The Pain Olympics

There’s a lot said in our community about the Pain Olympics – that there shouldn’t be a judgement about who has the most pain, who has it worse.  I’ve been hearing this for ten years.  And I will admit that I’ve never been completely comfortable with it.

I don’t agree that there are no degrees of pain, that all pain is the same.  It’s not.  My stubbed toe is not as painful as your broken arm.  Your broken heart is different from my hurt feelings.  Speaking personally, my TGN is worse than my virus, and right now, much scarier than my infertility. 

But that doesn’t mean we are not allowed to feel those feelings.  Just because someone might be grieving or hurting worse than us, it doesn’t mean that our own pain is not legitimate, and that we’re not allowed to grieve.  Anyone grieving, hurting, vulnerable and/or stressed deserves our sympathy.  

I am going to speak personally here though.  It helps me to put my own pain into perspective.  Perhaps it is easier for me to do this now, because I’m no longer infertile (ie I am no longer trying to conceive), because I’m comfortable with my life, because I can look back and see my progress.  My pain when I lost my first and second pregnancies, when I thought I was facing cancer, and when I learned I would never have children – this was real pain, and intense.  I struggled to pull out of it.  I remember being told I might have cancer.  I couldn't process it, and focused only on the grief that it would mean I couldn't have children.  That was the bigger pain for me at the time.  My doctors and nurses couldn't quite understand it - but it was my pain, and it was legitimate.  Still, even then, I knew that at least (at the time) I had my health, I was financially secure, I had my brain.  I knew that there were others worse off than me.  And I think that perspective was important.  It allowed me to pull myself out of the doldrums.  It allowed me to move on.

As our pain fades, I think it is only appropriate to be able to put it in perspective.  As new pains emerge, it is then easier to put them in perspective too.  Perspective is important.  But I’m talking about our own, personal perspectives.  We do all stand and judge other people’s pain, even if we try not to.  It is inevitable.  Other people might look at me and say “you never had anything, you never lost anything, you don’t deserve to feel pain over your pregnancy losses, over the fact you can’t have children.” We all know that’s not true.  I know what my infertility has meant to me in my life.  They don’t.  Equally, I can’t try to tell anyone that their pain is less or more than mine (even if I think it).  I can however tell myself where my pain fits on the scale.  And I will. This doesn't mean I don't let myself grieve.  I do.  (Believe me, I've cried a few times the last few weeks).  But I also remind myself when I should be grateful too.  If I didn’t do that, if I didn’t develop that perspective, I could drown in my own pain, and yes, my own self-pity.  If I didn’t put my pain into perspective, I think I’d struggle to understand that I have a glass half full, not half empty. 

Even now, after three of the worst weeks of my life, I know that I am lucky.  My TGN pain – touch wood – seems to have receded, and for now at least, I am pain free.  And I think of the others who have TGN who are not pain free, and I feel for them.  And I look out the window, at this beautiful autumn day, at the blue sky, at the setting sun on the trees on this last day before we put the clocks back for winter, and I can breathe in, and feel good.  Because I know, that right this moment, I don’t have it so bad. 

Why me?

This is a commonly asked question by infertility patients.  We feel separate and alone.  “Other” as Mel wrote abouttoday.  When it happened to me, I couldn’t believe I was in this position.  And like so many women before me, and after me too, I asked “Why me?”  But then I heard a cancer patient say, about her own situation, “why not me?”  And those three words stopped me in my tracks.  Why not me indeed?  I had no answer. And therefore no option but to accept.

This last week I’ve been suffering from a second attack of trigeminal neuralgia.  I wrote about my first attack – vaguely, as I have struggled to “come out” about it – on A Separate Life here.  Interesting that I feel more comfortable talking about it here, where many of us have had unfortunately medical diagnoses..  I had been hopeful that my attack two years ago was a one-off.  My neurologist said that was possible.  But no, it apparently isn’t.  The pain is overwhelming, the drugs that deal with the pain take a while to kick in, make me feel dreadful, and now I’m suffering from chills.  Ironically, we had one of the best, warmest, finest weekends of our pathetic summer the last two days.  And there I was, huddled under two blankets shivering on the couch.  Ridiculous!

And so I’m feeling a bit “other” and have a bit of a “why me?” attack.  After all, is it fair to have had three rare conditions in my adult life?  First, dengue fever.  Then infertility – and a cornual ectopic pregnancy that is very rare – and now, as I was trying to get my life in order, trigeminal neuralgia, otherwise nicely known as the Suicide Disease.  I’ve looked on-line for support groups, but they’re just terrifying.  I'm not ready for them.

