Tuesday, March 8, 2016

International Women's Day

Wearing my favourite phenomenal women Tshirt in honour of IWD
I've been struggling a bit around here lately. I've been involved in the endometriosis awareness/support scene pretty much since I was diagnosed in March 2012. I appeared in my newspaper article about endo in May 2012. I met the other Canberra Endometriosis Network co-founders around the same time and we tried to start to get things rolling in the ACT. In 2013 I managed to get endo into Cleo and Cosmo, if only small articles. (Syl Freedman kicked things up a notch a year later.) Later on that year we had our first yoga classes that got things rolling a bit faster for the network, and in 2014 the facebook group started going nuts and we had our first proper meet ups, with more than just a handful of people, at the Women's Centre for Health Matters. At last count the network has 250+ members.

But dealing with other life stuff has just gotten too much recently, and I haven't been able to handle my commitment to the network. Even seeing endometriosis awareness posts everywhere is overwhelming to me at the moment, even though I am so glad that they are out there and I am so thankful for the honesty and bravery shown in the women that choose to share their experience. So last week I resigned from the board of the network. It was a really hard decision but it's what I need to do right now to give myself some space to deal. Resigning inspired me to say yes to another commitment, a panel that I had been asked to participate in at work on International Women's Day.

So when today came around, I did one of these things that I do where I speak first and then overthink later. I shared my experience of being dealing with my symptoms with an unsupportive manager, in front of a crowd of at least 50 people (the details of which I'll leave in that room lest I end up on the receiving end of a defamation lawsuit). I cried in the process, remembering how hard my life was at the time, how confused I was by the pain I was in and the fatigue I was experiencing, how I struggled to come to work every day, how I cried in the car park for two hours one day because I just couldn't cope, how I felt utterly defeated by how HR treated me when I escalated the issue and took it to them. It is far and beyond the hardest, most isolating, period of my life so far. I just wanted to cease to exist.

Sharing this experience made me cry. I've tried almost to forget that period existed, particularly as none of the issues were really resolved. At the time I was frustrated in myself for letting emotion get in the way of me expressing how I felt about some weakness in how my workplace is run. I felt like I lost my train of thought a bit, and just felt like a bit of an idiot. However, some amazing colleagues of mine in the audience spoke up and shared their own experiences, and I felt like I'd hit a nerve. I thought it would be a prime time to ask the CEO to support people with chronic illness in the agency by arranging training for managers in dealing with employees with chronic illnesses, so I did. We can't expect managers to know how to deal with people living with chronic illnesses without training, when those people themselves spend their lives learning how to best deal with their illness.

Afterwards I received overwhelming support and I'm thankful to everyone who reached out to me. A lot of people called me brave, which I thought was odd since I didn't really think much of what I'd said at the time. Later in the day I started spiralling in anxiety a bit, worrying about the fact that I had cried in front of everyone, and that I had addressed the CEO so directly, and been so open about an experience that could reflect so poorly on my employers. I started to think that maybe it had been a really stupid career move. (Particularly as I had made some rather black and white comments on feminism as I tend to do when I'm hyped up about these issues. I realise that the day to day reality is a lot more grey.) That all changed when I read a post made by a colleague and fellow member of the network calling me courageous and a superstar. I burst into tears. I knew that I was being silly for beating myself up, but I couldn't stop it. It took her posting to snap me out of it.

I am proud of the person I have become over the past four years since being diagnosed, and I am proud of how open I am about my experiences. Sometimes I feel a bit dumb for making myself so vulnerable, but I have seen such great things happen out of that vulnerability.
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