Diabetes and the Online Community

Prioritising Emotional Wellbeing in Diabetes Care

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How many healthcare professionals ask you “how are you going” during an appointment?

Not how are your numbers going.

Or how your diet is going.

Or, how are the number of hypos you are having each week going.

When I say ‘how are you going,’ I mean ‘how are YOU going?’

I must admit that I was surprised in hearing psychologist Lisa Robbins express confidence in the abilities of diabetes healthcare professionals to identify burnout triggers, during our live webcast at DX2Melbourne. It’s my view that the right healthcare professional would be able to identify those triggers.

In my humble experience, I often felt a lack of emotional support from my endocrinologist and my doctor in my early days of type 1. I never felt that they had the time for me on a busy clinic day, and I didn’t really feel too important when there were younger children and families around who understandably required more attention.

It was often hard to open up and be honest with them for fear of judgement. My very first endocrinologist told me that I had very poor control, just weeks after my diagnosis. Meanwhile, my general practitioner often told me that “my sugar levels are too high” without actually offering anything more substantial or helpful.

For the record, I certainly don’t expect that an endocrinologist or general practitioner should have to fill the role of a counsellor. They are qualified professionals in high demand. No doubt they have far better things to do with their time than listen to me blubber on about my diabetes.

However, I do expect that health care professionals will listen to me. I do expect that health care professionals will make me feel comfortable to open up to them. I do expect that health care professionals will look beyond what’s written on the charts and talk to me about what’s going on. I expect that health care professionals will show some empathy during consultations. And I expect that healthcare professionals will offer support and encouragement.

This is not a big ask. This can be done. Even on a busy clinic day. Even when time is limited. Even if you’re meeting me for the first time. Even if you are a general practitioner who is not a diabetes expert. Nobody has to be qualified to be supportive and empathetic, in my opinion. Above all, prioritising emotional wellbeing will assist diabetes healthcare professionals to better address the need for any further psychological support.

Emotional wellbeing helps me to see value in my diabetes healthcare team. It encourages me to continue to manage my diabetes to the best of my ability. A good experience motivates me to keep in touch with my diabetes healthcare professionals and to ensure I have my regular checkups. Above all, emotional well being has helped me to prioritise my health. It’s the difference between walking out of the doc’s office holding back tears, or with the biggest grin that I can’t wipe off my face.

Obviously, my endocrinologist and general practitioner are only individual pieces of the “emotional” support puzzle in my diabetes care. I have my wonderful diabetes educator, who has my undivided attention during every 60 minute session I have with her. I have my family at home, whom I have learned to lean on a little. There’s the wonderful Oz Diabetes Online Community, who I can hang out with on Twitter every Tuesday night. I have my soapbox right here at Type 1 Writes, where I can vent about any topic of my choosing. I also have some amazing d-peeps who I am lucky enough to call friends.

Three years ago, I certainly felt very alone with my diabetes.

Finding emotional wellbeing has helped me to embrace it.

Diabetes and Mental Health at #DX2Melbourne

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On Monday evening, the attendees at #DX2Melbourne took part in a live webcast discussing the emotional, psychological and mental elements of living with diabetes. The panel was joined by psychologist Lisa Robins, who has experience in diabetes clinical psychology. I was actually thrilled for the opportunity to address this topic at an event of this scale.

Again, I am only relaying what I heard and talked about as honestly as I can recall…

It was quite interesting to hear one member of the panel comment that during earlier times he thought he was doing okay, but looking back on his journey today he has second thoughts. I actually feel the same way. I never thought that it was okay not to be okay, or to consider the impact that type 1 diabetes can have on my mental and emotional wellbeing. Today, I have no hesitation in saying that I felt isolated, emotional, not very well supported and in hiding from my condition.

Who was offered psychological support when they were diagnosed? A quick show of hands from the panel indicated two or three out of eleven. I shared with the panel that I was visited by a social worker in hospital. At the time, I felt relieved to feel normal and energetic once again. I felt that she was pressing for something that wasn’t there. However, how great would it have been if she had:

  1. Taken my word that I was fine.
  2. Highlighted some of the symptoms that I might expect further down the road.
  3. Pointed me to what other people with diabetes are doing to feel well with diabetes – weekly OzDOC chats, Twitter accounts, closed Facebook groups, forums, in person meet ups and peer support.
  4. Left me her card if I did feel that I needed that professional support.

