Taking a Plunge Into the Diabetes Twitterverse

I was extremely hesitant about taking a plunge into the Twitterverse a year ago. Unlike Facebook, my name, my photo, and everything I posted could be seen by anyone on the internet. When I first joined I would upload a profile photo, Tweet a few things, and then delete everything on my page again. I did this a few times before I eventually had the confidence to stick with it.

I seriously considered Tweeting under an alias for a while. But inspired by others I saw in the diabetes community, I decided to go with a first name and a profile photo. I wanted people to be able to connect with me, and I felt that this did me better justice than an alias.

I also feel that putting my name to my posts on social media makes them more honest and genuine. I think it’s a lot easier to be dishonest and disrespectful on social media when you’re posting behind a mask. If you’re serious about the “a” word (advocacy), then this is definitely something to consider too. I know that when I’m scrolling through my Twitter followers, I’ll follow back genuine people with diabetes rather than the account called “Diabetes Cures.”

It’s fair to say that Twitter has surprised me. I thought that Twitter would be pointless for someone like me, who was relatively unknown and far from the likes of being a celebrity. I never thought that I would make connections, or find any meaning to it. That is, until I began using it with a focus on diabetes. I have discovered a whole new meaning to Twitter since I began using it with a focus on diabetes.

A lot of people with diabetes use Twitter. If your Twitter profile identifies as a person with diabetes, chances are a lot of these friendly folk will follow you back. There’s just something so meaningful about being able to reach out or share with people who just “get it.” Waiting out a hypo at 3am? Support on the other side of the world is just a Tweet away. Have a question? There’s a good chance someone else in your circle has gone through the very same thing. Having access to this kind of support 24 hours a day is very meaningful to me.

I love that Twitter is so short and sharp and to the point. It’s also very stimulating. It’s the first thing I check when I’m sitting at the table with my coffee in the morning. It’s something I relish during a break in the afternoon. I’m always finding something interesting to read, or jumping into a chat such as #OzDOC or #DCDE. It’s the place where I initially became passionate about diabetes (outside of my blog, of course).

I also love my hashtags. Owning a genuine Tweet about diabetes with the hashtag #diabetes is just so empowering. Everytime I use the hashtag, I mentally picture my Tweet thwarting 10 other Tweets in the #diabetes feed promoting cinnamon and weight loss and cures. I’m proud that I’m putting genuine information out there.

I love Twitter. It’s helped me to find a community, become an empowered patient, and feel less alone with my diabetes in general. Although I haven’t met any of these folks in real life, many of them do feel like friends. When you live with something as isolating as diabetes, that’s not a bad thing to have.

Accessing My Diabetes Healthcare in Australia

This post from Diabetes Mine caught my eye over the weekend. I’ve read so many stories from the US about diabetes management tools being tied to health insurance. Patients often go through ordeals with their insurance companies in order to obtain the items that I take for granted every day. Insurance is tied to an individual’s employer, which means that a change of job often comes with a change of insurance. A new insurer won’t necessarily cover the same items that the old one did. And becoming unemployed means that individuals often find themselves without insurance and facing hefty medical costs.

In comparison, I have it so easy here in Australia.

You’ve probably seen me talk about the National Diabetes Services Scheme (NDSS) a fair bit here. In Australia, this is the vehicle through which most diabetes products are delivered through. It’s funded by the government, and delivered through Diabetes Australia and pharmacy outlets.

When I was first diagnosed with type 1 diabetes in hospital, I was signed up to the NDSS straight away. Upon registration, I was able to access consumables like test strips, needles, insulin and pump consumables at a heavily subsidised price. I buy consumables at my local pharmacy, however I can also order through Diabetes Australia and have them delivered to my door. Generally speaking, I’ve never had any major troubles accessing diabetes supplies.

There are a few setbacks. There are limits on quantities that I am able to purchase. As a type 1, I normally get around this by shopping more often and in smaller quantities. If you are a type 2, access is now largely in the hands of a healthcare professional. Continuous Glucose Monitoring consumables are not subsidised on the NDSS. I also feel that there are a lot of barriers to accessing diabetes technology in Australia, too.

