Monday, 5 August 2013

What do you say?

by Bex

I'm posting this at the request of Bella who, among others, including my parents, have commented that they often don't know what to say to me when I email or call with bad news after our IVF appointments.  They worry about what to say but don't want to say nothing.  My Mum recently said she knew she upset me once when the line went quiet - I didn't know how to respond to her well-meaning but (unintentionally) hurtful comment and ended up changing the subject.  She has since admitted that she just doesn't know what to say to me in this situation and I can understand that.  This post is intended mainly to ease my own frustrations (I cope by writing about things) but also to try to help any of you who don't know what to say in similar situations but want to say something.  It simply explains some of the feelings involved from my point of view and what I personally do and don't find helpful to hear during the difficult times, with some suggestions relating to this which may also help with other, similar situations.

We've received so many messages and phone calls since I wrote about our problems conceiving and they've all been completely wonderful, full of love and best wishes for us.  For those of you who may know someone going through something similar and really don't know what to say but want to offer your support, this post is for you.  It is intended purely to be helpful when you might not know what to say.  It's simply my opinion and points out a couple of things you might want to avoid saying despite thinking they might be helpful, it is not addressed to anyone and I hope it doesn't sound harsh as that is not my intent.

Even with the absolute best of intentions and with your heart in the right place, you can inadvertently upset or frustrate someone so easily without even realising it and that isn't anybody's fault, it's just that it can be so hard to find the words.  I know I struggled to know what to say when a friend of mine went through a very difficult break up and when another friend had a miscarriage.  What do you say when things are so awful and you want to make them feel better?

You won't.  
  
If they are suffering a serious and distressing life issue like miscarriage, divorce, problems conceiving, cancer, death of a loved one... there are so many things, chances are nothing you say will make it better.  (Some of these problems are obviously bigger and more distressing than others but when you're in it, when that big thing is happening to you, it's extremely difficult to keep it in perspective some days.)

What you can do is simply say...

I am so sorry things are really crap for you right now and if you need me I am here.  I can just listen while you have a good whinge or I can try to take your mind off things for a while.

The lovely D (aDizzyGirl) offered "And if you need any help with the retail therapy, I'd me more than happy to keep you company whilst you buy all the maxi skirts in Glasgow." for example, which made me chuckle.

And someone else sent us this lovely note:

"Have no idea what to say other than I'm thinking of you guys a lot and sending so much love xxxxxx xxxxxx 
Must feel like you've been punched in the face. 

So sorry this is happening to you."

And this one from someone else:

I just wanted you to know that I am keeping everything crossed for you and am virtually holding your hand from here.

Or this one from someone who went through the same thing:

What I am trying to say is that I get it, the rage, fear, unstoppable tears, hurt, unfairness and all the other shit that this brings to your door and that if you ever want to talk to someone who won't judge you for locking yourself in a wardrobe and crying for an afternoon (oh wait that was me),  I'm here.

And hugs, hugs are always good!  We've had so many more similar messages and hugs sent our way and they've all made me cry and/or laugh!

Some people really understand but unless you have been through it, I don't think you can.  Although you want to offer comfort and keep hopes up, it can be difficult when you don't know how it feels.  While it may seem like saying "stay positive" and "have hope" and "I'm sure things will all work out" are comforting, they can be exhausting at times when actually things do just feel pretty rubbish and you need to be sad for a little while to get it out of your system before you get back to being busy and trying to forget about the sadness.  The problem is, it will always be there as the fear never goes away no matter what anyone says.  It is an all consuming thing trying to make a baby and when it's not working, even more so.  Sometimes it's just nice to hear that it's OK to be sad, as much as you might want the person to be happy it's just not possible all the time and while I often just want to be alone and wallow, occasionally I might want to share my fears, sadness and seek comfort.  If hugs are not physically possible, just the fact you are listening or saying that you understand is all it might take.  I remember phoning my mother-in-law upset after one of many stages of bad news and her telling me not to cry and that there is still hope.  I completely get the mentality behind that, people don't want their loved ones to be down.  Not long after (not even an hour in fact) she sent me a message after having read my blog post that day.  It said:  Just saw your post and the little poem - glad that you phoned - please do so any time.  Don't bottle things up, share as you did!  xxxx
She gets it.  I am so glad.

