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.

I can't see why you having the condition would make it obvious your sister has it too if it's invisible? I think you're entitled to tell people about your medical condition but can't see why it would impact your sister or what they know about her?

It's your life and a condition you have to live with,who you share this information with is up to you and you alone.

I think you're fine to tell them but have an answer prepared in case they ask about your sister. You may need to say that you've only found out as an adult and your sister hasn't mentioned anything to you. I know that's a lie, but it's a smaller lie (keep it simple and close to the truth) and may help to protect her privacy with this.

Why did your parents keep it a secret? Are they embarrassed, ashamed? Has it had an adverse effect on growing up, as you say its invisible but would explain some things?

I have PTSD and am quite open about it but each to their own, your body your choice as they say.

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.

As a pp said, I can't really envisage in what way an 'invisible' condition would be obvious in your sibling once you disclosed that you have it, but if you're right and they're likely to guess, you should have a form of words prepared for a reply to any family members who might ask directly about your sibling.

Your life, your body, up to you who you tell. It's not reasonable to hold you to this secret, although it would be kind to your sister to leave her out of it. Could you maybe be a bit vague on the details so it's not obvious that all the siblings will have it? I mean, without knowing what the condition is,I don't know how easy it would be for others to guess that you'd all have it. Or why it's such a shameful secret.

I don't understand how it could possibly be "obvious" that your sister also has the condition, but then I don't really see what purpose telling your entire family about an invisible condition would serve in the first place.
Not that it would be unreasonable to do it, I just don't see why you want them to know?

Having a medical condition is nothing to be ashamed of. It is your personal information to share if you want.

I agree with pp, have a form of words prepared to deflect direct questions about your sibling. Even though it is a genetic condition, you don't have to be drawn into speculation about who in the family might have inherited it. It's perfectly reasonable to stick to talking about yourself and how the condition impacts you.

You own your body and if you want to tell, go ahead.
What happens to others is not your concern.

Although their rights don't automatic ally over-rule yours, I would have some sympathy that you would in effect be outing your sibling's private medical information which doesn't feel right. On balance, I would say one individual's right to privacy would outweigh another's right to share.

I don't really understand the want to tell all of your family about a medical condition but then, my family are so spread out that we don't have communication like that. I don't tell anyone my medical history unless it is relevant to a conversation. It's not a secret, just private.

Why is it a source of embarrassment to your parents and sister?

I assume your parents feel responsible for being carriers and unwittingly giving their children the condition, so I imagine there’s guilt/shame in there that hasn’t been dealt with,

But they shouldn’t make your sister ashamed of it.

It’s your life and your relationships as well as theirs.

Have you ever said to them you want to be open about it?

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

What are your reasons for wanting to tell them?

It's difficult if telling them essentially "outs" your sister against her wishes

I'm assuming it's a condition that is hereditary in any female children in your family, which is why it would be obvious that she has it too?

I am totally on board with 'your body, your choice' but this is difficult because in telling people it appears that you're taking the choice AWAY from your sister. I'm a very private person and I would hate that, so I understand how she would be feeling.

Does keeping it a secret make you very unhappy? You have to try and measure that distress against the probable distress you would cause.
I think you know it would make your sibling deeply unhappy to out them. Only you can quantify how much distress you would cause your sibling and whether you would lose your relationship with them.
The fact that they have not even told their best friends indicates how important this secret is to them. I understand your frustration and the fact that you are at peace with your medical condition is a good thing but if you love your sibling and they cannot cope with anyone knowing and you don’t want to lose their relationship with them and be censured by your family then I would keep quiet.
It is hard to imagine something invisible that people would immediately assume your sibling had as well if you told everyone.

If they are people who will have minimal or no contact with your sibling, or are those who can be trusted with confidentiality, then reasonable to tell them. Especially if it helps them to understand some actions that might have seemed strange or unreasonable, and/or gives a sense of peace of mind.

What are your reasons for wanting to tell them?
Unless you can articulate this (to yourself, not us), there won't really be an answer.
What would change if they knew, practically speaking?

What is the condition and why is it embarrassing? Why do you want to tell your family if it’s not hereditary?

I think you have to weigh up the fact this will potentially alienate you from your parents and sister. Will you really gain enough from telling to justify and compensate for that? You clearly have your friends you talk to, which I think is fine, so why do you think your needs outweighs your parents and sister in telling your family? Also, you are potentially revealing something about someone else in the family. Just because you don’t have contact, doesn’t mean nobody else in the family does or will in the future.

Ultimately what will you gain by telling? Because you could lose a lot and also cause a lot of pain, hurt and embarrassment.

Is it an x chromosome linked condition passed on by your dad that any daughters of his wilk be affected by?

We have this kind of condition in my family, so understand how it could be obvious if you know about the condition.

@GreyhoundG1rl

What are your reasons for wanting to tell them? Unless you can articulate this (to yourself, not us), there won't really be an answer. What would change if they knew, practically speaking?

This. Why do you feel it is necessary or required to share private medical information with your wider family?

Outing your sister would be cruel thing to do, what would you gain from that?

If it only affected you I would say tell, but your sister doesn’t want people
To know and you don’t really know these other people! Why are you putting them
Above your family?

Can I ask what the condition is? I can’t really understand what condition could possibly be so bad it turns into what seems a dirty little secret?

I think it's about the why for me too.

Because you're really close to them and sometimes want their support regarding this issue? Then yes tell them but say you don't know if they ask about sister.

Because you don't want to keep it a secret because you don't want to feel ashamed anymore? I wouldn't. You know you don't need to be ashamed, you're open with the people you're close to but it will impact on your sister even if it's only gossip

Is there a specific reason that you want to tell? What would you gain from it? Because unless it is detrimental in some way for you for others not to know, then I think your sister's wishes trump here. Assuming that it is impossible for her not to have it if you have.