to not want to keep a family secret?

[Zipfer]

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.

*If you were both males and it was sex chromosome related

Unless you actively tell your family your sister also has the same condition, they won’t know she also has it. It’s an invisible condition. And if it’s something like androgen insensitivity syndrome, they definitely won’t know your sister has it unless you tell them

Why will disclosing your condition reveal your sister's?

Is is a reason like identical twins or a condition that affects every female child?

Or is it something that a sibling might also have, but not guaranteed but you think they will put two and two together?

My grandmother, my father and my uncle and I have a genetic disorder. None of my other siblings have the disorder and four of my father's 6 siblings don't have the disorder.

Is it a condition that impacts your life much?

I think I might know what it is OP. Obviously won't say, but for my sibling I would keep the secret. Could you perhaps tell your friends and not family.

Even if the condition is x linked it doesn’t follow that any sisters would automatically have it too (as your mum could have passed on her ‘healthy’ x to your sister. Is it a dominant or recessive disorder?

So for strange gaps you want to embarrass your parents and sister and potentially ruin your future relationship with them? I don’t think “strange gap” is a good enough reason.

Do the strange gaps relate to time spent in hospital, op? I think it sounds quite a peculiar thing to think people are interested in, really.

@Zipfer

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

We’re on an anonymous forum .... a bit OTT 🙄

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

Yes, I think that’d be my thinking. I’d always look out for my siblings.

As for the condition, I’m assuming it’s to do with female infertility? Or a DSD condition - a difference of sexual development, such as CAIS, again, a condition which renders women infertile.

Is it something that may lead to awkward questions about personal things? If so, I think I would understand why your sibling wants to keep it to themselves.

@Bessica1970

Even if the condition is x linked it doesn’t follow that any sisters would automatically have it too (as your mum could have passed on her ‘healthy’ x to your sister. Is it a dominant or recessive disorder?

I was trying to get my head round that too! Been a long time since I did genetics, and I think I can grasp the kind of thing OP might have, but not the inheritance. It doesn't follow.

How will people know your sister has it too? If it's invisible? I can't think of a condition to match that

If it’s something that means a high risk of passing it to your own children, like cystic fibrosis, and your family are always asking when you’re going to have children then I can see why you might want to explain why you don’t want to have children but if your sibling is a very private person it’s probably best to shut down any awkward questions and just leave it.

My sibling has an ASD condition and he doesn’t want anyone to know because people always treat him differently when they know and ask him invasive questions, he’d rather people just thought he was a bit introverted but at least he can be himself.

Life choices I'm going to assume that it affects fertility. The one that immediately sprung to mind was turner's.

It's a very strange thread with not enough detail to decide whether op is being unreasonable or not.
I'm inclined to say she is, because of the "strange gaps" thing and her insistence that her wider family are champing at the bit for details of the minutiae of her life.
Sorry if I'm wrong op, but asking AIBU and giving such scant details suggests you are.

If it is x-linked and dominant and the father is known to be a carrier then all female children would be affected, but unless people know how it's been inherited nobody would conclude that the sister must have the same condition as the op reveals she has it.

Pretty much most things have spontaneous mutations, mosaicisms etc too. Genetics is so complex, I'm not sure that people would second guess especially with something rare.

I understand your dislike of it being a secret, it implies it is something shameful and for that very reason I would feel strongly that I didn't want to 'have' to keep it secret. It also probably feels uncomfortable and like you're being forced to lie when you can't explain the gaps in your life to family. Feeling forced to keep secrets can be extremely damaging IMO.
I would confide in close family members that you trust and really want to tell. Say it's just between you and you'd prefer they didn't mention it to anyone else even your own family who are not comfortable with it being discussed.

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.

Are you and your sister intersex? Struggling to see what else it would be?

@Tal45

I understand your dislike of it being a secret, it implies it is something shameful and for that very reason I would feel strongly that I didn't want to 'have' to keep it secret. It also probably feels uncomfortable and like you're being forced to lie when you can't explain the gaps in your life to family. Feeling forced to keep secrets can be extremely damaging IMO. I would confide in close family members that you trust and really want to tell. Say it's just between you and you'd prefer they didn't mention it to anyone else even your own family who are not comfortable with it being discussed.

this, all of it.

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?

Op is it something like turners syndrome so would be obvious by looking at your sister?

It sounds like the impact on your sister of your extended family knowing, would be much greater than your discomfort about ‘gaps’ going unexplained.

You are open about your condition to your friends and that disclosure has brought you peace, are you really willing to disturb the peace your sister has by outing her?