability to buy a house. Especially as there's a good chance you'll be a widowed single mother.

Nah. He knows he should have told you. He didn't want it to affect his life, so he's chosen for it to affect yours and your children's.

He should have said "I have fkdjddj dkdjrffj syndrome, it doesn't affect my day to day life at the moment but it shortens my life to around 40-50 and my children could have it." You had the right to be informed by him, it is not your responsibility to go away and research his condition to find the information he already knew and chose to keep from you.

Oh do fuck off. You anti-vax ghouls are disgusting, always popping up on these threads to gleefully ask grievers if their losses are the kind you can exploit to back up your anti-science bullshit. One can practically hear your hands rubbing together. Absolutely gross.

FYI my husband died during Covid from a cardiac arrest... before the vaccines were even released. I went on to have the vaccine and am so grateful that the three times I've had Covid since have therefore been pretty mild, enabling me to continue caring for my daughter.

Funny you should ask that. My DH had a sudden heart attack after the covid vaccine, age 27. He had to fight for the doctors to take him seriously or he would've died.

ETA it was diagnosed as a dorect result of the covid vaccine. One of the 1 in 1000000000. His body reacted to it and he had hundreds of blood clots throughout his body which caused the heart attack.

Exactly. So how was he supposed to know it all beforehand?

Some of us just have this stuff unexpectedly sprung on us later in life. It wasn’t till I’d been diagnosed with cancer that it was found I had a gene fault that gave me a 70% chance of getting it at some point. At least you had prior knowledge.

OP I would ask to have this thread taken down. So far you haven’t received any constructive advice or empathy - just criticism and judgment, and a slew of people telling you how they or someone they know is living with a life limiting illness and we could all drop dead tomorrow. None of which is any help to you.

The fact is you shouldn’t have had to google about his condition. It’s not your responsibility. He has a life shortening illness, he knows it and hasn’t been upfront about it. I don’t give a monkeys what his excuse is, he had no right to start up a relationship and go on to have children without being completely honest with himself and you.

Even if he wasn’t sure about it himself, he should have taken responsibility for it and made sure he knew the potential effects and any hereditary element that could affect your children. It’s incredibly selfish that he’s abdicated that responsibility onto you. Posters are saying it’s blaming the man - well yes, he bloody well should be blamed because typically of most men he doesn’t want to take charge of his own health and well being, and has completely failed to consider the effect on you and your children.

What’s done is done and you both need to face this together now. Apportioning blame is pointless and I would try to put behind you any resentment you feel aside and be practical. Googling is pointless because there is lots of information out there which may not be applicable to your husband, so you have no idea whether what you’ve read can accurately predict what will happen, and with the best will in the world, neither you nor your husband have the medical knowledge needed to interpret what you’re reading.

You need to try to get him on board with seeing your GP and asking for a referral to a specialist, where you can find out how his condition is likely to affect him as time goes on, and check out whether your children may be affected, asking about any testing that may be available. You need accurate and relevant information and you need to do this together, so that you’re both prepared for any eventuality. You have a family to consider so now is the time for him to stop burying his head in the sand and face it - there will be support out there for both of you so make sure you take advantage of whatever is on offer. Sorry if that sounds harsh OP but I think it’s the only way forward.

'Getting myself into'. I really hope your DH, his family and friends don't read that!

I'm really confused by this. He told you about it. He hasn't lied or been dishonest. You chose not to learn about it or look into it properly. That's on you, not him. The situation is horrifically sad, I am really sorry for you and your husband but it's time to stop looking back and start looking forwards so you can enjoy your lives whilst you still can.

He knew he had the condition. He should have researched it for himself and got proper specialist advice before starting a family. It shouldn’t have been down to OP to research it. He’s the one with the condition, and he’s the one who needs to take responsibility for it. OP is his wife and the mother of his children, not his carer.

Why is it on OP ? How do you figure she is responsible for his health condition ? And her phrasing is accurate. She now realises that getting married and having a family has got her into a situation which she may well have thought twice about had she had all of the information at the time. He’s taken away any autonomy she had in making an informed decision in something that will affect her and their childrens’ future as well as his.

This!

What is the condition @Anonymous1899 there might be mumsnetters witn experience of it?

I think you're being unrealistic about what he would have been told as a child (possibly very little info), what he'll remember from medical conversations as a child (even less info), plus the key fact that the surgery he had was new in the 80s, so data on longterm outcomes will be extremely limited.

