Diabetes Advocacy

Diabetic is a Label. Diabetes Describes Me.

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“Make sure you take your travel letter that says you’re a diabetic,” Mum reminded me yesterday afternoon.

Mum has used the word “diabetic” a few times lately in reference to my insulin pump day and an upcoming trip, and it’s kind of been bugging me. Until yesterday, when I finally felt the urge to correct her.

“I’m not a diabetic,” I replied. “I’m a person with diabetes.”

“What’s the difference?” Mum asked.

“Diabetic is a label.” I paused, trying to summon more words.

“Come on, explain yourself.”

I was in the process of swallowing a mouthful of coffee. Feeling the pressure to answer, I choked. I jumped out of my chair and raced over to the lawn, where I could safely clear my throat and the excess coffee in my mouth.

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“I don’t use the word ‘diabetic’ on my blog. I say person with diabetes. Diabetic is a label, whereas diabetes is a word that describes me. I wouldn’t call you ‘cancer’ or ‘brain tumour,’ would I?”

“That’s true,” Mum said, with an expression of surprise that told me she’d learned something new.

I’ve seen others in the DOC talk about this so well. I’ve wanted to talk about it, but haven’t quite been able to find the right words up until now.

Language matters. To quote Diabetes Australia’s Language Position Statement:

“The way language is used – both verbal and written – reflects and shapes our thoughts, beliefs and behaviours. Language has the power to persuade, change or reinforce beliefs, discourse and stereotypes – for better or for worse. Words do more than reflect people’s reality: they create reality.”

“Language needs to engage people with diabetes and support their daily self-care efforts. Importantly, language that de-motivates or induces fear, guilt or distress needs to be avoided and countered.”

“Optimal communication increases the motivation, health and well-being of people with diabetes; furthermore, that careless or negative language can be de-motivating, is often inaccurate, and can be harmful.”

What may seem silly to you, means a great deal to the person who is listening or reading.

Language Matters.

I Wish People Knew That Diabetes

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Last year, I Wish People Knew That Diabetes showed me the great sense of community that exists within the Diabetes Online Community. Today is the second annual I Wish People Knew That Diabetes day, and I’m sharing a few of mine right here. Jump onto social media and share yours today using #IWishPeopleKnewThatDiabetes. Creator Kelly Kunik has written about it here and be sure to check out the official I Wish People Knew That Diabetes website at iwishpeopleknewthatdiabetes.org.

I Wish People Knew That Diabetes education, healthcare, supplies and insulin are not equally accessible in all parts of the world.

I Wish People Knew That Diabetes has given me a voice, and a passion that I feel so strongly about in life.

I Wish People Knew That Diabetes has not stopped me from living a relatively normal life.

I Wish People Knew That Diabetes means that I can eat anything. I just need to count carbs and give insulin shots.

I Wish People Knew That Diabetes means I know so much more about being healthy than I ever did in my life before.

I Wish People Knew That Diabetes makes me feel guilty and judge myself.

I Wish People Knew That Diabetes is more than scare tactics, threats and complications. There are real people living with it.

I Wish People Knew That Diabetes campaigns are not always representative of people who are actually living with diabetes.

I Wish People Knew That Diabetes has a lot of stigma and misinformation attached to it.

I Wish People Knew That Diabetes is not something that ANYONE asked for.

I Wish People Knew That Diabetes is not necessarily caused by being overweight or not exercising.

I Wish People Knew That Diabetes does not make me a “diabetic.” I am a person with diabetes.

I Wish People Knew That Diabetes wreaks havoc on my emotions. At any given moment.

I Wish People Knew That Diabetes interrupts my sleep. Every. Single. Night.

I Wish People Knew That Diabetes affects those who love me, just as much as it affects me.

I Wish People Knew That Diabetes makes me feel isolated and alone at times.

I Wish People Knew That Diabetes is so much better with the support of the Diabetes Online Community.

I Wish People Knew That Diabetes means I get to chat with the wonderful Oz Diabetes Online Community on Twitter every Tuesday night at 8.30pm AEST.

I Wish People Knew That Diabetes has given me connections all over the world, some of whom I call friends.

I Wish People Knew That Diabetes is something that fits into my life. Not the other way around.

I Wish People Knew That Diabetes is not something to be ashamed of.

I Wish People Knew That Diabetes has made me a stronger person.