Then, there’s private health insurance. I was covered under my parent’s fund until I began working full time, when I then had to take out my own policy. I pay an annual premium to a fund of my choice, which costs me roughly a week’s pay. My package is a comprehensive one, but I can generally tailor them to suit my needs and my budget. Hospital cover ensures that I will be treated straight away if I’m admitted to hospital, and generally most costs associated with hospital care are covered. I can choose services for my plan that I use frequently, such as dental, optical and podiatry, and only pay a small out of pocket cost. Another thing which is pretty sweet for me is that my health insurance will also cover the cost of my pump! An $8,000 device ain’t bad for the small annual premium I pay!

Not everyone in Australia has private health insurance. We also have a system called Medicare, which is funded through taxpayer dollars, and covers emergency hospital procedures and doctor’s visits. But private health insurance offers me peace of mind, and significant financial relief over my medical costs. With a condition as demanding as diabetes, I simply couldn’t live without it.

While I often whinge about the small things, I count myself pretty lucky. It might suck to live with diabetes, but I’m extremely fortunate to live in Australia with it.

An Excellent Example of Patient Centred Care

On Wednesday afternoon, I visited the dentist. I arrived a few minutes prior to my 3.30pm appointment. I greeted the receptionist, whose friendly voice over the phone was instantly recognisable in person. I was fully expecting to be handed a clipboard of tiresome forms to “update” my medical information. Instead, I was invited to take a seat.

I sank into one of the comfortable couches in the air conditioned waiting room. The coffee table wasn’t strewn with ancient magazines, and there was a flatscreen TV playing The Chase on the wall to my right (I hate that nobody ever wins any money!). I could hear my dentist tending to a patient in the surgery as I sat there, waiting. Being the only person in there, I knew that I was up next.

As I was sitting there, I could hear the friendly receptionist tending to some of the admin duties. I heard her place a follow up call to a patient who had seen the dentist recently. She asked the patient if they were still sore, and if everything worked out okay with BUPA (obviously the patient’s health insurer). She also (very smartly) placed a few calls to patients who were due for their 6 month appointments, asking if they would like to make one.

My dentist eventually came out into the waiting room to greet me. She apologised for the wait, before inviting me into the surgery. I was impressed at how well prepared she was to remember my name and the length of time since my last visit in June.

After a lot of poking and prodding and polishing, everything was looking good and it was time to settle the bill. Despite the fact that I did not respond to the recall letter that was sent to me 3 months ago, the receptionist still gave me the 15% discount for being a long time customer. She politely requested my HBF card to process my insurance claim, and then clearly showed me the amount that had been covered and the small gap that I would need to pay. I remembered to pay with EFTPOS this time, after she had to go and find the cash to give me change last time!

I departed with a small clear pencil case complete with toothbrush, floss and a business card, feeling extremely satisfied and valued.

 

This was one of the most amazing, person centred healthcare experiences I’ve had in a long time. It was a big contrast to the diabetes professionals I visit at a public hospital, who are often pressed for time and in high demand. My own general practitioner also lacks the time or the detail I’d often like from him, and I’ve often left feeling disappointed.

Obviously, it’s not fair to compare this experience with my diabetes care. My hospital diabetes clinic falls under public (government funded) healthcare and I pay absolutely nothing for it. However, I know that some people in Australia do pay for costly private diabetes services and still end up feeling dissatisfied. I’ve paid for many healthcare services myself in the past, and was left feeling dissatisfied.

The standard of care I received here was an incredibly refreshing change of scenery. This is what all healthcare providers, and serious business owners, should be aiming for.

Prepared For Nothing

I can’t say that I’m the most “prepared” person when it comes to my diabetes.

I remember being asked where my blood glucose meter, insulin pen and jellybeans were in one of the first sessions with my dietician shortly after my diagnosis. “But what if you need to test?” She asked. “What if you have a hypo?” Naturally being the stubborn person that I am, my answer went something like “I’m not going to have a hypo” or “who can be bothered carrying around all of that crap!”

