Thursday, 5 September 2013

Why is it taboo?

by Bex

I recently read a blog post about someone who went through a miscarriage.  It was terribly sad, although they were seeing positives in it (they had thought they might never get pregnant in the first place), but what really struck me was that the person spoke about how lonely they felt going through this difficult time and how she had to "act normally".  Because they had only told their parents.

Now, obviously everybody deals with these kinds of things differently and you may need time to come to terms with something before talking about it.  You may even be the kind of person who doesn't like or want to talk about things and doesn't find talking about it helpful in dealing with emotions.  Obviously you need to do what's right for you and some people are more private than others.  But what I don't understand is why people who would most likely benefit from being able to share this news, talk it over with friends, gain support from colleagues and not have to lie, still feel they need to keep it a secret.  It does seem to be expected.  It's the main reason people don't reveal pregnancies before the first, most precarious, 3 months are over.  In case something goes wrong.  And I get that.  I get that having that secret just between you could be fun too.  And if something did go wrong, you can deal with it in your own time, without questions or expectations.  I just don't get the idea that it is ever wrong to be open about it if you want to.  I think I would need people to know what had happened so I didn't feel like such an important moment was being ignored.

I'm so glad that there are outlets such as A Practical Wedding and Any Other Woman where you can write anonymously about your feelings and what you've been through.  It must be a great relief if you do feel unable to talk to your friends about it.  To receive that support from anywhere, even from random people on the internet must help as it has me when I've written about it.  I just know I couldn't cope having to pretend all the time.  To have to suffer friends' stories of babies and pregnancy during a difficult week, having to smile and be excited for them.  I can't imagine they'd be pleased to know they were gushing while I was suffering an internal agony thinking I may never get to experience any of the things they are talking about.  I've said before that I don't mind hearing about these things and am genuinely happy for friends who do go through this awesome life-changing time in life.  I certainly don't expect them to hide their excitement and I'm happy to listen.  Just not all the time.  Sometimes, when things are particularly tough, I need to avoid those facebook announcements, pictures of scans and happy people with their stories.  And if they didn't know about our situation, they wouldn't understand that.  They might think I was just being an ignorant cow rather than trying to cope with difficult feelings.

When a friend recently announced on her blog that she was pregnant, it took me by surprise, during a slump and I just switched off.  I didn't leave the same congratulatory comments as everyone else.  I didn't tweet or even read her tweets.  I just avoided it.  Until I felt better.  Until I could be genuinely excited for her.  Which I am, now.  I have emailed her and she understands, as I knew she would.  I just can't do pretending when it comes to something that is so emotional for me.

Now I am not saying that I think everyone should be telling everyone about all of their personal heartbreaks.  I am well aware that some people don't function like that.  I just wish that people could feel able to share their stories if they do want to.  I am only able to speak from my own personal viewpoint and experience.  For some people it may not be an option.  Maybe people don't want to risk making friends feel awkward if they're pregnant/have children (something I sometimes worry about and try to avoid by not going on about it too much!).  I am lucky that I feel able to talk about it at work without it risking my future career as there are no promotion options for me and I'm happy with the stage I'm at.  In fact it would be more difficult to explain why I need time off if they didn't know - especially as I'd need to book off whole weeks in advance as I have no idea until nearer the time which day/days I might need to have procedures done and how do you explain that?  And if they didn't know, they'd no doubt have jumped to their own various conclusions by now  with me taking time off and there have been quite a few teary moments at work I'm afraid.  As it is, I am able to give them a few days notice (as soon as I know) and just take the time that I actually need during treatment.  And when we got the unexpected bad news last time, it was over the phone while I was at work, when I'd called expecting to find out when we were to go back in and I was just utterly shell shocked.  I went to the manager, said I needed to go home and she just hugged me and dealt with it.  Because she knew.

I am just not one of those people who like to keep things in.  I heal by discussing things that go wrong.  By having someone's shoulder to cry on and someone to listen when I want to voice my worries.  Maybe it's because my parents aren't in this country that I felt I could confide in my friends easily when we found out we had fertility problems.  And when those problems became more and more tricky to deal with, I had my close friends on standby, already understanding why I was perhaps not the same person one week to the next depending on what was going on.

