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 can't get a critical illness insurance so I guess my husband is an idiot for marrying me.

But you’re saying she should have Googled it? (She did).

So what's her provlem?
She wants the man to know more than the medics and more than actual research knows?

The OP said it was life threatening.. her words . You are so nasty about her DH but you think that's ok. I've hit a nerve i think.

Yes, I’m saying if something is going to affect the whole course of your life, including children and marriage and family, then yes, you probably want to research it yourself, and way more than just a quick Google. The amount of people who are uninformed about their own conditions OR in denial is quite staggering. And I have to admit, like many others I’m wondering what disease is so rare that his consultants don’t know what to expect for an outcome? Like I said, I’ve got a one in a billion disease combination, and my consultants are STILL better than that. So either

1. he has really bad consultants, or
2. he’s in denial and has lied, or
3. he has one of maybe 7 diseases on Earth where he’s the only person in the world who has ever had it or anything even like it, or
4. possibly that the information was always available online, though maybe not on the most basic webpages.

All three are possibilities; I have no idea which one is correct, and I’m not blaming OP. I’m just saying no, you cannot afford to be uninformed about something that will affect your whole life.

Denial is how those of us dealing with potentially life limiting illnesses get through the day without completely falling apart. I'm shocked at your attitude towards your husband. You come across as pretty cold and heartless, solely focused on how it impacts you (and your kids).

I disagree. He couldn’t tell her what he didn’t know and even his medical team doesn’t know.

No, she didn’t say it was life threatening, she said ‘it did seem life threatening, seeing as my husband looks 'fine' on the outside I didn't really dwell on it’ and also that ‘Whenever we have talked about it, he says 'I'll be fine'

Her husband is the one who would have been told by his doctors and specialists about his prospects and he should have shared that info with OP instead of ignoring it.

You are so nasty about the OP when she’s the one on this thread, not her DH.

Surgery for his condition only came about in the 80s

People who do have this condition are alive and the oldest are around 40-50 years

There is no data on anyone above that age range as those born before the 80s immediately died at birth

So we are in a wait and watch situation. Which I wish he would have been more clear about.

The way he presented it to me is that he's had surgery and he'll be fine.

But imo no one knows. Not even the doctors as there is no data beyond those who are 40-50 years old today

There's no certainty that he will die at 40 or 50. But judging by the info I have, it's probably unlikely he will live till his 70s-80s
And this is what I feel sad about because I didn't know / realize this part

And yes I know anyone can get an illness at any point in time, but if you are born with one, I think it's important to be really transparent to your spouse about it which I don't think he was

The way he presented it to me is that he's had surgery and he'll be fine.
But imo no one knows. Not even the doctors as there is no data beyond those who are 40-50 years old today

He definitely mislead you. No doctor would have told him that you’ve had surgery and you’ll be fine now.

Yes but we should have had a conversation around this which we didn't have
And he should have been the one to bring it up. I wasn't there and wasn't a part of his life when he was a child, teenager or young adult with this condition.

The worst part is he also misled me on something else before we got married

This has nothing to do with his health

He withheld information from me. And I only found out a year later, after we had our first child.

So he has form, this type of person often does.

Is he actively trying to save money for his dc in case he does die? What is he doing to make his dc’s lives secure?

I think this is an incredibly hard thing that few people can understand @Anonymous1899 . There is no decision that is the right decision - if he told you he was definitely going to die in his 40s, that would have been false as well. It’s unbelievably fucking hard to be living at the same time as the science, but I mentioned my condition to give you a bit of hope. Before the 1950s, everyone with it died and it was a death sentence. Now, only a short time later relatively, it can be managed (yes, I still won’t last to 80 probably, but with all my body’s shite, I wouldn’t want to).

So it may be that he’s the first generation that “survives,” which yes, makes it hard to say for the future, but as someone else mentioned, no guarantees in life. He could easily outlive you; or you could both get hit by a bus tomorrow. Just be prepared for the possibilities as much as you can, and VERY IMPORTANT - in the absence of medical proof (yet), do not assume the worst possible outcome. It’s easy to do (assume the worst), and even easier to say not to do it (I don’t pretend it’s easy at all!), but it’s so important.

One has to take responsibility and obtain information from medical professionals preferably. The OP was aware it was life threatening …you keep denying this for some unfathamonable reason . It is transparent that the OP did not seek professional advice…I feel for her but cannot understand why she didn’t do so especially before conceiving. She was given information but stuck her head in the sand. Probably because it was easier to do so , which I can understand . .who wants to dwell on unpleasant, worrying things. It’s easier just to get on with life and put it to the back of your mind. Anyway I think you n I should leave this here as we will never agree. All the best

@Snowyowl99 @nomas When trying to read a thread of the messages between you two, here’s a hint: when the initial message on your mini-thread is so far back that trying to read it looks like the image I’ve attached (which is of your mini-thread right now), you might want to just give it up as a bun fight.

maybe you should read my message where I say to Nomas we are never going to agree so should just leave it here and wishing her all the best. Hardly a bun fight and nothing to do with you in any case ….have you too much time on your hands

Happy to leave any ‘bun fight’, I’m only here to support the OP.

But yes, I hate when quotes get that long.

😂

Yep, none of my business, or the other 10,000 people who have read it. The “show comment history” button only exists because a few of us are nosey bitches. Of course, I’m sure you’re not! You’re just reading about other people’s problems on MN because…? I mean, it’s not your business either, is it 🤷‍♀️ And yes, I have too much time on my hands; I have a life-limiting illness. Even if I didn’t, that was a particularly cunty thing to say.

Well, if I had to make a judgment based on both your responses to me…

I get it @nomas - sometimes we all end up stuck in one of those endless reply loops that we can’t get out of. But thanks for understanding about the long quotes.

@Snowyowl99 Uh, no comment?

Reported your language.

I was going to say you weren't being unreasonable because he did tell you about the condition. But now I'm torn. And you could have looked more into it. Many many people haven't fully come to terms with their health conditions and treatment is always changing. In a perfect world he would have shared the full extent but it doesn't sound like it was active deceit. My wife has a few conditions and I learned about them earlier on

😂

”Could start a fight in an empty room” is coming to mind.

Ha ha..I least I don't use the c word. Go away will you!!!