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MIL lied about genetic condition

117 replies

MyChirpyRoseDuck · 02/11/2024 16:19

Please bear with me, first time posting but really need some other unbiased perspective! My DH and I have been married for 13 years, and have two sons aged 10 and 6. About two years ago my DH started loosing feeling in his arm, lost his hearing in one ear, a range of symptoms. Cue multiple scans, trips to hospital and Drs. I eventually persuade DH to just let his mum know. As a mum, I’d want to know. I’ve always struggled with MIL, found her manipulative, tried to parent our children etc but maintained a reasonable relationship for the kids. Anyway, DH told MIL of the health problems. About 2 weeks later she calls, in floods of tears to admit she has a genetic condition and it’s likely he has it too. She’s known since he was 17 (we are in our 40’s). She didn’t seem to think that telling him was important. I’m furious. It’s a condition that’s not going to kill him but it’s going to impact his life, more severely as he gets older. I’m pretty mad that she didn’t tell him. But what I cannot forgive her for is that we went on to have children without genetic counselling. Our kids could have the same condition. Would I change my kids? Never. But would we have taken a different route had we known? Probably. I want nothing to do with her, but will continue to see her with the kids so they can have a relationship. My mum thinks I need to get over it. I’m just so mad. AIBU?

OP posts:
Potentiallyplausible · 02/11/2024 17:27

In what way did she lie, though?

LadyGabriella · 02/11/2024 17:26

EmmyPankhurst · 02/11/2024 17:24

@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.

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

Lunde · 02/11/2024 17:26

,

Tobyjanet · 02/11/2024 17:26

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 .

LadyGabriella · 02/11/2024 17:25

What is the condition?

EmmyPankhurst · 02/11/2024 17:24

@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.

BarbaraHoward · 02/11/2024 17:24

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.

cestlavielife · 02/11/2024 17:24

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.

outandunder · 02/11/2024 17:23

@RememberJez yes but the op does, read her post

Flossflower · 02/11/2024 17:23

WaitingForMojo · 02/11/2024 17:21

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.

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

Tittat50 · 02/11/2024 17:23

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

DanielaDressen · 02/11/2024 17:23

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 · 02/11/2024 17:21

Flossflower · 02/11/2024 17:06

Ending a child’s life is a decision for parents not grandparents.

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.

ChampaignSupernova · 02/11/2024 17:20

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?

Loulo6098 · 02/11/2024 17:20

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.

Marblesbackagain · 02/11/2024 17:19

IsitanIssue · 02/11/2024 17:11

Outrageously selfish behaviour by the mother in law. He could have spent the last 20 years creating a lifestyle/diet/plans/career choices that mediated his future symptoms and circumstances. People saying it wasn’t her son’s right to have knowledge about his own future health are terrifying. He could have deliberately worked harder for early retirement! So scary that people can think this is ok 😫

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.

Tittat50 · 02/11/2024 17:19

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).

cestlavielife · 02/11/2024 17:19

Maybe she hoped genetic lottery would mean he did not have it? Eg 50-50 chance. So she hoped no need to reveal . Was her decision.

Can you blood test for it?
Is it going to limit life?
Now you do have the information so if a test is available you can decide to test you dp and your dc .
Go see genetic counselling to decide.

AgnesX · 02/11/2024 17:18

Marblesbackagain · 02/11/2024 16:29

YABU, she only found out when he was 17 and it was her decision to make to share or not. I am sorry but her right to medical privacy over rides your right to know.

We have been through this with breast cancer gene. It is better handled now. At 18 my sons will be advised they may be at higher risk due to familial tests, but it won't disclose who. They will have access to screening.

This to me is the way it should be, protection for individuals and privacy respected.

So, if it's hereditary you think her son had no right to be told that he might be in line for it? You're telling your family when they become young adults, this man didn't even get that and and with it knowledge.

Sorry, but I think OP has the right to be monumentally pissed off.

RememberJez · 02/11/2024 17:17

outandunder · 02/11/2024 17:12

That's really horrible of her.
Your DH could have had the chance to develop a career which wasn't dependent on his physical health (eg no point trsining to a pilot or forklift driver) as he got older.
Also (and I sound the reason why she didn't tell you) he may or may not have chosen to have children.
Very manipulative.

We don’t even know what the condition is.

RememberJez · 02/11/2024 17:16

I can’t see any posts saying it’s okay to the poster above.

How has it never come up before? How is his mum coping with it?

I don’t think calling for her blood is a great idea, yes it’s really selfish of her but not sure cutting her off is a good idea. Are they close? All you can do is move foreward now.

Tittat50 · 02/11/2024 17:15

@Flossflower do you mean that the decision to have a child should be fully informed by the parents with all the knowledge available?

If so, yes, I can completely understand that.

Cerealkiller4U · 02/11/2024 17:14

MyChirpyRoseDuck · 02/11/2024 16:19

Please bear with me, first time posting but really need some other unbiased perspective! My DH and I have been married for 13 years, and have two sons aged 10 and 6. About two years ago my DH started loosing feeling in his arm, lost his hearing in one ear, a range of symptoms. Cue multiple scans, trips to hospital and Drs. I eventually persuade DH to just let his mum know. As a mum, I’d want to know. I’ve always struggled with MIL, found her manipulative, tried to parent our children etc but maintained a reasonable relationship for the kids. Anyway, DH told MIL of the health problems. About 2 weeks later she calls, in floods of tears to admit she has a genetic condition and it’s likely he has it too. She’s known since he was 17 (we are in our 40’s). She didn’t seem to think that telling him was important. I’m furious. It’s a condition that’s not going to kill him but it’s going to impact his life, more severely as he gets older. I’m pretty mad that she didn’t tell him. But what I cannot forgive her for is that we went on to have children without genetic counselling. Our kids could have the same condition. Would I change my kids? Never. But would we have taken a different route had we known? Probably. I want nothing to do with her, but will continue to see her with the kids so they can have a relationship. My mum thinks I need to get over it. I’m just so mad. AIBU?

I mean my dads just been diagnosed with a type of cancer which is nearly always genetic.

he didn’t know. Me and the kids now have to be tested. I know how you feel though as it’s terrifying. .

RockaLock · 02/11/2024 17:14

Marblesbackagain · 02/11/2024 16:29

YABU, she only found out when he was 17 and it was her decision to make to share or not. I am sorry but her right to medical privacy over rides your right to know.

We have been through this with breast cancer gene. It is better handled now. At 18 my sons will be advised they may be at higher risk due to familial tests, but it won't disclose who. They will have access to screening.

This to me is the way it should be, protection for individuals and privacy respected.

I'm sorry, I can't understand this viewpoint at all.

We found out when my DS2 was born that he had inherited a rare genetic condition from me. I am mainly just a carrier with very few symptoms, whereas he is much more severely affected. We knew nothing about this condition until DS2 was born.

It never ever crossed my mind not to be completely honest with him all his life about his condition and how it was inherited. Why would I want to hide it? It's not a shameful thing, that I have a dodgy gene. He has every right to know exactly how he and any future children will be affected.

OP, I would be furious with MIL as well. If she knew she had a condition that might affect her (future) grandchildren, I cannot understand her not being open about it with you.

outandunder · 02/11/2024 17:12

That's really horrible of her.
Your DH could have had the chance to develop a career which wasn't dependent on his physical health (eg no point trsining to a pilot or forklift driver) as he got older.
Also (and I sound the reason why she didn't tell you) he may or may not have chosen to have children.
Very manipulative.

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