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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to not want to keep a family secret?

146 replies

Zipfer · 21/05/2021 15:22

Me and my sibling share a rare congenital medical condition that on one hand is invisible, but once you know about it, it explains certain things in our lives.

Since we were diagnosed, we have kept it a secret within our nuclear family, so that cousins, nephews, nieces and Uncles/Aunts have never been told about it. It was a choice that was made by our parents when we were children.

As far as we know, given the genetics, we don't think it could have been passed on to other family members. There is potentially one line that could be a carrier, but we're not in touch for over 30 years (an Aunt who fell out with the rest of the family).

As I've grown older, I've become more confident telling friends when it matters (not willy-nilly, but to close friends), and I dislike that it is treated as a secret.

My sibling feels the opposite, finds it embarrassing, and would never want anyone to know (even their best friends don't know). My parents share the view of my sibling (especially because they know my sibling is embarrassed).

If I would tell extended family, it would be obvious my sibling has the same condition. As I result, I feel forced to keep something a secret because of my sibling and parents.

Would I be unreasonable to tell family members about my medical condition? I ultimately think I would be unreasonable to do so, but I do sometimes find it frustrating that my nuclear family have a veto on this issue.

OP posts:
Gazelda · 21/05/2021 20:57

@TacoLover

Are you and your sister intersex? Struggling to see what else it would be?
These sort of questions seem a little invasive, if I'm honest. What difference does it make what the condition is? It makes no difference to the OP's situation or dilemma.
flippertygibbit · 21/05/2021 20:58

@Workyticket

I'm assuming it's something that you could potentially pass on and that you and your sister have chosen not to have children in order to break the family gene issue

I'd want to be able to say "I'm not having children because of xxx" when asked by kindly aunts etc but understand that your sister may not feel the same.

I did think of that too which made me think - I have 3 sisters and 1 brother. My brother has 2 kids, none of my sisters or I have ever been pregnant. It never occurred to me people might think there would be any particular reason for that.

If there had have been 2 wouldn't have wanted it to be common knowledge and 2 wouldn't have cared. I would be in the 'don't care' camp.

Would I have let people know even though it affected them, yes, I probably would have. It's nothing to be ashamed of and truthfully I don't think people who love you would actually care so long as you were ok.

GreyhoundG1rl · 21/05/2021 21:02

Would I have let people know even though it affected them, yes, I probably would have. It's nothing to be ashamed of and truthfully I don't think people who love you would actually care so long as you were ok.
You'd happily cause discomfort to the two who didn't want their private business disclosed to everyone just because you personally didn't care?
Nice.

TentTalk · 21/05/2021 21:03

How much do you care about your relationship with your sister? Are you prepared to fall out with her over this and potentially have your parents take her side?

AtrociousCircumstance · 21/05/2021 21:04

I don’t see the point of telling your aunts and cousins etc, what’s it got to do with them?

You are open with your friends, surely enlightening more distant family isn’t reason enough to break your sister’s privacy.

ConnectedToSandsview · 21/05/2021 21:06

I remember many years ago being told that our family are carriers for spina bifida. It came about in a conversation after a new girl started my high school with it, so me and my sister have known since being young teens.

I’d pretty much forgotten about it until my cousin was pregnant and I overheard my mum having a screaming row with my uncle on the phone - he’d rung to tell her that they still hadn’t told pregnant cousin about the risks, and weren’t planning on telling her. Mum was livid - ultimately not her decision to tell my cousin, but she still can’t believe that her brother refused to disclose potential genetic history to his pregnant daughter.

Anyway, if this is something that could affect other family members children, I would be more inclined to reveal it as it could affect them / their children. And in my opinion, that doesn’t necessarily Trump your sisters wish for privacy, but it is their right to know if there is a potential condition within their family.

GreyhoundG1rl · 21/05/2021 21:08

I don’t see the point of telling your aunts and cousins etc, what’s it got to do with them?
Absolutely nothing; and if they were to see how embarrassed / upset your sister were to be as a result it could backfire quite spectacularly on you, op.
Your entire wider family could wonder why the hell you chose to do something so potentially hurtful. They'd probably be gobsmacked at the price you were prepared to pay to let them know something they may not give a shiny bloody shite about.

MargaretThursday · 21/05/2021 21:34

Could you say something like you have a congenital condition that causes XYZ? If pushed you can say it can be caused by a mutation, or shrug and say "one of those things".

That way you can tell people without giving away the actual syndrome (which they might then google and find that your dsis is very likely to have it too).