17 year old me would likely have still ignored it, but I digress…

How do we best approach the issue of mental health? It’s something many of us prefer to stay silent about, and treated like its something to be ashamed of. A lot of us like to prove that we are stronger than diabetes, and in doing so we might ignore our vulnerabilities.

The consensus from the panel was that our healthcare professionals don’t take the time to simply ask “how are you going?” in reference to emotional health. The panel suggested that we need to normalise psychological support within diabetes, building it into our annual checklist with our eyes and bloodwork and feet. I’d also add changing the word ‘health’ in mental health to ‘wellbeing’ or ‘wellness.’

I was also thrilled to hear other panel members praising informal peer support. One panel member shared that in the absence of psychological support, it was peer support that had aided her mental wellbeing for so long.

Personally, online communities were the first form of connection I had to anyone else with diabetes. There is so much knowledge out there that helped me to become better engaged in my diabetes management. Those communities were my bridge to finding in person peer support, both of which help me to maintain relatively good emotional wellbeing today.

Touching on the stigma from healthcare professionals associated with online communities, panel members commented that it was more accessible, and no different from going to a coffee shop. One gem was that online communities complement, rather than replace psychological support.

Diabetes burnout was the next topic, and the panel pondered ways of how we identify those triggers that might suggest we need to take a step further.

I did ask Lisa how well she thought our healthcare professionals would be able to pick up those triggers and refer to adequate support. She was very confident, especially in reference to a GP. My personal view is that the right healthcare professional would be able to identify those triggers, so it’s definitely important to shop around and have healthcare professionals on your team that are meeting your needs.

Instead of trying to fix everything, one gem from a panel member was to instead focus on one element that you can fix. When I’m feeling burned out I might turn off my phone for 12 hours, go outside to ease my mind or go to bed early so that I feel more rested. Take small steps.

Another panel member talked about diabetes as extra years thanks to modern medicine, and all of the wonderful things she’s been around to experience.

Without a doubt, this was the highlight of my time at DX2Melbourne, and a topic that really did need to be discussed. The live webcast will be available on demand in a couple of days, once the camera crew (yes, there was a crew filming us) processes it all together. I will keep you posted.

If you’re in Perth and would like to connect with other type 1s and learn more about mental health in a supportive environment, then I highly recommend that you come along to this event on Thursday, August 24.

Disclosures: Abbott covered my travel expenses from Perth to attend #DX2Melbourne. I was put up at The Blackman Hotel on Monday evening, and was fed and watered across the duration of the event. There was a lovely goodie bag with a FreeStyle Libre reader, two sensors and some branded stationery. There was no expectation that I would participate in this webcast if I did not wish to, nor was there any expectation that I would blog about the event at all!

Type 1, Turning 18 and Finding Peer Support

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I was lucky enough to be featured on the very awesome Diabetes Mine over the weekend, if you haven’t already caught up. I’d like to think my article also serves as a timely awareness piece for Australian National Diabetes Week, which kicked off yesterday.

So, is it somewhat easier being diagnosed with diabetes as an adult? Or would you rather be diagnosed at a younger age, where you won’t know life any differently? It’s one of the age old debates within the diabetes community.

I don’t subscribe to the notion that there is an easier option. Every diagnosis, at every stage of life, is uniquely challenging. While I’m certainly grateful for my adolescent years that were free from diabetes, receiving a type 1 diagnosis as a young adult presented it’s own set of challenges. Herein lies my story.

“I’m one of the privileged few who joined the “diagnosed-a-few-weeks-before-turning-18 club,” in terms of living with type 1. That was in 2010, and I was in the midst of a big transitional change in my life: had newfound independence, was midway into my first semester at university, was enthusiastically working my first real job, and driving around in my first car. There was a lot going on at the time, and when that T1 diagnosis came along, I don’t remember actually processing the meaning of my new illness all that much right away.

Needless to say, being diagnosed with T1D as a young adult presented a unique set of challenges.

For starters, nobody knew that I had diabetes. I didn’t grow up with it, didn’t go through school with it, and it wasn’t simply there for the world to see. I didn’t know life any other way, and went from carelessy eating potato crisps after school to having to think about what they would do to my blood sugar.”

