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Championing Peer Support at #ADSADEA2017

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One of my favourite sessions at this year’s ADS-ADEA conference was the peer support symposium. Not only did it cover one of my favourite topics, but it also provided me with valuable insights into the work carried out by the Australian Centre for Behavioural Research in Diabetes (ACBRD) and Diabetes Victoria.

Renza took to the stage with her personal story, which I’m sure many consumers in the room could identify with. People with diabetes only receive a few hours of clinical support each year. They turn to peer support because it’s easily accessible, and in the case of the Diabetes Online Community, it’s available 24 hours a day.

The point that most resonated for me was the importance of timing. I know that I wouldn’t have been ready or willing to meet other people with diabetes at the age of 17, nor would I have seen any value in doing so. But today, having connection to people who simply ‘get’ it is so very valuable.

It brought me to this idea of the strong bond that diabetes creates among peers. As Renza touched on peers helping peers with diabetes, it really reminded me of how much more trusting we are of each other because of our condition. I’ve certainly gone out of my way to help other people with diabetes, some of whom I barely know. If only more of our healthcare professionals could foster this much trust, imagine how much better they would be able to support their patients?

Later in the session, Dr Jessica Browne of the ACBRD took to the stage to highlight some recommendations for peer support in Australia. Only 11% of survey respondents were taking part in peer support, suggesting that many programs did not have enough reach.

When I look at some of the communications from diabetes organisations, I would have to agree. I don’t often see weekly OzDOC chats promoted. People’s insightful blogs aren’t often shared. I don’t see cross promotion of events here in Perth from some of the leading diabetes centres. Technology companies are too focussed on marketing their products, and could definitely employ a bit more of a community focus. We are not enemies, nor should we be viewing each other as competition. We really should be supporting each other in order to better serve our communities and promote choice.

Unsurprisingly, 1 in 3 survey participants had not discussed their involvement in peer support with their healthcare professional, and 1 in 10 believed that it would not be endorsed. Dr Browne touched on the need for more heathcare professionals to link their patients up to peer support, which I wholeheartedly agreed with. It took me five years before I began to uncover some of the many forms of peer support out there. Online alone there are closed Facebook groups, Twitter chats, diabetes Instagrammers, people’s blogs and forums such as Reality Check and TuDiabetes. The possibilities are endless, and without peer support I would not be in such a good place today both physically and emotionally.

The elephant in the room was addressed, with Dr Browne and many consumers in the room expressing that peer support complements, rather than replaces the advice of a healthcare professional. Yet I felt that a conference targeted at diabetes healthcare professionals and promoting patient centred care really missed a golden opportunity to give them a taste of something that we were telling them was so valuable. There were no Tweet stands or promotional material in the conference bags to encourage healthcare professionals to get online. There was not one tweet throughout the whole conference from the @ADSADEA twitter account. The #ADSADEA2017 hashtag was largely flooded by the consumers in attendance.

Carolyn Jones was the final person to take to the stage, and she provided an impressive insight into how Diabetes Victoria engage with their peer support groups to more effectively deliver programs and events that consumers want. She touched on the need for choice so that the consumer could pick the option that suited them best, as well as the need for any peer support to empower the consumer. There are 80 peer support groups running across Victoria consisting of type 1, type 2, mixed groups and online groups. I feel that other states pale in comparison. There were more in rural than metro areas. More of the in person support groups were type 2 specific, which was reassuring to hear given that type 2s aren’t very active in online support.

A massive thank you to everyone involved in putting together such an insightful session. I felt that our consumer perspective on peer support was both championed, and nicely complemented with the research and evidence.

Disclosures: Diabetes Australia provided me with a media pass to attend the ADS-ADEA 2017 conference, with the view that I was interested in attending and delivering my own honest insights to the wider diabetes community. 

Deeper than Diabetes

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Yesterday was a glorious day. The sun was shining, a breeze was blowing, and I had finally found success with my new afternoon basal rate which has been a real work in progress. We’ve been without a patio at home up until Monday, while a much needed new one has been in the process of being built. Inbetween miserable weather and construction, I’ve sorely missed afternoon coffees in the fresh air and sunshine after work. So when yesterday’s OzDOC chat rolled around, I made myself a coffee, grabbed my Macbook and took a seat outside.

As I scrolled through the OzDOC feed on Twitter, it looked like it would be a quiet night. Some of our regular contributors thoughtfully popped in and out to make their apologies. I was fully prepared to take a raincheck on the chat for this week, rather than endure a slow moving chat with few participants.

