Diabetes Musings

A few days ago, I stumbled across this article that really spoke to me (even if it did fall short of acknowledging that these outcomes are equally likely to affect people with type 2 diabetes). It was equally refreshing to see photos of real people with diabetes rather than the usual cringeworthy stock photos, one of whom was even sporting a t:slim.

The point that really hit home for me was that people with diabetes are often seen to lack control or ability to properly care for ourselves. Food police, which are an unfortunate reality of living with diabetes, are quick to judge when they see you reaching for that donut at morning tea.

I’ll go as far as to suggest that very few interactions around food have supported me, as a person living with diabetes. Things like being asked at the dinner table what my levels have been like, if I have to be ‘careful,’ or even being told that certain food choices are ‘not good for diabetes.’ Bonus points if you can say it nice and loudly and turn it into a punchline.

In the diabetes community, we are passionate about so many different ways of eating. Sadly, we’re not very good at embracing all of these different ways. I think this is really hurtful, especially for the newly diagnosed who may feel that there is only one right way of eating. Unfortunately, many in the community add to the stigma around food by demonising some ways of eating at the expense of pushing others.

There is so much stigma around food when you live with diabetes. Conversations around diabetes and food have always been ill-timed, demoralising and left me feeling small. Coming off of National Diabetes Week, it definitely takes a toll on your mental health.

I know I’m not supposed to care about what other people think, but the overarching feeling is that others don’t think I’m taking care of myself. Language Matters. The words we use, and the attitudes we convey – they become reality. That in turn leaves me feeling like I’m not taking good care of myself.

I continually find it frustrating that so many of my peers only seem to acknowledge that I’m living with diabetes when it’s dessert time. Food police do a terrible injustice to the realities of living with diabetes 24 hours a day, 7 days a week, 365 days of the year. They’re ignorant to the fact that living with diabetes stretches a lot further than the dessert table. It’s a life of blood glucose monitoring, insulin administration, decision making, carefully planned activities and mental burden. So much mental burden.

I’m not actively looking for a pat on the back, but living with diabetes is largely invisible to the people without diabetes in my life. When the people around me don’t often get to see all of the aspects that there are to living with diabetes, it gets lonely. It genuinely is nice to be engaged in real conversations around diabetes from people without diabetes, because it gives me that little bit of acknowledgement. I feel that little bit less invisible.

So, talk to me about my diabetes. I’m always happy to help spread a bit of awareness.

But know that it is never okay to comment on the food choices of another person – diabetes or not.

When was mental health, if ever, addressed in a healthcare setting throughout your diabetes journey? As I was listening to some of the panelists answer this question during Diabetes Australia’s Facebook livestream last night, I was reminded of my own experience.

I was visited by a social worker in hospital, a few days after I was diagnosed. At the time, I was actually feeling pretty good just to be relieved of my DKA symptoms – which included weeks of general exhaustion. I think I was pretty naive to the lifelong task of living with type 1 diabetes that was ahead of me. Not to mention the challenges to mental and emotional wellbeing that living with diabetes entails. I was left with a card that day in hospital, which I never ended up using.

In hindsight, support for my mental wellbeing would have been great a little further on into my journey. When I began undertaking diabetes education sessions, and learning just what it was like to live with diabetes. The frustration that came from doing things by the textbook, and not seeing the results on my blood glucose meter. The feelings of isolation that arose from watching friends go out partying and abusing their bodies as they all turned 18 and I couldn’t. The overarching feeling that nobody around me could ever truly comprehend just what I had to live with.

Mental wellbeing should be at the forefront of every encounter with a healthcare professional. It doesn’t have to be any fancy or overbearing effort. I just want an environment where I feel comfortable to talk and be honest about how I’m feeling and what I’m doing. That’s what I’ve learned to seek out from my healthcare professionals in more recent years. It’s also meant walking away from those who aren’t supporting me in the way that I need.

How do we create that environment? Address the whole person, and not just the person’s diabetes. ‘How are you going?’ goes a long way. Language matters. Use words and convey attitudes that are going to engage us and support us in our self management efforts. Don’t judge us. Because equally, the wrong choice of words can hurt us and sabotage those good efforts and turn us away from the support that we really do need.

Finding peer support from other people with diabetes in the Diabetes Online Community has also been a massive contributor to my mental wellbeing. It wasn’t until I began connecting with other PWD that I truly began to accept and feel more comfortable about living with diabetes. While peer support took me a long time to find, I truly think this is changing if what I am seeing in my communities are anything to go by.

Finally, over the years I’ve learned that living with diabetes means that I need to make the extra effort to take care of myself. That means little things like resting when I’m feeling exhausted. Being kind to myself when I’m having a rubbish diabetes day, and reminding myself of all of the good things I’m doing. Taking some time out for myself to do the things I love – a good TV show, some time outside in the sun or making myself something good to eat. Learning to lean on the people around me when I need to.

Because at the end of the day, I am more than just my diabetes.

Once again, it’s National Diabetes Week here in Australia – and I really encourage you to check out Diabetes Australia’s campaign that shines a light on diabetes and mental health – www.headsupdiabetes.com.au.

