MIL lied about genetic condition

I don't agree with your mum that you should just get over this either OP. That's quite an old school sweep it under the rug mindset. I can see that dwelling on it isn't helpful but this is alot to take in and you need time.

I think it's reasonable to have a bit of space from MIL for a while so you can have time and room to process it all. Knowing all this, you could want to throttle her if you're forced to spend time with her ( especially based on prior encounters with her in general).

It's the law, it literally doesn't have feelings. Ignoring it won't change it. Therefore effort needs to placed in devising ways to prevent this situation occurring.

I find it ridiculous that people are putting responsibility of such an important information on an individuals choice. That choice must be maintained and respected. Nobody knows how we may react to devastating news. Plenty, sadly in my family could never share the news.

Society needs to evolve to replicate best international practice and see each diagnosis trigger generational screening. That way people aren't placed in impossible situations like the op.

YANBU.

My DH has a generic condition that affects his health from time to time. It was a major factor in our early conversations because it would affect our children, and he wanted to make sure I knew the full picture. I also needed generic testing to see if I were a carrier. I am not. Our sons will need to know that they are also carriers, because it could affect their children if their wives are carriers.

It's up to your DH to forgive his mum, but you don't have to. You have also been lied to and now you have to get prepared for this also happening to your children.

She was probably naively hoping he wouldn't have it as didn't show symptoms before now and was possibly scared to mention it. I do think she should have disclosed it to him as its genetic and he could be a carrier but I can understand why she may not have been so forth coming. Would telling him earlier have meant the condition could have been held at bay longer or is it one that will strike the it wants and it's just managing symptoms where possible?

She said she doesn’t want to ‘upend HER child’s life’, as in, cause him distress and ethical dilemmas. Not that she doesn’t want to ‘end a child’s life’, as in abortion of her grandchild.

Could it be she didn’t know the condition is genetic? I’ve recently been diagnosed with a condition and at no time has anyone told me it’s genetic. I only know from Google and the fact that Dd also has it. Like the OP’s dh is not a life threatening condition but one which impacts my life and will likely get worse as I get older. Maybe the doctors don’t think to tell you unless it’s life threatening? 🤷‍♀️

@WaitingForMojo ah I wondered what was going on with that reply to my post🤷‍♀️. Thankyou for clarifying.

Sorry. Yes I didn’t read properly but actually not telling could mean the same thing.

@RememberJez yes but the op does, read her post

She didn't lie unless he asked specifically. She just omitted to reveal something.
Does she have symptoms?
So did dp know dm had something goingvon? For how long? Did her dc ask her what the condition is? So they would have known already the name and could see themselves and speak to their own GP about testing?
I do get it 's devastating info to now consider testing your own dc. But you have to move ahead with the info you have now.

It's a really tricky one.

Personally, I wouldn't do what MIL did. My family has a cancer gene called Lynch Syndrome. It's similar to BRCA but different cancers. We were always open about it in our family and grew up knowing the risks, the cancers and their symptoms. We knew this long before we heard of Lynch or genetic testing.

However, MIL has the right to keep her medical info private, no matter how much you disagree with this. Also if she's had a chronic illness since her son was a teenager and he knew nothing, and then he didn't tell his mum about his own symptoms, then that does indicate a more private family culture around health.

I read a very similar thread to this maybe a year ago, was that you? It may not have been, but I just mention it because if this is brand new information then of course it's very natural for you to be upset. But if you've known a long time then I think it's time to try to put your upset behind you and move on. A genetic condition that causes a non fatal chronic illness in middle age isn't the end of the world, and none of us know what's lurking in our genetic code to screw us or our children over.

@MyChirpyRoseDuck I would be upset too.

Armed with the information genetic testing could have been considered and /or life decisions made differently e.g employment choices, decisions re: big ticket trips early in life. Testing embryos etc.

I'm aware of a family where Huntingdon's was concealed. When one of the four children got it the real reason for their mother's death was known. The implications were horrific and the siblings who had had children were particularly angry that they hadn't known. Pre-implantation genetic testing had become available by this time.

In the end all four siblings died prematurely - 2 of Huntingdon's and 2 took their own lives afraid they had it but unable to face definitive testing. Tragedy.

What is the condition?

It would have been a bad time to tell someone at 17 . We have discovered that DH carries a condition since we had DC . There is never a good time to tell children - we are waiting for them all to reach adulthood . I’d imagine it doesn’t get any easier then .

,

This isn’t Huntingdons though. I don’t think MIL would have hidden that. This doesn’t sound very significant to be honest.

In what way did she lie, though?

Sorry but this is just so wrong. Once it was clear they intended to have children, MiL should have disclosed so that proper counselling and advice could be given. Her right to medical privacy doesn’t take priority over a distressing disclosure when it’s too late to do anything about it. And depending on the condition there may have been steps he could have taken to reduce the risk. Same with your sons. I’m assuming the BCRA gene. Why are you waiting until age 18 to disclose when there are steps they can take to reduce the risk now ?

Her right to medical privacy does not override the rights of her actual and possible descendants.

@LadyGabriella we don't know how signficant it is - he has reduced feeling (and possibly function) in one arm and reduced hearing.

That's definitely a big enough impairment to have wanted to do big ticket adventure trips before you got it....

OP said it wouldn't kill him but that doesn't mean it isn't going to substantially reduced what he can do physically.

i would limit all contact with MIL. Nasty selfish behaviour from her.

"not going to kill him but it’s going to impact his life, more severely as he gets older"
Says op
Old age can bring many issues anyway.

Is there something dc can do when young to avoid symptoms? If so then test.

OP needs to not be coy and tell us what the condition is if she’s going to ask for opinions on here. What if it’s benign fasciculation syndrome. There are so so many minor neurological conditions we can’t give advice otherwise.

She has the right to medical privacy and if it's not life shortening this can't be particularly serious therefore there may be no testing available,

I have.