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.

If someone i was thinking about building a future with told me they had a condition, I'd definitely Google it as a starting point to find out more about it!

No, just the one he wants to marry and have children with.

Imagine how scared your husband feels about possibly leaving his wife and children early?

Its difficult for you both and I understand you must be in shock but use this to come together. Dont let this cause conflict between you.

Support each other.

He told you the name of the condition, how much has it been discussed with him since he was a child? Has he seen any doctors about the condition since he was a child?
He may have put it out of his mind and convinced himself he’s fine, he may have avoided googling it so he could tell himself he’s fine.
You could have also checked and asked the big questions but you didn’t possibly because you love him and didn’t want to think about it either.
You both should have discussed this /researched before you decided to have kids together.

So really I’d say you are both at fault.

Your husband has possibly minimised his condition because he is in denial. Or perhaps the consultants at his medical appointments have said to him, "You're doing great. Ignore the statistics - surgery only began in the 80s so we don't have an informed view on how long people operated on since then will live. We have other look at this on an individual level and based on your health, no reason to think you won't live for decades yet"? I take it you didn't attend these medical appointments with him so you don't know what he's been told?

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

Sounds like YOU were in denial too. In that case, what he has done, you too have surely done?

Youre understandably scared. I get it, I have a genetic condition which DH is fully aware of, but when he was on one knee proposing I still reminded him of this.

At this stage what good does anger do, if you split over this you've lost him anyway and disrupted your childrens lives. Best to seak some professional support to work through it.

Downplaying is completely different to not disclosing.
And you chose the same approach as he did. I agree with others that your anger comes from fear and counselling as a couple might be helpful. But I can't see that he has done anything wrong.

We have kids now and im so angry at him for putting my kids and my future in danger
what danger? You’re not upset for him? Please don’t say that this is about money!

Does Google not exist in your country OP?

He told her the name of the condition. He doesn't know exactly what the future holds and the Op had enough information to research the condition before agreeing to marriage and kids. I doubt for one second if you or the OP were in his position you would be freely going around telling people you'll be dead by the time you x years old. Short of saying that what more could the poor bloke have done to arm the OP with the information she says she is lacking?

Have you never talked about it with him? Never been to a medical appointment with him? It’s not right that you should know so little - what planing have you done together to secure your kids’ future? Financial planning? Housing? Wills? He should certainly be more up front with you painful though it is for him.

Where on earth have you got this idea from?! Even of it is hereditary (which it doesn't sound as if it is) genetics really doesn't work this way.

I think you are being quite harsh op. Life insurance companies are notorious for trying to wriggle out of covering or paying up. I had one try to refuse me before because of a molar pregnancy.

I suggest you consider how your dh might be feeling about this given he is the one whose life is likely to be cut short and don't make your remaining years together miserable. If you are in your 30's now you have plenty of time to make some financial plans to protect yourself in the future, speak to a financial advisor.

I don’t think you’re wrong to be upset- it’s shocking to find out your family’s future may be impacted so severely in ways you weren’t aware. I do think you are wrong to direct your upset at him.

He has it harder surely? What an awful condition to come to terms with. We all feel invincible while young (particularly if the medical condition did not impact his day to day life as an adult). I imagine he is only now processing these things at the same time as you, and contemplating his own mortality and the practical imapct of it on his family.

Yes it’s a shit situation but surely more so for him?

Take time to grieve the future you thought you had, but not too long as you still have young children who will need you both to be practical:

• Work out how you can get a mortgage on your income alone, and work out how you and your husband can pay that mortgage off in 10 years - to give you the security you can’t get from life insurance. This might mean an adjustment in lifestyle for the foreseeable - a smaller house, cheaper and less holidays a year, no private schooling, moving to a cheaper part of the Uk and working remotely in London based jobs to maximise income for a few years.

• Be proactive about his health and outcomes. He may have been slack on this since he has clearly had his head in the sand. What can he be doing now to ensure the best life expectancy? Are there new treatments available? Can he be monitored regularly so that any health changes are spotted early.

• Does he have family who can help guarantee you financially since their son can t? Perhaps they can provide help paying off your mortgage. Perhaps they can add you and your children as beneficiaries to their life insurance so it’s split between the surviving parent and your family. Perhaps his family have been thinking of the practical matters your DH has ignored - if at all possible. I would open up the lines of communication with them about the condition and your family’s security in the event the worst happened to your DH.

Above all, be hopeful - life is best when we still have hope. There may be some tough times coming ahead for all of you but it’s not good to dwell on them too long before the time comes, except for the practical things you can do to prepare. Prepare for the worst but hope for the best, so that you don’t waste the good years you have left stuck between regret for the past and fear for the future.

Dr Google is a term for searching symptoms to get a diagnosis, not researching a known condition with a name. For CF for example - 3 of the first 5 Google results are the NHS page, the CF Trust and the CF Foundation. All reliable, factual sources.

I don't know what you expected him to say. I might die young? Well, he might not.

While I’d be worried about how hereditary it is etc, I think this is the definition of ‘making it all about you’. Are you actually angry at your husband for having a serious illness?

If he doesn't know what the future holds, why doesn't he Google it? Since Dr Google is so informative and accurate.

OP, I get where you're coming from. He's the one with the condition, it's up to him to tell you what that means for him. He's the one that's seen the ACTUAL doctors that know his medical history.

So what is this mystery condition which has a 20 year window in which someone dies?

It does sound like he has handled this badly. I was tested for a life limiting heart defect in my early 20s and it was very obvious to me that starting a family wasn't an option as it wouldn't be fair on any children.

That said I'm surprised that you didn't do any research yourself if you had a diagnosis.

All things being equal, yes, he should have told you at a reasonably early stage in your relationship.

I guess there was also some onus on you to do your research more deeply once you had the name of the condition and had initially seen what google said about it.

Perhaps both of you were a bit blinded by love and hope? I think you might both benefit from some counselling now.

I’m really sorry he (and to a lesser extent, you) are facing this. I hope he stays well for many years to come.

You are both massively at fault for not discussing this prior to having children.

I think you’re being selfish and insensitive. He did tell you what it was. Whilst he was silly to downplay it; it’s onto you to google it. If he told you, he obviously didn’t want to go into specifics and dwell on “yes I will die in 10/15 years”. That’s a very bitter pill to swallow; and even say out loud.

Your post reads very me me me. Whilst you have a right to be upset; kindly; it’s not about you, it’s about him and how you can help him. Does he have a will? Do you have a will? How old are you children, old enough to understand?

He did discuss it.

Google can be very informative. Most life-limiting illnesses have a foundation/charity page and an NHS page, as I have just said. What's wrong with informing yourself via these? You don't know what "Dr Google" means.

No you are not overreacting. Who knows if he minimised it due to denial or because he didn’t want to put you off.. I’d also be enraged.