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 condition is not the only genetic condition in existence and is more likely than not irrelevant to OP.. Honestly there is really no need to be quite so shirty about a reasonable comment when you presumably know that.
Oh, and being corrected on misinformation isn't 'bullying'

Unbelievable! He DID tell you. YOU chose to only look briefly into it. Are you saying that if you had known that life expectancy was reduced, you would have ended the relationship with him.

Firstly, life expectancy is an average number. Life expectancy overall is about 80. Many people live longer than that.

Secondly, I just can't fathom how you can love this man and make it all about you. You're the one who sound horribly selfish. Through your long message, not once did you mention about what it must be like for him to think that he might not see his children become adults. It's all about poor you.

How about stopping making it all about your feelings and try to put yourself in his shoes?

It woukd be more useful if you said what the condition is. Otherwise we're anywhere from guaranteed early death to 'the odds are because they are based upon mortality prior to the development of new medications, surgeries and treatments, so everybody died'

From him...
Personally i think its totally reckless for him to have had children with you unless he or you have generational wealth...
He could live to 70 but equally he could die much earlier and leave you widowed with small kids (more likely imo)

From you
Honestly this wouldnt have happened to me.
I'd have fully researched it and gone into marriage informed. Theres a world of medical papers available at yhe click of a button

Would you have had kids with him if you’d known?

Agree. Saying her children have a 50% chance of having the genetic condition (which is what you said @Chiefangel without knowing its name) is simply not true.

Known what?

The OP had all the information she needed prior to getting married and having children.

She knew the name of the condition
That he might have a reduce life expectancy
That he had been through multiple surgeries and procedures.

What else was there to tell her?

How was he brought up with regards to information? When parents have a sick child it's not uncommon for them to downplay the seriousness of the condition so as to not worry the child and they tell them everything is ok and they'll be fine. If he's been in denial then he can't even admit to himself that he might die young, so understandable he was unable to admit it to another person because then it becomes 'real'.

With regard to the 'danger' he's but your future in, or the prospect of him dying when the DC are young, you need to remember that none of us are guaranteed a long life. My DH died in his 50s from cancer. He had thought he'd be still tottering around the golf course as an old man. Any one of us can become terminally ill or have a tragic accident that cuts short our life.

It’s natural to feel angry when it’s brought home to you in this way. It’s a grief reaction, mourning the life you could have had.

But you’re taking it out on the wrong person. He did tell you. You did look it up, but chose to ignore the bad news because he was “fine” and you were in love. Try to find another outlet where you can talk openly about your fears and feelings = counselling, group sessions or similar.

@Notmyreality In her opening post, @Anonymous1899 stated

"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"

You do that. In the meantime this trained doctor who also has a degree in genetics will stand by her statement.

You don’t sound like you love him. That’s what strikes me from your OP more than anything else.

Sounds like she should have dwelt on it.

He was a child when operated on and therefore his parents may well have presented an optimistic picture to him. He told you about the condition and the surgeries so you had as much possibility as he did to find out if those surgeries had changed his life expectancy. Unless you name the condition and the surgeries no-one here can tell you anything more so nor could he. Whatever doctors said to a child and his parents was probably along the lines of without surgery he'll die relatively young, with it we hope he can live a longer life.

Anger is often a response to grief and you are grieving the life you though you would have. But you dont know that his condition after surgery still means he'll die young. His irsk may actually be no greater than yours.

Maybe you need to do some more research now. Often there are support groups you can join that are better informed than the average gp.

If you love him, I don’t see the problem he should be allowed a somewhat normal life. You and your children aren’t going to die with him so why are you so pissed.

This is a difficult one. You are not wrong to have wanted the facts, he is not wrong for probably trying to look on the positive side and probably on some level doesn't believe he will die young. No-one does.

Would you have left him/not married him if he'd told you the worst case prognosis? If so there's no guarantee you'd have necessarily found someone you loved to have children with. And no-one knows what will happen, many a family have lost their husbands and fathers earlier than they'd ever want for a variety of reasons.

It's just too much of an emotional issue to say definitively he should have warned you he'd not live to see his children reach 30 eg, as he is probably hoping he will and he did tell you about his illness, and you did research it, he didn't hide that much from you.

It's a huge burden for you to bear, and him too. There's no right and wrong on this though, it's too complex a situation.

Unfortunately this is something a lot of children go through, even when their parent is perfectly healthy. It sounds like your DH's health is a big unknown. He may live a long time, he may not. We all face that uncertainty, some of us just don't have it so in our face like he does. He did give you the information.

Life expectancy can be variable and in some conditions it’s rapidly increased (cystic fibrosis is a particular case due to specific advances) but technically treatments are palliative because it’s not curative. The lack of data makes life assurance companies wary (have you tried specialist brokers) but doesn’t mean he’s not gong to live longer. I think specific counselling would be helpful for you

I'm so sorry you are facing this, but as others have pointed out, he didn't withhold information from you. Where do you sit in terms of your career/providing for your children if he did die? The lack of life insurance is scary - did you manage to secure any or was it simply no? I would be prioritising my career in this situation so that I could continue to provide for my children if the worst was to happen. There are so many unknowns and unknowables, that as others have suggested some therapy may be the best way forward.

Yanbu, you had a right to know

Ps my dc face loosing their super fit healthy dad with no known conditions until this incurable tumour, nothing can be done, it’s happens (see also Chris Hoy. It will be ok

The point is the OP did know. She just chose to ignore what she had been told.

She knew

The name of the condition
That he might have a reduce life expectancy
That he had been through multiple surgeries and procedures.

What else was there to tell her?

Do you think he was consciously witholding information from me? I feel fooled.

No I don't, I think it's something he has buried deep and not really thought about, and in all probability hasn't realised the actual seriousness of the situation of his health.

We are all able to deny are own mortality and we do it very easily

Yes maybe you do feel fooled. But he’s the one with the life limiting condition so I bet he feels a lot worse than you.

I'm sorry your dh has an illness what might shorten his life , but that is directed,at him not you .
It sounds like he give you the information of it before you were married and therefore it was up to you what you did with it .
You could ( and should ) have done your own researching into it is how it was likely to impact him and therefore you if you were going to be a part of his life .
It is only now because you can't get the home you want that you have woken up and smelt the roses . It didn't impact you until then so you felt no reason to look into it . Shame on you .