I never wear my Medic Alert bracelet, much to the delight of my parents. Every May, I fork out the annual membership fee of $30, so that I can easily be identified in an emergency by a bracelet that I never even wear. I still get nagged by Mum with “what if something happens.” Dad then chimes in, more to agree with Mum than anything else, with “son, you should really wear your bracelet.”Again, my answer will go something like “as if anything is going to happen” or “as if I’m not going to be able to at least say diabetes to the medic after a car crash.”

These days I am getting better at keeping an insulin pen and meter handy when I’m going to be away from home for a few hours. Jackets are great for this, especially for guys. Sometimes at parties I’ll even carry my jacket just for the sake of disguising my diabetes crap. Other times the meter stays in the car, which is still better than being all the way back at home.

However, I still rarely keep hypo treatments on hand. At work, for instance, I normally have plenty of food on hand. Coffee capsules, Bananas and Carman’s Muesli Bars are often stashed hoarded in my locker. And there’s almost always a ham and cheese sandwich in the fridge with my name on it, waiting to be toasted at lunchtime. Except for Friday, that is. Friday is my slack day, where I buy everything. And last Friday morning, I found myself hypo and paying for my stupidity. 

I was pretty sure that I’d finished that box of Muesli bars in my locker, but I went to check anyway. I fumbled around, praying that my fingers would reach a muesli bar that wasn’t there. As a last resort, I ate my shabby banana that should have been eaten a few days ago. There were a few brown patches that had to be picked at and thrown in the bin. It wasn’t my finest moment, but it was enough to do the trick. And it was enough to make me do two things.

I’ve brought a bag of skittles for the ol’ locker.

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And I’ve set up Medical ID on my iPhone. Not quite a Medical ID bracelet, but it’s a start, right?

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Why Isn’t Online Peer Support Encouraged?

I first ventured online a year ago, shortly after I started this blog. I didn’t really know what was out there. I didn’t even think that there was anything out there where diabetes was concerned.

Even today, the size of this online community continues to amaze me. There are blogs, there are podcasts, there are news sites, there are friendly Facebook groups, there are the TuDiabetes forums filled with lively discussion, there are Tumblr pages filled with gifs and humour, and there are Twitter support chats.

It’s fair to say that my experience in online diabetes support has surpassed my expectations.

Online peer support has changed the way I live with, and view diabetes. It’s empowered me. It’s given me a voice for my diabetes. It’s given me a lot of confidence in the way that I live with, and manage my diabetes in real life. It’s given me a space to connect and to share with other people who are going through exactly what I deal with each and every day. It has empowered me to challenge myself, and to seek out alternative tools that will better help me to manage my diabetes. I seriously doubt I would have even considered an insulin pump if it weren’t for this sense of empowerment, and support from DOC connections.

One online peer support space that I truly champion here in Australia is the Oz Diabetes Online Community. If you follow the hashtag #OzDOC on Twitter every Tuesday night (that’s tonight) at 8.30pm AEDT (GMT+11), you’ll find a group of us sharing answers around a topic related to life with diabetes for one hour. Everyone is so friendly and welcoming, it almost seems as though we know each other in real life! I’ve joined in almost every Tuesday since I found it. It’s both thought provoking and supportive at the same time. All you need is a Twitter account, and you don’t have to use it for anything else if you don’t want to! You can lurk until you are comfortable to join in, and nobody will be any wiser.

I don’t know many people with diabetes in real life, so online peer support has certainly helped me to feel less alone with my diabetes. It’s just a shame that it took five years of life with diabetes to finally seek this community out. Nobody told me about it. Nobody encouraged me to do it. I just somehow stumbled upon it one day.

In all honesty, I’d love to see online peer support groups encouraged by healthcare professionals. I’d love to feel more comfortable talking about it, without worrying about receiving funny looks in return. I’d love to see posters hanging up in clinics and offices, and for diabetes professionals to suggest it to their patients. I’d love to see more open minded Australian healthcare professionals join in our social media activity.

On that note, I am going to make it my mission to plug the OzDOC community a little harder this year. I’ve joined a team of moderators who are bringing some fantastic topic ideas to the table for chats in the weeks to come. I’m going to plug it a little more in my blog posts and social media on Tuesdays. I’ve even snuck some posters into the waiting room at my Diabetes Clinic. I hope you can join us tonight.

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