This morning I am FURIOUS!! Absolutely disgusted with Dr Michael Gannon – President of the AMA – for his callous, disgraceful disregard for women who suspect their unborn baby is in trouble.
Perpetuating the dangerous myth, unsupported by science,that having a cold drink will “wake the baby up” is like saying “getting pregnant will cure endometriosis” and all of us should take a stand and call him out. You can email him with your thoughts: firstname.lastname@example.org.
Yesterday my absolute hero, Lena Dunham, did something incredible for Endometriosis. She got the world talking about it. Dunham announced that she’s been forced to pull out of the promo tour for her hit TV series GIRLS due to an Endo flare-up. I was heartbroken for Lena. But, as the Co-founder of EndoActive – an Endometriosis Activism Group – I was grateful and proud that she had shared this information on social media and thrilled that the media had picked up on it. Any publicity for Endo is good publicity, right? Wrong.
I am absolutely horrified by what you, CNN, have published. You had not only an opportunity to report on an under-publicised, insidious disease that is destroying lives and desperately needs to be taken seriously, needs attention and needs funding but you had a responsibility to report factual, evidence-based research supported by compassion, care and a positive message. To my horror and the horror of the thousands of women I represent, you have grossly missed the mark and published instead an unsavoury, chauvinistic, factually incorrect, medically and morally irresponsible piece of writing that helps no one and in fact undoes so much of the hard work that EndoActive and so many others are doing daily.
FYI not the boys from the pub in this story but they still get to hear me bang on about Endo
It was just your average Friday night. I ventured out to a pub in Chippendale to have a coupla with me mates after a mental week at EndoActive HQ. It was there that I wound up talking to a bunch of dudes about periods. Oh yes.
The days surrounding the official launch of Visanne were frantic with media and publicity stuff going on while Mum and I tried to juggle conference organising with writing articles and prepping ourselves to talk to camera. Funnily enough, we were not prepared in slightest for the public reaction to the release of Visanne. For us, the news that Bayer had said yes came months ago and we didn’t wake up to the fact that March 3rd would be so significant. Being the total rookies that we are, we didn’t prepare anything and it wasn’t until the day before that we realised what a big deal it would be.
We spent all day Tuesday co-writing an article for the Guardian. Then, they told us they wanted to film us reading our article to camera instead. We stayed up till midnight re-working our article into a script and sticky-taping our lines onto cue cards for the morning. It was such a mad rush but 2 days later, this video was released online.
(I can’t help cringing the whole way through that thing. I look like a baby boy deer caught in a headlight. But vanity and hypercriticism aside, I’m proud of the overall message.) So as I was walking through the pub courtyard, this guy stopped me and said, “Hey aren’t you the girl from that video on the net? It was about En…..do….metriosis?” I was excruciatingly embarrassed.
Today I had my first grown-up job interview. (Years of cruising into bar jobs aren’t quite the same). But just six months ago I was miserably contemplating a life of unemployment. I had started to listen to the shitty little voices in my head, needling away, telling me that nobody would want me because I had Endo. I couldn’t see past my next doctor appointment. I knew that I had a strong work ethic, a mind that craved stimulation and good values to offer, but I was losing confidence.
Going public about having Endo was a big decision and one which I knew could have ramifications for me in the future. I wasn’t sure if ‘outing myself’ was the smartest move if I wanted a career. Would anyone hire me if they knew I had a chronic illness? I had the opportunity to remain anonymous. Instead, I chose to put myself out there – full name, full disclosure, total transparency. Despite the perceived risks, to me it was a no-brainer. How could I express the importance of public awareness about endo and encourage others to do the same while hiding my identity? It would be a total contradiction.
I am comin’ at you live from beneath the Pandanus. Although I’m currently in Noosa on holidays with my family, EndoActive HQ has traveled with us and is fully functioning in the tropics. We’ve literally gone troppo. So much exciting news to tell you so be sure to read to the bottom ok! First things first. Happy new year err’body. I hope this finds you well. It’s been so hectic up here organising the inaugural EndoActive consumer conference (eeee!!!) and getting in touch with lots of brave, enthusiastic EndoActive supporters from Brisbane & the Sunshine Coast who we’re going to interview and film while we’re up here. On top of that, A Current Affair popped in to see us. They were lovely. We ate Tim Tams together! I’ll tell you about that further down.
For those of you who aren’t aware, my Mum and I started EndoActive Australia & NZ a few months ago as a result of the publicity we were receiving after our petition on change.org went viral and received a whopping 74,500 signatures. You can check it out here. Now we are a non-profit, legally incorporated association which feels FANTASTIC and sounds very grown up and legit. We are so proud to have started this little thing from our living room and watched it grow and grow. Our mission is to promote education, awareness and activism about Endo as much as we can. We’ve already achieved a lot with the help of our fantastic supporters and have lots of exciting things in the pipeline. Mum has ideas coming out of her eyeballs, even while she’s asleep! She is an absolute powerhouse and I’m learning a lot. Together, we make a great team. We are currently planning the first ever consumer conference on Endo to be held in Sydney in the first half of 2015.
I took this photo while I was perving on all the sparkly spangly things at my photo shoot for Cosmo on October 14. Sadly none of them were meant for me so I just drooled and fantasised about being a modern bridal-wear model dripping in sequins and fluffed with fur coats while I sat on the couch waiting until it was my go. (There was a real model before me which pissed me off royally because I knew I’d look like even more of a dick trying incredibly hard to look totally natural. Bitch.)
Time for makeup. I was very excited to see what I’d be styled in and how many different outfits I’d get to try which is hilarious in hindsight because I was given a plain white singlet to throw on for a single head-shot. What a dick. Thinking I was gonna get some sort of fashion spread like I was Kate bloody Moss or something HA! I’m still baffled by my unbridled self-indulgence in that moment – what on earth was I thinking? As I had one squinty eye on the model pose pose posing while my hot pink lippy was applied and my eyebrows were coloured in, I watched my glossy 6-page-spread vision droop and deflate like a sad penis on a cold day.
Today, Mum and I attended a special event at the Mamamia office. (Doing our best to rep EndoActive and our cause wherever we can) The Hon. Julia Gillard came in for a Q and A session about her recently released autobiography, ‘My Story’ and to answer questions from Mamamia readers. She was interviewed by Mamamia’s Editor in Chief – Jamila Rizvi, while a select few (about 40 staff and us) got to sit very close and watch. What a privilege. She spoke so candidly and honestly about a whole range of topics; her life before, during and after being Prime Minister, gender issues, education, policies & politics, that WONDERFUL misogyny speech (which I remember watching live during Question Time while I was interning at Mamamia, on the telly with a room full of women standing, cheering and applauding – it was beyond amazing) and a whole bunch of other stuff.
HOLLER!! Today is a new day and it’s hard to believe I was a depressed cave woman unable to pry my white-knuckled fists from the corners of my doona for the past 2 days because today I feel fantastic! I was up bright and early, back on track with Kayla Itsine’s workout plan, hit the gym, read over my Endo fact notes, dressed up like I was Hittin’ da cleerb and at my meeting with the gorgeous Lauren from Cosmo by 11am.
Here we are at a family wedding just a few months ago. I love this photo. My daughter looks happy and healthy. I don’t look too wrinkly.
But halfway through the reception someone tapped me on the shoulder: “Your daughter’s lying on the floor in the bathroom. I think she has to go home.”
She was diagnosed with Endometriosis a couple of years ago, but that was my first experience of how suddenly and brutally Endo can take her from the party to the pits. A few weeks later she was in hospital for her second surgery in less than two years. She’s unlucky to be at stage 4 – the most severe – and she’s only 23.