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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

AIBU to feel angry husband downplayed rare condition and life expectancy?

526 replies

Anonymous1899 · 16/03/2026 03:14

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.

OP posts:
FancyNewt · 16/03/2026 03:29

Yes he should have. But I can understand why he didn't. What an awful situation to be in.

PollyBell · 16/03/2026 03:30

So he has to suffer this, you decdied to have children with him knowing he had to suffer this and now he is still the one to blame in all of this, you were not able to do your own thinking?

I know it is MN so of course being a man he is always at fault but seriously

Neurodiversitydoctor · 16/03/2026 03:34

I didn't know what to vote, but I think he was/ is almost certainly in denial about his condition and long term outcomes. I am assuming he has/ had some form of congenital heart disease, it is true the earliest of these babies are now in their 30s/ early 40's so we just don't know. I don't think he hid anything from you, you had the information you chose not to research it and just assume it would be ok. I hope your husband stays in good health OP

Delphiniumandlupins · 16/03/2026 03:44

I expect he is in denial about his condition because he doesn't want to dwell on it. He's probably hoped that advances in treatment would occur. It is difficult to accept mortality when you're 70 or 80 years old, I can't imagine dealing with it at half that age. I wish the best for all your family.

3luckystars · 16/03/2026 03:48

It really depends what it is.

Is it something hereditary?

He did tell you. There is not more he could have done. Love is blind anyway.

GarlicFound · 16/03/2026 03:50

PollyBell · 16/03/2026 03:30

So he has to suffer this, you decdied to have children with him knowing he had to suffer this and now he is still the one to blame in all of this, you were not able to do your own thinking?

I know it is MN so of course being a man he is always at fault but seriously

Come on, she did seek information about it. Her DH said he'd be fine. There's still no data on longevity for people who had the surgeries in childhood.

Nobody gets engaged thinking "I must thoroughly examine my partner's health status and estimated life expectancy, disregarding anything they've told me themselves." If you're suggesting she should've investigated his insurance rating before marrying him / having children, I'll suggest you're being unreasonable!

Horrid situation to be in, OP. He may have had his head in the sand a bit, understandable if so. Insurance companies are always pessimistic - though there are specialist insurers who will probably take him on at a massively increased premium.

Sorry you're going through this. It's a cold, hard reality check for both of you Flowers

flapjackfairy · 16/03/2026 04:20

PollyBell · 16/03/2026 03:30

So he has to suffer this, you decdied to have children with him knowing he had to suffer this and now he is still the one to blame in all of this, you were not able to do your own thinking?

I know it is MN so of course being a man he is always at fault but seriously

nailed it.

CocoaTea · 16/03/2026 04:21

@Anonymous1899 i think your anger is coming from a place of fear.

Could you talk openly with your DH about the unfortunate reality you both face and put in place some practical arrangements to ensure stability for you and DC should the worst happen?

Counselling for both of you might be a good idea too.

I’d look into specialist insurers as mentioned by PP.

I am sorry you both have to face this. I hope the outcome for your family is better than expected.

blueshoes · 16/03/2026 04:22

PollyBell · 16/03/2026 03:30

So he has to suffer this, you decdied to have children with him knowing he had to suffer this and now he is still the one to blame in all of this, you were not able to do your own thinking?

I know it is MN so of course being a man he is always at fault but seriously

I have to agree with this.

OP, your dh minimised the condition either due to denial and/or inability to process medical jargon but you were told the condition and could/should have done your own research especially if there was any chance it could be genetic and hereditary and affect your children.

You would then have gone for genetic counselling and possibly IVF with embryo genetic screening and prenatal testing during pregnancy.

You assumed it would be alright and trusted him but ultimately you were taking a risk that you cannot turn back the clock for.

At this stage, you would have to mitigate the situation and speak to a doctor about your dcs. You should also look into how to financially plan for a future which may not include your dh beyond his fifties and possibly being his carer in the later stages.

Sorry this has happened. I can understand if you feel enraged with dh. It cannot be easy for him either but it is irresponsible for him to bury his head in the sand and put his wife and dcs at risk.

Truetoself · 16/03/2026 04:28

Would you really not have married him on the possibility he may not live beyond 50?

OhWise1 · 16/03/2026 04:30

He did tell you, but you refused to listen!

Usernamechanging · 16/03/2026 04:35

In sickness and in health, surely?

Zanatdy · 16/03/2026 04:39

Why didn’t you speak to him more before you had children with him? He didn’t hide his condition, yes he may have downplayed it, but i’d have researched it, most definitely before having children incase there is a genetic link.

