We're not so different

In recent years, I’ve been part of an online support group for a chronic pain condition. I’ve been struck with the similarities between that group and those of us who have either been through infertility, or are childless (for whatever reason). It has made me think about the many other communities dealing with similar issues. Issues such as:

• Incompetent doctors who dismiss the pain of their patients because there is no evident cause, which reminded me of doctors dismissing endometriosis, or sending away ectopic pregnancy patients in pain, or doctors who don’t consider that childless people have lost anything.
• Doctors who are just uninformed, but who do little to investigate the causes and treatments of pain, or who rely on old information, or who refuse to refer patients to specialists.
• Employers who don't understand or who are not able to be flexible to meet someone's specific needs 
• The outside perception that if you appear to be okay, that you are in fact okay.
• Invisible pain, whether it is physical or emotional, leads to that pain being ignored. That leads to anger of others who don't understand why you might not be able to do X or Y, and judgement that you might be shirking responsibilities.
  
• People who can’t deal with the pain of the family members or friends, who have no idea of the severity, who dismiss their pain, or just plain forget that you might be in pain.
• The guilt of the patient for putting their family members through a difficult time – whether that is because they can’t help around home or with children or elderly relatives because they’re in pain, because of the increased burden on their family members as a result, which compares with the guilt of depriving a partner of children, or depriving parents of possible grandchildren.
• How easy it is, when we are in pain, to take on more pain and blame ourselves, tell ourselves we are worthless, that our family and friends might be better off without us.

Does any of that sound familiar? 

But the positives are the same too:

• Even while it might feel like we are alone, we really aren’t. There are communities everywhere who are supporting each other, making their members feel less alone, telling them and showing them that there are others who understand. 
• Discussion and advice about how to deal with pain, and certain situations, about treatments, about doctors, providing new sources of information.
• Laughing about things that others might not understand, or just finding a moment of levity to take their attention away from their pain or grief. 
• Knowing there is somewhere we can be heard without judgement or have-you-thought-about-isms or "here they go again" looks.
• Virtual hugs to others in pain, just wrapping them up in empathy. 
• Role models that it will be okay, that we can survive this.
  

How wonderful it is that technology today allows us to reach out and find comfort across the ether. How wonderful it is that anonymous people can often give more support than people who have known us all our lives. How wonderful it is that there are people who care, and spend their time and energy in helping others, who want to make sense of their pain by helping others. There is so much love in these communities, it gives me hope for the world when we normally see so much division.

It is wider than just these specific communities too. What it shows me is that there are so many people out there who, although they might not have the same exact diagnoses or issues that we have, can still relate to how isolating and difficult our lives can be at times. It reminds me to keep myself open and see the difficulties in the lives of others. It reminds me to stay well away from playing the Pain Olympics, because we never know what someone else is dealing with behind their smiles. It reminds me to exercise compassion. It reminds me that we are not alone. As usual, there is so much more that unites us rather than divides us.

 

 

 

No Kidding 2020 Project: Day 10 - Balance

One thing that I think we often lose when going through infertility is balance. It is easy to become obsessed – with our cycles, our daily temperatures, our medication and what we need to take next, and the will-it-won’t-it constant question. We’ve seen it a lot – people thinking that ending up like us – without children – is their “biggest nightmare.” We may well have thought that way ourselves. “What is the point of life” some/many of us ask, “without children?”

The lack of perspective, the lack of understanding that life goes on and can and will be good, can be overwhelming to many of us when cycle after cycle fails, or after loss, or loss after loss, or that phone just doesn’t ring. So many people who arrive at my blog, or yours, or on Instagram or elsewhere, are in that phase. Their life is over. No-one can tell them that it isn’t. We know that this sadness and despair doesn’t last. We do recover, at different speeds, and perhaps even to different extents. We know that joy in life returns.

At the beginning, when we might be feeling despair and utter loss, no-one can give us perspective. After loss, even if we might think “at least we can get pregnant,” but we don’t want anyone to say that to us! (I know I felt that intensely.) Platitudes from friends and family – all the other “at least” statements (at least the pregnancy wasn’t far along, at least you didn’t get to know the child, at least you haven’t faced loss, at least you can sleep in, etc etc) are unwelcome and insensitive. We are out of kilter, our lives are completely off-balance, and we are teetering in the middle of a plank over a stream, not sure what lies on the other side, reluctant to move forward, unable to move back, our arms flailing wildly. We can't find balance. But no-one else can give us balance either, even though they can help calm us, or let us know we can do it, and it will be okay. But no-one else can impose perspective on us. Even those of us who have been through it struggle to be heard. The newly bereaved might hear it, but say “not in my case, I’m different.” That’s okay. We’re giving them a message they might hear when they’re ready.

Gradually, perspective and balance does come to us. We start to see and feel the world around us. We understand that others react differently. We figure out that maybe those insensitive family and friends were trying to help, even though they only succeeded in hurting us. We compare our situations, and become sensitive to the pain of others. We stop playing the Pain Olympics in the negative, and start seeing comparison in a positive way. We understand things could be worse. We find gratitude. We begin to apply perspective. Because having been through tough times, and knowing now that the universe doesn’t give us everything we want, we know it could be worse.

And I think that is what is helping me through the current times. Balance, and perspective. It could be so much worse (in NZ at least). I’m healthy (so far), warm and dry in a house with plenty to keep my amused and active. Perspective and balance reduce anxiety, and make me feel calm (or calmer). I hope they work for you too.