Telling me to be patient is quite possibly the worst thing you can say to me if I am upset.  When I am upset, it is not about being impatient for my baby (although admittedly I am), it's about not knowing if my baby will ever be.  When I am stressing about waiting for appointments, it's not because I just can't wait for the next stage, it's because, the sooner we get each stage done, the sooner I will find out if it's worked, if we're that next step closer to knowing how our future might pan out.  Sometimes it's just too easy to get wrapped up in despair that this is all that matters and it's not happening but telling me to be patient and stay positive isn't going to help me cope.

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In our case, it is physically impossible for us to conceive without IVF and we know this is our only chance to have our baby.  If it never works we will be looking at adoption (already are really as there is so much to think about) and although I'm sure it will be very fulfilling, it comes with it's own challenges and of course the fact that I will never have my dream of growing my child throughout pregnancy, something I'd always taken for granted (and assumed I wouldn't even necessarily enjoy as I have known friends going through horrific pregnancies) and wanted to experience.  I have numerous 'baby' related ideas and photos on a Pinterest board started years ago, before we were even married and always assumed I would be able to utilise some of these ideas one day.  It is painful to think we might never get to experience bump photos and pregnancy/birth announcements.  So of course, I just try not to think about that - easier said than done I'm afraid.   I know things will just work out how they will and there's not much else I can do so it's just a case of getting on with it. 

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I've heard lots of stories about so and so whose aunt's brother's son's wife went through so many cycles of IVF, gave up and then their miracle baby just happened or so and so's sister adopted and then "when they relaxed" a happy miracle baby came along.  This will never be our story and it can be quite upsetting to hear them told as a beacon of hope which for us just isn't there.  Neither will "relaxing" bring us our baby.  A team of doctors and nurses just might, though.  :)

We are hopeful or we wouldn't be putting ourselves through this ordeal of clinic appointments, injecting drugs and so on.  We are staying positive or we couldn't get through it at all and knowing we have the love and support of our friends and family (and my readers) is definitely helping with that, however it comes, even with those stories and wishes for positivity.  I don't mean to sound like I am complaining, we feel so lucky to be surrounded by people who care enough to get in touch and try to help in any way.  I just wanted to write this to perhaps make it easier if you don't know what to say to that person in your life who's going through tough times.  It can be difficult to know what to say but saying nothing is undoubtedly worse, as Fee mentioned in her much more eloquent and heartbreaking post.

In particular, these few sentences:

"If a loved one goes through a similar experience, remember who they are. You know the people you love. Just listen. Let them be scared. Resist the temptation to say ‘everything will be ok’ and instead acknowledge their fears."

I couldn't agree more.


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15 comments:

Anonymous said...

Beautifully written (again) Bex. We also had no hope of a natural conception and had IVF - eventually we were very lucky and now have our baby - just wanted to say that I agree with everything you said...people want to make you feel better but sometimes you need to grieve before you can get on with things. For anyone having fertility treatment at the moment our team suggested acupuncture along with their treatments, it worked for us & has also helped many other people we know so please consider it, it's very easy to forget the holistic side of things when everything becomes so medical (obviously check first as some holistic treatments are contra-indicated with fertility treatment) Hugs to you both, you are a very brave & inspiring couple. Emma J

Fee said...

Bex, as ever you are gracious and inspiring, even when talking about a crappy situation. I am glad my post on AOW has helped a bit : )

I think this is all wonderful advice - I may forward it to a few people I know. As you know, I am fortunate to conceive very easily but will struggle to carry a baby past 20ish weeks without significant medical intervention that is not 100% successful. If ONE MORE person dismissively says 'It'll be fine' to me, I might strangle them. For real.

