Prioritising Emotional Wellbeing in Diabetes Care

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.

“Type 1 Diabetes. Fasting.”

In times gone by, I would have hauled myself out of bed on a cold Winter’s morning much earlier than my liking. Blood sugar permitting, I would have dressed and made my way out the door while it was still dark outside. I would have started my car, and made the two minute drive down the road to my local Pathology centre. Despite walking in thirty minutes before collections begin, the first number available to me would likely have been a 4 or a 5.

I would have taken a seat and rolled my eyes at the table of ancient, frayed magazines. I would have pulled my phone out of my pocket and opened up Facebook. I would have checked the current temperature outside in my trusty Weatherzone app. I probably would have been distracted momentarily by the Sunrise Cash Cow on the TV in the waiting room. I would have returned to my phone, this time moving onto Twitter. I would likely have returned to the weather, refreshing to see if it were any warmer outside. Once again, the TV would likely grasp my attention at the sight of the weather man out and about doing something silly. Returning to my phone, I’d open up the next app.

By this point, I’d be bored out of my brains. My empty stomach would be growling like crazy. To add to the torture, the coffee bar that was thoughtfully placed in a waiting room of fasting patients, would have opened for the day. I’d watch on as people flocked to it in droves for their morning caffeine fix, and forcing their banter upon my poor ears. I’d be constantly looking at my watch, despite the time being right in front of me on my iPhone screen. I’d start taking note of how many people were in front of me. I’d start wondering if number 3 was in there, telling the nurse their whole life story while I was desperately wanting to get out of there and start my day.

Thankfully, today was not the case.

I stayed in my warm bed until an hour of my choosing. I got dressed, and walked out the door into brilliant grey daylight. I drove down to Pathology, walked in and made my way to the counter where I announced:

I’m here for a blood test. I have type 1 diabetes and I’m fasting.”

This morning there were no frayed mags, no coffee bar torture, no endless scrolling through Facebook, no stomach rumbling and no eye rolling at the Sunrise weather man. I walked straight through, waited for the two patients already in the room, and had my bloods done straight away.

I probably fed the attendant’s misconceptions about a diabetic needing to constantly eat to regulate his blood sugars. I probably felt a tinge of guilt for the other poor souls sitting there in the waiting room. 

But those people also didn’t have a broken pancreas to deal with. They weren’t course correcting a lower-than-they’d-like blood sugar before bed. They didn’t have to force themselves up to check their blood sugar when they stirred in their sleep at 4am this morning. They weren’t left scratching their head over why their blood sugar had risen from 5.4 to 8.8 in a few hours, when normally it sits stable.

I played the diabetes card today, and I’m not going to feel guilty for it.

The Cost of a Chronic Illness


Its day 2 of the eighth annual Diabetes Blog Week. The idea is that bloggers sign up to write about a set topic each day for a week, and readers can get a variety of different perspectives on the one topic. Here is today’s prompt:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

The cost of having diabetes sure does add up. Over the years, I’ve definitely felt envious of my peers who get to spend their money on having a good time and living like there’s no tomorrow.

But if I have to have diabetes, then there’s no place I’d rather have it than in Australia. My own diabetes care has been relatively accessible and affordable. I am not judged based on my income or socio-economic status. I have never struggled to make ends meet. I have a stable job and a supportive family around me. However, I do expect that there are still many in Australia who would still find it hard to make ends meet.

Insulin is heavily subsidised through Medicare and the Pharmaceutical Benefits Scheme, costing me approximately $35 for 5 boxes of Novorapid insulin.

Test strips, needles and insulin pump consumables are heavily subsidised through the National Diabetes Services Scheme, which is an initiative of the Australian government. I would pay around $16 for a box of 100 test strips and a box of 10 infusion sets for my insulin pump. Needles are free.

My diabetes healthcare is completely free through the diabetes clinic at my public hospital. I have access to a diabetes educator, dietitian and endocrinologist, the latter of whom refers me to any other healthcare professional in the hospital that my diabetes desires.

I’m also fortunate enough to be able to afford a private health insurance policy, which costs me approximately a week’s wage. This covers the costs of any hospital care, and I get benefits on things like dental and optical services. As someone with diabetes, a private health insurance policy will also cover the cost of an insulin pump – something I would definitely not have access to without insurance.

