Diabetes Advocacy

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.

Overflowing.

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Being diagnosed with diabetes as a young adult came with its own, unique set of challenges. I had lived a ‘normal’ life for 17 years, and then all of a sudden I had this new condition that I had to find a place for in my life.

Nobody around me knew that I had diabetes, and it was difficult to explain such a complex condition to the people around me. In some ways, it was just easier to deal with my diabetes in private rather than having to try and explain what I was doing in the middle of another frustrating high blood sugar.

Today, I think my diabetes is pretty visible. Whether I’m talking with the pump in my hand, checking my blood sugar in the inventory office at work as someone comes to interrupt me, or walking back out again crunching down glucose tabs.

It’s fair to say that I have a pretty big interest in diabetes today. I spend a lot of my spare time writing here, freelancing over at Diabetes Daily, posting about diabetes on my social media, attending community events, as well as being part of a diabetes Committee here in Perth.

“Are you going with the diabetes group?” is now a fairly standard response from colleagues when they hear that I’m taking annual leave from work.

“What are you doing?”

“What’s that?”

I spent so long imagining people’s reactions to a finger prick or an insulin injection. Today, it often feels like they simply don’t take any notice. Those explanations of the condition that I live with don’t seem to have any effect when the same questions pop up again and again. Perhaps others are just sparing my feelings by not asking me what I am doing.

However after National Diabetes Week, it finally began to feel like those messages of awareness were getting through to the people who needed to hear them the most.

The response to my diagnosis story that was shared on Diabetes WA’s Facebook page last Sunday was phenomenal. The story that appeared in The West Australian on Thursday was absolutely huge.

Despite my repeated arguments of just how terrible that photo was, two colleagues at work pulled the newspaper out of my hands on Thursday morning, took it over to the photocopier and stuck it on the staff room wall at work. “It’s a really important issue that could affect the people you work with!”

Doing media is a really big thing, even for an over sharer like myself, but I couldn’t be prouder of the outcome.

After a big week spent raising awareness of diabetes, and hearing stories shared from fellow people with diabetes, my cup is well and truly overflowing.

This is what National Diabetes Week is all about.

itsabouttime.org.au.

Kicking off Diabetes Week with some of my tribe last weekend.

That Time I Was In The Newspaper

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A few weeks ago, I agreed to be a media ambassador for Diabetes WA’s National Diabetes Week campaign. If you’ve been living under a rock this week, the campaign is calling on earlier detection of the signs and symptoms of diabetes.

Obviously the urgent and life threatening nature of type 1 diabetes is what picked the Editor’s interest the most, and I was told that The West Australian newspaper was interested in running a story. This is despite Diabetes WA’s media release providing equal attention to type 2 diabetes. (However, I do not know if the person with type 2 diabetes profiled in the release was prepared to do media).

The West Australian, in my opinion, are notoriously bad. The quality of journalism, in my opinion, is absolutely terrible. Unless you regard AFL footballers, Channel Seven personalities and Channel Seven television programs as news. The last diabetes article I read had the headline ‘cash strapped diabetic sufferers.’

So, it’s safe to say that I was feeling my fair share of nerves as I opened that newspaper to read how the story was covered yesterday morning.

I found out that The West were planning on running this story last Tuesday. The Editor left me a voice message late on Friday, which I promptly responded to with another voice message outlining my availability and willingness to chat. After a few SMS exchanges a day later, a photograph was arranged for Wednesday morning during Diabetes Research WA’s event for National Diabetes Week.

I was so looking forward to getting a professional photograph done, and jokingly told the photographer to make sure that I was smiling. I like to call myself Chandler Bing, because I always think that I am smiling during a photograph, only to see a very serious looking end result. I was also looking forward to getting a cheeky Instagram of me being photographed, and was bitterly disappointed to be told that I wasn’t allowed to.

