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 told you the name of the condition so you had the opportunity to access everything before getting married. He doesn't know for sure how long he will live.

You were both in denial.

He didn’t hide anything. Getting angry because he didn’t spend long enough emphasising to you how he may die young, while you felt hoodwinked by his outwardly healthy appearance, is the ultimate narcissistic response to the fact your DH has limited time.

When you’re young you feel
impervious and want to deny these things. But he never denied anything. Would you have not married him based on his ability to get mortgage insurance or not?

you sound callous, heartless and insensitive OP

I think YABU. My husband also has a rare condition which meant he was expected not to live beyond his teens. He is now in his 50s and still couldn’t get life insurance for the mortgage but had sufficient death in service benefit to cover the mortgage if needed.

The fact that your husband can’t get life insurance doesn’t mean that he won’t live a normal length life - if he is being regularly monitored by his healthcare team, he may well have a better chance of doing so than many other people.

If he is being regularly monitored by consultants, it may be worth now seeing if you can go to an appointment with him, or have an appointment arranged with a counsellor in the team - many rare disease centres in the UK would have access to this so hopefully it is the same where you are. At least that might give you and idea of what his condition involves and how it might progress - including what future treatment options there are. Treatments are also coming through all the time, so there may well be far more options than there were in the 1990s.

Cystic Fibrosis?

Hang on, we don’t know what the condition is. It’s certain not the case that all conditions are inherited or inheritable.

The treatment for CF usually causes male factor infertility. This can be managed with IVF but IVF would not be done (in the UK anyway) without a lot of counselling at which many of the op’s issues would be throughly aired.

Not being funny you could be hit by a bus tomorrow 🤷‍♀️

I think I'd be upset if my husband had a life limiting condition that he knew to be life limiting that he hadn't told me about fully. I'd be a lot angrier if he knew that the life limiting condition was genetic and had failed to say so before we had children.

As for "you could be hit by a bus", well, yes. Any of us could be the victim of any number of accidents. The difference is that the person with the disease not only MIGHT be hit by a bus but DEFINITELY has a fucking disease.

I think so long as he told you the name (which he did) then he discharged his obligation to you - I would have researched it to the nth° and also right now I would be finding the leading specialist and researching the latest statistics. There’s some really good posts here about the applicability of statistics and longevity cases like this.

Separately and pragmatically he now needs to be laser focused on finding a job with a large company with generous death in service benefits even if that means taking a more junior position. Or the NHS (or public service where you are) - doing anything, changing lightbulbs, so long as you’re an employee. Biig work places often offer (eg) 6x salary which in many cases is more generous than many life insurance policies.

As a mum with 2 children with a rare disease and little life expectancy It’s such a tricky one. Whilst I get your frustration with him and not telling you how serious it can be or what the future may hold. I also get the fact he doesn’t want to dwell on it, having his life shaped by what it “should look like because that’s how it is on paper” not how he wants it to be, being judged, labelled and defined by a condition that he has genetically but fortunately enough for him it hasn’t yet taken over?
my 2 children are not defined by their condition, I don’t tell people about it because I don’t want them to pitty them, their both strong and amazing in their own way and their still not following the footsteps the paper tells us they should…. Their still alive for starters but it’s Because we don’t define them, their pushed and they thrive, I treat them exactly the same to my others and I think that’s made a huge difference and they achieve things they medically shouldn’t be able to.

I get it from both sides and I hope you both manage to get through it. But your husband is one of a kind, don’t let statistics get in the way, they’re nothing if he’s doing him and he’s well!

I don't understand why you think he lied. He told you the name of the condition he was open about all the surgeries he had and you had the information to research this before committing to marry him.

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.

Therefore, she made a decision based on what she knew and willingly took the risk.

Her DH saying 'he'll be fine' is hardly medical fact, is it? I don't know if I'd take that as read in this situatuon and disagree that counts as doing your DD. They were both a bit naive about the practicalities of things like life insurance, but I think a lot of people would be, especially younger in life. OP is just as guilty of downplaying as her DH. Now things are not going to plan, she's seeking to blame him.

Im sorry you are both dealing with this.

My late Dh had a long term illness. He did tell me about it but he also minimised how ill he had been in the past when we got together. It’s possible that this contributed a little to his death, as I never quite understood (or chose not to understand) exactly how dangerous his diagnosis was if things took a serious downturn, which one day they did. He was not insurable due to his condition, because life insurance is a business decision.

Of course he minimised his illness. He’s a human being, and so are you. You are frightened, and so is he. And there is at least a possibility that he will be fine, and that your kids will be fine.

Rather than holding on to anger, try to feel the fear instead, and understand that the fear you are feeling is a shadow of what he is feeling. Maybe ask him what he is feeling? Talk to him? If he really won’t talk to you, see if you can get some support elsewhere- your GP - you could ask for genetic counselling or plain old therapy. And perhaps also see a financial adviser.