But conversation continued to flow in a more casual format.

Our moderator, Kim, expressed that she was separated from her daughter on her birthday, and the #dlove flowed.

I mused that I had a damp cloth draped round my wickedly sunburnt arm, and I received some funny sunburn stories from others in return.

Bri from the UK jumped in to tell us that she was starting out on an insulin pump on Thursday, and all I wanted to do was offer her the encouragement I knew she would need as she faces a steep, but worthwhile learning curve.

I was dying to know whether Kim was up to date with Australian Survivor. She was, but she is rooting for Matt, the contestant I dislike the most! I then learned that Matt was an ambassador for a diabetes charity, followed up with a Tweet from the man himself!

Andy popped in with a snazzy new profile pic, and I tweeted hello to Melinda who I haven’t chatted with in a couple of weeks.

Ashley and Glen, both of whom were multi tasking last night, stuck around during much of the conversation.

Bec popped in briefly, and I reminded her of the two places in Melbourne she absolutely had to squeeze into her short trip.

It was just a simple relaxed vibe, that I think was much needed by the group as a whole.

OzDOC is the one diabetes support “group” that I identify with on the internet. Some people I only know through our interactions online. Others I have been fortunate enough to meet in real life. And there are a few who I have only recently promised coffees with should I ever visit their cities. Nevertheless, they truly do feel like friends. I feel a strong sense of camraderie and spirit during our chats on Twitter every Tuesday night.

And even though last night’s chat was not about diabetes, the great OzDOC spirit that I have come to know and love, continued to flow. Even though we are connected by diabetes, it’s nice to be reminded that our connections run deeper than just diabetes alone.

Watching the last of the afternoon light fade and feeling the wind begin to chill with the relaxed vibe of OzDOC yesterday was absolute bliss. As I went inside to a slow cooked beef casserole for dinner, I felt content.

Is the DOC Inclusive?

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I’ve only been a part of the Diabetes Online Community for a little over a year.

When I nervously took part in an OzDOC chat for the first time, I felt very welcome. Strangely welcome, because the discussion was so friendly it looked like these guys all knew each other in real life. Somehow Renza stumbled upon my (very crappy at the time) blog, and offered me encouragement. Mike was one of the first people to leave me a comment, welcoming me into the Diabetes Online Community. I later learned he worked for a little site called Diabetes Mine and had included my post in their monthly blog round up. 

I found my place in this community quite easily, and I continue to participate quite actively. It stimulates me, it offers me support when I need it, and it inspires me to do better with my own diabetes.

Yet the other day, I felt compelled to agree that I sometimes I do feel hesitant to speak up because my opinion might differ from that of the majority.

To this day, one of the hardest things for me to accept is that not everyone is going to agree with me. I constantly try to remind myself that we are all different and naturally won’t agree on everything, but it’s still hard. I guess I find it hard to separate the difference of opinion with a dislike for my character. Silly, I know…

There have been some issues circulating around in the DOC that people have really strong opinions about. #DiabetesAccessMatters and Low Carb High Fat diets, are two examples that come to mind. Sometimes as a witness to these intense discussions and advocacy, I do feel hesitant to jump in with an alternate opinion for fear of being attacked or banished from a community I genuinely do love.

Social media only gives us a really small window into a person. When I first jumped in, I knew nobody with diabetes. I know for me, even just meeting a small group of peers at DX2Sydney this May has given me a lot of perspective in regards to the person with diabetes versus the Twitter window. It was a really valuable experience that carries me forward in my online activity to this day.

Some of my peers in the Australian community have set a great example for me in the use of diabetes social media. When I write here, I am increasingly conscious of trying not to “bash” the alternative opinion, or claim that my opinion is the right one, instead focussing on my own experience.

One thing I do admire is this community’s eagerness to comment and voice their thoughts. I often struggle to fit my ideas into 140 characters, and I’m terrible at keeping up in fast paced Twitter conversations. It often feels easier to lurk than to comment, and I feel I could be more inclusive by not being a stranger so often! 

I feel that Diabetes Daily and Diabetes Mine also do an outstanding job of being inclusive of the wider DOC. Diabetes Daily feature a wide variety of perspectives on diabetes management that I find myself reading more and more of. And you need look no further than the @diabetesmine Twitter feed to see how engaged the folks at Diabetes Mine are with the wider community.

