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.

He did tell you. You googled it. You didn't look too far into it, he didn't say too much. Would that have changed anything? Would you have walked away? Oh, and it's not his fault he can't get insurance, insurance companies are known for not insuring at times like this - anything to get out of paying.

The way he has handled it, while no ideal not to spell every possibility out, can you blame him? He is the one with a dark cloud over his head. If he prefers to try and live day to day as best he can.. then thats the way he wants to live and tbh, I can't blame him. When you know you have less, quality is what counts.

I think you're justifiably upset but I do think that you're lashing out to him for something he can't help. I bet he'd rather not be poorly, please go a little easier. Hope the children have not inherited anything.

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

This is entirely on you, then. He told you and you were able to do your research. He's not obligated to spell out worst-case scenarios about his own mortality. It's not his fault that you didn't do your current research back then.

We have kids now and im so angry at him for putting my kids and my future in danger.

Take some responsibility for your own life choices. And are they not his kids as well as yours? Also, take some responsibility for your own future.

Being angry at someone for their life-limiting condition, and acting like it's something they've done to you, is astonishingly heartless, and I can't imagine feeling like that about someone I loved. Would it make you feel better to remember that you're the one who's been gifted with what will likely be a longer, healthier life?

FWIW I had a friend at school who had a supposedly life-limiting condition. In fact, when I made friends with her, my parents actually sat me down to solemnly prepare me for Sarah maybe dying before she was out of her teens. Thirty years on she's still going - she's become a barrister, has a kid of her own and her husband adores her. I don't actually know what she told him about her condition before they got married. She always downplayed it to her friends at school (for obvious reasons) and never once mentioned a shortened life expectancy - her coping mechanism was to ignore it as much as possible. It should be obvious to anyone that people don't want to dwell on their worst case medical scenarios, let alone spell them out to everyone they date.

Several of us have suggested it is a congential cardiac condition and explained why long term outcomes for people in their 30 & 40s is unknown. Is this so difficult to understand ? CF is another possibily but doesn't usually require childhood surgery ( can do) also someone with CF takes multiple daily medications so I think this is less likely however I have know people born with CF die in their late teens and live to mid 40s so there is that too.

My primary worry would be whether my children might have it.

YANBU. It's understandable if he's in denial but it's not an excuse. It is his responsibility to be honest with you about it and he wasn't. So of course YANBU.

We could all be hit by a bus tomorrow. YABU. He did tell you, anyway.

What make you think he wasn't honest?

He didn't hide anything from the OP, she just chose to ignore the severity of the information he provided.

Well you’ve successful made this all about you OP

You’re an adult and Google has been around a long time - you knew it was life limiting since you cared to loo it up at the time but as ever with the invincibility of youth being in your 50s seemed a lifetime away ….now it’s not you decide to be angry??

I think when you choose to have children you should consider things like whether you can realistically manage to raise them to adulthood. Living in denial as a coping mechanism is only ok when it's just you that's affected.

You do realise you’re making his life limiting condition all about you don’t you? Which is very unreasonable. Either of you could get run over by a bus tomorrow, you could get cancer, he could have a heart attack. Anything could happen at any time to change your lives radically.

So someone with a life limiting condition shouldn’t have children then? Should they be automatically be sterilised in infancy?

As for "you could be hit by a bus", well, yes. Any of us could be the victim of any number of accidents. The difference is that the person with the disease not only MIGHT be hit by a bus but DEFINITELY has a fucking disease.

Exactly, but this is MN where a significant number of posters can't understand the difference between "reducing the risk of" and "totally preventing". I've seen it on threads from Covid to socialising to going out running.

I’m sorry this has caused a scare to your family but in reality nothing has changed. Insurance companies are notorious for being risk averse and not even paying out when people do have it, they like to make money!

As this has opened up more questions would your husband be open to an up to date medical MOT & a appt with a specialist about the known facts now?

If anything it’s a reminder not to take anything for granted & live and enjoy life.

Ideally he should have told you more, but I can understand why he didn’t. Medical knowledge and possibilities improve all the time.

But you obviously don’t feel "we're in this together". You don’t sound as if you love your husband. You don’t even sound as if you like him. Poor man.

People can die at anytime for any reason. It's sad, but it's life. OP's husband could even outlive her. We don't know. That's the point - or lack of, rather, of life.

The beautiful thing is that we choose to live it anyway. For some that includes having children.

OP, I think you’re being very unreasonable. He told you about his condition and it’s not hereditary, so you wouldn’t have been worried about your DC. The fact that you both minimised it when you got married is perfectly normal - he told you about it; you wanted to marry him and did; you had a family, and now he has been refused life insurance, you are panicking. Stop anticipating what might happen, because frankly, anything can happen to any of us. Your DH has had to live with his condition all his life, and familiarity does breed contempt, particularly when, as you say yourself, “seeing as my husband looks 'fine' on the outside I didn't really dwell on it” - so it’s as much on you as on him. Medicine is advancing all the time - you don’t know how long he will live and nor does he, but you don’t know, either, how long you will live, or whether you will get some life-limiting condition. It’s bad enough for your DH having this condition without you blaming him for it - it’s not exactly something he’s chosen, and he DID tell you about it before you were wed.

He told you what the condition was, so he told you everything that you needed to know. The information you have got more recently was always available to you.

I think that good parents consider the needs of their children. I think if it is inevitable that you won't live long enough to raise your children to adulthood then yes, it's a selfish decision. Children aren't accessories, they are dependant people.

I would be fucking furious too, OP. You’re in your 30s so based on current life expectancy he only has around another 20 years to live. It’s not good enough to say he was in denial or that you should have done your own research. A normal, trusting person doesn’t do background investigations into their partner’s medical issues, rather they take what their partner says as read. It’s absolutely fair enough to assume a person suffering from a condition knows more about it than anyone else!

YABU

google existed. You could have looked more into it then. But what difference does it make? Would you not have married him? Fair enough if that’s the case, but I suppose you need to think about whether feeling fooled is enough to end your relationship

what strikes me most in your post is there is not one shred of compassion or empathy for the man you presumably at least at one point loved enough to marry and have kids with. All you care about is you. As for your kids there’s no guarantee any of us will have our parents for a long time growing up.

Are you suggesting that men and women with medical conditions are obligated to spell out all the worst-case scenarios about their own mortality to everyone they date seriously? Effectively they are responsible for blocking off their own relationships?

Or perhaps people could take some responsibility over who they marry, especially if they have the facts needed to do due diligence (and especially if someone's life expectancy would be a deal-breaker)?

You don't get to be "fucking furious" about someone else's life-shortening medical condition. You just don't.

THIS.
At what point do you take responsibility for your own actions in this?
My husband is autistic -we didn’t know when we married.
If we had without doubt I would have researched like mad to see if anything could be passed on to children/how it could affect our lives.
You knew he had an illness/syndrome. Surely you would have done at least basic research to see if anything could be passed onto children??

I can utterly empathise with your husband hiding his head in the sand -it cannot be easy for him.
But your decision to marry & have children with him lies on your shoulders.
Youve made your bed, now you have to lie in it I’m afraid.

I think it's a both in denial thing. He's in denial because he looks and feels OK. She also thinks all is OK until it's impacted them negatively. It still might all be OK if it's a heart thing and new treatment has occurred.

Good grief. Give your head a wobble. Maybe get some therapy for yourself to help you process.

of course he’s done nothing wrong. Remember this is just a normal part of his life, it’s all he’s ever known. You knew about it. Get some help to process the parts you are struggling with.

Children can be ok with one parent. There is no guarantee any of us won't get ill and die young