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Hey EndoActivists,
Here I am talking about Endometriosis to a packed auditorium of hundreds of people 2 weeks ago. I was in Melbourne speaking at HISA’s Health Informatics Conference as a patient advocate who has used social media to create an online community of wonderful women and raise awareness of Endometriosis.

I brought my Mum and Dad with me to the conference because to all of us, it was a big deal. It was the first time I’d ever been invited to speak at an event (with the exception of EndoActive’s conference which we held last year… bit different when you invite yourself to speak at your own conference though!) It felt like a huge milestone for EndoActive, for me personally, for us as a family and for our cause – Endo!!!

It wasn’t long ago that I was slumped on the couch day after day in chronic pain, miserable as hell, consumed by sadness and anxiety, with no hope for the future. Becoming an activist and a patient advocate has completely turned my life around. I never ever ever would’ve imagined that the disease that was once destroying my life would now be my Ikigai – a Japanese word meaning¬† ‘reason for being’ or reason to get up in the morning.

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Raising awareness of Endo has become my passion, as you know. I love learning as much as I possibly can about it and sharing that knowledge with other people – many of whom are just like me and Mum – patients and carers desperate for evidence-based information and a morale boost. I try my hardest to boost morale among our Endo community through my facebook and blog posts by reminding our girls (YOU GUYS!) that you’re tough, that things will get better, that you are not alone and that you have power as a patient – not to underestimate yourself.

I think it’s really important to remember that EndoActive was started by ordinary people – me and Mum – a patient and a carer. We don’t have medical backgrounds but we have a strong determination to change things that are unjust and to speak up (LOUDLY) when something isn’t right.

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Anyways, I was so nervous before my presentation that I had to run back to my hotel room and sit in front of the below freezing air con in my bra to cool off my profusely sweating armpits while frantically checking the order of my palm cards. (I may or may not have had a quick margarita as well.) As a person who does not typically sweat much from the armpits or in general, this was quite an intense experience.

I couldn’t understand why I was so nervous because I’ve always felt confident with public speaking. I was a debater! But in hindsight I think it’s because I feel a certain level of pressure to represent you guys – our EndoActive community – the best way that I can. I feel so strongly about supporting you all and sticking up for you and telling the world about the terrible injustices that women with Endo face on a daily basis – that I want to do it perfectly. It’s empowering but nerve-wracking.

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The opportunity to raise awareness of Endo in front of 1100 delegates made me feel so proud.

To my surprise, Hon. Sussan Ley – Federal Minister for Health was announced as a last minute guest speaker. She was spruiking the Government’s online health platform – MyHealth. I had decided that it was the perfect opportunity approach her and tell her about about the issue of 1 in 10 women having Endo and that we’re SICK AND TIRED OF OUR PAIN BEING IGNORED BY SOCIETY AND MISTREATED BY DOCTORS WHO TELL US TO HAVE A BABY OR HAVE A HYSTERECTOMY TO CURE OUR DISEASE! Sorry – outburst.

All of a sudden she was up on the stage giving her talk and I was due to go on next. My sweating and heart rate increased even more and the margarita now had little to no effect as my mind raced thinking about what the hell I would say to the Minister on stage in front of hundreds of people.

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Hon. Sussan Ley at HIC 2016

I had been advised that the Minister would be in a hurry and probably wouldn’t be sticking around for my presentation but that didn’t stop me from trying. I got behind the podium as quickly as I could after Sussan and asked her to stay and listen to what I had to say.
“I know you have a plane to catch Minister Ley but I’m here to talk about a chronic disease called Endometriosis that affects 1 in 10 women.. including many of the women in your life.”

She didn’t stay, but it was a long walk up the stairs to the exit so I know she heard me. I then played a video of 11 women and girls with Endo who we interviewed last year – describing what Endo pain feels like. I’m certain the Minister heard some of that too.

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My presentation went really well and once it was over I had a number of people coming to chat with me about how moved they were and how many women they knew who were affected by Endo – wives, ex-girlfriends, sisters, friends, colleagues. This always happens but honestly still takes me by surprise. I love when people do open up to me about the women they know who have Endo because it makes everything we do worthwhile and reminds me why it’s so important for EndoActive to exist.

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Hopefully I did you all proud. I love being your ambassador and doing everything I can to make people sit up and listen to what we have to say. LET’S GET ENDO OUT THERE !
Syl x x

PS
Wondering what Health Informatics is? Not a term most of us are familiar with!  Even at the time of the conference I was still pretty much clueless as to what Health Informatics actually is. But I now understand it to basically be all things related to online or electronic healthcare and health information.

Health Informatics (also called “eHealth”) covers the use of Information and Communications Technologies in supporting healthcare processes and services in many diverse situations. Some well known components of Health Informatics are:

  • clinical decision support
  • electronic health records
  • health communications / messaging
  • health information management
  • health systems design and workflow modeling
  • telehealth / telemedicine / telecare
  • web services health applications