AIBU to be upset with DH regarding genetic mutation

[ammature]

Trying not to drip feed but also be concise, please go easy on me.

Just had a conversation with DH which spiralled into an argument. Feel quite upset/lost in this.

My mum died of ovarian cancer and my sister has just been diagnosed with breast cancer. I am in conversation with the genetics team at my hospital regarding being screened for the BRCA gene mutation and feel confident I want to go ahead with this screening as it will offer me screening for the cancers if I am positive, I feel knowledge is power.

My DH is very intelligent person and he's just done a genetics module as part of a distance learning degree he's doing (while still at work). Tonight he started to discuss the ethical considerations around genetic screening and in particular around passing the gene, should I have it, to children. We are currently TTC. In a previous conversation around the BRCA thing he's always been quite focused on its implications for children and he's asked tonight would he be involved in the genetic counselling process. I explained that he would be as he's my partner but that there was no prerequisite to be as its a personal medical issue. He understands but feels he has some kind of moral imperative as he would be involved in the children, conversation about giving them the gene etc etc.

Sounds OK I guess, however I feel totally unsupported from a personal level. I somehow feel like damaged goods now and that all the focus is on what I might pass on, yet no real conversation about how I feel about this, the options for my treatments, screening and so on have not been mentioned. It sounds like the information is about someone else(from a text book) and yet its happening to me, with no consideration for the loss I feel of my poor mum and my sisters current worries. We do have arguments at times because I feel he's very logical and lacking in empathy. Now I feel this taints things somewhat, what if we have a baby and I find out while pregnant I'm positive? I feel he will be unhappy with me, he mentioned screening the fetus and adoption as possible conversations yet i feel unwilling to give up being pregnant as well as my breasts,ovaries and early menopause. AIBU to have cried my eyes out and gotten shouty (Also PMS and fragile ATM) because I feel like he doesn't give a shit about supporting me and is more interested in the passing it on to an imaginary baby that doesn't exist, particularly since i have not even had the test yet?

Firstly I'm sorry for your loss.

I am in a similar position, my DH has been diagnosed with the gene. We already have a DS and were trying for another, but we have decided to stick at one because of the gene. We considered ivf and screening the embryos, but I don't have the stomach for it I don't think, and we're going to just be happy with our one DS.

We focused a lot on the family planning aspect of the diagnosis as well, maybe try and not take it so personally if your DH is doing this. I think it may feel as if the possibility of you becoming ill is a distant thing, whereas deciding what to do about having a baby has to be thought about now. And also he might be finding it hard to come to terms with what it might mean and focusing on this issue is helping distract him from the thought of you becoming ill.

Try and be kind to yourself and give him a little slack, this is probably hard for him too xx

I don't think you are unreasonable at all. I think your partner has utterly failed to realise what is academic for him, is real life for you.

I don't think he necessarily said anything wrong in an abstract way. In the same way I might have that hypothetical conversation with my dh. The difference is neither I nor my dh are affected directly by it.

However, you may need to have this conversation with him if you intend to have children and it something that worries him. He was being insensitive but he may legitimately be worried or be trying to show that he can see a path through with you eg the adoption bit.

I think you need to have a frank talk with him about it, lay out everything you've said here and tell him that you need his support.

Could this be his way of dealing with it? DH will often skirt around an issue to avoid dealing with his own feelings, particularly if it's a situation where he thinks he needs to be "strong" for me or the DC.

Knowing him he's not skirting around the issue I just think he's seeing it as somewhat academic as soapbox has said. I have spoke very frankly (cried my eyes out) so he should know how I feel. I feel he has not even considered the thought of me becoming sick or dealing with annual screening, it doesn't seem to be on his mind. The baby thing is obviously on both our minds as we are newlyweds and TTC right now.

He is currently upstairs not speaking to me as he thinks I'm wrong for shouting. Im currently having acupuncture to help with terrible PMS and was previously on anti depressants for the PMS so I feel he should know, I've also just returned from caring for my sister yesterday which I found emotionally hard, I think I deserve some slack too.

Nightowl sorry to hear about your husband, maybe I should be more focused on the children aspect but I feel its something I'm not prepared to give up IYSWIM- but I do want to discuss with the genetic councillor.

