I’m tired.
Today, I woke in a great mood after a good night’s sleep. The weekend had been relaxing and lovely – family, friends, food and gorgeous weather on top of it all. Plus, I bought a new necklace with a pineapple on it. It was a good couple of days!
I was standing at my favourite café near work, waiting for a takeaway coffee and thinking that the barista was a magician as I watched his choreographed movements, filling takeaway cups with perfectly brewed caffeine.
‘This good day is about to get better,’ I naively thought, the taste of that first sip of coffee so close.
And then, I checked my email and ‘bam’. There it was.
A discussion about not distinguishing between type 1 and type 2 diabetes in a setting where it really is not relevant. I sighed.
And realised how tired I am.
Nearly thirteen years ago, I was employed to run a very small and, at the time, somewhat tokenistic type 1 diabetes program for a diabetes organisation. Thanks to a very supportive CEO and me being a pushy little thing, the program grew and grew and now, incorporates a dedicated team doing some incredibly good work for people living with type 1 diabetes.
One of the reasons for the program’s success is that we have been very clear about defining it as a program for people with type 1 diabetes, making sure the information we provide is targeted and relevant to the people we are trying to reach. We acknowledge each and every day that people with type 1 diabetes have specific information requirements and then we go about providing that information in the way people want.
In exactly the same way, a couple of years ago, we realised that the information for people with type 2 diabetes was completely forgetting the changing face of the type 2 diabetes community. There are more and more younger people being diagnosed with type 2 diabetes and the information we had was very much for an older audience. Hence, Generation T2 – a new program for 18 to 39 year olds with type 2 diabetes.
There are times that it is important to distinguish between the diabetes and there is no louder advocate for that than me.
But there are times that it is irrelevant. Yet, people still get angry – even when it really doesn’t matter if the type of diabetes is defined.
I am tired.
I am over this argument and this discussion.
Last week, the government handed down a budget that is going to hit the hip pockets of people with diabetes like never before. All people with diabetes will be affected – regardless of type.
During the World Diabetes Congress we heard of places around the world where the cost of insulin is so prohibitive that there are people dying because they cannot afford to buy the drug they need to stay alive. