Peer Support

A Decade With Diabetes

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If I could best describe diabetes, I would say that it’s incredibly monotonous. How do I psych myself up to check my blood sugar, count the carbs in my food and deliver my insulin? How do I psych myself up to check my blood sugar again, count the carbs in my food again and deliver my insulin again?

One of the hardest things about diabetes is being able to muster enthusiasm to do this thing day in, day out. How do I keep my diabetes management feeling fresh and exciting? How do I keep myself feeling energised to put in the best effort I possibly can each day, without ever getting a break? How do I keep myself motivated when diabetes suddenly decides that what was working for me yesterday, is not going to work today?

Today marks a decade with diabetes. It doesn’t really feel like a decade. It feels like forever. I can also say that it doesn’t really feel like anything extra special when you have to do this all day, every day for the rest of your life.

Technology is one of those things that has firmly helped me to manage my diabetes in the best way that I possibly can. I acknowledge my privilege in being able to say that. The t:slim is a massive upgrade to the old Animas Vibe which constantly fatigued me. Being able to leave the house with nothing more than my phone and glucose tabs is the best feeling in the world. My rebatteried Dexcom has given me a greater level of convenience in my day to day with diabetes which I’ve never had before.

But it would undoubtedly be the power of peer support that helps to re-energise me in my diabetes efforts on a daily basis. From the #OzDOC chats of old, to being part of the Young Adult Diabetes Committee, right through to events like DX and the Diabetes Congress where I’ve met so many amazing people with and connected to diabetes. It fills my cup to the point where its overflowing, each and every time.

I’ve invested so much into myself over these past ten years, and I’m not sure that I ever would have found the motivation to do that if it weren’t for the community I have wrapped around me.

So, I guess today doesn’t feel like anything particularly special. It just feels like any other ordinary Saturday. Outside of Mother’s Day plans, I don’t really have anything special planned for today. I think I’m just grateful for that sense of normality. Well, as close to normality as possible when you have diabetes.

A decade with diabetes has beyond surpassed my expectations.

Thanks for being a part of it.

Gratitude.

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Today marks nine years of living with type 1 diabetes.

I might only be a dia-baby in the eyes of many of you, but to me nine years is pretty significant. It represents the majority of my adult life. As it becomes harder and harder to find things around me that pre-date my diabetes, it becomes harder for me to believe that a life once existed without it.

I don’t really know what to say today except that I am grateful. I’m grateful to be here. I’m grateful to be able to wake up, savour that first sip of coffee, watch the sky light up from my kitchen window, get dressed and go to work with ease.

I’m grateful to be living in an era of modern insulins, tools and technologies that give me a really good chance to be able to manage my diabetes well.

I’m grateful to live in a country where basic healthcare and diabetes supplies are relatively accessible and affordable. Thank you, Medicare and NDSS. I’m grateful to have a job and a roof over my head that allows me to pay for those things.

I’m grateful for the time and effort that diabetes has forced me to invest in myself. From curling up in front of blogs and books to spending nights scrutinising over blood sugar patterns, and just taking the time to listen to what my body is trying to tell me. I am a better person for it.

I’m grateful to have found the Diabetes Online Community a couple of years ago, which has today evolved into an amazing tribe of peer support around me. I’m grateful for the source of friendship, support and constant reminders that I am not alone in what I am dealing with.

I’m grateful for my family. Who tagged along to those initial clinic appointments, who have helped me out massively in the diabetes finance department, and who don’t ask me what my levels have been like.

More than anything, I am just so damn grateful to feel as ‘comfy’ as I do with my diabetes. That’s not to say that diabetes isn’t hard, or frustrating or filled with its moments. But yeah, I feel comfortable checking my blood sugar. Or wearing an insulin pump. Or talking about diabetes if it helps to explain something.

So this afternoon I’ll be grabbing a coffee and something nice to go with it, sitting in the sun and reflecting on the past nine years and just how far I’ve come.

My Wish For the Diabetes Community In 2019

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Let’s have more collaboration and less disconnect. Organisations, healthcare professionals, researchers, pharmaceuticals, industry, people with diabetes and people connected to diabetes. We are all doing amazing things. We all want the same thing, too! Imagine how much more we could achieve if we put our minds together and joined forces?

Let’s respect each other’s differences in the way that we choose to manage our diabetes. Two people will never be exactly the same, so why do we expect two people with diabetes to be? I don’t subscribe to the notion that one size fits all when it comes to managing diabetes. Whether that be pens, pumps, meters, sensors, needles, syringes, Twitter, Facebook, carbs or no carbs, we are all unique and can peacefully co-exist together.

Let’s remember that no one issue is more important than another. Whether that be insulin pricing, insulin for those less fortunate, funding for CGMs, funding for better healthcare services or greater awareness of diabetes. If it’s important to one person, then it’s important. Full stop. But by turning it into an ‘us against them’ scenario, we are marginalising other groups campaigning for equally worthy causes.

While I’m there, let’s put an end to the calls for greater distinction between type 1 and type 2 diabetes. Yes, there are two (well actually, many more) types of diabetes. And yes, it’s important to know the differences between the two. But let’s also remember that nobody asks to get diabetes. This need to separate ourselves from people with other types of diabetes only serves to stigmatise people with different kinds of diabetes than us. We’re all in this together, right?

Let’s bring the voices of more people with diabetes to the table. Let’s see more people with diabetes talking to those in the industry. Let’s see organisations who are representing us, engaging with us. Let’s involve people with diabetes in all aspects of the research and development process, and not just at the launch phase. After all, how can people with diabetes not have a place in discussions that are about us?

