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.

Maybe he should have made a better effort at explaining what he knew about it to you, but you knew there was 'something' & if it was important to you, you should have asked him more. You stuck your head in the sand along side him. Stop blaming him.

And if that 'research' met with 'you'll have a normal life, no reason why you can't get married and have kids, we'll just monitor and see what happens'? It's exactly what tends to be said in cases of chronic disease.

You have had a shock and it’s entirely understandable you are angry - if he knew his life expectancy was likely to be affected by his condition then you should also have known ….before marrying and before having children.

Things that just affect one person (him as a single person pre marriage) are different when you have dependents and he may have not thought that through at all or he may have been in serious denial, hopefully he did not deliberately hide the information, who knows.

Medical journals existed decades before that ai thing and would be more accurate. Might be hard to find info but easier now to search them since the internet than previously.
Did you ever think he didn't know/want to know the full extent of his own condition? Some people bury their heads in the sand about these things

He told you. You researched and didn't think much of it. He may have done the same limited research and felt the same.

Sometimes new research comes up with new information that wasn't there before.

Whatever the reason there was, he told you about his condition and the treatments he had. You chose to have the children too. I'm assuming it was a joint decision. You can't exactly put the blame on him.

It's very possible he could outlive you for any reason. Who is to blame then?

Do you love him enough? Do you want to spend your lives always scared that death will knock on your door at any moment. Or do you want to live your lives as fully and happily as you can together.

Absolutely this….. x

I agree with every word of this…the poor man x

Well you do know now. There isn't really much you can do about it. So you can let your anger burn away inside you or keep living , enjoy your children and hope that your husband will out do any predictions that we're made years ago. xx

He's the one with a life-shortening condition and you think you're reasonable to be upset with him?

Have some imagination - what might it be like to live with a life-shortening condition?

So he’s the same. He didn’t have access to the internet back then the same as you! I think you’re angry at the universe for now the possibility of loosing your husband and naturally upset on your kids behalf for potentially loosing their dad at a young age. He didn’t hide anything. Told you the disease. You researched it and you dismissed it because he was as outwardly well. You made decisions based on what you knew at the time. Going back now and beating yourself (or projecting anger onto him) is ludicrous. As said before I recommend therapy for processing not only the now but the future.

That's not what he was told, though. Unless I have misunderstood, everyone alive with this condition is aged under about fifty, because the treatment was invented ~ 50 years ago.

Everyone born > 50 years ago with the condition is already dead, for lack of treatment ...

=/=

...everyone under fifty who's had the treatment will die at fifty. We just don't know because none of them has got there yet. They might all live to one hundred.

You said: "When we got married my husband did tell me the name of the medical condition, he did tell me about his surgeries...".

Therefore he was honest with you. He believes he is fine and is fine right now, he presumed you were OK with it, were prepared to take a chance.

I am sorry about the life insurance but that is a small issue in the scheme of things. There's nothing to stop you taking out a good life insurance policy if you feel it necessary.

If your husband is 'fine', lives normally and would seek medical advice for any related problem, he may well go on for a very long time. Also medical science is improving all the time, what may have seemed hopeless thirty odd years ago may not be now.

Enjoy now, nobody knows what tomorrow will bring. People have accidents and die.

If you really love each other, you have something very precious.

What's the condition OP? Without knowing what it is it's hard to know whether you're being unreasonable or not.

There's a very good possibility no one sat him down and directly told him that he would only live until his 40s/50s. You said he had surgeries when he was a child which means his parents would have handled the medical appointments. You said he's fine day to day and you were unaware of the severity, so there's a very good chance that he wasn't aware either.

My DF was diagnosed with Huntington's Disease - which very much is a life-limiting condition (and pretty horrific). I was with him at every single appointment, even the early ones where he still had all his faculties (he hated dealing with medical stuff so I always went with him). I can tell you now - categorically - no one explained what Huntington's Disease would do, or the likely course. They told us about treatments (or the lack of) and referred DF for physio etc as he progressed. But not a single medical professional sat us down and told us what the prognosis would be. He was dead within 10 years. No one told us to prepare for that.

