Peer Support

Remembering My ‘Why.’

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I often marvel at just how much I’ve gained from being a part of the diabetes community.

From talking to people connected to diabetes, to being my own advocate in my diabetes care, raising my voice, asking questions, attending local diabetes events and volunteering my own time toward causes that I am passionate about.

While it’s true that diabetes, and more specifically diabetes blogging, has given me a lot of amazing opportunities, it truly is the community around the diabetes that has given me the most.

Four years ago, I knew next to nothing about diabetes. I was injecting insulin and checking my blood sugar, feeling very conscious of the people around me. I had no confidence in what I was doing. I was riding the rollercoaster, ever so helplessly.

Unfortunately the public system here in Australia, while fantastic, is geared toward clearing those clinic corridors and pushing the person with diabetes toward self-management as soon as possible. More so when you’re someone who is coping relatively better than other patients, even if it doesn’t necessarily feel that way to you.

For me, the lightbulb switched on when I first joined Twitter in 2015.

I had no clue that there was such a valuable resource in other people with diabetes available at the touch of my fingertips. I had no clue that talking to other people with diabetes was a thing, whether that be on Twitter, closed Facebook groups, Instagram, blogs, forums or something else. Those online connections eventually led to in person ones.

The diabetes community would have to be the single biggest thing that has helped me to live well with diabetes, both physically and mentally.

A great deal of what I have learned about diabetes has come from hearing the experiences of others. It certainly goes a long way in complementing the 99.9% of time that I spend outside the company of a healthcare professional.

It makes such a huge difference to know that there are others going through what I’m going through. I daresay that it even inspires, and motivates me to keep going in the daily grind that doesn’t end at 4pm on a Friday or the week before Christmas.

At the same time, I’ve also been authoring this little blog that you’re reading. Here’s the thing. I’ve always admired blogs. Long before diabetes came into my life, and also long before they were somewhat replaced by social media.

I blog for one reason, and one reason alone.

Myself.

I can’t speak for, or represent anyone other than myself through my words here.

However I do hope that through this little corner of the internet, I’ve been able to get some of that information out that I so desperately needed to find four years ago.

As I round out blog post number 500 here at Type 1 Writes, I can confidently say that this is my ‘why.’

Marvelling at the beauty of this building in Leichhardt, NSW, in the same way I marvel at how much diabetes has given me.

Eight.

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It’s hard to remember a life that didn’t revolve around constant pricks of the finger. Days where I could eat whatever I wanted without thinking about the carb counts and insulin injections are all but a distant memory. Simply being able to do whatever I wanted without thinking about the impact on my blood sugar. Or not feeling so “different” or isolated from the people around me because of the invisible and complex nature of my condition.

I spent my eighth diaversary listening to fellow Perth T1D Neil McLagan talk about his recent solo bike ride from Perth to Sydney with a few of my fellow Young Adult Diabetes Committee members. Apart from seeing Neil’s name and his cause (the Telethon Type 1 Diabetes Family Centre) pop up on social media a few times, I knew nothing about him. Admittedly, I just thought of him as ‘an athlete’ – something I would not even come close to qualifying as.

As we introduced ourselves, it was incredible to hear how many similarities we actually shared. From being diagnosed at the same age, to finding connection with others online and feelings of not being in a great place for quite some time. But the one thing that resonated most with me was the significance of finally meeting another person with type 1 several years after diagnosis.

Admittedly, meeting other people with diabetes is a daunting step, and something I would not have been willing to do all those years ago. But if I had to choose one thing that has been most beneficial for me in eight years of living with diabetes, it would have to be my peers.

Twitter. Facebook. The OzDOC community. My fellow Aussie diabetes bloggers, who feel like distant family members every time I embrace them when we are brought together. The Young Adult Diabetes Committee and our thread of Facebook messages that are a goldmine of daily support and laughter.

My peers, both near and far, remind me that I am not alone in this and are what lift me up in my daily self management efforts.

As I listened to Neil recount his enthralling story of survival during his bike ride across Australia, I wasn’t even thinking about how he was managing his diabetes. Diabetes wasn’t the focus of his story, but rather something that just played along in the background.

