BW's rules for the family who wants to be supportive

There's been discussion of this in my journal lately. With there being enough stress running around with me doing an IVF cycle on top of setting exams, marking exams, writing reports, writing programs... and all the other assorted end of year craziness in the life of a teacher, having family stress on top was just too much.

The statement of "how to be supportive" for the family has not yet been issued. Still working on getting myself into a calm enough state to be able to send it along in such a form that it's not going to create even more problems because we've now majorly upset the family. Copied directly as it was written, and a brief note on that - I was in a fairly sarcastic and cynical mood when I wrote it, and it was written along the lines of a conversation to myself. As things developed, instead of going back and editing, I left it as it was - I find writing in that way to be much more therapeutic and cathartic than in trying to come up with something that flows and makes sense. It's the changes in my thought process that I need to see later.

Anyway, people are quite welcome to add, subtract, make suggestions to the wording - this is very much a draft statement, needs a lot of work before it goes to the family.



* Thou shalt NOT under any circumstances call to enquire about the result at the conclusion of a cycle. If we tell you about the cycle, we'll also tell you about the result, when we are good and ready, and not a moment before. There's enough pressure from ourselves without having to feel like we have let you down also if we get a negative result. There's enough disappointment between the two of us without adding yours on top.

* Thou shalt NOT under any circumstances change the subject when we are talking about IVF. Especially so if that subject change involves the discussion of other people's children. Way to rub salt in the wounds, guys!

* Thou shalt NOT bring up IVF as the first item of conversation. We would desperately like to maintain the illusion that IVF does not come first, and there are other interesting things happening in our lives.

* Thou shalt NOT bring up IVF in discussion while in public. This includes in front of YOUR close friends and family members. Just because you are close to those people and trust them, doesn't necessarily mean we are as well. We would like to control who knows and does not know about our fertility treatment. We have enough gossip to deal with at work, thank you very much!

Hell, let's just make it "Don't talk about IVF unless we bring it up first". Yes, the process of injecting oneself and being strung out on artificial hormones may be interesting to you, but remember that we are the ones actually living it, and have to adapt to having a sharps container in the "pharmacy" (that region on top of the freezer which is occupied by my meds, I really should take a picture of it at some stage, it's quite impressive) and have to deal with the headaches, bloating, tears, irrationality and other side effects of these IVF drugs. Not to mention the 5am starts when we have blood tests or scans before work... Do you realise just how many doctors and nurses have got to see and poke around with my girly bits? You say you lose all dignity in childbirth, we've lost it long before we get to that point - try having four people in the room at the moment of conception!

* If you try to invite yourself over, or invite us out somewhere and we are hesitant and non-commital - buy a freaking clue and realise this could be a really sensitive/busy time for us, and we are probably entirely happy in our own company. If we want a distraction we'll find it, if we want company, we'll go in search of it. Just remember that we don't get much notice for some aspects of treatment, if we can't commit, we just can't commit. Get over it. Remember that OHSS is a life-threatening illness, and I have to face that risk with every full stim cycle.

* If we are going to be the only childless couple there, understand that it may be a bit uncomfortable for us, so don't pull guilt trips if we say no to your invitation.

Lol BW good on you. I'll be watching to see how it goes with your family.

BW! I love it.... a close friend of mine is on IVF too and this is exactly what she would write. I have nothing that I would like to add or subtract from your list as I think it is perfect. I can say that being on the outside watching my friend go through this is so upsetting for me so I can only imagine what it must be like. However, I am happy to see that I have respected all your wishes with my friend and makes me feel as though I am doing the 'right' thing.

I will definatley be watching this thread though to see what others think.

Thank you, Sushee. I found the actual process of writing the "rules" to be incredibly helpful. Even if I never get brave enough to give them to the family, I've achieved a lot in setting out for myself just how I want to be treated. At the very least, it's going to be helpful in that if a family member decides to do one of the things that bugs me so much, I've got the words to express to them why it bugs me, and what I'd prefer them to do instead.

And thank you, Dani. Even if my family never sees this, it's nice to know that others will be able to take something from it and be more supportive for their family and friends who are stuck on the assisted conception merry go round.

BW

hun you've done fantastically to put all of that in writing - i'm thinking some of those might get a bit of tweaking and be sent to my family (well, my parents) - especially the "discussing with friends" bit. can't think of anything to add for now - but will keep it in mind next time i'm having a hissy about something insensitive my family have done!

BW it makes perfect sense to me as someone who has never been thru IVF or fertility treatment. I wouldn't in any way find it offensive, unclear or be in the least bit troubled by following your guidelines. (But then, I'm not my MIL or the apparently numerous ppl like her who don't seem to have a sensitive/understanding bone in their bodies and believe the world revolves around them - and I only say this because I think you have similar ppl in your own life!).

I would definitely pass it on, I think the humour you've used makes it an easy read. And if they're offended, who cares? What's the worst they can do? Never bring it or the IVF up again? At least the ball's in your court.

Hey BW that is great .. have another one to add:

When I am down or stressed, dont say 'relax and it will happen', or smthg similar or proceed to tell me a story about some1 who did everything and when they decided to take a break it happened for them. It makes you feel like you are your own worst enemy. Support me by saying, I know you are doing the best you can, have faith and it will happen in your own time.