You can check out the full article over at Diabetes Mine here, to help tide you through your Monday-itis. 

I know I’m going to need an extra coffee today…

T1 Talk: Managing the Unmanageable

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Welcome back to T1 Talk, a series of conversations between myself and Bec of Sweet and Sour Diabetes. We’ve started these conversations with the aim of highlighting how type 1 diabetes impacts two people of a similar age, who were diagnosed at slightly different stages of life. You can learn more about us in our first post here.

This T1 Talk is titled Managing the Unmanageable, and tackles the more technical side of management – from diabetes healthcare professionals to pens, pumps, fingersticks and CGMs. There are two parts to this T1 Talk. The first part is here, and the second part follows over on Bec’s blog at Sweet and Sour Diabetes.

The Australian health system is split into public healthcare and private healthcare. What do you use and why?

Frank: I began seeing a diabetes educator privately last year because I needed someone who had more time for me. The public system pushed me towards self management as soon as I was able, and diabetes education is something I genuinely missed for a few years there in the middle. I wanted someone consistent, someone who I could get to know and who I was able to contact inbetween appointments. I didn’t feel like the diabetes education I received in the hospital was personalised to my needs towards the end.

I see my allied healthcare professionals privately too, simply because it’s more convenient than going to the hospital.

I still see the endocrinologist publicly at the hospital. I feel like the endo is more strictly business. She refers me for all of my important check ups, reviews my hba1c and other pathology reports. I only tend to flag the more “medical” concerns with her. I’m happy seeing my endo publicly, and I don’t feel I could justify the cost of going private based on my experience here.

Bec: Your relationship with your CDE sounds brilliant!

When it comes to health system, I’ve sampled most of it. Currently my diabetes management primarily falls on two people, both private practitioners. My private endocrinologist is basically a whole healthcare team in one. She manages everything a diabetes educator would, as well as her usual endo role. This suits me really well and I feel very well supported in the private system. However, this was hard for me. I strongly believe in public health care being the best quality care. I believe you shouldn’t be able to pay more for better health care, it should just be a given. Unfortunately, the public system (whilst amazing as an early teen) was not the best fit for me as an adult. I see my allied health professionals in the public system, and everyone else privately.

Frank: Wow, the all in one sounds awesome. It sounds similar to endos I’ve read about in American blogs. It does sound expensive, though. 

Bec: It’s not too bad price wise considering it’s only once every 3 months. She’s very supportive by helping out between appointments via email, but I often feel guilty for asking for help when I’m not paying for it.

Describe the relationship you have with your Diabetes Educator and/or endocrinologist.

Frank: I see my diabetes educator once every three months. I’m pretty proactive with my management, so at the moment it’s more than enough. I’ve got her card and I know I’m welcome to call or email inbetween appointments if need be, which is comforting. It’s so good to have someone who dedicates that whole hour to you. She lets me steer the conversation, and I don’t feel pressured into anything I don’t agree with. I love that my educator also explores things like how I feel with my current level of management, or how I handle my diabetes around others. The price I pay is absolutely worth it.

Bec: I’ve always thought your educator sounded amazing. I remember mine at the kids hospital were brilliant. She sounds like she takes a real interest in your health overall, rather than focusing on just one part of diabetes.

My endocrinologist is quite business like and direct, but I like that about her. She understands my approach to my t1 and supports that, but she also tells me when to dial it back and give myself credit for what I AM doing for my management. She’s very contactable outside of the quarterly appointments via email which is very helpful for my management. I find that I’m not as self sufficient as you are Frank, and I need a bit of help working out what to do with my insulin rates. I think this might be because you’re not very self sufficient in the paediatric setting. I understand how everything works but still feel some hesitation making my own rate changes without confirming it with an endo. Plus, with work and uni and constant fluctuations in my sugars I need a helping hand to sort through the mess. So just like your educator, my endo is certainly worth paying for. I just don’t have the brain space to do it alone.