Thanks for highlighting a topic that is so often kept under wraps. And I'm still keeping everything crossed.

Lots of love xxxx

Kimberly Hughes said...

What a beautiful post. Sending big hugs your way hun, I'm sure you've helped a lot of people today xxx

Joan Hunter Dunn said...

Lots of this also works for friends who are single & want to meet someone. Saying I'm sure you will isn't helpful.
Not sure where I heard it, but thinking when a friend is talking through a situation 'Do they want my advice or do they want me to 'just' listen?' Really helps me, I hope, in being the best I can for them at that moment.
Sending you both lots of love x

Amanda M said...

I think this is a brilliant idea. Personally I'm so worried about what I say and how it might be misconstrued that I probably sound very stilted (maybe I overthink it). And of course you WANT to say something that helps and really it's not possible - you can only sympathise. And that seems pretty inadequate.

Of course, then there's the other side of ridiculously crass comments like poor Fiona D H - was pretty shocked at what someone said to her. They're the people that need to read this post and probably won't.

Ax

Amanda said...

Oh Bex, hugs and hugs and hugs.
The "patience" speech is the worst.... you only learn that you are dealing with this after months and months and months of patiently waiting for something that seems so elusive.
The "just relax" or "go on a holiday and it will happen" theory is just so ignorant. That may work for people who a priori do not have fertility problems at all... taking holidays does not really help if there are physiological / biological problems somewhere.
Someone lately said something like "they say it's all in your mind", and at that, I really wanted to strangle someone, because that is just putting the blame on us on something that just happens to some of us. It's like saying if only you were calmer... if only you would forget about it. They have no idea how calm and positive this all started, how maybe you naively thought you would conceive within 2 or 3 months.
Of course staying positive, keeping the hope alive, and in general striving for being in a good place mentally is key to surviving this... but to do that sometimes you just have to let it all out, to talk, to cry, to have a bad day or 3.
I think of both of you constantly and just wish your baby will come to you soon.

Caroline W said...

I think I'm going to print this off and send it to every one I know ;-)
Despite having been through something pretty cruddy myself in the last 6 months I still don't know the best thing to say to people when they go through hard times.

Wishing you all the luck in the world Bex, you seem like such a lovely person and I really have my fingers crossed for you.
xx

Ashleigh M said...

Thanks for this post! This and others like it keep reminding me that people don't want solutions they just want to be listened to.

My default reaction is to try and find a way to make things better but I am trying now to just listen and be there. It's tough though!!

Hugs to you and Nik xoxox

Gemma C-S said...

I needed this when you first told me what was happening, and I had no idea what to say. Except that I love you. Which I will say again.
xx

aDizzyGirl said...

My email that made you laugh did take 3 days of thinking about - I was so desperate not to say something inane or stupid, but the words were hard to find.

I think people could learn a lot by thinking before they speak and putting themselves in your shoes. And I would punch someone in the face if they told me to be patient.

Andrea Marie said...

Thank you for yet another brave, honest and open post. Thank you for reminding us that sometimes we say it better, when we say nothing at- by just being there and listening and holding a hand whilst our loved ones struggle. Sending you both my love x

Vikki said...

Fabulous as ever Bex. xxx

Ali said...

Crying reading this to be honest. Thinking of you and Nik. Hope to catch up soon. Lots of love. XXX

Mrs Madrigal said...

Bex, I've been there. I feel for you and your partner because I know first hand what a hideous, heartrending, often nightmarish thing that IVF can be.
The best thing that anyone said to me during that time was, 'if you need to, clear the day, close the door of your room and scream and cry for as long as it takes. Let the again out'. I found little comfort in forums and message boards (baby dust and angel wings are not for me) and I found it hard to be honest with anyone about how I was feeling.
A month before my first IVF attempt, my mother passed away. My third attempt was successful and a week after I found out I was having twins, my father passed away.
There is nothing to say to that.
Stay strong. Know yourself. Nurture your relationship. Survive it.
Xx

Siobhan said...

I am always sending you lots of love. xx

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