Your post comes across as incredibly heartless. It’s all about how this will impact you. How do you think your DH feels, knowing he may not live to see his kids to grow into adults? I think YABVU

Lmnop22 · 16/03/2026 04:44

He told you everything he knew - he chooses not to know much because it likely terrifies him to think he will die in his 40s!

You had the name of the condition and should have looked it up, even if just to know any risks for your kids and to better support your husband and predict his future needs.

YABU. Stop expecting to be spoon fed information and take responsibility to inform yourself!

givemesteel · 16/03/2026 04:46

I suspect he didn't discuss it with you as deep down he knew he would lose you, ie you wouldn't marry him in those circumstances.

Which sounds like it is true?

I think he was irresponsible to bring children in to this world having not discussed the possibility of him not being around to see them into adulthood. Is it genetic?

It doesn't feel like the foundations of your relationship are very strong. I think you need professional help to work through this in the interests of your children.

He should also see a medical specialist about his prognosis so you can plan accordingly.

Hummingbirdyy · 16/03/2026 04:48

Blimey - you do realise he's the one who has to face the reality of dying young. He doesn't talk about it because he is in denial - he told you that. He didn't hide the illness from you - you could have researched and asked him questions but you didn't as you were probably in denial too.

Now that you've been refused life insurance, the gravity of the illness is now hitting home and you want to blame him.

Yes, he probably should have told you about the life expectancy part too but if a quick Google of the illness gives you this information then you are definitely being unreasonable.

Show some empathy towards him, take some responsibility yourself and question whether you were in denial too.

99bottlesofkombucha · 16/03/2026 05:18

PollyBell · 16/03/2026 03:30

So he has to suffer this, you decdied to have children with him knowing he had to suffer this and now he is still the one to blame in all of this, you were not able to do your own thinking?

I know it is MN so of course being a man he is always at fault but seriously

She didn’t know. Isnt that the whole point of the thread?

im sorry op i dont quite know which way to vote. I would feel as you do that he should have been much more honest, but he doesn’t sound like he’s properly engaged with it himself, it is a massive thing.

brainstories568 · 16/03/2026 05:27

I am your husband in this scenario, and I am fortunate that my husband decided to propose, marry and have a child with me regardless of my "life expectancy" -the reality is that anyone could get hit by a bus and die, not just those of us who have a medical conditition that is classed as life limiting.

In your husband's case, it is likely that he is minimising it because there is very little (if anything) he can do about it and he doesnt want to dwell on it every day. Yes, he probably should have said that it could prevent him from getting life assurance in the future but quite literally any medical conditition would/could do that, not just potentially life limiting ones, and surely you would have gone ahead with your life together anyway?

The only thing which you should be concerned about if it is hereditary. If it isn't then whilst you are hurting right now, it doesn't sound like he has deliberately tried to "fool" you and he minimised it as on a day to day basis it means nothing (like many life limiting illnesses - we often can get up from our death bed and live a normal life) so he didnt want you to worry because he loves you.

You also need to remember that everyone deals with things differently. If he was diagnosed as a child then perhaps he didnt really know how serious it was until much later, or maybe his parents did tell him everything and he didnt feel the need to tell you when he first met you (as that is quite weird!) but then the longer/deeper the relationship gets, the harder it is to reveal a 'secret' which isnt a secret in a bad way at all. It just requires management - particularly with things like wills and power of attorney, which are things you should have in place anyway if you are married with young children, buying your (first?) home together.

You also said "there are no statistics on people who live beyond 40s/50s as medical intervention only started in the 80s" - again, if there is no data, then I can see why he would be denied life assurance for your mortgage - but that doesnt mean that he "definitely" won't live for another 30 years or more, and you also can't say for sure that you will still be around then either.

Chiefangel · 16/03/2026 05:39

Without IVF, your kids have a 50% chance of having the condition themselves if it’s hereditary. and it’s kids plural ! You got into the relationship knowing the name of the condition so don’t put all the blame on your husband. I have a genetic life changing condition and had to have genetic counselling, screening and IVF. Stop blaming your poor husband. He has enough to deal with. I cry every day. I hate it but I can’t change it.

ArtAngel · 16/03/2026 05:41

OP I am so sorry you and your DH live with this uncertainty and that the Life Insurance decision has thrust it in your faces.

However: it isn’t necessarily that they “basically don't believe he will life for another 30 years” it is that the risk is present , and because of the lack of data you describe (only monitoring since the 80s etc) they don’t want to accept risk. Their decision is not a medical diagnosis, it is about commercial risk to them, and insurance companies avoid risk.

It’s still a big thing to get your head around but in truth you also carried on in denial, because he ‘looked fine’ even though you did the research. Because you loved him and wanted a life with him.