Let’s celebrate the small victories (I’m the first to admit to being a glass half empty kind of guy…). Many of us don’t appreciate, for example, the research and development that goes into a product, or the advocacy that goes into securing funding from the government. Good things take time.

Let’s never give up on striving for more. Whether that be talking to your local Member of Parliament to advocate for better outcomes for people with diabetes, or challenging yourself to reach new goals in your own diabetes management. Energy spent complaining (and I’m the first to admit to being a serial whinger) is energy that we could be putting towards something productive.

Let’s never lose sight of why we all joined the diabetes community in the first place. To connect with other people just like us. To raise each other up on the tough days. To bask with us in the glory of our small victories. To know that we are never alone in what we are dealing with. Let’s continue to amplify the peer support that this community does best.

#HealtheVoicesAU 2018

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Last weekend, I was lucky enough to get to Sydney to attend HealtheVoices (which I learned is actually spoken more like ‘healthy voices’ rather than ‘health-e-voices’).

After seeing the wild popularity of this conference among folks in the diabetes community who had attended US editions in recent years, I was curious to see what it was all about. This was the second edition that had been held in Australia, and my first time attending. Even if I didn’t get anything out of it, I figured it would still be worth attending just to catch up with some of the diabetes gang that would be there.

HealtheVoices is run by a company called Janssen (pronounced yaan-sen), which I believe is the pharmaceutical division of Johnson and Johnson. Their mission is to create a world without disease, and hence this program which is designed to support online health communities and advocates.

I guess this was a uniquely unique conference experience for me, because it put diabetes into a broader perspective of other health conditions. Just like diabetes, many of the other conditions represented there appeared largely invisible. I’d be lying if I said I didn’t find myself wondering where diabetes ‘sits’ in relation to all of the other conditions there.

Some of the other health conditions represented there included crohn’s, colitis, arthritis, various cancers and cystic fibrosis related diabetes. There were people living with the conditions, representatives from health organisations and carers. I was once again on the receiving end of stunned looks upon telling people I had travelled all the way from Perth.

SANE Australia, who appeared to be a major partner of the conference, supplied at least 20 or 30 mental health peer ambassadors, which speaks volumes about the prevalence and need to address mental health.

Throughout the weekend, I found myself explaining to others how the diabetes community operates, and how the diabetes ‘gang’ has become somewhat of a close knit group through social media, industry sponsored events, advocacy work and similar interests.

As I was listening to keynote speeches and personal experiences being shared on stage, I was left wondering what ‘community’ looked like for people living with health conditions other than diabetes.

Just last week, I wrote about how I have so many different ‘tribes’ that make up my diabetes support system. It couldn’t be more true. Because no matter where I am or who I am with, being part of the diabetes community always makes me feel that I am part of something bigger. I always, always, always feel like I am part of a community that has my back.

I really wondered about the dynamics of other health communities, what sort of a role consumers have in those communities, and whether they were as ‘closely knit’ as mine.

Something tells me that the diabetes community really is leading the way.

Disclosure: Janssen ANZ covered my flights, accommodation and shuttle to Sydney airport to attend HealtheVoices. Dad gave me a lift to and from Perth airport, and I happily paid for my train fare into Sydney CBD as I wished to arrive earlier in the day. I was fed and watered across the duration of the event, and also received a tote bag with some HealtheVoices stationery. 

The only condition of my attendance is that I would disclose the above if I chose to share my experience online. These thoughts are entirely my own. I happily gave up a day of annual leave from work to attend, as well as my Saturday.

My Diabetes Family

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Diabetes is an incredibly isolating condition to live with. Nobody around me can see the relentless decision making, thought processes and feelings that I am left to deal with on my own. To add to that, I do most of the housework including finger pricks, pump maintenance and eating glucose tabs in a quiet place.

When I was first diagnosed, I didn’t know a single other person like me. Over the weekend, I connected with three fellow type 1s, each of whom had developed strong peer support networks within a short timeframe after their diagnosis. I was in awe. I didn’t even think of searching for diabetes in my search bar or on Facebook. Mind you, I can’t say that I would have had an open mind to peer support at the time. Regardless, I kind of stumbled across it by accident.

Abbott’s first DX event in 2016 is a memory that will always hold a special place in my heart. It was the first real time I had spent in the company of a group of people with diabetes just like me. It was a place where I was finally able to put faces to many OzDOC folk who I had only ever chatted with online.

Today, I count myself lucky that I have so many more ‘tribes’ of people with diabetes that I can rely on for peer support. They truly have changed my outlook on life with diabetes for the better.

Some are near, while others are further away. Some are people with diabetes, while others are connected to diabetes. I chat with them online and see them in person at diabetes meetups. I’ve learned a lot from them, and they have definitely inspired me. They are the ones who truly ‘get’ it. They are a reminder that I am not alone in the highs, the lows, the unicorns, the emotions and everything inbetween.

I’m also super grateful for my own two parents, who have supported me unconditionally since the day I was diagnosed (or should I say, born!). Little things like offering to accompany me to appointments in the earlier days, listening to me talk about diabetes, helping me out financially and reminding me that they’ll always have my back.

On World Diabetes Day, Diabetes Australia are asking us to shine a light on ‘My Diabetes Family.’

Today I’d like to raise a coffee mug to mine.

You have all truly changed my life for the better.

I honestly don’t know what I would do without all of you.