YANBU - Even though it is important to do so, it's also a bit insensitive to be discussing maybe not wanting to produce a baby with the gene (although of course you wouldn't wish it on anyone!) when both your mother and sister are carriers and you might be yourself - on some level it could feel a bit insulting to you all/like he feels you shouldn't have been born even though it is 100% the threatening gene that is unwanted rather than yourselves.

Oh BestZebbie non of us have been tested positive, we have not been tested yet, both my sister and I are exploring it now as we qualify with her diagnosis.

Yes I see the point you make though.

This is obviously a really difficult and worrying time for you. People deal with things in different ways. I'm quite emotional and DH is much more of a "give me the facts" person. Perhaps this is your husband's way of dealing with things and he's not intentionally trying to upset you?

Re children and passing on the BRCA gene. Cancer research is moving along so quickly and new treatment/prevention options are developing all the time. Here is an article suggesting that there may be an alternative to preventative mastectomies and oophorectomies.

Hiya as someone who has been married with two young DCs and a relationship that was put to the test for different reasons at a very early stage, your new DH's behaviour sounds like major red flags to me. Your situation certainly doesn't create a climate conducive to enjoying being newly weds and TTC. Could you postpone TTC until after the genetic testing and results are out? I think that if you have the gene and he continues with this unsupportive attitude the whole relationship and potential family will be under a lot of long term stress. If you don't have the gene then maybe both of you will be a lot more relaxed with each other and able to focus on TTC. For me if this was the situation I would think twice before starting a family because it is such a life changing even without having to worry about the genetic tests etc. Hope you don't take this the wrong way.

I found out 6 years ago that I have a mitochondrial genetic mutation with 100% risk of passing it on.

This was sadly after I had already given birth to 3 children, and one had passed, my eldest child was struggling and my youngest had just been referred to Hospice. I have also lost 3 pregnancies in the second trimester.

Knowing this prior to having children, there is no way in hell I would have allowed myself to conceive. I have since had a tubal ligation.

This is my experience, and maternal mitochondrial mutations are rare but have 100% penetration (hence the "three parent" child debate). While the disease presents differently, it is always there. Such is not the case for hormone dependent cancers.

Sometimes, though, emotional detachment isn't a bad thing.

It sounds like he was very insensitive, but also possibly that you overreacted a little? Sorry, I know this is a really hard time for you, but his concerns are valid too, even though he's seeing it from a different perspective to you.

I'm so sorry callmeexhausted

I feel he has not even considered the thought of me becoming sick or dealing with annual screening, it doesn't seem to be on his mind.

Do you think it's possible that he is focussing on the thing that you might have some control over to avoid thinking about the things that you don't? It must be terrifying for him to think of you going through all this, possibly finding out bad news and being in an impossibly difficult situation, but there's nothing he can do about that, whereas options for limiting the potential impact on a future child are within his control, at least to some extent, so maybe he finds it easier to talk about that.

It's also possible that his logically minded side is (whether consciously or sub-consciously) putting the matter of your position to one side until you know for sure rather than worrying about something that may not even be an issue if you have the test and you are clear about your position.

I'm not for one moment trying to excuse the fact that his attitude has clearly upset you, but he is probably scared about the implications too, so it may not be him not thinking of you as not wanting to think about it.

CallMeExhausted

@callmeexhausted I'm so sorry to hear this, how awful for you and your family. You're right sometimes its good not to be emotional but logical and rational... This is something I love about my DH. I guess I just felt that my concerns for myself were not considered. He appolagised last night profusely and admited he hadn't really thought about how it would affect me. I think he was just thinking about the academic because of his coursework TBH and perhaps now he will realize that im affected too. Thanks for your advice.

I have HNPCC/Lynch. I don't think YABU but I think your response is emotional whereas your DH is being practical. (My DH is the same).

If you test positive it's not the end of the world. There is pre-implantation screening and IVF available in those circumstances which will take the worry out of it for both of you.

He is concentrating on a future baby as you are ttc and it could happen any day now. These implications are coming up now, rather than you possible might get ill in the future.

Men think of things more practically than women, unfortunately. And right now, as you ttc, its practical to think of the implications of having a child. You are thinking of it emotionally. Neither is wrong, but you both need a long discussion. I know you were crying so he should know. But when accented by shouting, crying isn't the as upset all the time he may see you as just angry.

Does the logic and lack of empathy mean that you feel he's focused on eugenics. Wanting to breed some 'perfect' human, not a 'less than perfect one.'