We made our way across the road to the beautiful Lake Monger reserve, overlooking the city skyline and glorious Perth sunshine. Instead, the photographer placed me into the bushes, stuck a camera onto one of the trees and told me to walk toward him while looking sideways at this camera. I was then asked to go back and repeat the exercise, this time looking forward at him.

“Shouldn’t I be smiling?” I asked after realising that this was not a warm up exercise but the real thing.

“Isn’t this supposed to be a really serious story?” He replied.

After taking a few photos of me smiling, purely to humour me, our exercise was over.

As I made my way back toward the event I was attending, I expected that the Editor did not plan to ring me as she had said and that I would not have a chance to deliver some key messages on language.

I knew that I would have to get in touch with her and politely deliver the two key messages I had developed from some crowdsourcing during Tuesday night’s OzDOC chat, along with a copy of Diabetes Australia’s Position Statement on Language and Diabetes. I didn’t even care if my message didn’t get through, I only knew that I wouldn’t be able to live with myself if I hadn’t seized this chance to put my case forward.

As expected, I received a pointy email response back highlighting this Editor’s 25 years of medical writing experience. After somewhat defensively being told that terms such as ‘diabetic sufferers’ aren’t used, I had a suspicion that my message had gotten through.

Back to that moment where I was a bundle of nerves, flicking through the pages of that newspaper yesterday morning. Despite the serious photo, I couldn’t be prouder of the outcome.

‘Diabetic sufferer’ is nowhere to be found!

Its About Time…To Raise Awareness of Diabetes!

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This week, I’ve been lending my voice to Diabetes Australia’s National Diabetes Week campaign that is calling on earlier detection of both types of diabetes. It is a campaign that I am really, really proud to support.

As a person living with diabetes, previous campaigns have been difficult to stomach. They’ve often focussed purely on the serious side to diabetes. While these campaigns understandably carry a political agenda for things like greater funding and improved outcomes for people with diabetes, they often lack one crucial element. Audience participation from people with diabetes.

People with diabetes want nothing more than to raise awareness of diabetes during diabetes week. What I love so much about this year’s ‘Its About Time’ campaign (and last year’s, for that matter), is that it hits the right balance of seriousness while also encouraging those of us living with diabetes to raise our voices and promote greater awareness of diabetes.

The type 2 campaign launched on Sunday, calling on everyone at risk to get their diabetes screenings, regular bloodwork and checkups with GPs. This is especially true for those over the age of 40, those who may have a family history of diabetes, those with a waist measurement of over 40 inches and many others. If you know someone who might be at risk, encourage them to get their diabetes screening! There’s also a free calculator that will help you to assess your diabetes risk here.

People can live with type 2 diabetes for up to seven years before it is diagnosed. The onset of symptoms are relatively slow compared to type 1, and many people still feel normal until the condition has progressed further and complications may have developed. Most of these complications would be preventable with earlier detection.

The type 1 campaign launched today, calling on everyone to know the four ‘Ts’ of type 1 diabetes – Tired, Toilet, Thirsty and Thinner. 1 in 5 people are still presenting to hospital in a life threatening state of Diabetic Ketoacidosis (DKA) before being diagnosed with type 1. DKA and hospital admissions could be prevented with earlier detection of the four Ts from both our peers and our healthcare professionals.

One common argument that I see in the diabetes community, and one that I’ve certainly been guilty of in the past, is that type 2 diabetes takes focus away from type 1.

I see this campaign as something that brings the whole diabetes community together.

I think we can all agree that no matter the type of diabetes we have, we would all benefit from earlier detection. However we were diagnosed, I think many of us would still be able to find something small that could have been done better through a greater awareness of those signs and symptoms.

I truly believe that Diabetes Australia are doing a fantastic job at championing people with diabetes. Perhaps I am slightly biased as I have been involved with them in the past, but I truly believe that this is a brilliant campaign.

Let’s shout diabetes awareness to the rooftops!

Fellow people with diabetes, this is our week!

T1 Talk: National Diabetes Week Edition

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We’re back!

