“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”
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.
Last Tuesday, I was a part of the ‘People With Diabetes Panel Discussion’ at the Roche Educators Day. This is the first time that consumers have formed a part of the day’s proceedings, and I do thank Roche for having us there frantically tweeting away! It was also extremely humbling to see consumers being championed throughout the day by some of the presenters and attendees asking questions.
In a refreshing change of pace, West Australians on the panel outnumbered Eastern Australians. I was introduced to fellow type 1 Samantha, who is also Mum to two type 1 children, and Stephanie who lives with type 2 diabetes. The Eastern Australian contingent was represented by Ashley of Bittersweet Diagnosis and Renza of Diabetogenic.
Having two people on the panel who weren’t as immersed in the online world as myself, Ashley and Renza made the discussion richer. It was very insightful to hear Stephanie’s experience as a type 2, and not feeling very enlightened with her diabetes management until completing a DESMOND workshop. Samm’s perspective of “don’t wish for your problems to go away, wish for better skills to deal with them,” has also stuck with me for a number of days.
The highlight of my day was being able to tell a room full of healthcare professionals the importance of building a good support system. A short three years ago, I didn’t know a single person living with diabetes. I was feeling relatively isolated and alone with my condition before I began writing my blog and connecting to others through social media and eventually offline.
Our discussion shifted towards the illusive concept of ‘control,’ and this really challenged a belief that I had held for a long time. I was told I would live a normal life on my diagnosis, more so from my parents than from my healthcare professionals. I long imagined reaching a point where I would feel in control of my diabetes. As much as I wanted to believe that diabetes doesn’t make me any different, it does. Diabetes is not normal. We can only do our best to minimise the disruption of a very lousy condition.
I got the crowd laughing when I began talking about how my healthcare professionals continually bang on about not having more than two hypos a week. Despite their well meaning intentions, it’s simply not a realistic goal. I’ve certainly found that it’s an unfortunate trade off with spending more time in range. Then at the other end of the spectrum, I was ecstatic to see numbers in the single digits after my diagnosis while my diabetes educator told me that I needed to be correcting a blood sugar of 9 mmol. Ah, such a fine art…
So, what is the best thing that’s come from being diagnosed with diabetes?
Diabetes has made me a more confident person. I have learned to speak up for what I want from my diabetes healthcare professionals, and to make sure that they are working for me and meeting my needs. Three years ago I’d hardly have imagined myself being so open about my diabetes, let alone being an advocate for others. I really do think that this confidence has spread beyond my diabetes alone.
We weren’t supposed to talk about our peers as a positive of diabetes, because we talk about them all the time. However, I said it anyway. Diabetes has made the great big world around me a lot smaller through the people I’ve been lucky enough to meet, both online and off.
When I think about how hard it was for me to say goodbye to each of these amazing individuals on Friday after four days together, I think that peers are definitely the best thing that have come from diabetes.
Disclosures: Roche Diabetes Care Australia covered my registration and travel costs to attend Roche Educator’s Day. I am also being paid an Honoraria for my giving up my time to speak in the People With Diabetes panel discussion. There was no expectation that my participation would bind me to a particular view of Roche, nor was there any expectation that I would blog or Tweet about the event.
On Tuesday, I attended the Roche day for Diabetes Educators as an invited speaker. For the remainder of the week, I am at the ADS-ADEA conference as a consumer reporter for Diabetes Australia. All disclosures are here.
My time at the Perth Convention and Exhibition Centre has been an extremely humbling experience, and unlike any of the consumer driven events that I’ve ever been to.
I really have been blown away by the many incredible diabetes educators who came and introduced themselves to me at the conclusion of the Roche Educators Day on Tuesday. It was so humbling to hear them praise the lived experience that was presented during a consumer driven panel discussion. They had travelled from all over the country to be here, and their passion to learn and to self improve really shone through.
This was indeed, a very different crowd to the consumer events that I’m used to. For me, the highlight was putting faces to some of the diabetes educators and healthcare professionals that I’ve previously only known online. Including getting a big pinch from South Australian based diabetes educator Jayne Lehman, and being asked if I was real. It was also great to reconnect with the team from Abbott a few short weeks after our convention at DX2Melbourne, as well as meeting the team from the Australian Behavioural Centre for Research in Diabetes (ACBRD).
The real highlight was being able share this experience with Renza, Ashley and Melinda. Each of us have very different opinions on diabetes. Each of us come from different walks of life. Yet I love that we are able to come together, support each other, respect each other, and hopefully enjoy each other’s company at events like these.
I feel like I’ve been a broken record in my conversations, repeatedly saying to people I meet that I do not represent all people with diabetes. I am among the more privileged, more well educated individuals. Sadly this is not the reality for all people with diabetes. I was one of those people a short three years ago. It really is my wish not only to see consumers more empowered in their diabetes management, but also to see healthcare professionals and diabetes organisations better supporting their patients to be more confident in self management.
In response to a statement from diabetes educators about some consumers not taking responsibility for their actions, Melinda at Twice Diabetes put it really bluntly in one of our sessions yesterday afternoon. Consumers really have no choice but to start taking responsibility for their diabetes decision making.
Diabetes is a live or die situation.
You can continue to follow our live updates from the ADS-ADEA conference in Perth today by following #ADSADEA2017 and #DAPeoplesVoice on Twitter.
“Can I get my hba1c done?” I asked my diabetes educator, the minute I walked through the door.
“I’ll go get the kit.”
I waited for what felt like forever, my attention shifting from a wall clock identical to those in my high school, to a weary poster from the 90s shouting reduced risks of cardiovascular diseases for every 1% drop in my hba1c.
As I sat there, exhausted after a full on day and a week of rollercoaster blood sugar levels, I wondered what my hba1c might look like. I hadn’t set the bar very high for myself. I was convinced I wouldn’t be anywhere close to my personal goal. I’d be lucky just to clear the 7% mark, at best.
Even though we say all the time that we are more than just numbers, it’s so freaking hard not to feel defined by one. Every day, I wake up to numbers. I make decisions based on numbers. I over-analyse numbers. I feel frustration over numbers. My long term health is dependent on the numbers. Numbers are the very last thing I see, before I go to bed at night.
I’d be lying if I said that my last hba1c hadn’t been hanging over my head since August. I’ve poured my blood, sweat and tears into my numbers over the past few months. But as my diabetes educator made her return to the room, I was about to learn that all of that effort had paid off.
“You’re joking!” I exclaimed.
“I can’t believe it!” I said to myself, leaning back and shooting both my arms up into the air in victory.
The feeling was indescribable.
Not only had I bested my personal goal, but I had clocked in over a point lower than August, and had set a new personal best.
I felt a million miles lighter. I felt like a weight had been lifted off of my shoulders. I felt like I was sitting on top of the world. I felt free.
I couldn’t wipe the grin off my face as I stepped out into the mild, sunny November afternoon. As I made my way down Hospital Avenue and back to my car, I kept repeating my new a1c over and over in my head.
I made a pit stop at San Churros on the way home for a Spanish White Hot Chocolate. A big plate of Connoisseur Belgian Chocolate Ice Cream followed when I arrived home, as I eagerly told my family the news.
I felt proud. I had fought a gruelling battle to regain some form of control over my blood sugar levels in the past year, and I had come out on the other side stronger than ever.
In that moment, I had won.