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.

Your future is not in “danger”. What happens is within your control.

don’t say you have given up work or are a sahm, knowing your dh had this condition.

the positive here, if there is one, is you have time to plan. My dad died suddenly before he was 50 leaving my mum with no income, no will, nothing.

get things sorted now. Wills. POA. Guardianship of the children. A savings cushion. Get the mortgage but leave dh off it if necessary. Make sure you’re joint tenants, you’ve looked into inheritance law in your country, and make sure you or the kids are named on pensions.

your career is equally important now as you may have to support yourself and the kids. Get your life in order so if dh, or you for that matter, is incapacitated you won’t need to worry about finances or paperwork.

after my experience of my dad dying I would never leave myself vulnerable. I have a good job, the mortgage and house is in my sole name, I can afford the bills and a relatively comfortable life on my own.

Tough situation all round, if he says he was in denial then obviously he knew it was something gravely serious, otherwise no need for the denial.

But, if you researched it and continued with the relationship then youre also at fault for the position you find yourself in.

It seems you both minimised the issue but now children are in the picture it has come into focus. It is really unfair for you to have a resentment towards him, you are as much to blame as he is. Work on accepting it.

All I know is that when I was being tested for this sort of heart condition myself I knew that I could not, in good conscience, have had a child knowing how short a life expectancy I would have had.

I appreciate that the psychology was different as I was early 20s and this felt like a potential sudden shift in the direction of my life. Someone who has known on some level all their life will come to terms with it in a different way.

OP, I read your most recent post that you're just scared that you and your children will lose their dad/your husband at a young age. I wonder if the anger is just part of a grief process you're going through.

Question though - if you did know the full extent of your hubby's condition, would you still have married and had children with him?

But he did tell you. You said he told you, you googled it and chose to ignore what you found out because he takes a positive approach to it.
So basically, you're angry with him because he has a serious, life limiting illness but puts a positive face on it and tries to live while he can.
You're angry because he didn't sit you down and tell you he might not live to be a certain age. While I can understand you're worried you seem to be very focused on yourself here. Not everyone wants to wallow in self pity about what might happen in the future.

The research said " threatening" and you didnt look any further to question when you were aware of it. At that time he downplayed it for lots of reasons maybe because he did not want to be defined as weak or poor outcome his whole life and " he looked well" ....."think positive" all those things that people tell us in our culture to push on and get what we want and make our expectations come through whilst ignoring the obvious.

I would imagine as a child his parents would have protected him from the worst of the details, which meant he could go on to lead a life not really focusing on the outcome of his condition too much, it explains why he doesn't seem to know much about it, or understand the medical jargon etc. It doesn't affect him in the day to day so he hasn't bothered to learn any more than he was told as a child from the sounds of it.

The facts are he told you about it though, full disclosure, you were (and are) in exactly the same position he is in, you both had the chance to look into it further at that point and make decisions before deciding to get married and have a family and neither of you have bothered till now.

You trying to make an issue out of this now and blaming him is awful.

Did they not have Google when you got together? Seems you were completely incapable of doing your own research. Do you have any sympathy for this man? Sounds like you don't.

You make it sound like he's a shoddily-designed car or washing machine that's full of defects: a heap of useless old rubbish that isn't worth anybody's time and stress and should just have been junked as soon as it left the production line and replaced with a much better one.

This is a human being you're talking about.

As for 'cockpanderers' as you said in your other post - which is normally the kind of thing that people say in reference to pathetic lazy manbabies who refuse to take responsibility, rather than levelling it at disabled people and those living with serious life-limiting medical conditions - I personally would say exactly the same thing if the sexes were reversed and it was a selfish man making his wife's serious, frightening, life-limiting medical condition all about himself and how it makes him upset.

She researched

She clearly didn't research enough

Well lots of people have seen it from the husband's side, which disproves your theory.

Part of my work is assesing suitability of aplicants to have children placed for adoption. Life expectancy is considered in that yes.

You googled the condition, you found out it was life-threatening, you chose to minimise this until it became impossible to ignore.

You’ve been through the denial stage of grieving, and now you’re at the anger. Bargaining will be next.

Ironically, she's angry at the insurance companies for doing their research and deciding that he isn't worth their bother; yet she didn't make the effort to do the same to ensure that he was the kind of spouse whom she believed was acceptable enough for her.

All this is based on seeing her DH as nothing more than a liability, of course - with the worth of his life being carefully weighed up as if he were an old building that might possibly contain asbestos; not as an actual valued, loved human being in his own right.

Your vows were in sickness and in health. Nobody has a crystal ball into the future nor medical advances.

Many people get illnesses, some people are predispositioned to higher risks of cancer, diabetes etc.
Your husbands condition is no different.

Whilst I get that it's a scary prospect of the unknown you being annoyed at him for it which is something he can't control and told you about is unreasonable.

I don't get it? You either loved him and wanted to share a life or not. Knowing he had a health condition ought to have been discussed when having children but I'm stunned that you would have felt this was a no go because your husband ..boyfriend at the time might die in 20 to 30 years? I just don't recognise love in this

You never know what will happen daily. He could be as fit as a fiddle and have a heart attack tomorrow. Live life, enjoy your family and make the most of things.

You went into this with the knowledge he had the condition and you had every opportunity to investigate it further before going ahead with marriage, kids, home. You didnt.

Now is not the time to be dwelling on this. Its the time to make the most of everything.

Op doesnt indicate at all that shes angry with the insurers.

You cannot seriously be claiming that the ratio of negative to positive responses would have been the same if the sexes were reversed?

(Apologies if this has already been asked)

What I don't really understand is that you say he told you of this condition 'when you got married'. Doesn't that signify that it was kind of a big deal? Y'know, a 'Before you commit to spending the rest of your life with me you need to know this' kind of thing? So if you didn't check it out at the time then that shows a really surprising lack of curiosity. I don't think you can now blame him for not presenting you with actuarial tables and a spreadsheet so you could perform a full cost/benefit analysis. I mean, you knew that your husband had a serious medical condition and the thing your upset about is life insurance? Seems a bit cold.

@gannett

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? Yes, they do. I can’t have anymore children, it is most certainly my responsibility to share this with a partner I am seriously dating.

Effectively they are responsible for blocking off their own relationships? Yes, it’s called honesty. Failure to fully disclose information that important is tantamount to coercion - especially if the reason it’s not disclosed is fear the relationship would end. Same applies to infectious diseases and hereditary conditions - you have a responsibility to disclose this information to the person you supposedly love.

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)? My best friend has MS and has a low life expectancy. She doesn’t say to me she’s seriously saying “I’ve got this thing called MS, but I’ll be absolutely fine”. She absolutely spells out what it is and means to men she seriously dates and doesn’t expect them to do their own research. And of course it’s perfectly acceptable for someone’s drastically shortened life expectancy to be a deal-breaker!

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

Yabu on this one

Absolutely. I don't think any decent-minded person would for a moment be in favour of eugenics; but if we're just assessing human life like a commodity and deciding that the 'faulty' (or even potentially 'faulty') ones are not worth anybody's time and should be abandoned at the side of the road of life - still fully allowed to be born and go on living, of course, but ignored and acknowledged as pretty much worthless until they die - where does that leave us as a society?

Congenital heart surgery...know someone had this ..in her 60s. This has been going on for a long time and many in that age group successfully now in" old age." If you recall the murdered tv presenter Jill Dando. She had heart surgery in the 1960s