Reading Renza’s post on the issue of inclusiveness yesterday really put my mind at ease. We don’t have to agree with one another, but we certainly need to be respectful so that others don’t feel afraid to voice their thoughts. 

I don’t really know how I come across online. But I hope that others would feel that I am respectful towards other opinions, even if I don’t agree all the time. 

Be kind to one another.

Finding My Tribe

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People don’t see me at 2.30am in the morning, shivering, and shoving skittles down my throat. They don’t see me on a restless night, rage bolussing stubborn highs that refuse to go down. Or the finger pricks I perform every time I walk out of the room.

People don’t see the insulin pump that I pull out of my pocket underneath the table. They don’t see the loads of discarded test strips and insertion devices underneath the lid of my rubbish bin.

People don’t see the guilt I feel every time I put a donut or a piece of chocolate into my mouth. They don’t see how tied down I feel every time I walk out of the house, with a jacket or satchel stuffed full of diabetes crap. Or the failure I feel at the bruises and scars that are hidden underneath my shirt.

People don’t see the exhaustion I feel, every time the alarm clock goes off to check my glucose in the middle of the night. They don’t see the burnout I feel behind every smile, and every single ‘good morning’ that bounces off my face.

People don’t see the rollercoaster of emotions that flood through my body when the door to my room is closed. They don’t see the fear I feel, every time this condition takes an unpredictable turn. Or the judgement I place on myself, every time I go quiet.

You don’t see diabetes, when you look at a person like me. You see normal. I daresay you even see healthy. You see me drinking coffee and eating donuts, just like everyone else. You don’t see all of the tasks that managing this condition entails. You don’t see the isolation I feel, living with a condition that you need to experience to fully understand (and trust me, I wouldn’t wish that on anyone).

For me, a big part of what was missing from my own diabetes equation for the first four years was peer support. Nothing really does beat the feeling of hearing someone else say the words “me too.” “I get it.” Or “I hear you.” Nothing beats the anticipation I feel, every time I refresh my diabetes feed reader. Nothing beats the enthusiasm I feel during OzDOC chats every Tuesday night. Nothing beats the sense of community I feel every time I am glued to Twitter, that makes me feel far less alone with my condition. Nothing beats being able to lean on my family for support when I need it, something that I simply wasn’t able to do after my diagnosis.

There’s an old saying that goes, “find your tribe and love them hard.”

I’ve definitely found mine, and they certainly won’t be going away anytime soon.

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My #OzDOC Story

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When I first started this blog a few months ago, I felt rather lost. I’d had Twitter for some time, although I thought it was absolutely stupid. I didn’t really see the point of following people I didn’t know. I felt so out of place trying to find diabetes stuff to tweet, which at the time didn’t sound even remotely interesting. And I felt like a desperate idiot tweeting my blog posts with every popular hashtag that I could think of.

Then one day, I stumbled upon somebody’s retweet from this Twitter account called the Oz Diabetes Online Community. It’s a Twitter chat for people with or affected by diabetes here in Australia. For one hour every Tuesday night, we introduce ourselves and answer a series of questions around a set topic of the week. We’ve talked about things like germs, exercise, team work, a cure and National Diabetes Week, to name a few. The best part about it is that anyone can see the chat just by typing #OzDOC into your Twitter search bar, and you don’t have to join in until you are ready.

Ever since then, OzDOC has been the place to be on a Tuesday night. OzDOC really got me started in the Twitterverse and the Diabetes Online Community, and helped me to feel less like a stranger. They are an amazing, friendly, welcoming, supportive and inspirational group of people. They were among the first of the #DOC friends that I made. Although I don’t know any of them in real life, they certainly have come to feel a little like family. And I don’t think I’ve missed a single chat since I first found it.

I feel extremely empowered having a space to share my experiences in managing diabetes, and I take a lot of inspiration from the other wonderful people there too. I love that we can all have a good laugh at ourselves, not to mention our fierce comptition for the wittiest tweet of the night. Having a wonderful community like OzDOC helps me to feel a little less alone with my diabetes. And while I love that the Diabetes Online Community connects me with people from all over the world, OzDOC helps me to feel a little more at home with my diabetes here in Australia.

Have a think about what you share about your diabetes with the people in your life, and what you choose to keep to yourself. Then join in by following #OzDOC on Twitter from 8.30pm Tonight AEST (GMT+10). Hope to see you there! (I’m guest co-moderating this week).

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