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

I just thought I'd prod this thread back to life for a bit.

I'm currently finding myself completely not coping with how close we are to Christmas, the difficulty I'm having in recovering completely from the latest round of OHSS... and I guess it is now becoming all too real to me that we've had two miscarriages this year...

DH and I both in agreement that we aren't going to be spending Christmas with either family. It appears that a quite Christmas at home with ourselves is going to be much more soothing to us than trying to cope with the chaos and noise of Christmas with my family and (for me) the scary unknown of Christmas with DH's family.

I'm not brave enough to actually call and speak to any of them and tell them they won't see us at Christmas, but my thoughts returned to the "rules" I had set out before... and a long, long letter has been typed up - explaining why we won't see them at Christmas, and telling them about the second FET and second stim cycles we kept to ourselves, and the trauma of the second miscarriage and the fairly long hospitalisation with the second case of OHSS... It then launched into a re-wording of these rules, trying to word them in a much gentler manner...

It's been another cathartic process, but again, it's something else written for my family (and DH's) that they will probably never, ever see. It appears that one is too cynical and sarcastic (I'm yet to be convinced that it is humorous and witty), and the other is three typed pages of "woe is me".

So... suggestions, comments, advice for surviving the silly season with a shred of sanity intact? What have others done in such a situation or at such a time, and how has it been recieved?

BW

Take yourselves on a short holiday, BW. Even if it's only for a few days over Xmas. Go somewhere where no one else knows you and pretend it's your honeymoon again... Let someone take care of you. I'd suggest a bed and breakfast somewhere remote. Leave lots of lovely pressies behind for your families, so they don't think they're forgotten, but go somewhere where the mobile phone reception is terrible.

Maybe if you take care of yourselves and don't worry about anyone else, you will come back feeling a bit refreshed. You deserve a break from worrying about what everyone else is doing/saying/thinking about and to you. And make sure you buy a good book before you go!

wow Jennifer13,
I like the sound of that,I hope you make time just for your family BW you sound like you really need it after the year you had. I'm going to avoid my family a bit more this season just isn't feeling like christmas yet DH has started a new job and as luck would have it he will be working nightshift christmas night and will get home boxing day afternoon so I have advised Santa that he can leave our house until the night after christmas so that DH can see DD open her presents. DH is also working Newyears eve and day but I guess I'm ok with this DD and I are planning to have a quiet few days in the lead up to daddy getting home (we'll see I guess)Merrychristmas to you all and all the best with how ever you choose to spend your holiday period- maybe I should start christmas shopping to get me in the holiday spirit? I'm just to scared to hit the shops this year!!!!

i've had this thread at the back of my mind for a while now - trying to work out how to introduce some of it into conversation with my family without stepping on toes. they're really trying to be supportive (very trying!!) - but just have no idea. i had a bit of a hissy at my mum last night. after finding out that my IVF cycle hadn't worked, mum called my dad at work, who then called me late at night to say "keep your chin up" and some more unrelated and completely inappropriate BS - and i didn't take too kindly to it. anyway, something i put in my text message to my mum sorta felt like it should be in here:

knowing we're going through this is a priveledge, not a "right" - it's not about you, it's about US, and our wishes, our privacy, should be respected. if i'm having a hard time cos something hasn't worked, and i decide i don't want to hear from you, or that what you've said to me wasn't appropriate, deal with it - don't make this about you and how you "won't care in future" cos your gesture wasn't taken in the context it was meant - get over it! this journey is extremely taxing - both physically and emotionally - i don't need to deal with your guilt trips now - they just won't work!

i will admit that i've been much more polite in my wording of the message here than i was last night - but seriously, i don't regret it at all - i had literally JUST found out the cycle had failed, couldn't get hold of DH for a few more minutes and had received a message asking how i was doing - so i was honest - brutally honest!

I have had similar probs withn some of my family not appriciating how difficult it is for my husband and i to cope with other babies in the family after loosing our two children- we should be thrilled of course and relish in their excitement and joy and it shouldnt remind us of our losses at all.....

I have chosen to pretty much just distance myself from them and their "un" understanding ways

BG - I've been feeling the same thing as you have - people need to stop making things *always* about themselves for a moment.

