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 have a couple of health conditions, one which is definitely genetic, the other is likely to be "in the family" too - neither of them are life-threatening, but are conditions which I would like the extended family (aunts, uncles and, more importantly, cousins and their children) to know about.

When I told my mother, she was so off with me about it, and wanted it to be kept a secret. I was a lot younger and did respect my mum, and didn't want to upset her, so said nothing. Over time though, I was more unhappy with the idea that other family members might go through years of health problems, and with doctors dragging their heels about diagnosing these issues, because it took me years to be diagnosed.

Whenever I have now been talking or messaging my cousins or other family members, I have casually dropped my health issues into the conversation if appropriate. It was never a big announcement, but then it would never have been that in the first place. I don't mention that my sibling has one of the conditions either.

I don't like family secrets like this at all, particularly if it may be something that affects somebody else.

@GreyhoundG1rl People do tend to sort of look at you funny if you can't have kids.

@Zipfer I had two miscarriages and am 44 now. Also took a long time conceiving and don't seem to ovulate much, so I think there's something not quite right.

If anyone asks if I have kids, I say 'It just didn't work out that way for me.'

@TheLazyToad OP said it's not something that could effect any other family members she's in touch with. But if they were to google the condition (as people do) it would possibly reveal that her sister has it, which her sister doesn't want.

There's no potential impact on other family members' health that means she should share it.

@me4real - oh yes, I totally realise that, I meant that I don't like my own health issues having to be kept secret in my extended family, as it IS something which may affect other members. I guess I was only telling my own experience.

@TheLazyToad Ah ok. It doesn't really have a bearing on the OP, then.

Zipfer "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."

I'm really sorry to hear that. In terms of keeping this secret from the family, I would say that your sister's need of privacy, out weighs your need to tell family.

It seems clear you can and do tell people outside the family, which is totally right. I think you would be risking your relationship with your sister if you told family about this.

For what it is worth i think your parents were wrong to have brought your sister and you up with an idea that this is something to keep secret. But it seems they may have done this and your sister has 'brought into' the idea that it is somehow overtly private or embarrassing. Of course our own medical history is private but your shared situation means her privacy, within family, forces your privacy.

Bluntness100 "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..."

While I agree with you about respecting her sister's wishes, from reading on the NHS website about Turners it doesn't sound as if it is always obvious by appearance.

Anyway, OP I do wish you all the very best.

@Zipfer

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

I disagree with this in an ethics sense - I don't think your sister's right to privacy trumps your right to live a life with healthier relationships, to talk about your own life as you see fit or to keep a secret that was pushed on you without your agreement.

I can see why you might want to protect your sister's privacy for her sake, but I think it's definitely a sacrifice you are making to give her what she wants rather than protecting something she has a right to expect of you.

but I think it's definitely a sacrifice you are making to give her what she wants rather than protecting something she has a right to expect of you.
Christ on crutches

@Zipfer Could you discuss it with your sister and explain how you feel? What is your relationship with these family members like? I personally wouldn't feel the need to tell random family members random private things, but it's different if you're particularly close to them, I suppose.

Oh god, I misread that and thought you were saying that this condition means you have an invisible hand.

Yikes!

@GreyhoundG1rl

but I think it's definitely a sacrifice you are making to give her what she wants rather than protecting something she has a right to expect of you. Christ on crutches

Super well thought out rebuttal.

There are no words, boomboom

I don’t actually think your sisters right to privacy trumps your right to be able to be open and honest. It is unfortunate that she feels embarrassed about her genetic condition but it is very unfair for you to be effectively expected to lie by omission. Having children is something women tend to talk about a lot so if it comes up in conversation and you want to disclose to your family member that you cannot have biological children and seek support from them that is your prerogative.

Having children is something women tend to talk about a lot so if it comes up in conversation and you want to disclose to your family member that you cannot have biological children and seek support from them that is your prerogative.

@Helenahandbasket1 Someone can do that without going into details that have an impact on anyone else.

@GreyhoundG1rl

There are no words, boomboom

Well, if you don't have a reasoned argument that's not surprising.

And of course everyone constantly questions you about this... I’m so sorry. Neither of you have anything to be ashamed about, but of course you are both entitled to feel the way you do. No wonder this causes you both pain and you both have such strong feelings about it. If it were me, I would say, “I have a medical condition. It causes too much pain to discuss it. Please don’t ask me again.” and leave it there. This way you and your sister are both covered. If people press further, they’re being very rude and intrusive.

Whatever this inherited condition is, I'm sorry you have it. I personally would try to respect your sister not wanting to be outed. If you must tell people swear them to secrecy and make sure you trust them.

Actually, I take this back... You should be able to talk about this with SOME people you’re close to. I know when I was diagnosed with a genetic condition (that isn’t life-threatening, but causes pain and many other health complications) I was devastated because I knew that all three of my kids had it in various forms. Due to the way medical insurance is headed in my country (five minutes to America here 🤢) my doctors are not giving me a formal diagnosis of this disease (just the individual symptoms) as it will make insurance virtually impossible to get for my kids and I in the next few years. Having to explain something so stupidly sci-fi and tinfoil hat to my teenagers when we’re a family with a policy of never keeping secrets (for safety) has been a weird one.

@newtolineofduty

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

That’s not what she said. And if this, as I suspect something that impacts the development of the vagina, then many people would feel embarrassment at having others know. And the parents did right in protecting their privacy. There is no right or wrong here in the op wanting to tell and the sister not.

What would be wrong is if thr op just feels it’s frustrating to not be able to say but the sister would be devastated to have people know or speculate about something so intimate.

Ok so ethically, no you don't have to keep your own health condition a secret. However, if it were me, I wouldn't want to upset my sister. Talk with her, but I don't see why you couldn't reach some kind of compromise where you could vaguely say that you have a genetic condition that means you can't have children. Most people wouldn't ask beyond there but don't most families have a nosey one? I'd prepare a short 'i'd rather not go into specifics' sort of a phrase for that.

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

This. I dont believe you should out you sister but by keeping it almost as vague as you have here you should be ok