I Wish People Knew That Diabetes is never easy.

I Wish People Knew That Diabetes doesn’t mean that I see myself differently to anyone else (even if I am…)

I Wish People Knew That Diabetes means that I can still do amazing things.

 

(Today I’m dreaming of the amazing Coffee and Cannoli at Rossinis on Sydney harbour…)

Glucose Monitoring Doesn’t Tire Me. Diabetes Does.

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I rely heavily on glucose monitoring in order to manage my diabetes. I check before, and two hours after every meal. I check before I go to bed, during the night and when I wake up in the morning. If there are times when my blood sugar is irregular, I find myself testing every hour. I have spoken out frequently about glucose monitoring, and how strongly I feel about it.

I was very keen to take part in the yourSAY (Self Management and You) research a few months ago, looking into the attitudes towards glucose monitoring in Australia. I was very much looking forward to reading the results that were released last week by Diabetes Australia, Abbott and JDRF Australia.

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Monitoring my blood sugar has become second nature to me. I can’t say that I’ve ever lacked the motivation to test. I hardly even think about it anymore. Glucose monitoring is not something that I see as a choice. It’s a way of life.

In that regard, I was surprised at how many people reported that they became “tired” of glucose monitoring. I think I’m more “tired” of diabetes itself. Diabetes is to blame for the lows that force me to stop what I’m doing. The stubborn highs that just won’t go down. The nights where my sleep is interrupted by blood sugar swings. The food that I feel guilty for eating. My glucose meter is only the messenger, telling me what’s going on. My meter gives me a sense of control over the unpredictability of diabetes, and I wouldn’t want to live without it. (Unless diabetes is cured, of course. Then I would love to live without it…)

While my attitude remains unchanged, glucose monitoring is without a doubt inconvenient. When I’m sitting at my desk at home with my meter within arms reach? Easy. When I’m going out for a few hours, and forced to carry that crap around with me? Not so much. I’ll often leave my stuff at home and fly blind for a few hours just for the sake of convenience. I would love to see an affordable, minimalistic device that offered greater convenience while travelling.

I was also interested to read that type 1s checked their glucose on an average of 6 times each day. Yet our National Diabetes Services Scheme only subsidises 5 test strips per day. 2 in 3 people do not always check their glucose as recommended by their GP. The survey itself highlighted a number of benefits of glucose monitoring in managing diabetes: adjusting insulin, managing illness, avoiding hypos or hypers, and peace of mind. Yet I was once made to feel guilty for purchasing too many test strips. Surely, removing these limits would be the first logical step towards encouraging glucose monitoring?

Finally, I was disappointed that these findings did not outline or commit to any solutions to lessen the “burden” of glucose monitoring. I can only hope that this research will trigger conversations and change in the not too distant future, for the sake of the people who took the time to contribute their valuable and personal insights.

You can read the full results of the yourSAY survey here, and the media release here.

A Long Way From Beating Diabetes

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I felt like the words “prevention,” complications” and “type 2” were thrown at me for much of yesterday’s diabetes themed World Health Day. The purpose of World Health Day was to raise awareness around diabetes, and promote good management. Yet I felt that much of what I saw on social media did little to achieve this.

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I was disappointed to see so much coverage focussed on diabetes complications, its cost and its impact on society. What World Health Day lacked for me, was that element of how we people with diabetes manage with this condition day to day. I didn’t see a lot that reflected the wonderful campaign posters that I praised yesterday. Those elements, in my eyes, are how we raise awareness. Those elements are how we make people better understand the day to day management of this condition, and motivate them to live healthier lifestyles.

One story which did achieve this, albeit with more of a type 1 focus, was a DOC connection Lydia Parkhurst from the UK. Check out her fantastic article here.

It was also encouraging to read this quote from Diabetes Australia CEO Greg Johnson, yet disappointing that the issue didn’t receive more attention at the same time.

“The epidemic continues to grow at alarming rates affecting all nations of the world [but] disadvantaged people and poorer people in our communities are much more affected by diabetes.”

The theme of World Health Day was “beat diabetes,” yet the sad reality is that people in developing countries are unable to do so. People in disadvantaged areas of the world are unable to access life saving insulin, blood glucose test strips and basic healthcare. In a country where I take all of these items for granted, we really need to be focussing our efforts on more equal access for others. I strongly urge you to check out T1International for some eye opening insights and join the Insulin 4 All campaign.