Frank: That’s fantastic. We’re under all this pressure as type 1s to constantly manage well, that along the way I think we lose sight of what an achievement this is in itself. So, I think it’s great that your endo gives you credit where it’s due. Basal rates are really tricky to work out, and obviously you need to allow time for them to kick in and sometimes it takes a lot of trial and error before you get them right. If you feel more comfortable making basal changes under the guidance of your endo, then I say good for you. I’m glad you feel supported in it.

What would you change about the system of healthcare in Australia?

Frank: Stop cutting resources in diabetes clinics! Stop pushing patients away! The number of patients in my diabetes clinic keeps growing, but over the years it seems the resources continue to be stretched thin. The wait time to see a diabetes educator is at least a month, and although I’m supposed to see the endo in 9 months, it will likely be closer to a year. Once upon a time, diabetes clinic was the only resource I relied upon to manage my diabetes. I couldn’t imagine where I would be today if I hadn’t diversified my investment chips into peers, websites, books, social media, private education and allied health professionals.

Bec: Excellent points there. So you see your endo less than once every 3 months? That makes sense considering the role your educator plays in your management. I agree that adult care needs to improve, which is something transition services such as Trapeze (a company I work for) is working toward. I left public health care because it just didn’t fit me or my needs.

The thing I would change is the idea that CGM is a luxury. It certainly is not. I can’t feel my hypos very much, and I tend to drop in my sleep. How anyone can consider an alarm system that keeps you alive a luxury is beyond me. Yes, it’s subsidised for those under 21 upon recommendation from their endo, but t1 has no age cut off. I’ve spent a lot of time contacting politicians to make a change. Just last week I sent a letter to my local member to bring the issue up again. Probably not effective, but at least I’m trying to do something about it.

Frank: I feel so guilty to whinge about CGM considering how lucky we are here in Australia, but yes I wish they were more accessible to me. While I’m so happy for the kids who will get one subsidised, I feel like our government has simply forgotten about the rest of us with type 1. I worry so much about going hypo unaware. I go through tonnes of test strips. I usually set an alarm midway through the night, just to make sure things are sitting steady. Good on you for doing something about it, I still haven’t gotten around to contacting my local MP.

Head on over to Bec’s blog at Sweet and Sour Diabetes to read the second part of this T1 Talk. We delve into pens versus pumps, fingersticks versus CGMs, and the challenges of making changes in our management. Catch you there!

Cheers to Two Years!

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*blows shortbread crumbs off the keyboard*

Happy New Year!

I can’t help but feel like saying “WE MADE IT!”

We made it to the finish line of 2016, with a New Year and the promise of a fresh start ahead of us.

I hope you had a wonderful festive season, and hopefully some time out to recharge the batteries. With the reality of heading back to work tomorrow starting to sink in, the festive season is well and truly over for another year.

This little corner of the internet also happened to mark its second birthday last week. It’s been two years since I began blogging here at Type 1 Writes, and since I first entered into the fray that is the Diabetes Online Community.

As often as I am thanked for my blog and it’s helpfulness, I’ve needed this space just as much as you. This space started out as the pet project of a university graduate, and I never really knew what would become of it.

I struggled with managing a very demanding and isolating condition that is type 1 diabetes. I wasn’t satisfied with the state of my management, but I lacked the knowledge and motivation to do all of the things that added up half decent blood sugar levels.

The past two years have brought a wave of peer support, knowledge, learning, inspiration, empowerment and “me toos.” Although diabetes is an impossible condition to manage at the best of times, I feel I have a far better idea of how to tame it than I once did.

I really owe it to all of you.

The supportive comments that have come from my blog posts. The conversations that happen on Twitter. The support from people on my own Facebook page who I didn’t think would care less about diabetes. The e-mails that arrive from the contact page on my blog. Your articles and blog posts that provide me with insights and inspiration to apply to my own diabetes management. To those of you who are kind enough to check in when my blog is quiet. To my family at home who I couldn’t have done this, and diabetes, without.

2 years, 313 posts, 1,110 comments, 5,000 odd tweets, 100 or so OzDOC chats, and thousands of coffees later, I can’t thank you enough for the past two years.

Having diabetes absolutely sucks, but you guys make it suck just a little bit less.

Scruffy and I wish you nothing but the best for 2017. Make it a good one, friends.

(P.S. Scruffy, I’m still waiting for that guest post you were going to write for me months ago…)

Cheers to two years!

 – Frank