This is the second installment of Chattin’ to Blokes about shit you never thought you’d be chattin’ about in just a couple of weeks. It was once again an unexpected but uplifting experience. It reminded me of the night I wound up talking to a group of boys about period pain at the pub not long ago. You can read about that here.
On Tuesday my Mum / Co-founder of EndoActive and I flew to Melbourne for the launch of the Pelvic Pain Foundation of Australia. Before we arrived at the launch we were feeling quite out of place and a little nervous that we wouldn’t know anyone. Cocktail parties are for mingling and there’s only so many wines you can quietly inhale and only so many paintings you can point and nod at before someone notices that you’re the Nigel hogging all the canapés.
Funnily enough it didn’t matter that we hadn’t met anyone at the launch party because many of them knew us (in the way that you know somebody through social media and through the telly). That is something I will never get used to – walking into a room full of strangers who recognise you and know you by name. I guess we’re famous in the pelvic pain world? It’s not exactly the type of fame I would’ve dreamed about when I was a teenager and perhaps it isn’t as sexy but it certainly is meaningful.
The launch was phenomenal. Everyone who was there had a specific interest in pelvic pain – a very localized area of interest. In that way, everyone had something to offer one another whether it was a shared experience, a piece of advice or a useful contact. Everyone was encouraging of one another’s work and excited rather than disheartened about the amount of work there is to be done in this field. Professor Lorimer Moseley talked about the embarrassment he felt after having an injury to his coccyx and the importance he now sees in having the confidence to talk about your health openly. He’s come a long way from hiding his pain in an awkward area to announcing it to large groups of people over a microphone in a hilariously self-deprecating way. I have a feeling he’s still not as comfortable with that as his performance would have you think (which is the same for me) but he’s found a way to talk about it which gives other people the confidence to do the same and that is a fantastic thing.
The most interesting thing to me was learning that pelvic pain does not discriminate against men or women and discovering that there are such similarities in the effects of Endo pain for women and pelvic pain for men. That meant that I could talk openly about Endo to the men in the room and in fact, we had a lot in common.
Prof. Lorimer Moseley spoke about the fact that generally, men hate talking about their health. They don’t like discussing it due to a perceived loss of masculinity and potential embarrassment. As a lovely man named Carl Giardinazzo (Director of the PPFA) bravely admitted, men will often go to great lengths to hide their pain and health issues even from those who are closest to them. In his case, he hid his pain from his wife for 4 years. This re-iterated what I already knew about women’s health (that we’re encouraged to keep our issues hush hush or risk sounding unsavoury or sounding like a hypochondriac) but alerted me to something new: that there are stigmas surrounding both women’s and men’s health that need to be broken as they are perpetuating stereotypes and exacerbating our health problems.
I know that at least 1 in 10 women have Endo. Several more in that group will have pelvic pain. To learn that 1 in 12 men suffer chronic pelvic pain, which as Endo girls know leads to a whole lot of other problems, took me completely by surprise. They too are suffering in silence. But in the safety of the environment we were in that night, men all over the room found the courage to share their stories and admit things they would ordinarily not have the confidence to share.
I found myself in conversation with two men at the end of the night – Carl Giardinazzo & Graham Smorgon (Board members of the PPFA). In any other setting, we’d likely not have anything in common. They were 2 or 3 times my age wearing expensive suits with a whole lot more life experience, knowledge, power and wealth than me. Why would they be interested in anything I had to say? Surely there was nothing I could offer them that they didn’t already have.
But what brought us together in that moment was our shared passion for opening up a dialogue about the things we never seem to talk about, the things society discourages us from talking about based on what is expected of our gender. We had all developed an urge to normalise normal shit and get people talking about their problems, as unsexy as they may be. Using Foundation or Not For Profit terminology that’s what they call ‘raising awareness’.
Where had that shared passion come from? It came from our common experience of living with chronic pain – an invisible disability. It came from realising how many of us are in the same position and feeling determined to change the outcome for others. It came from a sense of moral obligation to change a flawed system so that things could be different for younger generations. It came from wanting to turn a negative into a positive and to somehow make the shit we’d been through worthwhile.
It turned out I could offer them something. I’m not exactly sure what that was but the more we talked, the more we all looked visibly taller, happier and like we’d all let out a big breath we’d been keeping stuffed in our shoulders. Opening up about those things we tend stifle away and keep hidden from others for fear of judgment – you just never know what it might lead to. And in this case, it just. felt. amazing.
Dr Susan Evans is a wonderful gynaecologist from Adelaide who will be the keynote speaker at our EndoActive National Conference on Endometriosis (or EndoActive Talkfest as we now call it) in Sydney on May 16. This will be a special, empowering event and I’d so love you to come so I can meet you. Please Buy your ticket here!