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.

I’m sure that if OP had a life limiting illness she would probably be able to give him a ballpark figure based on any medical advice she had been given - thus giving him a chance to make an informed decision on how to move forward, especially if he wanted children. In her DH’s case, he didn’t bother to obtain that advice and minimised the whole thing, thus leaving OP in a situation where she will be potentially be the surviving partner by many years, with children to care for, and no life insurance to compensate for financial loss.

But you are contradicting yourself now.

It wasn’t intended to be sympathetic. It was intended to point out that it’s not the same thing at all. We all take that same chance when we start a relationship - life expectancy is an unknown. Except that her DH’s wasn’t. He minimised the effect of his illness on his lifespan, and posters here are on the one hand putting the responsibility for properly researching it onto OP, and on the other, telling her googling is not a reliable source - which it isn’t because the information is general and may not be applicable to her DH’s circumstances.

This is an extreme example of what we know to be true. Men don’t take proper responsibility for their own health. OP is his wife and the mother of his children, not his carer. While I agree that she should have asked more questions at the point she was aware that it ‘seemed’ life limiting, it doesn’t absolve her DH of taking responsibility for it himself because at the point he started the relationship it was no longer just about him - even more so when they started a family.

What condition is it?

How is marrying someone in spite of the known statistics on divorce, the same as marrying someone who hasn’t disclosed a life limiting illness which will ultimately affect his partner and family ?

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

It is not compulsory to have life insurance in order to get a mortgage or buy a house. Many people have a mortgage without life insurance so it is not true that this means you can't get a house.

But you had been given the most important piece of information years ago. You knew he had a very rare medical condition and knew that it was potentially life limiting.

I understand that it's very frustrating that your dh has not been proactive in understanding his own condition, but the same applies to you when it comes to your decision to marry and have dc with him. You chose not to "dwell" on the information you had and not to pursue finding out more.

Did you talk to your GP?

The question is, if you had known what you know now prior to marriage would you still have married him??

@Anonymous1899 I don't quite understand why so many other posters don't get your point.

IMHO the onus was on your husband to give you full disclosure (before getting married and having children). So that you would have known what you were getting yourself into at the outset.

I would feel that I have been a bit hoodwinked, especially if there was another issue regarding him being transparent in the mix too.

To be honest I feel some women don’t take enough responsibility for their own decisions and choices and prefer to blame everything on men.

If he has a life limiting condition, he must be followed up in some way by some medical staff? There must be medical appointments that he attends to check how he is doing - does that not lead to discussions on his condition between the both of you? Even if my husband knew that I had a dentist appointment, it would pop up in conversation at some point and he would ask how I got on.

To be fair to her DH thought it sounds like nobody much knows about this condition and its impact on life expectancy - not even the experts treating him when he’s required it!

He told her he had a condition, that it seemed life limiting and not much else because that was the extent of what he knew - likely due jointly to a fear of knowing more and lack of information or certainty in predicting outcomes.

This is a horrible, sad and scary situation all round but encouraging OP to be angry at her DH isn’t helpful - dealing emphatically with the here and now and both taking responsibility for the burying of heads in the sand in their 20s when everyone feels invincible no matter their diagnoses for the most part!

He doesn't know what to expect, he has the same limited infomation to hand that you do, you've said yourself that the statistics on life expectancy for this condition are decades out of date.
What was he meant to tell you? That he might have a slightly higher chance of dying slightly younger than he might otherwise die, a date that none of us have any idea when it would be and limited control over.

He told you he had a rare, serious, chronic health condition. You still fell in love with him and married him.

Maybe focus your energy on what future/ financial planning is available to you as a couple rather than what isn't.

He told you he had this condition. He doesn't know anymore about it than you do. How was he withholding information if the only thing he knew (the name of condition), he told you? If this condition is life-limiting, you would have been able to find that online years ago. Chatgpt wasn't the birth of information access. Same for it being hereditary. He hasn't been deceptive, you've been wilfully ignorant together.
I'd be worried about the future if I were you but I wouldn't be blaming him as it's simply unfair.

He told her the name of his condition and that it was life limiting. That is full disclosure and then ip to the OP to research/ get advice from professionals. After all you would want to hear it from medical professionas who will give her the best possible information rather than a lay person. IMHO I don't know why you don't get it.

I didn't know how I would feel after having kids and now is have them, the answer would probably be no. I wouldn't have married him because I wouldn't want to put my kids under emotional strain at a young age.

Had it just been the two of us, then yes I would have married him regardless of his condition

I agree with this

If theres not been much information online,
how did you expect him to know much more?

If her love was so conditional? What?

Is love not supposed to be conditional on little things like people telling you the truth about major things that will affect your entire lives?

He denied you the chance to decide whether you wanted to marry and have children in full view of knowledge that would materially affect that decision, which he intentionally withheld from you. Failing to tell you about reduced life expectancy and exactly what he did or didn’t know about what it’s been reduced to is serious deception. As he well knows, which is why he asked you if you think he should have been more honest with you before you got married.

Of course he should.

Nobody should do that to someone they are marrying. It’s deception by omission.

And he definitely should have told you about this before he tried to conceive with you.

I am truly appalled by the number of people on this thread claiming that it is on you for not being loving enough — to what, want to know the truth from a partner before getting married? Ridiculous. To say he’s told her about the condition is hiding behind a technicality. He has material information about it that he has been told directly that he has failed to pass on to her on purpose.

I feel very sorry for both of you but he intentionally misrepresented his situation when getting married to you by failing to mention the life expectancy. Nobody should do that to the one they love.

He told her what he had What stopped her researching it before marrying him and having kids You can't blame him for her saying " oh he looked ok"

But you most certainly can blame him for not saying “I have been told my life expectancy may be 40-50 years. They don’t know for sure, but I have been told this. You need to know this before you say I do.”

But she didn’t know he might die in his 40s or 50s!
he DID. NOT. TELL. HER.

so yes. He IS in the wrong whichever way you spin it. She wasn’t able to make an informed choice because he withheld information!

I don't see how he affects your and your children's future. You are an adult who should be able to survive without him (what if you divorced? what if he had an accident? What if he had an expected illness?) and take care of your children (there are widows and single parents with deadbeat exes who do). Not to mention that medical prognosis is sometimes wrong and he might beat the odds. If you already have children, if he lives to his 50s, they will be adults!

I'm mystified by all the PP who think he withheld information. He told her what the condition is, and that he was one of the earliest to be successfully treated - presumably, prior to that, sufferers died in infancy. Because treatments started in the 80s, there can't be anyone much older than 46 now who has it, so life expectancy is unknowable. Unless @Anonymous1899 is aware of people in the treatment cohort who have died in adulthood of this condition, what is the issue?

OP knew all the above when she married. Also, shop around for insurance. Someone will take him on: it's the unknowability they don't like, not the condition itself.

Stop relying on ChatGPT - it is only pulling information off the internet that you could access yourself if you can find it. It does not 'know' anything at all, do not assume that it does.

If you really want to understand his condition and health you should go with him to an appointment with a consultant to check how he is doing and what they expect to happen/what may/may not happen.

He should probably have been a bit clearer about his condition and what it might entail earlier on. But equally, you should have asked the questions that occurred to you at the time, whilst planning a life together, like 'if we have children, how will this affect them' and if you and he didn't know/couldn't find those answers online you should have spoken to a specialist before having kids. Neither of you thought to do that, I really don't think thats any more on him than it is on you.