“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.”
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!
Welcome back to T1 Talk, a series of conversations between myself and Bec of Sweet and Sour Diabetes. The aim of these conversations is to highlight how type 1 diabetes affects two people of a similar age, diagnosed at slightly different stages of life (Bec was a 14 year old high school student, I was a 17 year old freshman uni student).
Haven’t caught up yet?
Today, we’re tackling the not so technical side of our management – namely food, exercise and emotions. The first half of the chat is here, and the second half follows on Bec’s blog here.
In order to remain healthy, people with and without diabetes often consider food as a fundamental part of maintaining their wellbeing. What are your views on nutrition? How do you include this in your management?
Frank: Food is a really tough one for me. Being Italian, there’s a pretty big emphasis on food. It’s ingrained into our culture. If I don’t eat, my parents notice pretty quickly. If they didn’t see me prepare lunch this morning, they will ask me what I ate. When I go to visit Nonna, it’s almost expected that I’ll have an espresso and biscotti. When we hosted Mum’s family for Easter this year, I spent three days trying to reassure her she had prepared more than enough food.
I love food, and we do have some of the best. Pasta, cannoli, amaretti, cottolette, lasagne….I could go on for days. However, we are talking about diabetes here.
I feel that I eat fairly well. I prepare my own breakfast and lunch most days, and we usually have a cooked meal in the evenings. I drink three milky coffees a day, and usually find myself most peckish in the afternoons and caving in to my sweet tooth.
While nothing is off limits for me, diabetes has certainly made me more mindful of what I’m eating. I’ve cut back on a lot of the sugar laden foods I once ate – cereals, muesli bars, stir through yoghurt pots, and the sugar in my tea and coffee – as well as foods that I realised I didn’t truly enjoy. I am more mindful of the carbs I eat today, and try to balance them out with proteins, fruit and veggies. I would typically eat between 100-150g of carbs a day, which is less than what’s recommended but certainly not low carb.
I feel I have a pretty good idea of what different foods will do to my blood sugars. I’m quite diligent with my carb counting at home, and weigh most of my food on kitchen scales. Even if I don’t know the carb content, simply weighing the cookie and guessing a carb factor of 60% is extremely helpful. I try to pre-bolus by 15-20 minutes if I’m having a higher carb or higher GI meal, but I don’t do this all the time. If I’m having a bit of a cruisier day of eating, I’ll simply set a temp basal rate of 100% on my pump to help me cruise through a little easier.
Bec: I think the idea of tying food into culture is actually lovely, and I definitely don’t experience it. In some ways that’s a good thing considering I’m gluten intolerant and a lot of things would be off the menu if I were Italian!
Eating isn’t my favourite thing. I get a lot of strange looks for this, but I don’t get particularly hungry. I wish I could live off tea and coffee. It’s just a long boring task for me to find something to eat that’s gluten free, work out the carbs, take the insulin and then eat it. That being said there are some foods I actually do enjoy eating, like chocolate, cake, thai food, and risotto.
I think I have the same goal of being a little more organised. I need to increase my carb intake for medical reasons, but it’s hard when you’re not hungry. I also don’t think about food very much in terms of GI and what it does to my sugars. For now though, I’m just focusing on 1) increasing my intake and 2) attempting to count carbs accurately.
Frank: I feel like this gif is relevant in response to eating not being your favourite thing…
Well, I could easily live off coffee (decent coffee, of course), so at least we have some common ground there.
I want to say that maybe you just haven’t found enough of those foods that you enjoy. Keep searching! You don’t need to be European or have a big family to tie food into culture, either. Does your family not have a special dish that brings you together? A meal that you all simply rave about?
Bec: That gif perfectly represents everyone’s thoughts, often followed by measuring the circumference of my wrist…
Well, Mum’s Christmas lunch is pretty great but unfortunately only occurs once a year. My Nan used to make an amazing meal fondly named porcupine rissoles which no one has since replicated to perfection. But hey, I’m always keen to try new food to find something I actually enjoy.
What are your views on exercise?
Frank: I’ve never been the biggest sports person, and that dates back to well before diabetes came along. Our culture has too much of an emphasis on sport and on winning, rather than on just having a good time and doing what makes us happy. I never felt comfortable or encouraged playing sport because I wasn’t the best, while being on the debating team in Year 10 earned me a great deal of sniggers.
Most of my physical activity would be incidental or recreational activity. Fortunately my job as a Warehouse attendant keeps me fairly active. I do dread the day that I get a job sitting behind a desk, because then I’ll probably have to start doing some form of exercise. I also enjoy going for walks in the afternoon, and keeping this little man entertained when he comes to stay with us.
Bec: Ugh. Exercise. I get it to an extent, when I go on walks I do get that adrenalin rush, and it is a good way of staying present. But organised sport is a recipe for disaster. I hated it because I wasn’t perfect at it. You might have gotten sniggers for debating, but I WISH I could have done that at school! It was just so sport focused the only outlet I had was choir (a sequined experience involving dodgy dance moves that I’d rather forget).