Kia kaha. Stay strong.

2019: Looking Back on the Blog

Another year and I'm still here, even though 2019 wasn't my best blogging year. It's worth looking back though, as survival is a feat in itself! And worth celebrating. Remember that!

Over 2019, I wrote sixty posts, which I'm quite pleased about, as it averages one a week, with a few more thrown in. Sixty times last year, I thought about writing about not having children, I thought about the positives and negatives of my situation, and I thought about what you might want or need to hear about. Sixty times I reminded myself to be honest. I might not have always had words of wisdom (I hope I had some), and sometimes (like yesterday), I might skim past the topics, but even in that fact, I hope I'm showing that I am not defined by my No Kidding status. Instead, I'm just living my No Kidding life.

I kicked off the year with good intentions for blogging in 2019. I'm not sure I met many (any?) of these "blogging resolutions", but that's okay. There's always this year!

January and February saw me write my five-post menopause series, which you can find here.  It's funny, because just a year later, it feels like something I wrote a long time ago, and something I went through in the dim and distant past. I'm still on HRT, and I still overheat, but the horror memories are fading, thank goodness.

A lot of my writings have been focused on my efforts to see things from both sides. Two in particular are:

Issues from all sides
How infertility affects our world views
Stories we tell ourselves

I've written more about ageing when you don't have children, sometimes specifically, sometimes in thinking about the need to build a community, and quite often about what legacy we leave when we don't leave children. Perhaps that's natural when for the last years I've been surrounded by elderly parents and in-laws, with only one left still hanging in there. Ironically, having written about Recipes as Legacy, I was hunting for my mother-in-law's zucchini chutney recipe recently, and can't find it in her recipe books, despite finding at least one carefully copied recipe I gave her which I know she never made. It is very frustrating, as it is one of only a few recipes of hers I actually wanted, and I can't find it!

I started last year with some optimism because of a potentially changed situation, but due to someone else's misfortune, that didn't continue. It's a situation I'm not happy about, but have to remind myself - Pain Olympics style - that perspective is everything. Perhaps because of this though, and perhaps unconsciously, I wrote a couple of posts about suppressing ourselves, our wishes, our realities.

Suppressing our personalities
Celebrations vs Grief

But on the other hand, I did talk about occasions when I spoke out. These small instances, when I (figuratively) stamp my foot and refuse to let my situation be ignored, help me to remind myself, and the world, that I'm here, and that I (and all of us who are Not Kidding) count.

Speaking out revisited
Don't render me invisible

As usual, I got a lot of inspiration from other readers and writers on this topic, both from their posts, and comments. My posts are often sparked by ideas when I read a post, whether I agree with it, want to take it a bit further, or on a different tangent, or when I vehemently disagree. I think it helps me a lot when I try to figure out why those I disagree with take that attitude. Understanding, even if I still disagree, helps. So I thank you all for thinking and writing and discussing and inspiring me. Please continue to do it!

Finally, I conducted a To Instagram or Not survey. I'm monitoring the results, but will close it in the next week, so if you haven't commented, or filled it in, please do so here. It'll only take you about one minute! It's a question of whether to add Instagram to the No Kidding online presence, not to replace this space here, which was a concern of many.

Here's to another year of blogging, of thinking, of growing, and of trying to continue to be able to say, I'm Not Kidding.

This is an annual nod to Mel, who used to run the Crème de la Crème, where we would list our favourite post of the year. It always provided inspiring reading. So even though it doesn’t happen officially now, I hope that you too will list your favourite posts from your own blogs, on your blogs, for us to enjoy again (or for the first time). 


PS: And Mel has reminded me that this week is blog delurking week. So do leave a quick hello in the comments (I'm okay with anonymous comments if you're really shy) or send a quick email. I'd love to start the year knowing who is here reading.

Putting Pain in Perspective: Pain Olympics Revisited

I’ve been thinking about writing about the Pain Olympics again for a couple of years, after a particular encounter. In the meanwhile though, I thought I might copy the majority of a post I wrote back in 2012. I’ve made a few edits to update it, as it was written at a very particular time in my life. (If you’re interested, you can read it in full, and the comments, here).

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 (edit: by now, it has been 17 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 – most of the time – scarier now than my childlessness.

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. Acknowledging someone else’s pain does not diminish our own.

I am going to speak personally here though. Playing Pain Olympics 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.

So as our pain fades, I think it is only appropriate 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. Someone else can’t put your pain in perspective for you! It implies they are not sympathetic, that our pain doesn’t matter to them, that it is trivial, and that we don’t deserve to grieve.

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. (The scale? My scale, perhaps?) And I will. This doesn't mean I don't let myself grieve. I have, and I do. When it is necessary. But crucially, 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. It is what helps me survive.

When I wrote the original post, I’d been through three of the worst weeks of my life, suffering intense physical pain and real fear. But it didn’t last, and I knew I was lucky. The –physical pain receded, and although it has returned, I know too that I am lucky that medication keeps it under control. This isn’t the case for others who suffer, and I feel for them. Then, as I do writing this today, I look out the window, at a beautiful autumn day, at the blue sky, at the setting sun on the trees, and listen to the birds serenading me from the trees above me. I can breathe in, and feel good. Because I know, that right this moment, I don’t have it so bad.

Pain Olympics. They put it all in perspective, and make everything easier to accept. In my view, they are a most important part of healing.