To have that understanding without having to lie or wait until I could only speak to one certain person was precious to me.  I don't cope well bottling things up.  I told my work colleagues early on so they could understand why I might be a bit down for a few days or more frustrated than usual when things go wrong at work or just wanted to be on my own during breaks sometimes.  Losing more control over my life at that time was very difficult for me and they helped me get through it.  Just by giving me a little more help when I needed it, making sure things got repaired as quickly as possible, or that simple tasks were done right before being passed on to me (WHY is it so difficult for some people to fill out a very simple medical form!?).  Basically, I wanted them to understand I wasn't just being a moody bitch.  I was going through a tough time and sometimes struggling to cope with daily life on top of everything else.  (I'd also like to point out that I do make an effort not to be a moody bitch and do not take advantage of their wonderful support!)

When I told them, through tears, it was a relief.

When I was able to discuss our problems here on the blog, I felt the same sense of relief.  I am always honest on here and when I was going through difficult times and writing about it without giving the full story it was tricky for me.  My husband is one of those people who prefers not to be as open about things and that's fine but when he felt able to let me reach out, to explain our situation, I was so grateful and able to fully be myself on here again.  I think he understands now, how much writing about it helps me and he's seen the support we actually get on here from you guys and how that helps me too.

I think part of it is fear.  Fear of being judged, of what people might be saying about you when you're not there.  What conclusions they might be coming to without having all the information.  That they might be thinking the same things you are about being a failure.  The feelings described by the person who wrote about their miscarriage are the same feelings I have felt at some stage during our attempts to conceive.  And the thought of someone else confirming your worst thoughts is pretty awful.  In my experience, however, I've found people to be utterly supportive and wanting to help us through our struggle.  (Obviously I don't know what they do say when we're not there but I can't imagine we're that important in their lives that they'd be discussing us anyway and I certainly can't imagine anyone we know being cruel about it.)

I received a lot of private messages from people having been through similar troubles commenting that they wish they were or had been able to be more open about it.  They thanked me for bringing the subject out of the dark.  I'm certainly not the only one doing so but it seems there are a lot more of us who do feel it needs to be kept secret as it's one of those things that just doesn't get talked about.  I hope we can change that, for those who do want to let the secret out.  It's such a stressful thing to go through as it is, keeping secrets and feeling alone isn't going to help in the slightest.

Sometimes being on my own is what I need.  But it being the only option?  Definitely not for me.  People also told me I was brave for writing about it so publicly but it never felt brave.  It was purely selfish.  It helped me and I wanted people to know what was going on because I knew it would make my life easier.  I like to know my friends are there for me when I need them.  And I'm happy to say they always have been.  I can't help thinking that if more people talked about these things, it would be easier for others to do the same.  There would be no need to feel uncomfortable talking about it.  Despite those feelings of guilt and being a failure, we need to remember that miscarriages and infertility are no one's "fault".  They're just heartbreaking medical conditions that happen way more often than people seem to realise as they're so often kept in the dark.

I only hope that by writing about my infertility I can inspire others to feel more comfortable being open about their own similar experiences and hopefully less alone.


Fee said...

Again, this is such a lovely piece of writing Bex. I'm sure a lot of people will find it really comforting.

As you know, I'm coming from a slightly different angle of a giant, flashing loss at nearly six months pregnant last year so there was no avoiding telling people about that. However, the way some people reacted has definitely affected what I do now.

We've had a couple of other things happen this year (unrelated to what happened to our son but in a similar ball park) that I don't particularly want to talk about and only a few people know about. A big reason for not sharing these things with people is because of the totally crap way in which some people reacted to the loss of our son but also because of the reactions of some people who do know. Examples include:

- 'I look at you and realise how lucky I am'
- 'I didn't know this sort of thing could happen until it happened to you,, it makes me worried'
- 'There must be something wrong with you'
- 'I don't want to be one of those people like you who keeps having bad things happen to them'

I don't want to be pitied, I don't want to feel guilty, I don't want to have to explain that there is nothing wrong with me, I just have really shitty luck.

I think because the loss of our son had to be so public, I need any further disappointments to be private to me and my husband (with the exception of our closest friends). I'm sick of advice and speculation. And I'm sick of people feeling sorry or me when they actually have no idea how I feel or that despite the bad times, I have one of the happiest marriages of anyone I know which is a lot more than some of my tactless friends can say.

I think I just blasted out about a year's worth of frustration!

I totally agree with your post Bex. My situation is just a bit unique! Sending you so much love as ever xxxx

Bex said...

I'm so sorry you've had to deal with such thoughtless comments Fee!

