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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:
Countrygirl2021 · 21/05/2021 17:01

I'm guessing something like Marfan syndrome where it's not immediately obvious but once you know about one person you see the traits in someone else?

Frazzledbutcalm · 21/05/2021 17:05

country ... something like that is nothing to be ashamed of though ... there’s a chance my dd has it and i wouldn’t think twice about trying to hide it/keep it secret.

I’m genuinely confused as to what medical condition is so bad it needs to be kept secret Confused

Crispychillibeef · 21/05/2021 17:05

What is the condition and how would anyone know your sister also has it?

If she doesn't want anyone to know then you should probably not tell anyone but that depends on how obvious it is.

GreyhoundG1rl · 21/05/2021 17:09

@Frazzledbutcalm

country ... something like that is nothing to be ashamed of though ... there’s a chance my dd has it and i wouldn’t think twice about trying to hide it/keep it secret.

I’m genuinely confused as to what medical condition is so bad it needs to be kept secret Confused

Me neither, but maybe it's not actually secret as such, just not disclosed to the world at large? There's a difference 🤷🏻‍♀️ Unless op has specifically been discouraged from mentioning it?
Frazzledbutcalm · 21/05/2021 17:11

greyhound ..., that sounds like the case as OP’s parents made them not disclose from being young. It’s baffling.

MobyDicksTinyCanoe · 21/05/2021 17:12

Are your parents older op? I ask because my mum had epilepsy, it was kept a secret within the family by her parents as for some reason it was seen as something shameful..... Which was weird because my nana had a disabled child and went against the norm back then by keeping him at home. My mums epilepsy was a step too far it seems. Confused

And no, I wouldn't keep the secret up. That would be ridiculous.

SleepingStandingUp · 21/05/2021 17:13

@Frazzledbutcalm

country ... something like that is nothing to be ashamed of though ... there’s a chance my dd has it and i wouldn’t think twice about trying to hide it/keep it secret.

I’m genuinely confused as to what medical condition is so bad it needs to be kept secret Confused

Of course not, but attitudes were different 20, 30, 40 years ago for lots of people. And if it's inherited, perhaps one of the parents feel guilty that they've passed it on, worried that other family members might start worrying etc. The world isn't always tolerant
jasminoide · 21/05/2021 17:15

As a parent with a child with an invisible disability this horrified me. This is YOUR disability, YOUR life and YOUR decision as to what to do with the information. Your parents should be ashamed of themselves for making you feel like this is a dirty secret.

caringcarer · 21/05/2021 17:16

If you have inherited a genetic condition that is no reason to feel ashamed or embarrassed. If it could in any way be passed on either as a carrier or to have the disorder, through other family members then surely they ought to know so they can get tested also. I think your parents are being unreasonable to try to make you keep it a secret. If you have told friends the secret is possibly out anyway. How your sister deals with it is her business. Just as you can't make her tell other about it she can't.make you be silent on the matter. You should both do as you wish but not mention the other.

Frazzledbutcalm · 21/05/2021 17:17

sleeping ... my comments are purely genuine puzzlement, not judgemental ... I hope they come across this way. And I definitely know about the world not being tolerant. We live that.

Selkie1961 · 21/05/2021 17:17

I agree with you. My parents have tried to reprimand me for being open about something that is my business not theirs.
Trust your own judgement.

An0n0n0n · 21/05/2021 17:19

Your parents chose to have two children. You have every right to do what is right for you as an individual.

IntoAir · 21/05/2021 17:29

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.

mediumbrownmug · 21/05/2021 17:30

Of course you’re not BU to discuss your own health with people you feel safe disclosing to. If asked about your sister, you could always simply deflect by saying you’re not comfortable talking about what you have like that, your family is private about your condition. If pressed, I’d personally say I hadn’t told many people as it’s not easy for me, and I’d rather not speculate about possible carriers, etc. because it’s so hard to say unless it actually happens. No need to elaborate further, in my view. Best of luck!

Standrewsschool · 21/05/2021 17:36

Would people assume that if you have it, your sister also has it? Can you just say it’s something you suffer from?

It’s a genetic condition, then I think if I were the wider family, I’d want to know about it, to be aware incase it was prevalent than you think.

If the wider family haven’t already guessed about something, then it can’t be that obvious, so maybe not because embaressing as your sister thinks.

Original poster
Zipfer · 21/05/2021 17:42

I’d rather not tell the name of the condition so as it’s not identifying, but it is something sex chromosome linked.

As for telling relatives, it’s not that I’m desperate to “out” myself, but I’ve found on a few occasions by covering it up, it leads to strange gaps IYSWIM

OP posts:
GreyhoundG1rl · 21/05/2021 17:43

I really think your sister's desire to keep it under wraps should trump your need to disclose to everyone; if there isn't an actual reason/benefit to them knowing and it's simply about not wanting it to be secret anymore.
Not everything we don't discuss is a secret, or needs to be considered one.
I'd imagine that as you're an adult and your extended family have known you all your life, there will be no particular gain for anybody by disclosing.
What reaction could you get from them that would make a difference to you?

GreyhoundG1rl · 21/05/2021 17:44

it leads to strange gaps IYSWIM
Gaps?

Original poster
Zipfer · 21/05/2021 17:47

What I mean by gaps is the medical condition has dictated life choices that I have made, and so in conversation, with close friends, I have been able to say why and explain things. With relatives, it is just left unexplained

OP posts:
moynomore · 21/05/2021 17:53

Is it absolutely a given that people would know your sister has the same condition? I honestly can't think of any condition that would make me think a sibling is also affected. Even if it is a given, would a non-medically trained lay person know? Are you identical twins?

moynomore · 21/05/2021 17:55

And I'm sorry your parents felt the need to hide it. That must be hard.

titchy · 21/05/2021 17:57

Even if it's carried on the sex chromosome doesnt mean your sister also has it.

Ironmanrocks · 21/05/2021 17:58

Does it matter that you have unexplained 'gaps'?
I just think it might be very painful for your sister to be asked about it - even if they think she doesn't have it/hasn't been tested yet. She isn't ready to disclose it to others, surely you would take that into consideration? I know I would look out for my sister...

YellowScallion · 21/05/2021 18:04

I'm struggling to understand how it will be a given that people know your sister is affected if you reveal you are. If you were both males and it was Y chromosome related some might make that connection but if you're female I'm not sure anyone would make that assumption. Unless you think they would based on something they've noticed regarding your sister, but then it wouldn't be invisible.

GreyhoundG1rl · 21/05/2021 18:04

@Zipfer

What I mean by gaps is the medical condition has dictated life choices that I have made, and so in conversation, with close friends, I have been able to say why and explain things. With relatives, it is just left unexplained
I think you might be attaching an importance to this that no one else is. Have any relatives indicated that they were baffled by your life choices? Would you feel the need to explain if they were driven by you simply doing what the hell you pleased?
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