“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”
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.
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:
- Taken my word that I was fine.
- Highlighted some of the symptoms that I might expect further down the road.
- 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.
- 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!
Last night’s OzDOC chat on diabetes disruptions really put my mind to work. I can’t say that I think of diabetes as being disruptive all that often. Yet as I began to answer some of the chat questions, it became pretty clear to me that it was. Diabetes is disruptive. It’s disruptive to my day, it’s disruptive to my mindset and it’s disruptive to the people around me.
One disruption that easily comes to mind is the time I have previously wasted, obsessing over what I need to bring with me every time I leave the house. I tend to overthink things quite a bit, especially with the more time that I have up my sleeve.
How long will I be gone? How far away from home will I be? Am I going to be comfortable at the party with all of this crap weighing me down? Do I really need all the stuff I have brought with me?
I’ll spend far too much time tucking things into pockets and jackets, only to pull them out once again. Thankfully I now have my grey marle pencil case, with all my travel gear ready to go every time I head out.
Another disruption that comes to mind is the people around me. I am too nice of a person. While I don’t particularly feel the need to explain myself, I do feel conscious of the fact that I might not be polite to others. Like trying to find the right moment to excuse myself and walk away from someone who is talking to me.
Then there are days where diabetes puts a damper on my mood. Or I’m not having the best day, and having to deal with diabetes on top of it simply makes it worse. I’m more quiet, withdrawn, and probably don’t do my best at explaining this to the people around me. But I feel ridden with guilt for it afterwards.
I’m also really conscious of the perception toward diabetes that I’m feeding to others through my actions. I don’t want people to think that I’m ill or unwell. I’m quick to deflect people’s looks of pity with confident explanation of what I do to myself to manage. Okay, cutting the queue at Pathology yesterday probably didn’t help my cause, but you can’t live with this lousy condition without the occasional perk…
The one disruption that I would easily wish away is a low blood sugar. Correcting a high is easy enough. I’m pretty confident in my ability to keep tabs on pump failures and ketones. Yet a nasty low is enough to knock me sideways. It frustrates me that I can’t even go for a walk around the block without having to worry about going low.
While diabetes will continue to be disruptive in every which way that it pleases, always remember that you most certainly are not.
“Can I get my hba1c done?” I asked my diabetes educator, the minute I walked through the door.
“I’ll go get the kit.”
I waited for what felt like forever, my attention shifting from a wall clock identical to those in my high school, to a weary poster from the 90s shouting reduced risks of cardiovascular diseases for every 1% drop in my hba1c.
As I sat there, exhausted after a full on day and a week of rollercoaster blood sugar levels, I wondered what my hba1c might look like. I hadn’t set the bar very high for myself. I was convinced I wouldn’t be anywhere close to my personal goal. I’d be lucky just to clear the 7% mark, at best.
Even though we say all the time that we are more than just numbers, it’s so freaking hard not to feel defined by one. Every day, I wake up to numbers. I make decisions based on numbers. I over-analyse numbers. I feel frustration over numbers. My long term health is dependent on the numbers. Numbers are the very last thing I see, before I go to bed at night.
I’d be lying if I said that my last hba1c hadn’t been hanging over my head since August. I’ve poured my blood, sweat and tears into my numbers over the past few months. But as my diabetes educator made her return to the room, I was about to learn that all of that effort had paid off.
“You’re joking!” I exclaimed.
“I can’t believe it!” I said to myself, leaning back and shooting both my arms up into the air in victory.
The feeling was indescribable.
Not only had I bested my personal goal, but I had clocked in over a point lower than August, and had set a new personal best.
I felt a million miles lighter. I felt like a weight had been lifted off of my shoulders. I felt like I was sitting on top of the world. I felt free.
I couldn’t wipe the grin off my face as I stepped out into the mild, sunny November afternoon. As I made my way down Hospital Avenue and back to my car, I kept repeating my new a1c over and over in my head.
I made a pit stop at San Churros on the way home for a Spanish White Hot Chocolate. A big plate of Connoisseur Belgian Chocolate Ice Cream followed when I arrived home, as I eagerly told my family the news.
I felt proud. I had fought a gruelling battle to regain some form of control over my blood sugar levels in the past year, and I had come out on the other side stronger than ever.
In that moment, I had won.