And I thought about Mel’s “otherness” post.  Reading it, it felt self-indulgent, a bit “woe is me we’re infertile.”  When it could be so much worse.  I thought of Guiliana Rancic and a friend of mine – infertility and cancer.  I thought of another dear friend of mine – infertility and fibromyalgia and lives with pain constantly.  I thought of a child who is very dear to me with cystic fibrosis (and her parents dealing with it).  I thought of a friend coping with her fathers’ Parkinson’s and Alzheimer’s.  And I thought of all those people dealing with conditions or life problems that make them “other.”  And I thought, we’re really not that different, none of us.  Then I got to Mel's last paragraph.  I should have trusted her (but it’s 3 am and I’m full of drugs and my brain isn’t working very well and I’m exhausted).  She wrote, “They had no idea how deeply I felt my otherness, just as I had no idea looking at them how deeply they felt their own othernesses.”  It expressed my feelings exactly after a horrible week.  And it struck me that the one thing that binds so many of us in this world is our “otherness.”  I wish we could recognise that, and appreciate that, rather than just look for the similarities. 

PS.  I am aware that a 3 am blog post may not be the wisest thing, so come tomorrow in the light of day, and hopefully after some more, peaceful, sleep I may decide to delete.

Why I Blog

This question is being asked a lot lately.  And I’m glad it has been asked, because it has made me think.  I’m going to be a bit more specific - Why do I blog on this blog?  Because as some of you know, I’ve been blogging for over five years now.  But it was only in November 2010 that I started an infertility blog, and only a year ago that I came out – on my regular blog – that this one existed.  And I still don’t link my regular blog to my infertility blog.  I’m not really anonymous on my regular blog, but I am on this.  Well, sort of!

I blog on my regular blog because I love writing.  I started blogging with the x365 project, blogging every day about a person in my life, in 44 words (because I was 44) exactly, no more and no less.  It was a daily discipline, and I loved it.  I also met a small but wonderful group of bloggers doing the same.  Some of them comment here, and I love that they do.

So why, just over seven years after I learned I would never have children, did I start this blog? I felt I needed a space for thoughts on my no kidding lifestyle, the good and the bad, remembering what was lost, and celebrating what I have.  As I’ve mentioned elsewhere, in my early infertility and loss days I visited a small (at the time) message board, where I met some wonderful people.  Gradually we’ve moved on.  Some of us are in touch via FB and email, and I’ve even been lucky enough to visit them.  Some like me live a no kidding lifestyle, others have adopted, or had children of their own, or haven’t been able to add to their families.  But we remember being “in the trenches” (to use a popular recent phrase) together, and it has been important to us.  There were only a few of us who didn’t go on to have children or adopt. 

We continued to speak on the message board, but in those years it grew tremendously, and eventually separated into individual forums.  The women who went on to get pregnant, and then to parent, after their ectopics had their own forums within the overall site.  They needed to be able to voice openly their feelings about pregnancy – the good, the bad and the ugly - without being told to be grateful and shut up by those who were desperately seeking their BFPs.  The women who were parenting needed to be able to admit it was hard, or to seek advice from those who had been through ectopics too, who remembered the fear, who shared that legacy.  Or to talk about the joys, without feeling they were rubbing it in our faces.  Sound familiar? 

Then there were those of us who didn’t go on to have children.  And we became very conscious that we were a scary presence on those boards.  We weren't ostracised as such.  But we were rarely acknowledged.  Much like our presence in the IF blogging community.  Those who had had ectopics and were still petrified it might happen again, or that they might never have children, were terrified they might end up like us.  Those who were struggling to conceive after their ectopics were equally terrified they might end up in our situation, but also looked to us to see how we were coping.  And so I stayed on those boards to let them know that life can still be good.  I felt the need to be a role model.   To give them hope that life wasn't over if they couldn't have children.

They talked about success stories – meaning those who had “crossed over” to be parents.   But I resented the implication that we were failures.  And so I also talked about success stories.  Those of us who – through choice or not – were living life with no kids, and were living it well.  We were – I felt – the more courageous success stories.   It is easier to do what everyone else is doing, and do what you had planned on doing, be who you had planned to be, even if you don't always feel you fully belong amongst the fertile parents and pregnant women.  It isn't as easy to feel you're on the edges of society.   And so I felt it was important to say, “hey, even if the worst happens, it’s still okay.”  But they didn’t always want to hear that.  Acceptance can be terrifying.  And we’re their worst nightmare.  When you feel as if you’re fighting for your life, you don’t want to see your biggest fear face to face. 

And so those of us on our No Kids board felt isolated, and numbers and discussions dwindled.  Gradually my friends and I ran out of things to say in the public forums, and whinged to each other – or celebrated – in private.  We wanted to live our lives, not in regret, but looking forward.  And so these days we rarely post there anymore.