I can completely understand why you find keeping things private is easier in your case, and others may indeed feel the same way about their own situations. As I said, I am only speaking from my own experience and have been lucky that the only things that upset me when people do know is when they try to offer stories of hope or tell me not to be sad (as I said in this post - but these are said with the best of intentions and I much prefer that to the probing questions about when we might start a family from nosey people who don't or didn't know our situation. Although I think that only happened once, it was more the fear of it happening and how I might react that worried me.

Having even just a few people you can rely on for support makes all the difference, I just hate the loneliness that can come with keeping secrets. I'm a big believer that sharing makes life better, the good and the bad.


Fee said...

I totally agree - I think I've just been scarred by a few select eejits!

Anonymous said...

I've been debating whether to send in a post to AOW (anonymously!) about exactly this subject because I've been wanting to get some other opinions on it too.

I had some really bad news recently, told a couple of close friends about it, and have felt so let down by their reactions that it's actually deflected from the original bad news by making me feel incredibly lonely. Maybe if I was less shy or less worried about putting things out for others to see then I would have got the support from strangers that I didn't get in my friends and I am certainly asking myself why I didn't ask for help on Twitter or AOW. Pride, I suppose, and feeling like noone was really that bothered because my friends had acted like they weren't. I don't know...

But I am so very very glad that you have got support when you needed it and that by sharing your experiences other people have felt the same. I have so much respect for you for sharing!

Bex said...

Anon, that is such a shame you received that reaction from people you trusted. I urge you to send in that anonymous post as I have no doubt you will get the support you need from that amazing community! Honestly! And please, if you want to, email me - I promise to respond and keep anything you choose to share private.

I wish it was easier to be open about difficult subjects and I realise I have been lucky in that regard as sharing has only made it easier for me to share more. Please don't be put off by what sound like friends who really don't understand what it feels like to receive bad news and need support. I hope you find it somewhere else. xx

Unknown said...

As I said in my tweet to you I am a great believer in sharing and many people know about my
troubles. We mistaken shared our pregnancy news at 9weeks and when we got awful news at 12
I was grateful that I had a group of people to lean on. A worse conversation would have
been to have to tell them I was pregnant and now I'm not and why.
But I think you hit the nail on the head when you said about giving people the information.
I hate people only knowing half the story, thinking they know what I went through and saying
to me what they think I want to hear. I would rather they know the full picture. Also I find as you say they are less inclined to make insensitve comments when they know.

Amanda said...

Oh Bex, you are so so right. I truly believe that sharing stories makes us all better, more capable of empathy and understanding each other. Which is why I have also talked about it... I also don't understand why there is such a taboo around infertility or miscarriage, these are things that happen and have always have. I think it also changes per culture. Not regarding infertility, but miscarriage, in Mexico it is something that is very known / talked about and people are aware of. I would not share pregnancy news at the beginning except with very close family and friends, people who we would tell everything and count on no matter the outcome.

However, in contrast, I have found going through infertility very, very isolating, at least at the beginning... while at the same time realising that it happens to a lot of people. And people go through it in silence while we could support each other. (As you say, this depends per person, I totally understand some people do not deal with things by talking / expressing them, or want to remain private for many many reasons).
But the isolation of it... it almost seems like it is some kind of awful curse, like leprosy or the black pest in the middle ages, and you go through it all alone (until you talk).
And like Fee says, it's just some of us get worse luck than others, and it is just medical conditions that are extremely hard to navigate.
I think people are afraid to talk about this because they don't want to stop and think it could happen to them... it's like closing eyes to an awful possibility, when it's just random. Bad things happen to good people all the time for no reason.
Hugs Bex... and if you ever need to talk / vent just know that I am there and you can email me anytime.

Unknown said...

Bex this post is just so well written. We discussed it before you published it and you know that my thoughts are different to yours on some of the points you raise but you acknowledge the fact that people deal with things in different ways so well in the post.

Fee it is awful to read what some of your friends have said to you, I'm glad venting your frustration in the comments has helped!

And Anon I hope you are inspired by Bex to send that post to AOW, I'm sure the community will respond to your post with the usual love and wise words. Sending you some virtual hugs.

Roz xx

Unknown said...

I find this really interesting. M is not big on sharing stuff, just because that is not him so some things I don't share that much as they are not mine alone to share.

I love this writing and find it very thought provoking. I share a LOT less than I used to, but I do think I used to share too much? I think in your circumstances it is right to have shared if it now means you get the support you need. And I am hoping so much that this next round works for you xx

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