My friend Bec of Sweet and Sour Diabetes and I originally designed these conversations as a way to highlight the uniqueness of our experiences with type 1 diabetes, despite both being diagnosed just days apart with only a few years difference in age.

We’ve slacked off a bit with these conversations this year, but we did make up for it with some great conversation while taking in the breathtaking sights of the Parramatta river when we finally met up earlier this year. This is another amazing example of how diabetes has made my world a lot smaller. 

Today, we’re back to dissect all things National Diabetes Week.

The theme of this year’s National Diabetes Week is ‘It’s About Time,’ focussing on knowing the signs and symptoms of both types of diabetes. Would you have benefitted from a greater awareness of the signs and symptoms of type 1 diabetes when you were diagnosed?

Frank: I presented to my doctor with all of the typical symptoms of type 1 diabetes – feeling tired, thirsty, going to the toilet a lot and a looking much thinner. In hindsight, it’s hard to believe that this doctor was unable to recognise any of these symptoms. He diagnosed me with a simple virus, ordering bed rest and lots of hot fluids. Three days later I wound up in hospital vomiting, panting and an extremely rapid heart rate.

Obviously nobody wants to wind up in hospital. Physically, I definitely would have benefitted had that doctor, or the people around me, known those 4 Ts of type 1 diabetes. Mentally, I’m not too sure how I would have handled that diagnosis had I been diagnosed in my doctor’s office. Initially, having type 1 diabetes was nothing compared to having all of those physical symptoms finally relieved.

Bec: It’s so easy for doctors to miss the signs, because they do mimic that of a virus. I agree, for me it would have been a much faster diagnosis if I knew the signs. I was chronically thirsty for such a long time, but I didn’t know that could be a sign of type 1. I delayed going to my doctor for so long that when I eventually got there my blood sugar was in the 40s.

Let’s talk about type 2 diabetes. What do you think people at risk of developing type 2 diabetes need to know?

Frank: As a guy, we tend to only go to the doctors when we’re dying. Overall, people tend to just soldier on when they’re unwell, rather than stopping to look after themselves and recover sooner (our workplaces and cultures could do a lot more to support self care). Furthermore, it’s a lot harder for people with type 2 because the onset is much slower and most will feel quite normal.

Honestly, I think anyone at risk of developing type 2 could minimise that risk by simply staying in touch with their healthcare professionals, maintaining their regular checkups and bloodwork. Just as you and I already do because we live with diabetes.

Bec: I completely agree there is a lot more we could be doing to prompt people to seek medical attention and take care of themselves. People with a known risk of developing Type 2 absolutely need to know the signs, and surround themselves with a good healthcare team as early as possible. This means they have support should the need arise.

I think there also needs to be more education on what Type 2 diabetes is. It’s not all their fault, and I think that assumption and misconception is what delays people seeking medical attention.

What do you think are some of the barriers to people being diagnosed with either forms of diabetes earlier?

Frank: Too many people don’t know the signs and symptoms of type 1 diabetes. Our stories both demonstrate that. It’s scary to still hear stories online of people dying from undiagnosed diabetes today.

I think a lot of people diagnosed with prediabetes or type 2 diabetes don’t have supportive healthcare professionals. Many people are sent home by the doctor being told to lose weight and exercise more, without being referred to an expert such as a Credentialled Diabetes Educator. People will often feel guilty, confused or even in denial while the condition progresses further.

Bec: Type 1 is completely unknown unless you have a personal link to it. I guess all we can do is share our stories to try and combat that. It takes time for diagnosis because we don’t know what we’re looking for, and Type 1 isn’t the first thing that pops into your head.

Type 2 again has so many misconceptions that it puts people off seeking help. Why go in when you’re just going to be told the same thing time and time again- eat well and exercise. There needs to be more support from health professionals, more awareness of the real nature of Type 2 and more compassion from everyone. No one chooses to get a chronic illness.