I suppose one point is that ovarian cancer is specifically female, and breast cancer usually is as well. So this is all about women's bodies. He can feel unthreatened, perfect. (Despite the fact that he and his family will also be carrying a genetic package that may contain say, short sightedness, or a tendency to have high blood pressure..)

But perhaps the reality is that pregnancy always carries risks. No parents can be sure that they'll deliver the 'perfect' baby who will go on to enjoy unblemished health and a happy carefree life. We just don't have that control over the future. An increased chance of an illness for which there is screening and effective treatment, while something that has to be taken on board, is not perhaps one of the hardest things that Nature can do...

I'm sorry about the various difficulties that you're gong through at the moment. I hope you find a way forward.

Hostoddaffodils I wouldn't say he's wanting to breed a perfect child but my point is exactly as you've made- who knows what will happen to any child we bring into the world ? I also did feel a sense that this is a particularly female experience: breasts ovaries and pregnancy etc. so was touchy about that. Also he was speaking about partners being involved in the genetic Councilling and decisions and I felt hat while I will choose to include him every step of the way that it's also my choice- my body. Agreed shouting is not helpful it's something I've tried to work on and definitly worse with PMS etc. we will have a calmer conversation again. I'm not pregnant this month so I might call genetics team today for a discussion.

I feel like he doesn't give a shit about supporting me and is more interested in the passing it on to an imaginary baby that doesn't exist, particularly since i have not even had the test yet?

I think he's still firmly in the abstract and a little pompous - maybe not the right word? - with his newly-acquired knowledge. You need to tell him that talking about theory isn't helping you, and that at the moment, you need support for the testing process.

The testing process is for you, to understand the best way to provide appropriate screening and intervention for your health. Unlike some, it's not really a test that is provided in order to inform reproductive choices.

Anything further ahead, whether that's reproductive choices, future health plans, etc, can be dealt with after testing. He shouldn't get ahead of himself (what of future children) but (and I say this gently), nor should you be be looking so far ahead to surgical interventions and so on. You're not there yet, it serves no purpose, except to send anxiety and stress through the roof.

You need to continue to liaise with counsellors etc and focus on your state of mind during the process of testing. Your family history isn't the strongest (and best wishes to your sister for recovery), but understandably, you are focussed on the "what ifs" of testing positive. You have options if this proves to be true, but I'd be hopeful of a negative in your case.

Ammature I'm sorry you are finding it hard. And my thoughts go out to anyone on this thread who has suffered.

Dh and I are both recessive gene carriers for a condition which we were t aware of. Like callme (I'm so sorry for your losses) we weren't aware until our multiple Dc presented with this issue at a certain age.

We received genetic counselling and it was very very useful. My advice would be, if you can put off TTC until you have had this, it may be very very beneficial. The counselling really helped us and there was nothing "unspoken" festering between us.

Incidentally, I am in the process of being diagnosed with a disabling condition that might be genetic (obviously wasn't aware of this previously) and I am feeling enormous guilt. It's very different to how I felt when we both had the "faulty" gene. Much harder to deal with.

I think it's important that your Dh sees this as an issue affecting YOU as well as well as possible future DC. I think him attending the counselling might help with this, maybe?

I know how all important TTC can be, if I look back I probably wouldn't have taken my own advice! The key thing is talking and properly communicating, don't leave things unsaid, get them out into the open.

Gentle hugs for all of us affected by these issues, with the rise of genetic information, I feel like we are almost the "guinea pigs" for what will be commonplace in future generations.

I think this is why people struggle so much with genetics and finding out more about themselves. Yes there maybe something there we don't know about. But knowing it, is completely different. It must be so difficult

I empathise a lot with your dh. When mine had cancer, the only way I could hold it together to support him was to research. I could probably have administered his treatment myself by the time it all happened, I'd read so many medical journals and oncology textbooks. It was the only way I could feel in any sort of control of the situation. I suspect he's similar, he's contextualising the bits he can, because the idea of you being ill or losing you is beyond his ability to deal with right now. I know you're scared, but so is he, be gentle to each other.

YANBU, but I kind of get your DH's reaction. Sometimes when something happens to someone you love, it's easier to deal with the science facts and data than allow yourself to feel for them and worry about them. I am very guilty of this. All I can tell you is that it comes from a good place. X