OP has said there was no information online about her DH's condition. So perhaps it's not inconceivable that he was unaware of the implications too. He was a child when he was diagnosed and he is unaffected at the moment, so it's perfectly understandable that perhaps he was oblivious. That's even more the case bearing in mind OP says there are no stats about the patients that received the same treatment as her DH. If the OP couldn't find any information then perhaps it was the same for her DH?? I don't see why some PP are finding that so hard to believe.

It sounds to me OP that you may have had the same amount of information available to you as your DH - ie/not much more than the name of the condition.

I agree with the above poster, it would be helpful to know the name of the condition. Somebody here could know about it and be helpful. I worked in the medical field for many years and came across some extremely rare conditions.

It's important, if you do tell us, that people who know are careful with what they say because, whatever the illness, each patient is an individual and we cannot make definitive prognosis.

Please go ahead, we don't know you personally and it's very unlikely it would be outing.

However it is your business so I respect whatever you decide.

You could die before him.

My husband is deceased from a hereditary condition which our children may have. He lived longer than two of his siblings who did not die of his condition. You’re putting hindsight on previous decisions, surely having healthy children and a loving husband is something to be treasured. You’ll destroy your marriage and your happy family if you continue to build resentment over what might have been.

(A house mortgage can be got without life insurance for those with health issues)

And what if he'd made peace with it - understanding that a lot was still unknown, as is the case for all of our lives; and he didn't really feel like gathering a damning portfolio about himself of the worst-case scenario, just so that he could resign himself to being shop-soiled and worthless as a partner or parent and warn anybody off who mistakeably thought that he was worth their investment?

So, bearing in mind that YOUR kids are half his and would never have been born if you two hadn't got together, you would prefer to have had different random, theoretical kids with somebody else (or possibly not even that if you'd chosen somebody who later turned out to be infertile) instead of your actual living, breathing kids that you have now and have known and loved all of their lives?

Do you think your kids would prefer never to have been born, in favour of some other theoretical kids who might (or might not) have had their dad in their lives for longer?

His insurance is relying on his wife. That was always his plan, he just didn't tell her.

I can't believe some of the comments on here. The OP only just found out that her husband is likely not to reach old age and is having all sorts of emotions and conflicting thoughts that she processes. Only on mumsnet are people supposed to shrug and move on within minutes.

She's known since she married him before they had multiple children that he had a life limiting condition which she googled the name of (because he told her) and discovered it was life limiting. In no way can this be described as her just finding out.

she wouldn't have chosen to have kids with someone who knew for a certain fact that he was likely to drop dead in middle age.

He doesn't know that will happen though and nor does the OP. He could very well have a long happy life. You think he should have lied and said he was definitely going to die in middle age? That's quite an odd take.

He should not have lied and told her he'd be fine. Which he did.

He told her he'd be fine because that's what a lot of people who have life limiting conditions tell others. It's human nature to be optimistic especially when younger.

He should have explained clearly that there was a high risk of him dropping dead in middle age. Which he did not.*

There isn't a guaranteed high risk of him dropping dead in middle age though. He doesn't know what the future holds, even the doctors don't know because there hasn't been sufficient time to know the outcome yet. So anything he said would be a guess.

@Anonymous1899
I’m shocked!

Surely you’ve got to be angry at yourself for not doing your own due diligence.

When you love and care about someone you would naturally want to find out as much as possible about their health problems.

Would you still have married him had you known then what you know now?

I think you’re now blaming him for your utter naivety.

There's no evidence whatsoever that he's more likely than anyone else to drop dead in middle age. The only reason, that no-one has lived beyond fifty with this condition, is that the treatment was only invented fifty years ago (at least some of those original patients - now fifty year-olds - are still alive).

@Anonymous1899 have you found any evidence of mortality/morbidity from the condition in adults, or only (historically) in untreated infants?

I'd be quite angry. I am sympathetic but he lied to you. You are now trapped in a life you didn't sign up for. Your children will lose their father young and he has conveniently lined up a full time carer for himself (for the avoidance of doubt, that's you).

It's not the same as something unexpected happening. He actively lied.

She hasn’t just found out,!. She was told before their marriage he had a life limiting condition . You do not know the husband so stop making assumptions about a “plan”…that is a complete fabrication on your part