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.

What sort of damage, do you think? Is it quantifiable?

Gwen I’m not sure where you’re going with the lying thing, the op isn’t concerned about that, more just there is gaps that are unexplained.

If this is something, so for example Rokitansky syndrome, that impacts the formation of the vagina, then it could be fully reasonable the sister doesn’t wish the wider family to know. It’s also fully reasonable for the op to want to tell them all but not if the pay off is something devasting for her sister.

I find it interesting that you don't want to say it anonymously online but you want to tell people in real life. Usually it's the opposite.

I'm struggling to give advice without knowing what it is but in my opinion your medical details are yours and they are private and there is no reason to disclose them to other people.

I think the fact that you've been forbidden from telling people, is exactly what's making you want to do so. Just consider whether you're being rebellious for the sake of being rebellious and if you actually want people knowing the ins and outs of your medical history.

" but in my opinion your medical details are yours and they are private and there is no reason to disclose them to other people."

You seem to have misunderstood the principle of medical records being private. It means that other people can't disclose them, not that you can't disclose them yourself.
Most people do talk about their illnesses.

You seem to have misunderstood the principle of medical records being private. It means that other people can't disclose them, not that you can't disclose them yourself.
State the bleeding obvious, why don't you 😂
I don't think anybody has misunderstood that at all.

I understand you and also understand your sister's position as well. In my opinion there's no wrong or right solution here.

As long as it is not obvious that your sibling has it too, you should be able to tell this to anyone you want. I would try discussing it with your sibling first though. I don't see your parents having much to say on this. I would try and cause as little discomfort and heart ache If I were you

Good luck!

‘It explains certain things in our lives’

Could you address the ‘things’ without mentioning the specific condition? For example, if it’s a condition that means you cannot have biological children and you feel that you want to be open about that, could you not say ‘I am infertile’ without mentioning the underlying cause? That wouldn’t compromise your sibling’s privacy

@Gwenhwyfar unfortunately I think it's you that's misunderstood

Would it def be outing for your sister? and are you sure there isn't a chance other family members children couldn't be affected, have you had professional genetic counselling?

So the consequence is that me and my sister aren’t able to have biological children. We’ve had professional genetic counseling which is why we think it’s not elsewhere in the family.

Tricky one

Ultimately it is up to you who you want to share your medical history with but I think you do need to consider your sibling's feelings when sharing with people who you both know.

I agree with a PP who questioned your motive for wanting to share the information, I do think you need to have clear reasons which you can justify to yourself.

If you do share with family then it would be fairest to let your sibling know first and ask how they would like you to respond if the family member enquires about your sibling's health.

Having considered what this could be, I wouldn't say it's a family secret, it's more it's your and your sister's secret. It belongs to both of you, and it should only be shared if you both are comfortable doing so. She clearly isn't.

What would there be to gain from sharing your medical details other than stopping nosy relatives from saying "so, when you are going to have kids then?" That strikes me as a very minor benefit.

What would there be to lose? It sounds like everything, as far as your sister is concerned.

I do sympathise, because I can see how you feel stifled by something that isn't of your own doing. But I think you have to put your sister first on this occasion. If she knows how you feel, poor thing is probably regarding you as a ticking time bomb who could cause her little world to come crashing down at any moment. The kind thing to do would be to reassure her that you'll never tell and to, well, to never tell.

Are there any online support groups you could join, where you could discuss your feelings? If you can find an outlet that allows your sister her privacy, that would be ideal.

I think you should be able to be open about it. It’s just a syndrome and our genes affect us all it’s just that you can pinpoint certain things more clearly with a clear syndrome. I’m assuming it starts with a T. I feel for you OP. All people have little dna anomalies here and there that affect the way they behave and interact and a multitude of other things and no one should feel ashamed of their genetic differences but easy to say.

What would you gain from your wider family knowing? What would they gain? What would your sister lose? What would you lose as a result of her response to your openness?

Without knowing about your family relationships, my general feeling is that making a distinction between your friends who know and your wider family who don't, probably works fine.

You choose your friends, you can be very close to them, and you can let them go. You can't change who your family are, you're stuck with them, so tact and a little distance or mystery where necessary to retain good relations, is far more important with family.

I can see your difficulty if you're at an age where people keep asking you if you plan to have any children/have you got any? And you want to be truthful, not to have to dismiss it lightly saying you're not ready yet, it's not the right time, it hasn't happened - especially if you would actually love to be able to have children.

Because of your sister, I don't know how to solve it. Would answering the question with 'I can't' and changing the subject be any better? It seems at the moment that her wishes to keep it secret are trumping yours, and your parents are supporting her. Have you had a proper discussion with them about it and put your views forward?

that does sound frustrating OP, its your call if you want to tell your wider family but as you know that will hurt your sister - have you told your parents / sister how you feel?

I don't think you should 'out' your sister. You don't seem to think there's a way to turn this medical news from yours jointly to yours alone.

Is there really such an overwhelming benefit from telling extended family? You have told friends, you have suppose of immediate family - what good will come of telling more distant relations? And does that good outweigh the hurt it could bring to your sister?

That sounds really hard . Do you think your sister might come round to speaking about it eventually? She might get sick of the questions also.

I agree, it sounds hard.

I think if you aren't that bothered about it (and can speak to friends if you wish) it would be good if your sister was not 'outed', as it sounds like it means a lot to her, for whatever reason.

So tell me if I’m in the ballpark, your family is peppering you with questions about when you will have children, you are currently evading in your answers and it would be easier for you to be able to tell them about this condition to stop the questions. But in doing so would out your sister with the same condition.

If that is right and your real goal is to get the questions to stop. Here’s my advice. Pick a non-genetic condition to give them as an excuse. There are a lot of them you can choose from to settle the matter with your relatives.

If you want to tell your extended family you’ve been told you can’t have children then there is no reason why they would assume your sister also has the same issue. You don’t have to elaborate- it’s not something people tend to push the issue on - I can understand if you are constantly being asked (which is baffling - why people ask for some sort of explanation when it can be anything from
a personal choice to a painful journey of trying and not being able to for a multitude of physical reasons - each any of these reasons is down to the individual to choose when and what to share if anything). If you don’t specify it is a genetic condition then you’ve told them without telling them something that violates your sisters right to decide who gets to know.

Your sister feels shame because your parents have implied it's something to be ashamed of by keeping it secret which is awful! I wonder if by disclosing to others, who in will no way judge, that would actually be freeing for your sister and she'll realise she has nothing to be ashamed of! X

@Zipfer If your reason for wanting to tell people is to explain why you don't have children, you can just say that you can't have them, if you feel the need to give some explanation (you don't have to.) Then don't go into specifics.

That way you're not revealing something your sister wants kept private.

We don't know that op is constantly being asked, it seems odd that she would be.
She's just fixated on these "strange gaps" and what people might be thinking about them. They might not be thinking anything at all.

I would just be quite vague. “I’m afraid that I have a condition that means I definitely cannot carry a biological child”

I’m sorry you have to go through this OP. It must be very difficult to navigate.