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.

You seem naive. Of course he can’t get life insurance. It’s ridiculously easy to be denied life insurance. The only kind either I or DH can get is guaranteed coverage through our employers.

When I found out about my husband’s condition I started reading. I wanted to understand so I set to learning. I didn’t expect him to just explain everything.

As for life expectancy, that isn’t always very clear. My husband’s at the time we got married was zero according to the textbooks. I’m simplifying here, but the problem with rare conditions that have only recently had treatments is that the life expectancy only goes out as far as they have had time to study. Previously, people with his condition had managed X years and he had passed those X years. However, the treatment had improved greatly and they didn’t really know how long he would get. Every year he becomes another year of hope that someone getting treated now gets to looked toward. Truthfully, we could get notice tomorrow that his health is declining or he might live to be 100. His doctor’s have no idea what is going to happen. Medical advancements are amazing and scary and you just have to accept the unknown and the time you are given.

Conditions that have been considered incurable or life limiting may now not be, due to advances in treatment. Does your husband have reviews of his condition?

That’s not how it works on Mumsnet. Wedding vows only count if it’s in the woman’s interests on here. As soon as they get sick, bin them off. If you don’t want to be a carer, bin them off. If they become financially worse off, bin them off. If they make a mistake, bin them off. You get the picture?

He's your husband now. He shared the information with you before you married.You had every opportunity to do your own research, and perhaps you should have dug deeper. Perhaps this is what he expected you to do.

Anyway, he is now your husband and the father of your children. You're together. You have to work this out together, not blame one another and retreat to your separate camps, each believing the other to be in the wrong.

That's easy to say, but OP and the children are unprotected via life insurance because he's uninsurable. Not to mention she thought she'd be growing old with him and he 'knew' that wasn't the case. That's very different than becoming ill down the line or being in an accident ...

He should have told her.

She knew what the condition was So why can't she have found this out

I really don't understand what it is posters who continue to say he should have told her think he left out? Can you explain what he should have told her. From everything the OP has said it sounds as if she knew exactly the same as him regarding what the future might hold.

He should have told her it was considered a life limited condition and statistically, he wasn't expected to live much beyond his 40s ... so OP could think long and hard about bringing children into the world with him and herself marrying someone who would likely leave her a widow at a fairly young age.

I’m really confused as to what more you wanted him to say OP. He told you he had this condition, did you probe for more info at the time?. If there wasn’t much info pre ChatGPT then he probably knows as much as you do. You say you’d have married him anyway so I think maybe you’re focussing on the wrong thing.

I wonder if perhaps you might benefit from counselling to come to terms with the reality of his condition, something you will probably have glossed over in your youth/ throws of
love and passion. Grieving the mortality of a living loved one is hard - it’s called anticipatory grief and there are people who can specifically help with this scenario. What you’re describing is a common reaction to a very sudden realisation to the reality of the family’s situation but it hasn’t happened yet and it might not for a very long time. Something else might get in the way long before his condition does, you just don’t know.

You cannot predict the future and living every day as if it’s your or his last is the only way to go, ruminating on the when of the inevitable (for us all!) will only lead to misery.

He told her the name of the condition and the OP knew it was life limiting from a quick Google at the time. What good was him confirming this and telling her it was life limiting going to do?

Why wouldn't she look this up before marrying him and having kids though? Surely after being told that he had the condition you would especially if there was a chance of passing onto kids

That's the weird thing she admits she looked it up and knew it was a life limiting condition. She knew this before they got married.

Well she can hardly blame him for " not telling her then

I would be furious actually, that there weren't serious conversations before having children about a) the fact they could have inherited it (lucky they didn't) and b) that you might end up being the only parent to young children and so need to prioritise your career over his for the long term, but also that it will affect your ability to get a mortgage or life insurance. DH and I did the whole life insurance thing when I got pregnant and a few years later wills and power of attorney stuff.
It's 100% sticking his head in the sand to ignore the implications of the diagnosis, and that's totally ok as a single person, not great as a husband but IMO absolutely not ok as a father.

Bloody hell, OP! You're all heart, aren't you?

She also had the kids knowing this too .

“The doctors have told me my life expectancy could be 40-50 years”

You would talk - about who works more when the kids are young, about future earning potential, about how to get a mortgage or if you even can, about options for life insurance and pensions, basically worst-case scenario planning.
Wills, and legal guardianship for the children if the OP were to die, leaving the DH as a sole parent with a life-limiting condition....

Informed consent

But he wouldn't be telling her anything she doesn't know

You seem naive. Of course he can’t get life insurance. It’s ridiculously easy to be denied life insurance. The only kind either I or DH can get is guaranteed coverage through our employers

Yes, I have 2 friends that had cancer & heart issues in their 20s. The life insurance premiums were far too high, luckily they get good death in service. It’s weird how so many think life insurance is a given.

But she knew he had a life limiting condition. Him putting a number on it doesn't change the fact she knew he had the condition and that it was life limiting.

but also that it will affect your ability to get a mortgage or life insurance

You do not need life insurance to get a mortgage

Did her dh know that? You don't know that's the case.
The information from the OP is that the diagnosis and treatment was whilst he was a baby, or very young. No suggestion her DH had any ongoing medical oversight (which is odd but 🤷‍♀️).
Yes, he frustratingly stuck his head in the sand, but he didn't hide his diagnosis.

OP took that information and stuck her own head in the sand.

Extraordinary post @AnyoneWhoHasAHeart , thanks hugely for posting this 👏👏👏💐