But it didn’t mean I stopped thinking about my situation daily, that I no longer had new insights, or no longer needed someone who understood to say “I get it.  You’re doing okay.”  Over the years on the message board, I had become accustomed to thinking out loud through writing.  And I missed having that outlet.  And so I started this blog, in search of a new outlet.

So why do I blog here?  As I write this, I see there are several reasons: 

1. I do it because I like writing (although I wish my discipline of brevity in my x365 project had stuck around!). Thinking out loud in the written word often helps me understand my own thoughts and opinions.  I like that.
2. I blog because I want to be part of a community who understands, and I don’t want to feel alone.  I want to be able to rant occasionally, and know I’m heard.  So comments are important to me, though I have no desire to build up to a huge readership.  A small personal readership is in many ways more important, because together we can talk through issues, and learn from each other.  I want to learn from others – I know I still have a lot to learn. 
3. I blog because I want people to know what it is like to live a life without kids, when you couldn’t have them, in a society where the majority of people have children and think having them is normal.
4. Finally, I blog because I think I’ve learned a lot.  Over years, through many tears and much laughter, through anger and shame and bitterness and joy, and through much reflection, I think I’ve learned some things about this life that might be useful to others who are just setting out on their no kidding life.  Others, very important women, helped me get here.  And I want to be able – even in a tiny way – to help others get here too.

Don't dwell

The article referred to in my previous post made a second point I want to address.  After lambasting grieving parents for sharing their grief and talking about their loss (instead of pretending that nothing ever happened and that they never lost anything), the article author went on to further accuse parents of prolonging their grief by talking about it.  

First, this comment assumes that people who don’t talk about their grief don’t in fact feel it.  That they don’t find, ten years later, something triggers their grief and they have a melt-down, or even break-down, because they were never able to grieve in the first place.  That they don't live in sadness every day because they have no-one in their lives who understands.  It assumes that a brave face means everything is okay.  And again, it blames the individual for feeling grief in the first place.

Secondly, when I was going through my grief – both for my two ectopic pregnancies, and then for the loss of my fertility/chance of becoming a parent – I found tremendous support on-line.  I was able to share my feelings, and know I was heard.  The support I received, the warmth, understanding and love was healing in itself.  Yes, we talked about our losses, but we also talked about recovery, about what we found helped us, and together we emerged out of our grief, helping each other as we inevitably slipped from time to time.  We shared our wisdoms, debunked myths, and gradually also became beacons of hope for those mired in those early dark days of their loss.  This was a good thing.  It meant I could get on with my IRL life, because I knew there were people who cared, who I could talk about things with, on-line.  It meant that when my friends or family or husband were uncomfortable with my grief, there was someone on-line who could help me.  It gave me protection in the semi-anonymous internet from feelings of shame and pity that I didn’t want following me in my real life.  It was nothing less than a life-saver.  And I think I am a lot healthier and happier today because of that. 

The other point of being able to share (not over-share) on-line is that I didn’t have to share every aspect of my grief with my husband.  He was going through his own loss.  But at the same time, he felt my grief – grief so out of character, grief that changed me and turned me into someone neither of us knew – acutely.  He took it on himself.  I could see that.  It wasn’t fair for him to have to deal with this, with me, on his own.  The fact that I could open up and off-load to others helped him to grieve himself.  I noticed that it was only when my mood lifted that he felt he could open up to me about his sadness.  He needed to be able to do that.  And he didn’t have anyone to help him.  Consequently, I think he has – in some ways – adjusted to our life without kids less easily than I have.  I grieved, and I healed.  It was harder for him.

My final comment is that I have seen people get stuck grieving, women (usually) who aren’t able to move on, to heal, to look to the future.  They fight the prospect of letting go, of living life, and their grief seems inconsolable.  Their thoughts and emotions don’t change year in year out.  Outlets like infertility blogs or internet forums perhaps help them stay this way, almost wallowing in their grief.  So I will concede that very small point to the article.  But over a period of ten years, I have seen women like this so rarely that I think they're the exception.  I think they’d find an outlet somewhere anyway, and I strongly disagree that getting stuck emotionally is one result of too much openness about loss. 

In my opinion, being able to be open normalises our grief, prevents us from feeling ashamed and isolated, and helps us get back into the wider community more quickly.  Being open about my pregnancy losses helped me heal.  It helped me deal with other grief and loss in my life, and I know it will help me deal with grief in the future.  And for that, I’m thankful.