I have said this to my father, mother (especially in relation to IVF and my wedding) and explained the concept of it to other people, and it resonates with everyone I have spoken to.

I think it's probably the simplest, least insulting (or intepreted as insulting) and most resonant way you can tell someone that their behaviour is affecting you.

BW, I think BG is spot on - you should find a way simply to tell your family as softly and gently as you can that it's not about them. This whole process is not all about themselves and then nick off somewhere quiet with DH, no mobile reception just as Jennifer says. Look after yourselves, go somewhere where it is easier to forget about them for a few days, and where the guilt of actually doing the right thing for you first rather than them doesn't reach so far. Remind them when they get back, don't make it all about themselves again. Ask them to let it go for your sake.

Hope you're recovering ok, and please try not to let the whole family thing affect you and stress you too much, as hard as I know that is. You need the most stress-free environment possible to recover properly - perhaps you can tell your families that too....

Miss C

I know I've come into this one late, but man, I have had a little chuckle over some of the things that have been said mostly because I can relate.
My sister actually said that she blamed me for her unwanted pregnancy and thus child, because she didnt want to have her tubes tied incase I needed her eggs. I must add, at no point have I ever suggested that I would ever want a donor egg, nor have I asked.. Some people can be really insensative to the IVF. I found with my first BPN, all I wanted ppl to say when they were told was, Im sorry. Thats it, nothing more. I know its hard for ppl who care bout us, but those hormone drugs, EVIL things.. E-V-I-L....

MWL, the amusing part of that is that your sister having her tubes tied wouldn't prevent her eggs from being harvested later if that's what it came down to. Knowing me, I'd have come up with some sarcastic remark about her giving the child to me if it were my sister. But that's just me... and I don't think my sister would ever be able to think beyond herself for long enough to be able to come up with such an idea of donating eggs.

This thread wasn't really intended to be a once-off thing - I still haven't actually said anything to my family, and I'm not sure I ever will. I do however, think it's important for us to work through what we do want and don't want.

And hopefully there'll be someone looking for ways that they can be supportive for a friend or family member and be able to take something from this.

BW

Thank you for this thread. DH and I have just found out that we will need to go through IVF. This thread has definitely given me some ideas on how to deal with some issues that I know will come up with my family (only my parents know at this stage).

Indie - there are a number of threads for people trying to conceive long term or moving to assisted conception - feel free to come and join us over there! a lot of us are in waiting over the holiday, but getting started again in the new year.

Thanks BW!!! wow i really needed to read these! I think it is humourus and u could look at titling it "the ten commandments of supporting your Family / Friend through IVF". Sometimes it needs to be blunt to be understood. To me it reads like a parody of the 10 commandments iykwim

Hi everyone,

I just wanted to thank you all for creating this thread & contributing to it. I stumbled across it tonight & it couldn't have been discovered at a better time. We're in the middle of our 1st IVF - something I always said I'd NEVER do. Funny how life changes when you have no choice!

We're due for EPU either Good Friday or Easter Monday, & a family member informed me last night that the entire family has decided to come to our place for an easter BBQ (1st time mentioned to us, I should add.) & totally missed the point when I explained that we would be in Sydney at some stage that wknd for the procedure & therefore couldn't commit(nicely trying to say thanks, but it won't be happening). At this point I can't begin to fathem preparing the house for a gathering, let-a-lone how emotional we will be having the procedure done for the 1st time. She just responded "we dont mind. we're coming for the company, not the house"

DH & I both agree that this should be part of the IVF booklet/brochures handed out, but marked for family/friends/work collegues.

If I hear one more story "i knew someone who fell naturally once they stopped" or "my friend did that and they never had those issues" I'm going to email your commandments to everyone I know!

Thank you for the best laugh I've had in months!

Lou, I'm so sorry you have to put up with people being so insensitive and clueless. At this point, I'd probably turn around and tell the awful people who have invited themselves over that they can damned well uninvite themselves because you just won't be there! I hope you manage to figure something out that works for you.

I will admit that the rules were never sent to my family. But my mother, who was the worst at being nosy and intrusive, now completely changes the subject every time I even get close to telling her something related to our IVF treatment. I really don't know whether the insensitive probing questions were worse than the complete couldn't give a shi!t and completely disinterested attitude I'm getting now.