Life expectancy for cystic fibrosis, muscular dystrophy, complex congenital heart disease has improved massively in recent decades - and continues to change. Does your husband even have any current medical follow-up? I'm guessing not if he's well, so how would he know what the current expert estimate of his life expectancy is? It's very possible that even a specialist consultant knowledgeable about his condition may not be able to predict a ballpark life expectancy in this scenario. A kidney transplant is expected to continue functioning for about 15 years but there are people where it's still working after 40 or 50.

Making predictions is difficult, especially about the future.

Posters insinuating (and outright stating) that disabled or chronically ill people are “lucky” or “fortunate” to have supportive spouses is such a gross and ableist take.

Rubbish. OP was getting on with her life until this information was presented to her when he tried to get life insurance for a mortgage. Now she faces the possibility of him dying young, and her being left looking after her children with not even the possibility of an insurance payout to cushion things. It’s a massive shock and I simply don’t believe some of the smug posters here would be able to accept it without a word of complaint.

The fact that we could all drop dead tomorrow is irrelevant. That’s the chance everyone takes. This man knew he had a shorter life expectancy and minimised it, which is completely different. OP should have been able to make an informed decision and he took that away from her because he couldn’t face up to facts. It’s unconscionable, and now it’s come back to bite all of them.

You know that chat gpt makes stuff up right? If there's not much info online it often just makes a confident-sounding guess.

I would be extremely careful to follow up what you've "found out" from chatgpt by asking for its sources, and then checking that those sources really exist, are reliable, and contain the info chatgpt claims.

I agree with the OP. He did tell her the name of the disease but also told her it would be fine. Yes she could have googled it but to me the onus is on the person who has most knowledge about the disease to share it, I can't imagine knowing something that is likely to hugely affect my partners life and not disclose the fact that my condition is likely to be life limiting, when we were having discussions about getting married or having children. I think the 'well you could have looked it up yourself' excuse is technically true but morally very shady. I've never asked my husband and father of my children if he has any health conditions that he thinks might shorten his life, as I'd have expected him to tell me and share the consequences (not just tell me and then decide its down to me to do what I want with that info). He should have fully involved her and disclosed everything to her so they could have had conversations about life insurance, planning for kids futures, planning for retirement etc together. The fact he brought kids into the world and didn't think to mention something like this is mind boggling to me. Understandable, given its a natural human reaction for some people to avoid talking about things they find stressful, but still wrong

I don't agree with your comment, so by your logic, I think OP should seek to have it taken down.

The OP states 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

Where is the OP's personal responsibility? She literally states that the information she had was that the condition was serious and potentially life limiting.

The insurance issue brought that home, but it wasn't the first time the OP had been alerted to the possibility.

Both parents took a 'head in the sand' approach.

How sympathetic to the poster who lost her father and how intellectual of you to argue "rubbish!!!" 😂

OP also knew he had a shorter life expectancy and minimised it:

"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."

OP has received lots of empathetic responses @Lovelysausagedogscrumpy

Counselling has been suggested many times.

Never trust a word ChatGpt says about this kind of thing. If there's little to go on, it will read anything mentioning the condition and cobble together some story which may include details of quite different conditions mentioned in the same article.
A ridiculous example:yesterday I googled'Moonraker Cartmel Priory' when looking for a gig at a local music venue, and AI told me that Moonrakers is a folk band and Cartmel Priory is a medieval church, so the 2 entities are probably different. Sheer nonsense.
If there's not much information, there's not much information. You don't know how this will pan out. Sorry you are going through this, it's very hard.

"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."

"the insurers basically don't believe he will life for another 30 years (we are in our early 30s)"

@Anonymous1899 This isn't at all what you think it is. The insurers are looking to minimise their losses. Their losses are caused by successful claims. All they are saying is that they don't want to take the risk that your DH is going to die earlier because the data for people with his condition who have been treated is too new to give a sensible prediction.

It doesn't mean that they think he's actually going to die. Nor should you think that. If the treatment started in the 1980s and there are statistics for people who are living to 40-50 years old, then it shows the treatment has been successful (presuming that usually people with this condition would have died earlier). In 20 years time, it's likely that they'll have data for people who lived to 60-70 years.

I think you're catastrophising.

Medicine changes massively in a few decades, what is the point of all his surgeries and suffering as a child if he can't go on to live a full, happy life?

I think if he had an obvious hereditary condition and hadn't been truthful you'd be reasonable to be upset, but this isn't the case.

40%+ of marriages end in divorce yet you still married him, did you consider that risk to yourself and your kids pre marriage?

I agree with this
This is where my anger comes from
He didn't tell me clearly what to expect expect and I feel he was selfish about it
I hate to say it but that is how I feel :/