After eight years of life with type 1 diabetes, I’ve realised that my condition is not something that I need to feel overly conscious of or burdened by.

Don’t get me wrong, managing diabetes is no easy feat.

But like Neil’s epic journey, type 1 diabetes has simply become something that plays out alongside me as I go about living my life.

You can check out more highlights from Neil’s journey on his Facebook page here.

Outside the Bubble.

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“Diabetes! Diabetes! This way!”

The lady behind the counter was shouting and gesturing wildly as I entered the rec centre for an evening on exercise and nutrition put together by my fellow Young Adult Diabetes Committee members.

The YADC came to life a year ago and has since grown into a vibrant community of young adults living with diabetes, who are predominantly type 1s. As I found myself explaining to someone in attendance that night, this group really came about to fulfil a need that was currently missing in the Perth community.

As I took a seat and the evening’s proceedings kicked off, I found myself mentally nodding as I heard concepts being explained by our guest speakers that I was all too familiar with.

I looked around the room, glancing at some of the other people with diabetes and their loved ones in attendance. I observed many of them listening attentively, taking in all of the information they were hearing or jotting it down in note form. My own two parents were sitting behind me, and I wondered how easy this information was for them to take in.

They know the concepts behind managing type 1 diabetes quite well. At home, I find myself talking a lot about some of the exciting developments I read about in the DOC, my advocacy activities and diabetes related travel.

However, I’ve always been very independent in the physical management of my condition. I don’t bother them with all the nitty gritty stuff, like trying to figure out the best time to bolus for a high fat high protein pub dinner when my blood sugar is x mmol.

The evening broke off into group sessions, where I found myself chatting with some of my fellow type 1s in the room. It was nice (but also saddening) to hear other experiences in public hospital diabetes care that mirrored mine, while there were also some inquisitive questions asked of the pumpers and CGM users.

I departed this event with a far greater insight from all of the different perspectives I had heard and observed in the room during the course of the evening, and all of the different motivations for attending.

During our committtee meetings, good ideas simply seem to pop among this very bright group of YADC members. I spend my spare time trawling social media, squealing with excitement over the latest device or venting my frustration over the latest coverage of diabetes in the media. I get to catch up with people in the industry and other diabetes bloggers when I’ve received opportunities to travel, who are people just like me.

This event, however, had finally brought me outside of the diabetes bubble that I so often find myself sitting in. I just need to figure out how I can spend some more time here.

Yesterday’s Incident.

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Over the weekend, an uncomfortable incident caught my attention in a closed diabetes Facebook group. A new member to this group introduced himself as a health coach, sharing a before and after graphic depicting drastic weight loss and an image of a book he was publishing. Apart from the brief mention of the words ‘T1D for 20 years,’ there was no real substance to his post and I seriously doubted that he actually did have a connection to diabetes.

While the moderators of this group were likely out enjoying their Sunday, the community in this Facebook group impressively called this behaviour out for what it was. This man was clearly soliciting his products and services, and many in the group made it clear to him that this kind of a post did not belong in a peer support group.

While many healthcare professionals are still skeptical of online communities replacing their fundamental role, I felt that yesterday’s incident was an impressive example of how peer support is clearly not a place for medical advice.

The Diabetes Online Community typically does a stellar job at self moderation, with the community fostering a culture where participants feel welcomed, encouraged and able to seek support from those who truly ‘get’ it. 

Sure, a big part of our involvement in peer support is asking questions and sharing experiences, but the majority of the community embraces the philosophy that ‘one size does not fit all’ and that ‘your diabetes may vary.’ The DOC does not belong to any one person, and I believe that the majority of the community truly embraces this.

In my experience, keeping these philosophies in mind has made my experience an overwhelmingly positive one. Sure, I have witnessed uglier corners of online communities, and for the most part it’s where participants fail to acknowledge perspectives that might not be aligned with theirs.

One of the best things that has come from participating in the DOC is hearing these diverse perspectives, that have opened my eyes to the reality that not everyone is in as privileged a position as I am.

As for this individual, I expect that he is likely no longer a part of this online peer support group. I, for one, am glad that the DOC has the best interests of each other at heart.

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.