BW

BW,

my mother went through the same process (they should do a study on it as it many families seem to go through the same stages) - she went from being intrusive, prying and overly interested to completely ignoring the matter, changing the subject, and making everyone else around us not talk about it either. I remember a dinner party at my parents' where my sister was 8 months pregnant, and when DH and I got there, the conversation stopped in its tracks. I went over to my sister, who was massively pg, and asked her how she was feeling, and she got flustered and refused to answer.

I found out later that my mother warned everyone not to talk to DH or me about IVF, about babies or about pg on the pain of death, so everyone pretty much just didn't talk to us all night. Way to make us feel even more isolated, people.

Dear all,

Time has lapsed since Sushee's post but since I am new I have been reading through some very old post/threads.

Hubbie and I come from a very large family. My hubbie is the youngest of 10 children and I one of 4. So you can imagine when the two family gather, we have over 40 people. We have both good and bad experiences with our families.

When we finally were put on IVF I did the stupid thing and told my brother in law at a family gathering that we have now decided to go through IVF. Next thing I knew he announced to everyone that hubbie and I were expecting a baby. My nephew and nieces came to congratulate me. I felt so horrible and had to explain to them that was not the case.

Our first attempt was unsuccessful. It was after Christmas that I found out. I was completely heart broken and told my hubbie to call his mother and tell her the news and that we wouldn't be coming to the family camp. I also requested that no-one speak to me about it because it would only hurt me more. I think this did the trick because no-one said a word when the family next meet. I think, it scared them too because it is very unusual for me to make such requests (I have always been the obliging, quiet member of the family and always go out of my way to make everyone happy). I had a lot of hugs and "we love you" which was very comforting. The wonders of quiet empathy!

By our 3rd attempt, we had run out of money (my hubbie had quit his job to do further study before we knew that we had problems). When his family found out we were short of money, they all chipped in which enabled us to go through another cycle. I know...I am so very fortunate..

There is one thing about family dynamic that I would like to share with you all today. I have always been the supportive one to my mother and sisters. I found that this role did not switch when I was going through hell with my failed cycles. This has caused me to stop calling my mother. Honestly I don't think I have the strength to carry two lots of worries, mine and my mother. I find it doubly painful when I told my mother my "bad news" and having my mother continued talking about her arguments with her friends...etc.

Kahlan :hug: some families really do need these rules hey ;)

BW - CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!! only 6 months to go!!!!!!!!!!!! :woot:

Sorry all - but it's time for a bit of an emotional purge. Just ignore me if I am sounding too whiny or grumpy. I just had egg pick up yesterday and I am a real hormonal tornado. Apologies again. Although I must say this has been very cathartic... ;)

Thou shalt NOT tell me to stop worrying because stress has a negative impact on an IVF cycle. I already know this!!! Please be patient with me when I say I really am doing the best I can. I appreciate your concern and I am trying a whole range of things to "chill" but this IS a roller coaster ride and I don't particularly like roller coasters.

Thou shalt NOT, as a medical professional, make me feel that I am asking too many questions about the IVF process and the changes in my body especially when I have fears about Ovarian Hyper Stimulation.

Thou shalt not discuss IVF in front of me as if I am not there and then proceed to give me advice having not done a cycle before. Please...just let me have a little time to tell my story the way I am experiencing it.

Thou shalt be compassionate like my work colleagues by encouraging IVF patients to take leave when they need it. (I am very lucky)!

Thou shalt have a wonderfully supportive partner who goes to the chemist late to buy heat packs and who brings you dinner in bed when you're feeling crappy. (And who also tells you really inappropriate jokes that never fail to make you laugh).

hi all,
this is my first post, i only just discovered this site today.

but just thought i'd share my experience thus far: bit of background for context... we are at our egg collection stage of our very first cycle. we don't live anywhere near our families due to work location.

We have told none of our family or friends what is happening. That is just the way it has to be because of the commandment list! I'm from a small rural area and if my mum knows, everyone knows.

So if i tell her and not my friends there will be issues.

