Diabetes Online Community

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.

#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.

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.

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.

How I Became Empowered to Chat Act Change

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Wednesday’s #DSMA Twitter chat was about how we, as patients living with a chronic condition, can Chat, Act and make Change. Seeing as Wednesday nights always translate to Thursday mornings here in Australia while I’m at work, I thought I’d share my thoughts from the chat here today.

One year ago, I was a shadow of my current self.

I felt very much alone with my diabetes. I didn’t know anyone else with diabetes in real life. Most of the people around me didn’t know anything about the type of diabetes that I had. Nobody saw what I had to do to manage my diabetes. The insulin injections, the blood glucose tests, and all of the frustrations and emotions that I went through at night while the door to my room was closed shut.

It was very easy for me to shy away from diabetes. The more time that lapsed since my diagnosis, the more I would keep things to myself. I didn’t want to talk about diabetes with my family at the dinner table. I didn’t want to add my voice to the conversation if it meant that I had to talk about diabetes. I didn’t want to appear weak in front of others, because of my diabetes.

I struggled to embrace the support system that I did have in my healthcare professionals. I struggled to be open and honest in front of a revolving door of endocrinologists, being in a busy young adult diabetes clinic. I would smile and nod my head as she congratulated me on my excellent hba1c level, when in my head I knew that I had woken up hypo every night in that past week. Deep down I knew that things needed to improve, but I kept telling myself that things would change next week. And then the week after that. And then in the new year.

It’s very hard to feel empowered, let alone advocate, when you live with a condition that makes your life so much different from those around you at times. One year ago, I was far from an empowered patient.

Blogging and joining in the Diabetes Online Community on Twitter has changed my life, for the better. Having those connections from others who “get it” has filled a huge gap that was missing in my diabetes management. Having a blog which I was able to pour all of my thoughts into was extremely therapeutic. Receiving words of support from others in return was an added bonus.

I would like to think that my diabetes management is a million miles better than it was a year ago. I have a genuine interest in the disease that I live with, thanks to the Diabetes Online Community. I get information and inspiration from this community every day, that I can apply towards making my own diabetes management better. I have my own thoughts, and opinions that I want to talk about, on my blog and at home. If there’s a story on the news about diabetes, we’ll talk about it at the dinner table. If something interesting happens during the day, the first thing I want to do is get home and share it on my blog.

Being an empowered patient has helped me loads with my healthcare professionals. For one, I have taken my diabetes way more seriously in this past year than I ever have previously. In recent months I addressed minor concerns with my eyes and my feet straight away. I actively pursued a cancellation when I needed to see my endocrinologist in August, rather than wait until January. I packed my supplies like a crazy person when I went on holidays in July, rather than just taking the bare essentials. And I am now seriously considering an insulin pump, because I would like to achieve better than “okay” results with my diabetes managment.

Being a part of this community empowered me to advocate for something I strongly believed in – greater access to glucose test strips for Australians through the National Diabetes Services Scheme (NDSS). And that I did, through a column for Insulin Nation in July. That column resulted in a small change to the wording on the NDSS website, something I am extremely proud of. I have blogged, and intend on writing to Minister Ley, calling for government funding towards Continious Glucose Monitoring in Australia. And I like to think that the existence of this blog is a form of advocacy in itself each and every day.

The longer that I am a part of this wonderful community, the greater my passion is for all things diabetes. That passion grows more and more with each passing day. And that’s how I am empowered to #ChatActChange.

Join the #DSMA Twitter chats every Wednesday night at 9pm US Eastern Time by following @DiabetesSocMed and the #DSMA hashtag on Twitter.