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.

Nowadays there is plenty of information out there regarding medical conditions. Yes, he should have been more upfront with his condition from the start and laid out all the facts.

I am assuming the condition isn't hereditary, so therefore your children aren't at risk?

I appreciate he probably didn't want to frightened you off, and was scared of telling you what his reality could look like.

You admit to Googling the condition but are saying now, that you didn't realise how serious it is. You couldn't have looked into it, very deeply, as I'm sure the basics facts would have been clear to you. I suspect that you didn't want to face the reality of his condition either, but the insurance refusal has forced you too.

There's little you can do now. You are aware of how serious his condition is, so therefore your husband should make sure practically he has Wills in place etc.

Maybe go with a different insurer.

There are some that give insurance to.people with health issues.

I couldn't get insurance either but went with a broker-

The Exeter try them.

I got rejected for insurance - but they insured me until I'm 50 years old( personally I think they're being very conservative, but insurance generally is) obviously the cost is higher but worth the piece of mind.

OP, firstly, dont rely on chatgpt as it often contains factual inaccuacies and will eventually produce biased outputs. Ask yourself, where is chatgpt getting this new information tha isnt available anywhere else on the internet?

Also, I think this is one of those situations where there doesnt have to be a victim and a perpetrator. No one is to blame. Its an unfortunate situation that has involved decisions by two people over time. Go at it as a team, if not for yourselves, for the sake of your kids. See a therapist to process your anger.

Please don't use Chat GPT for researching rare medical conditions. It is just a word prediction algorithm. If there isn't any information available about a topic it just predicts what words might come next based on simlilar searches and topics. Chat GPT is not able to return a 'blank' search and so literally makes things up when there isn't an answer available.

Please do not rely on it for helping you though this difficult situation.

Having read all your posts OP it sounds as if he didn’t have a whole lot more information than you did.

He knew his condition could affect life expectancy but there wasn’t much info about age 40-50+. You also knew that his condition could be life threatening. He didn’t dwell on it. You didn’t dwell on it.

What’s really happened is that you’ve both had your heads in the sand about it (understandably) until just now because of the insurance refusal. You’re in shock, he will be too. Please don’t blame him.

It sounds more like you are unsure if you chose the right person generally, and this is giving you anfocus for that doubt.

Goes without saying one feels huge empathy for him but he minimised it which affects both op’s and the children’s’ lives.

I agree here. It's not like he kept it secret. He told you the condition and you had the opportunity to educate yourself on it...easily done if you had really wanted to. You say you rushed into the marriage...that was your choice . Please have some sympathy for thos poor man with a life limiting condition. I wish you all the best but what has happened recently is nothing new, you've known for years and chosen to bury your head in the sand

Thoughts and prayers to your loved ones, especially those who aren't in full health.

I’m glad you’re choosing not to continue this conversation as you seem sufficiently triggered by my comments to make it personal. If any of my loved ones ever found themselves in the sad position of having a life shortening illness, I would encourage them to be open and honest with the people they choose to spend the rest of their lives with. Anything short of that is wholly unfair.

I’m happy to stand my ground on this and offer the OP support. She clearly loves her DH but that does not preclude her right to feel angry that he wasn’t open and honest with her. The fact that her DH even queried whether he had been fully open about his condition suggests he feels guilty about this too.

I hate this. My father died at 47 of a sudden illness. My mother still considers herself incredibly lucky and happy to have married him. ALL OF US - any one of us - can die at any moment, of anything. Any relationship with we have with anyone and anything comes with the condition of loss.

Well the generic counselling and ivf is only relevant if it's something hereditary

How much did he know? Did he know he'd have a significantly reduced lifespan? Did you get any genetic counselling when pregnant if it hereditary?

Sounds like you failed to ask questions and he failed to explain.

If you - and your husband - want/need to know more about his condition and likely outcomes please do not rely on 'Dr Google' or 'Nurse ChatGPT' - they are not experts. (As advised by my oncologist).

Agree with this.