Everyone knows we have to do ivf but we weren't plannign to start until next year sometime. so we just remain vague if asked and no one is really asking. the other reason for keeping it quiet is that it doesn't become the be-all focus for us, we have to engage with our families normally and that's good for our sanity i think.

Then there's the other commandment i'd like to submit "THOU shall not constantlly chirp on about how, if I am lucky, I'll probably have twins or triplets because all IVF babies are such". eerr, go to te back of the class.

I would just like to add, finally, that i love our family an I realise that they mean well and love us and only want us to be happy. they are uninformed and clueless but i know they mean well so that is why i feel i couldn't ever post the commandments to them. I think while we all understand it, I don't think my folks would. They'd just be hurt. but that's just my relationship with them which is usually very close and everyone's different.

So there's something to be said for 'flying under the family/friend radar' but then again we don't have much support when/if it goes pear shaped.

thansk for listening.

I thought of another one - don't know if has already been mentioned...

If you have been included in critical information THOU SHALL NOT pass on information to a third person without the express permission of the IVF couple (particularly if it is someone outside the intimate circle of family and friends).

This causes stress to said IVF couple who have to run around making sure that their intimate circle of family and friends have been informed, when they may not necessarily have wanted to inform them.

(Grrr Dad - gosh I hope that this does not get mentioned at the baptism tomorrow).

Hi Guys,
So good these suggestions. I have one to add for friends and aquaintances:

* The most appropriate response is "oh, bummer" and then closely followed by "are you OK, do you need anything" then shut mouth for 5 minutes, this has the same affect as actually listening.

* Thou shall not say anything to the effect of "at least you already have one child"or "be thankful for that". This process has made me more thankful,and more sad, than you will ever know. If you say that again, to anyone, you forfeit the right to your second born, I will do a great job raising him or her.

* Also I forever claim the right to lecture anyone over the age of 35 who says they are waiting until they get married, get more money, get taller, grow wings, etc etc before TTC, as I know about this particular heart break and you don't, so nerrr!

Also to the naiive cousin.

* if I ever again hear that you are putting off having children right now (you are 36 and should know better) because a baby would interfere with your fun social life right now, maybe in a few years, you will give up the right to my rich Aunts inheritance!

Bit bleak I know, I am a nice person sometimes!

Wow - I am so glad that I came across this thread. It's made me feel as though my emotions over my sister are normal.

She has clearly told several people about my infertility, including her beautician. And if I have to hear one more time "just adopt, my friend did and she's so happy now" I think I will fly down to Sydney and strangle her.

Put the icing on the cake was when she told me before xmas that she had finally thrown out the cot and change table she had been keeping aside for me for all these years, as it's time to move on..........that was a tough one and brought out a lot of emotion from me.

But I also love it when sisters, sister-in-laws and mother-in-law all insist on telling me and DH what we SHOULD be doing to fall. They're all such experts on endometriosis. And they know of someone who tried this, and someone who tried that. Oh, and have we tried this. NO we are obviously stupid and haven't researched or tried a thing.

I know they are not devoid of emotion and understanding, but they just don't back down. I'm too scarred to tell any of them that we are weeks away from our first IVF cycle.

BW - your "Thou shalt not..." statements are priceless. With your permission I may use modified versions of them in need.

Go for it, SK. I'm in Sydney and would happily volunteer to strangle your sister for you if it becomes necessary. You'd think they'd start to get it with time, but it never seems to happen.

Hang in there - the end result is so worth it! :hug:

BW

BW
Was very amused by your offer! ha. Thank goodness for my brother, who just said oh, bummer. what a great man.

what a great thread...great points. I have a great family but it's others around me who hit me with the stupid insensitive comments.
I am still getting the "it will happen when you arent thinking about it, you just need to relax and put it out of your mind"...yeh right.

I know this thread is a bit old now, but I need to vent. I haven't told ANY of my family. My mother is an idiot who successfully 'planned' her offspring (to the minute) and who doesn't even believe in PMS. Worse she is the least discreet person on the planet, no really. My auntie did IVF and I personally heard my mother announce (and go into huge amounts of detail) to 1) stranger at the bus stop, 2) waitress in a restaurant, 3) every family member and friend. Further, she feels it is her God given right to have grandchildren and asks me at EVERY available opporunity when DH and I 'plan' to have children. I actually avoid seeing her alone as then I can't leave, ignore her, have something urgent to do lol! She also make comments about my cousins like "you'd never know they were IVF" and "they look normal" - :wall:

Thanks to BW for starting this thread. I have got lots of laughs but also quite a few jaw drops, too.