Surely you googled the condition and prognosis as soon as he told you about it? I'm not sure why you so readily accepted his optimistic outlook -- unless you too were happy to be in denial about all the unknowns?

In any case, I don't think you should be so sure that he'll die by 50. Lack of data is just that -- lack of data. If the first surgical interventions were only pioneered in the '80s then only time will tell.

I think I'd be upset if my husband had a life limiting condition that he knew to be life limiting that he hadn't told me about fully. I'd be a lot angrier if he knew that the life limiting condition was genetic and had failed to say so before we had children.

What would prevent you from doing a Google search? You seem tech savvy enough to have made it onto MN.

I don't understand why you are annoyed, he told you he had it and the name of it and you even looked it up and saw it said it was life threatening/shortening condition. Why would you then be surprised life insurance got declined? They aren't going to insure someone for a 30 year mortgage who isn't expected to live another 30 years! You decided to marry and have children knowing he had the condition, he didn't spring it on you once you were married with 2 children. I honestly can't see where you are coming from when he hasn't hidden it from you.

He will have been raised to think about his 40+ years with good health he has to live, not what may happen in middle age, of course he wouldn't be living his life constantly thinking "omg only 20 years left", I imagine it is very very difficult for him to accept and he has always kept it out of his mind. He hasn't lied or kept it a secret from you though, I can't understand why you are angry. I feel very sorry for him, not only having this condition but having a wife who somehow feels angry at him he has it.

Dr Google? Okay.

You wouldn't expect your partner who knows he has a life limiting condition to say "I have a life limiting condition that is genetic". Clear and simple, no Dr Google required.

What more could he have done? You are not a child that has to just follow along with how other people behave towards something. He told you about his medical condition in enough detail that you were able to google it. It sounds like he was in denial and you chose to follow along with that rather than do your own thinking about it. It's for YOU as a fully functioning human to take your own stance towards something, especially something important, not just adopt the stance of others. I suppose this is how people end up just following orders however horrendous they turn out to be 'well everyone else said it was fine'. He disclosed it to you and you chose to turn a blind eye and now you are blaming him, but here in Mumsnet somehow he is to blame. And even though he's dying young you are the one getting the sympathy. This place is unreal.

OP, for what it's worth, I can't get a health insurance but I am living a totally normal life and consider myself really healthy and fit, I'm not on any medication and can't remember last time I saw a doctor.
They are reluctant to give insurances to people with some previous serious health history but it doesn't mean they don't believe he wouldn't live for another 30 years.

No one is promised tomorrow. He gave you the name of the disease at the beginning, he didn’t hide or lie about it, you could have sought out information then and there. You did but admit you brushed it aside as he was well and he obviously wants to focus on the positive and the here and now and who can blame him either? I think it’s natural to think of your own mortality when getting older and having kids. You both should have discussed it further when the decision to have kids was made. But what is done is done. I don’t think either of you is being unreasonable but don’t go into his potentially last decade or 2 blaming him and being resentful. I would start therapy now for you and him on the sadly inevitable.

I think YABU.

He did tell you, he gave you the name and his surgeries and google was available to you.

unless he’s had his diagnosis and surgeries recently, a lot of the detail will have been forgotten/he’s in denial about it, or he could even have been a child when told.

it’s a shitty situation, but I think k underplaying it may not have been a conscious choice

He told her the name of the condition. That gave her everything she needed to find out that it was life limiting. It's not a case of using Google as a doctor, it's about researching what having the condition means. Telling her the name of the condition was as honest as he needed to be if the information is freely available or do you think the poor bloke should start every relationship telling potential partners that he will be dead by the time he's 40?

YABU. You said that he did tell you the name of it and the treatments he has had.

Is it a congenital heart condition? Its sounding very much like what my DC has. The thing is, there isn't a way to know what will happen and it isn't anybody fault for that.

Just to give you an example. I found out about my DC heart condition while I was pregnant, I was offered a termination several times as the medics couldn't be certain that the surgeries needed would work. Then if surgeries did work then they may pass before 2yo. Then the time frames move. No longer than teen years. No longer than 20s to 30s. There are people alive now with it in their 40s to 50s etc.
That's because a few things. The medics cannot ever know how well (or not) a body will respond to the treatments. Also, medical research and treatment options are changing constantly, so what may not have been available before, will be available after some time. Its very much live day to day, if everything's going great then great and if something starts to happen let us know and we'll see if we can try to do something.
All of this while in general, nobody knows when its their time, sometimes other conditions happens, life happens, we get older etc.

So no, I dont feel your husband has lied or withheld information at all. As you said, he is well and stable. There is lack of data about his condition. The unknown is scary but that's it.

The insurers dont know any more than yourselves or the medics. Its business for them.

It's not passed on to our kids. They are healthy and fine
It's just that I'm scared at the possibility of them loosing their dad at an early age