There are plenty of both genetic and non-genetic conditions that aren't named, so I don't think people would query it.

backtowasteanotherhour · 21/05/2021 21:39

I probably wouldn't say anything. There are things about my life/health that I don't want anyone to know, including family. It's private. If the primary downside to not telling them is that some of your choices may seem a little mysterious or inscrutable to them, that's not enough to excuse going against your sister's wishes, in my opinion. Most people do at least one thing or make at least one choice that mystifies others. It's just a part of life.

me4real · 21/05/2021 21:44

Would I be unreasonable to tell family members about my medical condition?

Yes, because it's not just yours.

Original poster
Zipfer · 21/05/2021 21:47

I won’t say exactly what it is, but people are in the right ballpark.

As I said at the top, I think my sister’s right to privacy beats my desire not to make it a big secret. I’m not desperate to tell anyone, but I’d just rather it wasn’t a big secret and it would be healthier

OP posts:
Gwenhwyfar · 21/05/2021 21:54

Why does OP have to justify why she wants to tell people? She just wants to. It's quite normal.
I'm sorry that the sister may also be" outed", but I don't think that's really OP's fault.

Bluntness100 · 21/05/2021 21:55

The thing is if it’s something like Turner syndrome then it would be obvious by physical appearance, but if it is something like Rokitansky syndrome. then I can see why this would be something that your sister is embarrassed about people knowing, it’s very intimate and private, and I think that her wishes should be respected there over yours, it would only be obvious due to life choices that she has it too.

Gwenhwyfar · 21/05/2021 21:55

"Unless op has specifically been discouraged from mentioning it?"

She clearly has been. She said so in her OP.

Gwenhwyfar · 21/05/2021 21:57

@IntoAir

I think you get to choose to whom you disclose your own medical condition, and I can entirely imagine being very tired of the secrecy surrounding it.

Yes, but from what the OP says, as soon as she discloses her medical condition, she also discloses her sister's.

Which is not reasonable, I should have thought.

It's not OP's fault that her sister's condition might be guessed though. OP has a right to talk about her own life to people.
GreyhoundG1rl · 21/05/2021 22:00

@Gwenhwyfar

Why does OP have to justify why she wants to tell people? She just wants to. It's quite normal. I'm sorry that the sister may also be" outed", but I don't think that's really OP's fault.
Well, only op can decide whether disclosing personal details about her body to her aunts and cousins which would cause distress and pain to her sister is worth the hurt involved 🤷🏻‍♀️ Of course she can do what she wants, that's not in question.
Gwenhwyfar · 21/05/2021 22:00

@Bluntness100

Why do you feel the need to tell them, when you know it will cause your sister pain? What’s driving you, why’s it so important to you they know?
Having to lie is causing pain to OP.
TheUndoingProject · 21/05/2021 22:04

Is it possible to just mention the consequences of the condition but not the condition itself? So for example, tell family that you have fertility problems but not explain why. That would seem to allow you to be honest whilst still respecting your sister’s privacy.

GreyhoundG1rl · 21/05/2021 22:04

Having to lie is causing pain to OP.
Not mentioning something is not the same as telling a direct lie. Op hasn't said that it comes up in conversation and has to be fielded at all. There's no evidence that anyone has any actual curiosity about it at all.

UhtredRagnarson · 21/05/2021 22:06

Is put my sisters need for medical privacy before my need to explain “gaps” in my life choices.

UhtredRagnarson · 21/05/2021 22:06

Gaps that people probably aren’t even questioning.

Gwenhwyfar · 21/05/2021 22:08

"Not mentioning something is not the same as telling a direct lie"

It depends.
Not mentioning that it was raining this morning is not a lie, but what about not mentioning an extramarital affair because you weren't asked?
It seems likely that OP has either had to lie to explain certain life choices or at least lied by omission.

Bluntness100 · 21/05/2021 22:08

Having to lie is causing pain to OP.

Is it? She’s not said that. She’s said she finds it frustrating, unhealthy, but she’s not said it’s causing her pain?

Op. Ultimately you need to decide what is more severe, your frustration or your sisters pain if people knew. What’s rhe more damaging?

GreyhoundG1rl · 21/05/2021 22:10

*Not mentioning that it was raining this morning is not a lie, but what about not mentioning an extramarital affair because you weren't asked?
Sorry, I don't understand what you mean?
Why would you need to disclose an affair to the world at large either? Confused

Gwenhwyfar · 21/05/2021 22:10

"he’s said she finds it frustrating, unhealthy, but she’s not said it’s causing her pain?"

If it's "unhealthy" then it's doing her some damage isn't it?