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.

guaranteed high risk is not how the word risk works.

There is a significantly above the average person risk, as told him by doctors, the details of which he withheld from her on purpose.

The presence of a condition requiring multiple surgeries with a lower life expectancy that exists in him but not in everyone else.

No. He didn’t.

He told the OP about the condition.

He told the OP about his surgeries.

At no point will he, as a child, have been sat down and told “you’re going to drop dead.”

In fact nowhere has the OP even said that he’s going to drop dead, so you’re actually the one who’s lying at this point.

People are making things up here to suit their own narrative, because he’s a man, and therefore must be responsible.

He was diagnosed with some mystery condition which the OP seems reluctant to divulge here which makes me think this is likely just a hypothetical scenario anyway.

But that aside, he was diagnosed with a condition, had surgeries, and now lives a normal life.

OP has said nothing about him having checkups, appointments, medications. In fact he is living such a normal life that she overlooked everything he said until he couldn’t get life insurance.

He is not to blame here.

He had an illness as a child.

It sounds as if surgery fixed whatever was broken, if it was that serious then there would be meds and appointments and they would live daily with this illness but they don’t. Which makes me wonder even more….

When I had interventions for my heart I was told I would still need a transplant one day. And then I went on to live a normal life.

But I was still on medications. Still attended appointments. But even with those, as I lived a normal life, the longer it happened, the more I thought that the intervention wasn’t wholly tested yet. That the meds had good form, that maybe it wouldn’t happen.

And then it did.

I told people I would one day need a transplant, but it wasn’t a certainty until it was.

And again.

nowhere has anyone said this man is going to drop dead. nowhere

So quit the bloody drama and the accusations and just accept the reality that people die. It’s a fact of life as it goes.

OP, you’re saddled with a man you can’t buy a house with or get life insurance with so he can at least provide his children with security should he die.

I can see why you’re angry, he tricked you into marriage and kids to get a carer for life.

The OP was told and the OP made a choice the OP was not saddled with anything. and is the OP his carer?

and why do men have to provide are women not capable?

She was not told how life limiting his illness is.

The children have two parents who should be able to provide them with a house and life insurance.

He can’t do this because of his illness, so OP now has this burden on her shoulders.

He should have been honest with her.

I think you've been in denial yourself also, OP. If someone told me they had a rare condition I'd be immediately Googling it. You both need specialist counselling.

It doesn’t really sound like he hid anything from you. I would have researched everything I could. Are you able to tell us what condition he has?

Dear god.
I'm assuming you posted without actually reading anything written by the OP?

If you can’t find information on Google about a rare disease and it only comes from ChatGPT, there’s a good chance it may not be reliable or even real, since ChatGPT doesn’t have direct access to live data and doesn’t “use” Google in real time—it generates answers based on patterns in its training data. Because of this, it can sometimes produce confident-sounding but incorrect or made-up details

That’s why it’s important to treat its responses as a starting point rather than a final source of truth, and to always ask for sources or verify the information independently through credible websites, articles, or official references for this rare disease

As someone who grew up with the knowledge I could have inherited a life-shortening condition, it is extremely difficult to face up to the reality of this whilst attempting to pursue a normal life, especially trusting people to stay with you long term. I never kept any partners in the dark about it, but neither did your DH. Perhaps he was relaying to you what his parents told him - my parents also downplayed the seriousness of the condition where I was concerned to alleviate their own worries. I don't think your DH has done anything wrong, you could have researched his condition more thoroughly if you were concerned. When you think back to the person you were when you got married, would you really have ended your relationship over a potential future outcome? Do you think your DH doesn't deserve to have a family life because of his health? What you need to do now is mentally and practically prepared yourself for the fact that you might lose him earlier than you'd hoped, and then get on with enjoying your life together. Anyone can die young without prior warning. At least in your case if it happens you won't be blindsided.

No one was tricked, no one had a plan to get a carer for life, you've made that all up. The OP knew about his condition and ignored it because he looked ok. It's literally in the OP:

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

He never framed it as 'life limiting'

You Googled it yourself- you would have seen that.

I can't believe that after pages and pages of people pointing out how you've underplayed it yourself and understood why that would have been, you're still intent on blaming your husband.

Do him a favour and break up. If his lifespan is limited, let him find someone who loves him.

The OP was aware before marriage it was life threatening.

The person you just responded to is the OP.

But he told you what it was.

Forget Google and Chatgpt, you had the opportunity to go to your GP and ask questions from the moment he told you of his condition.

When did your DH last have contact with a medical professional specifically about this condition? Was it when he was a baby/child?

That's a really tough situation, OP. I'm pleased your children don't have the condition. I understand how this new understanding has shaken you - you were planning for a long life together into retirement and potentially becoming grandparents and now have to consider that you may be facing raising your children to adulthood alone and support them through the grief of losing a parent.
But you have only just found this information out through Chatgpt. It may be that he didn't have this information either - the medics from his childhood didn't really know the outcomes and may have shielded a child from the reality, you say it's a rare condition and his GP may not have full information either.
Does he have a specialist? In his shoes I would want to be finding out up to date prognosis and if a shortened life expectancy was likely to have counselling or therapy to support me and my family through that.

If specialist don't know, his own surgeon doesn't know.... how the heck would you expect your DH to know?

Also on the kids front, that's partially on you too. There's zero chance I wouldn't have done significant research, called IVF specialists fir screening, asked to speak to his consultant about the likelihood of it passing down before trying for children with this man.

My grandmother and mother had a hereditary cancer causing gene, I got tested before my DH and I decided to have children. Thankfully I didn't have the gene but if I had we would have either opted for IVF with screening or no children.

You knew he had this disease too. You can't blame chat GPT for not having the info.

What a way to blame the woman. Now she has to Google things about her intended husband instead of him telling her

As a society we don't know how to handle conversations about life limiting illness in children. I did some reading on the cancer forum here after a friend's child was diagnosed and saw things that suggest even the oncologists sometimes can't cope with these conversations. There were some sad stories where they had completely failed to convey the seriousness of the illness or give realistic prognoses to families.

I still think you're better off getting advice for medical professionals over chatGPT.

What else do you expect him to tell her?

He told her the name of the condition
He told her he had surgeries and medical appointments as a child
She knew it could be life threatening.

The OP has admitted that no one really knows what the outcome looks like for people with this condition, and that there's limited information online.

He has given her all the information he can. Yet people are still arguing that's not enough.

This seems to be exactly what a lot of posters feel people with medical conditions should do when dating and forming relationships - once anything gets serious, hang a leper sign around their necks and present their partners with all the reasons they're a physical dud and not marriage material.

That's really what it boils down to. Unless you're in top physical and mental health, they think it's your responsibility to present your partner with a full list of worst-case scenarios and reasons they shouldn't marry you, actually.

I guess ideally anyone with a serious medical condition shouldn't even have the temerity to date at all?

All the language around how "deceptive" or even "coercive" he was is simply foul.

This is really cold and totally misunderstanding of the impact of a life limiting illness on mental health and human behaviour.

He has not lied, he told her he is ill and what was wrong with him.

You very clearly have no idea how a terminal illness impacts. You are very lucky. I really hope it never happens to someone close to you as your lack of understanding, lack of emotional intelligence and total self centeredness is awful. Nobody who is dying deserves the added pain of you.