This - if he knew.

OP, I think I’m right in saying you knew before you had children about his condition. Did you ever ask him, or do any research yourself, about whether it was hereditary? If not, you are totally unreasonable to bring that up now.

I still can’t see anywhere any indication of love or even fondness for your DH.

I think, as others are saying, he's been in denial. I worked with someone who was fairly sure , about 17 or so years ago, that he would get MS bit has now had 2 girls and he's undoubtedly going to have a.much limited lifespan now he's very wobbly and can't drive a car easily any more. Sorry OP but you can't really hold it against him too much although I agree he has caused your children to probably go through his bereavement far earlier than would be normal.

But, bluntly, their 'options' were always either to possibly lose their father younger than they would otherwise have chosen (not that people who lose parents aged 90 don't also wish they'd lived longer) or never to have been born at all. Obviously, if OP had chosen to marry a different man with much less chance statistically of dying younger than average, those specific children would never have been born.

If they could now theoretically have had that choice retrospectively, what do you think they would have chosen? My parents both died when they were middle-aged - albeit not as a result of lifelong medical conditions. I miss them greatly and would have dearly loved to have them here for much longer; but that still doesn't make me wish that I had never been born.

My DH died at 42 from a heart condition we didn't know he had. I would still have married him if we'd known he had it. I would still have married him if I'd known he would die at 42. Being with him and having his child was worth every minute of the pain and grief of his loss.

Are you really saying that if you knew (i.e. had done more research) that your husband's life expectancy MIGHT be shorter because of this condition, you wouldn't have married him?

You sound so angry, and yet I don't know what you think he should have done differently. You say he was as surprised as you are that he couldn't get life insurance, so apparently he didn't fully understand the implications of this condition himself. It seems to me that actually you're frightened, and it's your fear which is coming out as anger. That's understandable but you need to get a grip on it or it will destroy your marriage.

I think you're being unreasonable, which isn't to say anger isn't an understandable emotional reaction in the moment.

I think if you love someone enough to marry them, in sickness and in health, knowing they have a serious medical condition, then not knowing at the time it could be life limiting isn't relevant - you either love them enough or you don't.

Is your sense of anger coming from shock and fear? That I can understand, upset at being left in the dark I can understand, but your comments about making a more informed choice are - to me - unfair.

From what you've said about his condition and his knowledge, it's also possible that he hasn't been that aware of how life limiting it can be. It sounds like he might believe its impact on his longevity will be minimal - or at least comparable to those resulting from life style choices.

Shock, fear and hurt are understable reactions but you should be pulling together as a couple to face this together, not pulling away from and blaming him.

My opinion, obviously.

Also to comment that if I were in his shoes and you started kicking off about having the right to make a more informed choice, I'd say the same applies to me.

If your love is that conditional then he also reserves the right to be hurt & angry that you weren't clearer about it up front so he too could make a more informed choice about who he spends his precious life with.

He told you about it, you did some research on the condition, but you decided "not to dwell on it' because he looked fine? And presumably you weren't too keen on what you saw.

Yes, you're being unreasonable, even more so if you're trying to apportion blame.

My sister and I both married men that are unlikely to see old age. End of the day, you could be hit by a bus tomorrow. Most don’t know exactly what the future holds. All you can do is have your paperwork (wills, insurance etc) in order and then live your life. I’m sorry that you’re in this situation but I don’t think you should be angry with him. Most people wouldn’t want to face their mortality in any deep way. He did tell you what he had so the opportunity was there to research further before marriage/kids.

Nobody knows how long they have to live!
I’ve had 2 friends die of sudden cardiac arrest both fit and healthy with no symptoms, one of them was only 38
The main concern for both of you should be keeping up with any advances in treatment for his particular condition. Can he get a referral to see an expert to at least get some information / advice on living as well as possible with this condition?

No one knows how long will they live. My DH dropped dead at 31 unexpectedly. Incredibly healthy man gone instantly.

Did you tell him how long you are going to live?

After the Covid vaccine?