:)

we were just sitting outside talking, and i read these to DH - he said he had one to add:

"just a quick reminder - money doesn't grow on trees! sometimes we can't just jump at the drop of a hat to run off and do things with you. Fuel costs money. Appointments cost money. Life costs money! When we say no to something, accept that we just can't do it - don't make us divulge our financial situation to you"

can you tell he's a tad bit bitter with my parents? they got *****ty at us for missing a family gathering at the last minute - it's a good hour or more drive from here, in a week that we just couldn't afford to go due to ivf having to be paid, plus travel for appointments... and then tried to make us feel guilty for not going...

Oh Oh Oh - I have another one to add...

Thou shalt NOT casually mention that sometimes is it better just to accept that you can't have children and maybe the IVF money would be better spent paying for private school for nephews.

"Thou shalt NOT casually mention that sometimes is it better just to accept that you can't have children and maybe the IVF money would be better spent paying for private school for nephews."

Oh TaffyLou, that is just awful.

I hope that no one minds me posting on this thread, as I have not been through the IVF process. I have a close friend / relative overseas who after about three years TTC is just about to start IVF. I really want to be able to support her through it in whatever way I can, but want to do it in a way that is sensitive - I'm just about to have my first and this must be really hard for her (although she's got a really warm heart and has been very pleased for me I'm sure it must hurt).

I'm concerned that she might find my support intrusive, but don't want to not offer it. Should I let her know that I'm there for her in whatever way she would like me to be, even if that means not being there, iykwim?

I don't want to be one of those well meaning but insensitive friends who end up being more hindrance than help, at a time when she needs real support.

OMG! Taffy, that didn't seriously happen, did it? What am I saying?! Of course it did! My jaw literally dropped when I read that - I think that's even worse than some of the idiotic things that have been sent to me.

I've mostly got the "just relax" comments beaten out of my family. DH's family, not so much. But they've both been told repeatedly that our fertility problems really are quite significant and no amount of relaxing, holidays or adopting children is going to allow us to conceive naturally.

The financial situation one... yup, will have to work that in there as well. Thanks, BG.

Jennifer - I think that them never bringing up IVF again would be far from the worst thing that could happen... would be more like the best - freedom from stress, awkward questions, embarassing moments in front of others...

I've had a friend suggest that Jewish mourning customs be used to adapt, I've been given a great explanation of how they work, pulled from the blog of a friend of a friend - absolutely brilliant.

BW

As much as I'd love to have given a list like this to my family, I'm pretty sure it would have been water off a ducks back with them. They already treated me like a pariah towards the end and I think if I'd given them something like this, they would have treated me as even more of a freak. But that's just my family.

I actually sent them Infertility Information For Families & Friends and also the 'Empty Arms' link but it didn't make a hell of a lot of difference in the end. But if it's cathartic just to write it down, BW and anyone else thinking about it, I'm all for it, even if you never do pass it on.

i'm thinking i might be able to get around this in a very underhanded way - my bro/SIL are mostly great - as is one of my best friends - i might casually mention that the commandments exist, and then have THEM forward it to my parents.... at this stage, i'm not on speaking terms with my mother, and haven't been on "real" speaking terms to my father for most of my life, so for me to send this directly to them would be a victory for them cos they'd know they were getting to me - if i do it via others, and get it framed as "we stumbled across this on a website..." it might actually have an impact!

how sad is it that the part of our lives that we most need support is the one that is causing us the most conflict and stress??

For me, as well, I always felt like if support was required from them, they should give it without me having to give them instructions as to what they should do, coz it kinda takes the shine off any support they do give, IYKWIM? I much preferred it, TBH, when they just started not talking to me about IVF. I could have done without the whole 'sudden silence when I entered the room' thing, but compared to the all the other things I'd been through with them, I still preferred it.

And Taffy, I got from my mum that I should stop IVF as I was 'depriving the children (I) already have of their needs'. Apparently a new ipod or new video game for my teenagers was more important than our desire for a child.

It occurred to me after I posted last that I sound incredibly jaded. :) I do believe my family, who is known for not dealing with problems and instead either sweeping it under the carpet, or else making the person struggling feel like they're a burden, is not necessarily the norm. So please ignore this embittered person!

sushee, i don't know if it comes from having chatted to you previously, but your post didn't come across as jaded or bitter to me!

i know we all have moments where we feel more than a tad jaded through this journey, and the longer it drags out, the more obvious this becomes!

i agree, i'd rather my family support me because they want to - and i'd prefer they had enough of a clue to be able to support me the right way - but sometimes i seriously think the sensitivity and understanding gene skipped a whole heap of people!

No jadedness detected here either, Sushee. Or if it is there, I'm just as jaded as well.

For my family, the vast majority of them just really have no clue what this is like. They want to be supportive, but end up saying stupid things because they have no idea of what to actually say to me. I tend to feel like a bit of a freak at times - they're all incredibly healthy, incredibly fertile, never experienced miscarriage... and then there's me.

But, as I said before, even if I never find the courage to send this, I've thought through what I want. I know my decision to cut my family out of the loop (which is where we will stay if this never gets sent) is definitely not just a once-off reaction to something. There's many reasons for it happening, and if the conversation ever comes up, I know what sort of things to ask for.

BW

Hi guys. I haven't done IVF or had a miscarriage (I hope I never have to) so I don't really have anything to write in here so I hope you don't mind me writing. I just wanted to say I think you are all so so brave but I didn't know where else to say it. You are such an inspiration and it really shows what awesome mummies you are going to make!!

I also wanted to thank you for writing this down because I do know people who are doing IVF and it's really helpful to know what the right things to say are. Some people have treated you awfully and that's not fair at all. Hopefully I have a bit more common sense than that but putting all this information out there is so helpful to everyone so thanks guys!!