to think my sister should tell me more about her fertility issues and TTC

[Bennifer]

As this question is posed, it's none of my business. Clear as day.

However, we both have a very rare genetic condition that affects around 1 in 10,000 people that affects fertility. My sister is very coy about the fact that she is trying to conceive and getting treatment for it. I even saw her husband at the clinic yesterday, but I was in a side corridor and he didn't see me.

As it's so rare, and what we know affects each other, am I being unreasonable to want to know a little bit more about what advice she's being given, etc?

Maybe some of us who have responded don't need to imagine it. Maybe some of us are in the same position as you are.

Although you're feeling very alone and misunderstood, I suspect that there are people on here with a lot of personal experience which could really support you through how you're feeling.

Why don't you repost this as a non-AIBU, on one of the conception forums as a request for help?

My DH and his brother were both at risk from a genetic condition. BIL and his wife went through the counselling and testing process happily telling everyone what was happening. We went through the same and told no one. They have both found out they have the condition. We received exactly the same information but understood it differently because we had different perspectives on it. We are more positive about it whereas they can't get past it and want everyone to know that they think it's ruined their lives.

I completely understand your point but your sister is just different to you and you just have to deal with it.
You could just tell her exactly how you feel and that you are there if and when she wants to talk. Best of luck.

I'd like to thank people for their comments, I'll have to agree to disagree with some of the comments, as I think, with all due respect, they might not appreciate the genetic side of it, and understandably are focusing on the fertility part of it.

I've searched mumsnet, and there is not one mention of the condition, and what that means is that very few people, if anyone on the whole of MN will know about anything about the condition and what it entails. As I say, there might be 100 women in the whole country who might be in a vaguely similar position. I think the fact that one of those people is my sister changes things for me, but obviously not for my sister.

Fair enough

The sister thing is difficult. I was ttc for 10 years and the only time I cried about someone else being pregnant was when it was my sister (did manage to keep it from her). It was just too close to home, so it may be that she is afraid of treatment working for you first.

I never told anyone about my treatment - the fear of telling people and then getting sympathy when it didnt work was too great, so DH and I went through ivf a few times not telling anyone. Its only after I had DD that I am able to talk about a new attempt and then only with a few close friends, not family or siblings.

I know you want some support, but if your sister is further on in her treatment than you, she may be dealing with a disappointment already, or starting something that means that she may just not have the strength to support you. YANBU to want her to share, but you do need to respect that she doesnt want to.

I hope the treatment works for both of you.

But you are only talking about it in relation to fertility!

Just in case you're talking about congenital adrenal hyperplasia, which you're probably not but it is something that I have experience of and know how few people have it, thought I would mention cah.org.uk which is the CAH support group. Apologies if I'm talking total rubbish!

What I mean to say is that fertility is the issue that has brought this to a head, which is usually a very private thing. But it might well be the risk of an early death, or anything. If your sister had been told that both you and her were likely to develop some complication at a later stage, would you want to know.

My sister quite possibly has knowledge which directly affects me. This is the crux for me.

I do respect that she doesn't want to share, just mainly disappointed that she doesn't.

Thanks Erniesmum, but it's not

YABU I think. Trying to put myself in her shoes, what you're asking her to do is to share a private, stressful thing she is going through, not in order to support and empathise with her, but in order to glean from it information about how it effects you. I think it's selfish to keep mentioning it to her, given you know she is not comfortable discussing it with you.

Really, I can sympathise. I have a heart condition shared by a similar number of women in the UK. So I do know what it feels like to have a rare disorder which nobody can precisely understand.

But as a counsellor once said to me, try and look for the common ground and the similarities rather than the differences. So how about a support thread for MNetters with rare illnesses?

That would be no bad thing.

I think you have to ask her bennifer , I know its not what you want to do but i think for you to put your own mind at rest you will need to broach it with her ,

If you visit the same clinic with the same condition, then won't you receive similar advice from the professionals?

Are you actively TTC? Is your sister older or younger than you?

Competition could also be a factor. Don't forget sibling rivalry is a powerful force too.

Walk your own path, do your research and don't expect her to help/support you. It IS a shame, for the pair of you, her included. It could be her H doesn't want anything discussing, it might be her.

One way or another, you need to stop expecting her to share when she won't.

YANBU to hope that a sister would want to support another sister.

YABU to expect her to.

(((HUGS)))