I agree we are heavily focused on sport as a culture. I don’t mind it in some ways, after all I do follow the NRL off and on. But it’s not a core part of my life. I also agree that it’s important not to be so focused on winning. It has no appeal to me because I’m too uncoordinated to be perfect at it. Really though, perhaps I should be thinking about shifting the focus off perfect and on to fun.
But taking it back to diabetes, exercise makes me hypo. Very hypo. But I try to keep up the walking in spite of it, because I don’t have as much incidental exercise as I would like. Then again, I make up for it on hospital placements. So. Many. Stairs.
Aw, you certainly have a good motivator there! How can you resist walking that little guy?
Frank: I’ll never truly understand how Australia came to have two different footy codes. Clearly, AFL is where it’s at. I had my hopes up for Freo a few years back, but it’s looking very unlikely nowadays…
Urgh. Exercise hypos. Such a pain, moreso with the insulin pump. You even have to remember to adjust your basal rate for housework!
I’d be keen to hear more about managing diabetes on placement…would make a great blog post.
I’ll never forget the social worker who came to visit me in hospital, a few short days after my diagnosis. She asked me if I was feeling anything in particular after my diagnosis. Angry? Depressed? Wanting to talk? She even asked if Mum and Dad needed to leave the room. I had to convince her that I was feeling fine, as she didn’t seem to want to believe me.
It still frustrates me today that this was the way that these emotional issues were dealt with.
Having the social worker come in like that made me feel isolated. Her presence, and her questions that day were based on assumptions that I did not appreciate. I didn’t feel like a normal patient. It didn’t make these issues feel normal. Even if I was feeling something that day, I certainly didn’t feel comfortable discussing it in front of a stranger who thought she knew me.
What really frustrates me, is the fact that I had been surrounded by medical professionals for days in the hospital. Doctors, nurses, dieticians, specialists. Yet I can’t recall one of them asking me how I was. I don’t mean my blood glucose levels. Or the hospital food. Or why I didn’t eat my white bread sandwich before bed. I mean how I was feeling after a diagnosis with a condition that would affect me for the rest of my life.
The healthcare professionals I was surrounded by at the time were the ones I felt most comfortable around. While I certainly don’t expect them to fill the role of a counsellor or a friend, I don’t think it’s too much to ask them to look at the whole patient. To simply ask something like “how’s it all going.” To show some empathy, where necessary. To help me feel normal, and understood. Sometimes, that’s all we need. Other times, they can help us find greater support.
During last Tuesday’s OzDOC chat, there was a debate over whether patients felt that they were on the same level as a healthcare professional during consultations. I believe that this is a very individual issue, that comes down to both the patient and the healthcare professional.
Some patients contribute to feeling on the same level as a healthcare professional. They are very motivated, switched on, and not afraid to speak up or search for what they want. However we are all different, and not everyone is as vocal in nature.
This is where it is the responsibility of a healthcare professional to make the patient feel on the same level. Some healthcare professionals I have encountered certainly don’t seem to live in the real world where day to day management of diabetes is concerned. Some lack the ability to look beyond what’s written in the charts for an explanation.
Yet other healthcare professionals are able to discuss diabetes management in a very supportive and constructive manner. They are able to motivate the patient and praise their self management behaviours. They are able to see the whole patient.
When emotional wellbeing is prioritised in my diabetes care, I feel motivated to improve on what is contained in my chart. My healthcare professional only needs to put down that chart for a moment, and take a look at the whole patient sitting in front of it.
I’ve written a great deal about the need for more “emotional” support from diabetes healthcare professionals.
In my humble experience, I often felt a lack of emotional support from my endocrinologist and my doctor. 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, which you can read about here. Meanwhile, my general practitioner often told me that “my sugar levels are too high” without actually offering anything more substantial or helpful.
I’m amazed at the amount of “smart” comments that I receive, with suggestions that I should find a counsellor every time write about these issues. Comments like these always leave me second guessing myself. Am I too vulnerable? Over emotional? An attention seeker? A basket case? A person who shouldn’t be blogging?
So, it was really fantastic to see that psychologist Marisa Hilliard dedicated a session at the World Diabetes Congress in Vancouver last week to this very issue: diabetes healthcare professionals prioritising emotional wellbeing. I was also honoured that this post of mine was quoted in her presentation.
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.
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, Gwen, who has my undivided attention during every 60 minute session I have with her. I have my family at home, whom I have a newfound appreciation for in my diabetes care. I know that they are cheering me on every step of the way, even if they don’t have diabetes themselves.
I’ve also discovered the amazing Diabetes Online Community through blogging this year, who have come through for me in more ways than you would imagine. I can tweet something at 2am in the morning and instantly receive words of encouragement and advice. I have the wonderful Oz Diabetes Online Community who I can hang out with on Twitter every Tuesday night. I look forward to my coffee break every single morning, when I can sit back and check in with the Diabetes Online Community on Twitter.
I also have all of you who cheer me on through your support of this blog.
A year ago, I certainly felt very alone with my diabetes.
Finding emotional wellbeing has helped me to embrace it.