To quote some of my words from last November, I’m a bit sick of the media associating diabetes with all of those “lifestyle” factors. Yes, obesity is an issue. Yes, inactivity is an issue. Yes, they’re epidemics, along with diabetes. Yes, in some cases they can be prevented. And yes, we need to work to halt them.

And we can. Independently of each other.

Why can’t we promote healthy diets and active lifestyles, without bringing the words “causes diabetes” into the mix? Wouldn’t it lead to the same outcome? We’d be working towards haulting those epidemics, without stigmatising the people who are already living with chronic conditions.

People living with diabetes would feel motivated and empowered to manage their condition through a healthy lifestyle. And at the same time we’d be encouraging people at risk of developing these conditions to adopt healthier lifestyles.

The only difference?

People already living with diabetes wouldn’t be stigmatised. They wouldn’t have to hear demoralising messages that blame and shame them.

Truth be told, nobody chooses ANY type of diabetes. Except for the health care providers, researchers, advocates and donors who are trying to make sense of, and solve it. Each and every single day.

We have a long way to go in order to truly “beat” diabetes.

Selfish Perspectives

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I feel like I’ve been pretty selfish this week.

On Monday I shouted iced coffees for my team at work on a 42 degree day. I drove my air conditioned car to diabetes clinic, paid an overpriced fee to park undercover and complained about it. I made the decision to switch to an expensive insulin pump in May, even though I can do the same thing with injections. I whinged about an endo who wasn’t supportive enough, despite the fact that I had access to a diabetes specialist and paid absolutely nothing to see him.

On Tuesday I bought croissants to have for lunch the next day, even though I had bread in the cupboard at home. I bought my favourite coffee capsules that were on sale, despite the fact that I already had a stockpile in my locker and instant coffee in the kitchen that would do the same job in satisfying my caffeine fix. I also went out dinner with my family for Mum’s birthday, despite the fact that the cupboards and fridges at home are never empty.

On Wednesday I wanted to make a cake for my Mum’s actual birthday, despite the fact that we’d already celebrated with a fancy dinner. I drove my air conditioned car to the supermarket that is literally a stone’s throw from my house, despite the fact that I could have walked there. I bought cooking chocolate, almonds and whipping cream, even though I could have easily made a simpler cake with the ingredients on hand at home.

On Thursday I asked my team mates if they wanted to pitch in and play lotto for the $20 million this Saturday, even though I already have enough money to live comfortably. I walked over to the coffee shop at lunch time for an iced coffee, even though I had coffee capsules and instant coffee at work. I apologised for the gift card I gave to my Mum for her birthday because it wasn’t thoughtful enough, despite the fact that I’d spent a generous amount of money on it.

Which brings me to Friday. More than likely, I’m going to buy an overpriced coffee on the way to work this morning. I’ll be too lazy to make my lunch at home, and I’ll just buy junk food that I don’t really need to be eating. I’ll probably withdraw some money from the ATM on the way out for the weekend, even though I have bank cards in my wallet that do the same thing.

And you’re probably wondering what the point of this rambly post is, right?

I’ve been reflecting on all of this today, and it really got me to thinking about Spare a Rose and my own donation to Life For a Child a week ago. When I think of the disadvantaged children in other parts of the world who cannot afford insulin and diabetes supplies, my own complaints look really petty and selfish. Compared to all of the unnecessary money I’ve spent this week, my own donation to Life For a Child seems pretty poor.

So, today I’ve matched the donation I made to Life For a Child a week ago.

Without access to diabetes supplies, education and healthcare, people with diabetes will suffer. Without insulin, people with diabetes won’t survive. That’s a human being living with the same condition, just like you or I. Or a son. A daughter. A sister. A brother. A mother. A father. A friend. A family member. An aquaintance. Or even a stranger.

If you are reading this, you are touched by diabetes.

And nobody deserves to die because they have diabetes.

This weekend, consider telling your loved ones that you’ve given life to a child with diabetes rather than gifts.

Flowers die, but children shouldn’t.

Visit sparearose.org, and give life to a child with diabetes today.

Also be sure to check out the folks at t1interational, who advocate for people with diabetes in developing countries. I wrote about their Insulin 4 All campaign in November.

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