Over-sharing about over-sharing

For the last ten years I have been visiting a pregnancy loss website.  During that time I have seen hundreds – possibly thousands but that number is just too depressing to imagine – of women who have lost their babies, primarily through ectopic pregnancy, but also through miscarriage.  And in that time, they’ve talked about their loss, their feelings, and their grief.  They’ve talked about how their partners, husbands, boyfriends have coped with their grieving partners, and their own loss.  They’ve talked about how their parents, sisters, family, friends, and work colleagues have supported them, or reacted to the news of their pregnancy loss. 

And there is one thing in common.  People – at least those in western society but I suspect it is more universal than that – are terrible at dealing with someone else’s grief.  This inability of a partner/friend/family member to cope with their grief is yet another loss, and deeply painful, to the bereaved. 

Yet on-line, these women have, almost without exception, expressed what comfort they have found in talking to others who understand.  They breathe again, they know they are not going crazy, and they know that they will be okay in the end.  This need for a sense of community, of not being alone, is common amongst women who face pregnancy loss and infertility, and as a result a blogging community has developed as well as specific forums such as that offered by the wonderful Ectopic Pregnancy Trust. 

A scathing article about “over-sharing” – brought to my attention by Loribeth at Road Less Travelled - made two points about this proliferation of online communities and open discussion of pre-natal loss.  I’m going to deal with the first here, and the second in another post.

The first point was that talking about your pregnancy or perinatal losses makes others uncomfortable, and this is not acceptable.  In fact, the article was subtitled “parents reach out in sometimes disturbingly public ways.”  (Emphasis on the word “disturbingly.”) The article talked about the almost militant openness.  I was stunned.  I have seen little or no evidence of this in ordinary, public media, society, or discourse.  Describing this as “militant” would lead me to think that such openness was both extensive, and aggressive.  Given that perhaps 25-30% of pregnancies end in miscarriage, we should therefore see this much more widely discussed than we do.  And any such openness is rarely, or never, aggressive.  Grief rarely has the confidence or energy (in my experience) to be militant. 

In my experience – and that of the hundreds of women I have observed – overwhelmingly women hold back, feel that they need to put on a brave face and only share their thoughts and emotions (and I suspect only a fraction of their thoughts and emotions) with their anonymous, on-line friends.  In the real world, we self-edit.  All.  The.  Time.  Which is why I'm so surprised at this article.  Pulling out one or two examples of women who can't cope with life afterwards is an insult to the vast majority who do.  Grieving women are constantly told to get over it – not always in so many words, but the message they receive is that their grieving is not appropriate, they shouldn’t do it, and if they do, they certainly shouldn’t talk about it but should seek medical help because there is obviously something wrong with them.  

Comments such as:

“at least you know you can get pregnant”

“you can always have another one”

“it wasn’t a baby yet”

“it’s only a bunch of cells” 

“you haven’t lost anything because you never had anything” and

“at least you only knew you were pregnant for a few days”

are very hurtful to the grieving woman.  Whether true or not (the truth is, with ectopic pregnancy, often there is no foetus, in that ectopic pregnancies develop differently), from the moment the woman knew she was pregnant, there was a baby.  And she lost that baby's future, the real life baby, child and adult that her pregnancy promised.  That's what she grieves.  To be told that her loss is not important is immensely painful.

Yet these comments are meant to help.  The people making the comments often care deeply for the women involved, and hate seeing them in pain.  Likewise they hate feeling uncomfortable and awkward, and I think these feelings all merge into one.  So they try to make things better, but when nothing can make things better (other than time), they seem to think that by dismissing your grief, banishing your grief, pretending your grief isn't real, it will actually go away.  They do this without thinking through what the grieving person actually needs.   I like to think that they would be appalled if they knew how dreadful it makes the grieving person feel.

The author, on the other hand, articulates this discomfort with others’ grief very clearly.  She knows what she is saying.  In fact, her comment that there is a “cultural acceptance that grief trumps others’ discomfort ...” clearly says her discomfort is more important than my grief.  This is an unbelievably selfish attitude, and shows a person who seems utterly incapable of empathy.  Like a spoiled child, she is effectively saying:

“I don't like hearing about your grief, or even your reason for grief.  I don’t know how to respond, and so I feel awkward.  I want it to stop.  I don’t want to deal with your grief.  It’s your fault you’re feeling bad and making me feel bad.  Stop it!”  

Or in other words:

"Stop screaming in pain.  You're hurting my ears." 

If only we were all open to grief, to loss, and knew how to comfort each other, or were prepared to learn.  Wouldn’t the world be nicer?  Healthier?  And ironically, wouldn’t it be easier to grieve, and to recover?  And then, wouldn’t everyone feel better, less disturbed, more quickly?