Tuesday, 28 March 2017

Belly Burdens at the 2017 Health e Voices Australia Conference

A few weeks ago, I had the privilege of attending the 2017 Health e Voices Australia Conference in Sydney. It was a fantastic experience – the speakers and panellists were amazing, I met some fun and inspiring people, and the conference in general had a very positive energy!

I would like to share with you my top takeaways from the conference:

Sometimes it helps to have a bit of a sense of humour about what you are going through.

This was something that came through from quite a few of the speakers, and made me remember the saying that “laughter is the best medicine” – it really is true! Sometimes a smile or a laugh can ease the awkwardness, and make you feel a little better too.

For so many of us, it can be very awkward to talk about our experiences (particularly with a bowel condition like mine!), and sometimes the easiest way is to make a joke out of it. For example, our conference MC Shelly Horton told a very funny story at the about a mishap that led to an oddly shaped scar on her abdomen. Speaker Turia Pitt also had a funny and sarcastic way of talking about her newfound “fame” since her ordeal – she doesn’t like it, but she’s never had stage fright!

Q&A with Turia Pitt

Regardless of the condition or disease, we all have similar challenges.

After talking with people advocating for a whole range of conditions, including diabetes, mental illness, cancer and psoriasis, I realised that even though we have different symptoms, we still have the same sorts of challenges. This was particularly humbling, but also quite comforting.

I realised in these discussions that we all have to manage horrible symptoms and treatments, often with multiple medications. We all have to deal with awkwardness and cynicism. We all think about our identity following diagnosis, and what labels we want to use (or not). As panellists Brittani Nicholl and Luke Escombe discussed, we all have to juggle the different “compartments” of our lives. We all deal with varied levels of anxiety. We all have to deal with people not fully understanding the sometimes “invisible” nature of our symptoms. We have all been told in one way or another that we “don’t look sick.” And for those with chronic illnesses, we all want to find a cure.

Panel with Brittani Nicholl and Luke Escombe

It is incredibly important to always use positive and supportive language.

When you are feeling fatigued or in pain, it can be very easy to let yourself be negative or even depressed. To think that you deserve this, or that you have somehow done it to yourself. Or to want to give up fighting. It can also be tempting to compare yourself to others in a similar situation, either to make yourself feel better or to justify how crappy you feel. I’ve been in that kind of head space many times too.

However, this doesn’t help you, or others in your community. So as hard as it is some days, we have to stay positive and support each other. As many of the speakers and panellists at the conference said, we need to think of ourselves as “surviving,” not “suffering.” Speaker Nick Bowditch suggested that we think of our “flaws” or “defects” as our “gifts” or “superpowers” instead, because they make us stronger and better in the long run. We also need to use more positive words like “living with” rather than “battling.” And we need to push ourselves and others upwards, not pull them down further into those dark places.

A little "10 second dance party" every now and then also helps!

We need to do more to recognise the mental health components of our conditions.

Sometimes positive language and supporting each other isn’t always enough however, which is where this point comes in. We often forget that these conditions have mental or psychological components as well. Or we either hide or brush it off, because is seen as a weakness.

In the larger health advocate and patient support community, we need to work to change that perception. We all need to be able to acknowledge that it is okay to feel anxious, depressed, stressed, or just generally miserable – because having a chronic illness in particular just plain sucks! We need to be able to take care of ourselves both physically and mentally. We need doctors and other medical professionals to understand this side of it, and direct us to others that can help. And we need to remember that just like everything else, we are strong enough to handle it and work through it.

It is important to be authentic when sharing our experiences.

As several of the speakers and panelists pointed out at the conference, people will see through any fake information or lies, and it won’t give them a good impression of you. So, in order to reach and help more people, we as bloggers and advocates must be completely authentic. As part of this, we also need to share our real experiences, even if it is messy (without going too overboard of course). I would therefore like to use this as an opportunity to pledge to always be authentic with my writing and posts, and will try to share more and more of my experiences with all of you.

Photo credit: Janssen ANZ

On that note, please also refer to the below disclaimer from Janssen ANZ for the 2017 Health e Voices Conference Australia.

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