It must feel scary, being angry at a situation and looking to blame helps us feel more in control, less helpless.

But you and your DH have a life to lead, wonderful children to support.

Would counselling help you both? Help you understand denial, Come to terms with risk , live your lives as fully and healthily as possible , while making the best contingency plans that acknowledge the risk?

BollyMolly · 16/03/2026 05:41

YABU. Your feelings are coming g from a place of fear, which is valid, but it’s horrible of you to be angry at him about it. He had his own feelings to deal with, and what he aid will have been influenced by the way his parents spoke about it.

You have always been free to go your own research. If you didn’t, that’s on you.

ArthriticOldLabrador · 16/03/2026 05:45

He told you the name of his condition.
None of us is guaranteed a long and healthy life and any one of us at any time could be affected by a life limiting condition.
Do you actually love your husband? It’s not his fault he was born with this. Imagine living your life knowing it’s going to be cut short. I expect he’s terrified.
But never mind, on top of all that he’s got an angry, resentful wife to deal with. 🙄

BoldnessReborn · 16/03/2026 05:51

He will have grown up with the approach of focusing on life and getting on with it. Very likely those around him did the same. Meanwhile, life insurance don't "think he won't survive 30 years", they just won't bet on it, which is very different. I can't get life insurance because of my cancer, which is not curable, but my very honest and upfront doctor just laughs and is sure he and whoever follows him after he retires will look after me into my old age. Not being able to get LI is a shock and a disadvantage but not a sign that life is over, just a known issue for people with complex health problems.

AnyoneWhoHasAHeart · 16/03/2026 05:54

Statistics mean nothing. And google is the work of the devil.

If it was a medical condition such as huntingtons where we know what the prognosis is, as well as how that plays out that would be one thing. But one which required surgery? Nope. There is absolutely no way of knowing what the prognosis is especially 30 years down the line.

Even if he was told 30 years ago that he might only live into his 40’s or 50’s (so that’s a twenty year reach there for starters, 40? Or 59???? Hmmm). The advances in medical science in the past 30 years have been immense.

I was born with hypertrophic cardiomyopathy. Wasn’t actually diagnosed until 9.5 years ago.

If you look on google, the prognosis for someone diagnosed with cardiomyopathy is five years after diagnosis.

And the reason for that is simple. Most people who are diagnosed with cardiomyopathy are diagnosed at the post mortem, after they drop dead. That skews the figures somewhat and leads to those statistics including on pages such as the British heart foundation.

But dig deeper and the reality is that most people who live with especially hypertrophic cardiomyopathy are never diagnosed and live completely normal, and symptomless lives. And sometimes something happens which leads to a diagnosis. And even then, diagnoses during life is the best thing which can happen because then there is medication, which is ever advancing, to mitigate symptoms etc.

Last year I had a heart transplant.

My new prognosis is 15 years.

Except that too is based around the fact that one in ten transplant patients will die in the first year. Others will die from other conditions post transplant.

And then there are those who live normal lives for 20, 30, 40 years.

The truth is that we are all going to die.

It’s just that in some cases we get an insight into how that might happen.

But there are no guarantees. Just because someone was diagnosed with a condition which might kill them in 50 years time doesn’t mean that’s set in stone.

Your clock is ticking from the moment you’re born.

And given he’s healthy now there is 0 reason to know that he’s going to die in ten or twenty years time. And just think about that, 40’s or 50’s isn’t exactly a good guess is it? 59 is almost 60, that’s a vast difference from dying at 41, so those figures are ambiguous at best, and they come from 30 years ago.

And there’s also no telling whether it’s that condition which will kill him. Any one of us could get hit by a truck tomorrow.

Assuming you drive the chances of being killed in a car crash are not insignificant.

And yet people continue to live their lives.

I agree that if the condition was genetic that should be considered at the time. I didn’t know about my diagnosis until after I’d had children. Had I known I likely wouldn’t have.

Ironically my condition is genetic. I’ve inherited it from somewhere, I don’t know where as my parents have chosen not to be tested.

They’re in their 70’s and feel that it achieves nothing, which tbh it doesn’t. I already had the condition, them being tested wouldn’t have changed that, and they[re both in decent health.

And what does it achieve by being angry at him for something he literally had no idea about?

So you divorce him and then he lives into his 80’s while you get hit by a bus tomorrow?

I’m curious why you haven’t said what this medical condition is, is it because it’s easier to generate sympathy that way whereas if you disclosed it you would come across people who have lived through it and can tell you the truth?

nomoremsniceperson · 16/03/2026 06:00

OP, can your children inherit the condition? Is it genetic?

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