Buffy - In some ways your mother reminds me of mine. I love her to bits but she tells anyone from the milkman to the baker what's going on in her life, which of course also includes everything going on in mine! It took some stern words from my partner about this being a private issue for us for it to sink in, and I have to admit she is much better now. But I am lucky to have a good relationship with my mum, and we talk nearly every day :redface:

Can I add a couple of commandments:

Thou SHALL NOT talk about how `fertile' you are to your friend who is undergoing multiple unsuccessful IVF cycles. I met up with an old school friend who I hadn't seen for 22 years and she told me she was so fertile she needed to have an internal device fitted after her third child - literally minutes after I spilled my guts telling her I was doing IVF!Aaaagh, the insensitivity of it all.

Cilnic nurses SHALL NOT say to you when ringing up for BT results and it's a BFN, `Did you think you might be pregnant?' I mean, honest to god, what the ...

This thread has gone hasn't been posted to in some time but with a dear friend of mine about to start IVF I am doing as much reading as I can in order to support her through this.

I realise now that I have pulled away from her somewhat for fear of being too intrusive so I hope that by reading your stories of what they could have done better - I won't have the need to once pull my foot from my mouth :hug:

I know this thread is old, old, old, but I have just gone through my first IVF cycle (no transfer due to OHSS) and thought I'd share some thoughts, both from the beginnings of our journey until during this cycle.

I do have a very supportive family on both sides, but I don't think it can be stressed enough that regardless of supportive or indifferent ppl, if they haven't ever had to go through it, they will NEVER understand. Thus the following rules would apply to me, in addition to most others I have read here:

thou shalt not say "oh my friend has that issue, that's no big deal, she just took these tablets and got pregnant" (maybe she was lucky and clomid worked straight up for her, maybe she didn't disclose the whole ordeal of her treatment to my SIL)

thou shalt not say you would like to read my AC info book and then leave it on the bench in the exact same spot every week we visit, obviously never been read

though shalt not write on your facebook status that its easier to work full time than be a full time mum (a friend who recently went back to work after 18mths off after her first when she wasn't even trying)

though shalt not ask me how things are going and when i mention i was having a hard time with some of the treatment and tests, tell me "oh that's nothing to when you are pregnant, some of those tests aren't very pleasant... like internals" ummmmm i have someone sticking something up my "internals" numerous times in one cycle so I think I probably already outscore you! (same friend as above)

and lastly my dear dad, thou shalt not answer the phone when I ring with "oh hi love how are you?... I'll get your mum" I'm still a person you can talk to!!!!

ok I think that's all I have for now... all of these things were said by ppl who I know care, but just won't ever get "IT" and I guess we can't really expect them to. I mean how many of us know exactly how a woman gets pregnant before we are faced with fertility issues and kind of have to know? We get the most basic of info in sex ed at school and I think young people (girls in particular) should be told more about the cycle. If people knew how it doesn't just happen when you have no birth control and have sex and that there are actually a LOT of things that have to line up just right, then maybe more people would have a knowledge that goes back further than when their "broken" child comes to them and explains it. (By "broken" I mean from my experience I think my parents feel like there was something they could have done differently to stop this happening and make it "better", I certainly didn't mean that any of us are anything but normal).

Ok I think I have flip flopped between cynical, jaded and empathetic of family/friends so I might leave it here before my soapbox breaks. :)

I've just been reading through this thread and I have switched between laughing at some of the comments and sitting in shock at some of the things people have said.
I'm currently 4 day into the 2ww for our first IVF cycle. Wow- Crinone is fun isn't it?

So far we've been really lucky with our family and friends, we've had a lot of support and a close friend of mine is going through AC as well so we've got some people to really vent to. We haven't had to share any results yet though so not sure how that will go, either way...

Thank god for this forum though. I haven't really posted much but been reading for a couple of weeks and it's really good to hear people who really understand. Nice to know I'm not on my own with all the psycho thoughts etc.