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 should have told you about the insurance issue

So if there is limited data then that's just it, there is limited data. The rarer the condition, the more limited the data is. There is no definite information that he withheld.
Maybe you can try to book an appointment with a specialist in his condition and have a discussion with them? It may make you feel better to know that they also dont have certainty for you.

He owns a crystal ball too? My husband didn´t know they wouldn´t insure him until he requested insurance in his middle 40s. As his whole life he was treated on the state system he didn´t need any insurance of any kind. I think the ops husband found out at the same time she did.

OP, I suggest you both speak to an actual specialist (definitely not Chat GPT!) to fully understand the condition and potential treatments and take it from there.

it is all a bit of a shock to you op,
try and find some supportive groups perhaps

He didn't know about the people insurance issue till it came to it. So you can't blame him for that

apologies then

i guess he is learning as much as you are.

I agree with this poster.

Chat GPT has given me more information than I've previously had. There's hardly anything on the internet as no one know what could haopen to people with this kind of condition
I doubt specialists will be able to know. Even the doctor who operated on him doesn't know

I am ineligible for life insurance because of a genetic condition I didn't even know I had for a long time. There's something about the cold administrative reality of a life-limiting condition that's qualitatively different from the emotional aspects. Even though you know you may die young or have quality of life issues as you age, you also know you might not, and if you understand statistics at all, you know how they get skewed by the range of outcomes. Ultimately, you can't live your life worrying about how and when it might end. But then suddenly the computer says no because of something you've learned to live without worrying about, and it feels like a catastrophe right here and now. And you also have a double problem, because you know you might die young, and yet you can't protect your family from the material consequences of that. I know OP says it's not about the house or the insurance, but it wouldn't be normal not to feel the impact of that reality. I don't blame you for being upset, OP, but I also don't blame your DH for not really preparing you for this moment, as the mere fact of the diagnosis won't have prepared him for it either.

He told you about his condition.
Sounds like he doesn't know much about it, and from your research it sounds like nobody does.
I'm not sure what more he could have done.
You're BU to be angry at him.

This post is not about me. I do genuinely feel bad for him about his condition. I chose to be with him knowing he has this.

What annoys me is why he didn't bring it up when we were trying for kids. Why didn't he tell me that there may be a risk that our kids would have it or that there's a risk that he might not live long

Thankfully ours kids don't have it

Agreed

Goodness you are not the victim here! He told you what it was and you chose not to dwell on it. Perhaps he hasn’t particularly researched it as he wants to focus on living his life. Be angry at the illness by all means, but not at your husband.

Also, the marriage vows state ‘for better or worse.. in sickness and in health’.

@Anonymous1899 I have a medical condition I had multiple surgeries for as a young child. I know what happened vaguely to me but I have no conscious memory of any of it. I did talk with my husband about it as he had seen my scars, but I don't remember it being a big talk. It doesn't affect my life expectancy but there was a chance of my children also having it (although it is not serious usually if caught early and they did have additional testing for it because of the family link). My daughter did end up having the same condition and I did wonder if I had maybe talked about or thought about it enough with my husband. The guilt that she got it from me was there while she had her treatment, but now she is effectively cured and also young enough to have no memory of it. It's a difficult one because I understand how your husband has approached this. It's easy to feel very far away from a condition that was dealt with in a time you have no conscious memories of and that seemingly is having no impact on your life as you know it.

There's not much info online

My husband was born with bladder extrophy, and kidney problems. He has had numerous operations when he was younger.

He grew up not asking questions, not wanting to know about his condition, not being able to play sports in school due to a stoma, having to use a cubicle in the toilets because he was embarrassed about not peeing like a normal child.

He hated it, he hated his scars from the operations, basically he had a very sad childhood. Not many girlfriends, and hid in his work/job.

When we met, he was very reluctant to talk about his illness, or allow me to see him naked etc, had a real phobia of himself. It took a lot of love and trust for him to let go and truly be himself with me.

So I totally understand your husbands reluctantancy to talk about his issues. My husbands parents were told he wouldn't live passed his 40s with the stage of kidney diease he has, but here he is aged 58 this year, still going, still healthy enough to work and not need dialysis yet (kidney transplant isnt available to him due to other issues)
He did tell me all this but never went into great detail, i was so in love i didnt give it mych thought, as i still dont. I live each day blessed to have him.
He cant get life insurance either, bummer but it is what it is...
I could never be angry with him, its not his fault.

Ask yourself .... would you have said that u didnt want to marry/commit to him if you had known the full extent? If the anwser is no, thrn ask yourself, do you really fully love him?

I know that he's the one with the condition but he should have been the one to explain that that would mean for me or my kids down the line. He probably didn't want to because he was in denial or didn't want me to leave. I wouldn't have left but I would have wanted to know more about what I was getting myself into.

This is on the health front. But he also had some things from me before marriage nothing to do with health. I only found out after and forgave him for that

This health thing isn't helping.

And I agree too. OP you make it sound like you only married your husband for children and financial security.

I would have said yes
I would have just liked to know a bit more about what I was getting myself into

Where do you think Chat GPT pulls its information from?

Its not about the fact that we can't get a hold. Far from it.

It's about the fact that I worry for my kids.

There isn't much information about his condition online so while I did do my research theres no knowing how this will develop

How would he know if you can't find much on this mystery condition in chatgpt?

Hospitals very commonly dismiss stuff about long term prognosis, especially with children, with a 'he's fine, we'll just monitor, no reason why he can't get married and have children in thirty years'. Not just for emotional reasons, but because treatments are unrecognisable in three decades.

They dont say 'no, he'll definitely be dead within a couple of years, he'll have to formally notify a girlfriend and get permission for unprotected sex'.

I presume it's a congential heart defect?

If so, his outlook is very similar to most people's with a congenital heart condition - most think their life expectancy is normal. Many also haven't had a conversation with a HCP about it either.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10342419/ pmc.ncbi.nlm.nih.gov/articles/PMC10342419/]]]]

I also think from a mental health perspective your husband's outlook is best - you can't go through life focussed on your death. There could be any number of treatments available in 20 years time.