Peer Support

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…

Type 1 Event: Relationships, Partying and Life

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I don’t know about you, but I’ve always felt that there’s a bit of a gap in terms of the support available when you’re a young adult living with diabetes.

Here in Perth, kids and families are really well catered for by the Telethon Type 1 Diabetes Family Centre, Diabetes WA and Princess Margaret Children’s Hospital. Diabetes WA run a cycle of programs for adults, but they seem to skew towards an older crowd. And I can only watch on with envy at some of the awesome things happening in the diabetes space in other parts of the world.

Earlier this year I met with a group of young adults with diabetes, and from there the Perth Diabetes Care Youth Advisory Committee came to life. Basically, we’re a group of young adults with diabetes, trying to fill the unmet needs of young adults living with diabetes in Perth.

If you’re in Perth and have type 1 diabetes, we are holding the second in a series of type 1 themed events on Thursday June 22.

The theme of this event is Relationships, Partying and Life. Nikki, a member of our committee, will be our personal speaker for the night. Dr Martin DeBock, an endocrinologist and researcher at the Telethon Institute, will also be speaking about his latest research in the areas of relationships, intimacy and diabetes.

Events like these are simply a great opportunity to hear other perspectives on living with type 1 and mix with other people who have diabetes.

All the details are below, and if you have any questions feel free to leave a comment or get in touch through my contact page.

Hope to see you there!