I absolutely love these videos released by Diabetes Australia for National Diabetes Week. They capture, dare I say beautifully, the realities of living with diabetes and its invisible impact on mental health.

The biggest misconception about diabetes is that you become unwell, you receive a diagnosis, and then you get better.

It’s easy to see it that way.

People don’t tend to see the marks on the tips of my fingers, the chalky orange powder on my tongue, or the pump sites hidden underneath my shirt. They don’t see the pager in my pocket, the thousands of thoughts racing through my head, or the life saving stash of insulin in my fridge.

When I look back on my own journey, I concur that I’ve come a long way from where I was in the beginning. I feel more informed, more connected, more supported and am managing in the way that I have decided truly works best for me. Plus, I have an additional decade of experience under my belt than I did back then.

While all of these incredible things have made my life with diabetes so much better, they don’t make diabetes itself ‘better.’ Diabetes doesn’t go away, even if you don’t see it. As much I love to shout to the world about all of the incredible things that have enriched my life with diabetes, it’s not without its challenges.

Diabetes still affects me.

There are days where I feel like I am flying high and could do absolutely anything. This weekend, for example. An amazing, sunny weekend where I drove myself down to the beach, cleaned out the inside of my car, ran some errands, finished my book, made zucchini slice and jelly crystal cookies.

Equally, there are days where I can really feel the weight of trying to manage diabetes in amongst the remainder of my life. A mere few weeks ago, I was juggling my day job while spending long hours revising for my uni exams. Which were on a computer, in the middle of a pandemic. On my last day at work before a much needed break, I was feeling exhausted, moody and withdrawn from everyone around me.

Over the years, I truly feel as though I’ve poured both the ups and the downs of life with diabetes onto the pages of this blog. Some feel there’s too much doom and gloom in diabetes narratives – and can’t relate to some of the things I’ve written about. Many of you have also provided amazing support when I’ve written about the tough times.

But the truth is, I don’t do it for the feedback good or bad. I just know that it’s something that I want to see in the narrative about diabetes.

This is our week to scream diabetes awareness out of every corner that we possibly can. If you don’t have diabetes, this is your week to listen to and amplify the voices of people with diabetes. This year’s theme is diabetes and mental health, and it’s definitely a topic that is worthy of more attention. Especially now, more than ever, given the times that we live in.

Keep an eye on Diabetes Australia’s socials for details of what’s happening this week. In particular, there’s a livestream discussion happening on Wednesday night at 7.30pm AEST on the Diabetes Australia Facebook page.

Happy National Diabetes Week.

I’ve been keeping my eyes peeled to the ABC news app on my phone for the past couple of weeks, watching the growing count of Coronavirus cases unfold in Victoria. I knew I wasn’t alone in my insecurities and increased need for information, as the ABC’s daily live blog has returned.

I’ve been shouting at my phone every time I read a story about very irresponsible people jumping on planes to Sydney, rushing to restaurants ahead of lockdowns, flocking to state borders ahead of closures or complaining of being inconvenienced. Don’t even bother trying to tell me that it’s just going to be like getting a cold – I’m not going to take any chances.

It’s this complacency that makes me anxious. Last week I walked past elderly people who were hugging and kissing as if this was all over. People have been coming into work when they’ve been unwell, including one who was tested for Coronavirus. There are TV commercials congratulating Western Australia on our good work, seemingly implying that this is over. I’m absolutely dreading the day that Western Australia’s hard border is lifted and interstate travellers are allowed inside my safe little bubble. I do fear that many people aren’t taking this seriously enough, and that what’s happened in Victoria could happen anywhere in Australia.

I must admit that in the past couple of days, I’ve checked up on my wardrobe to make sure I have enough diabetes gear on hand (responsibly, of course). I’m down to my second last box of insulin, and went to get a fresh script filled on Monday night. I’ve given thought to how I might handle a situation like the one over east, even re-evaluating how effectively I navigated our own restrictions earlier this year.

Thankfully, life here in Western Australia has relatively returned to normal. I do feel relatively safe getting out and about, and it is nice to see people around. We are extremely lucky that our cases are now only coming from returned travellers in mandatory hotel quarantine, and not in the community.

I’ve gone out to eat with the family once since restrictions have been eased. I caught up with a friend at a cafe last weekend. I’ve visited shopping centres. I’ve bought lunches and coffees. Generally trying to get outside as much as possible, because you do need to try a lot harder to find the sun in the middle of Winter.

However, I’m not for a second becoming complacent.

I’m still doing all of the things that I began doing when this pandemic started. Like washing my water bottle each week, and not being slack. Bringing my own tea towel and sponge to use at work. Washing my hands before I got to eat – even if I only washed them ten minutes ago. Trying not to directly touch glucose tabs when I need to reach for them, or better yet washing my hands beforehand. Keeping my distance from people, and refraining from activities that I don’t feel comfortable with.

I think it will be a long time before I will even consider jumping on a plane, visiting a crowded venue or sitting in an exam room – even if our government tells us that it is safe to do so.

For the time being, I’m more than happy right here, close to home.