I feel that the biggest barrier to my diabetes care would be the quality of care I have received over the years. Although the public system is free, it doesn’t mean that it’s necessarily great. Busy public hospitals just didn’t have the time for me, especially when there were young children and families who understandably needed it more. I was pushed towards self management after about a year, not knowing any better. In retrospect, not having the support of a diabetes educator from years 2-5 were really detrimental to me. I was unmotivated. I felt isolated, and my diabetes felt unmanageable.

When I jumped online and found the Diabetes Online Community in 2015, I started feeling less “conscious” of my diabetes. I developed an interest in it. I eventually got back in touch with my diabetes team and started on insulin pump therapy, which quite honestly changed my life. I found the motivation to learn and more actively manage my diabetes. Last year I began seeing a private diabetes educator, who now gives me all of the time and support I need. Today, I call myself an advocate, dedicating my spare time towards something I am really passionate about.

I wasn’t always comfortable with my condition. I wasn’t always motivated to self manage, and speak up for what I wanted. I wish a healthcare professional encouraged me to jump online. I wish a healthcare professional had suggested an insulin pump to me. I wish a healthcare professional had encouraged me to seek out peer support. I feel like there are a lot of people out there who are in that place where I once was, just waiting for the front porch light to switch on.

To read other responses to today’s prompt, click here.

A New Addition to Team Frank

“What else has happened in your life since diabetes came along?”

“How comfortable are you when you pull out your insulin pump or prick your finger?”

“What concerns you the most about living with diabetes?”

These were just some of the ice breakers as I sat down with a woman who I hoped I would be able to call my new diabetes educator, in a private clinic last week.

After six years of diabetes care in a public hospital, this was a completely different experience. My diabetes clinic-that-wasn’t-technically-a-clinic was situated behind the corner pharmacy store on a quiet inner city street, rather than a bustling hospital campus. My session was in a room on the ground floor, with an open window looking out into the yard behind the building. There was no sense of urgency, nor did I feel that my appointment was being rushed. There were no interruptions throughout the whole hour. I was being spoken to like a person who had diabetes, rather than the diabetes patient. The place certainly didn’t feel super clinic-y, either. Everything just added up to a nice, casual vibe. 

We looked over my diasend uploads, and straight away she picked up on trends of red numbers on weekends. Something my diabetes brain probably should have picked up on sooner. I admitted to cruizy days of weekend eating that were often triggered after a 10am hypo, and she helped me nut out a strategy to continue to cruise through and see a little more green.

I wasn’t really swayed one way or another as I talked through my diabetes management, either, and I wasn’t sure if this was a good or a bad thing. I suppose, like this decision, it was mine. It was diabetes on my terms. No judgement.

As we approached the end of the hour, I was asked how I wanted to proceed after today. I knew how I wanted to proceed. Yet I still hesitated for a moment.

I had spent the whole hour talking over my diabetes management so confidently. The numbers on my diasend report were pretty good, overall. I had reached the hba1c goal I had set myself at the beginning of the year. This session reassured to me how proactive I am in being able to manage my diabetes. Did I need to be here?

After being pushed towards self management for so long at the hospital, it felt strange to have the option there. After all the time constraints of the busy diabetes clinic, it felt super weird to have the choice of when my next appointment would be. I was paying for it, of course. But it still felt strange.

I’ve decided I want a three month catch up with my diabetes educator. As good as I may be, I still need that reassurance. I need that fresh set of eyes that can pick up things that my diabetes brain cannot. I’ll continue to see the endocrinologist at the hospital, and get referrals for all of my important check ups there. Most importantly, I’ve got someone to touch base with inbetween. If the need arises, I’ll be able to call or e-mail, and make appointments inbetween. I already rest a lot easier at night knowing that I have someone reliable at the ready.

Two years ago, I doubt I would’ve had the confidence to be able to identify my needs, to speak up for what I wanted, or to go through with such a big decision.

Today, I’m confident that this is one of the best decisions I’ve made for my diabetes care. With a new addition, Team Frank feels stronger than ever.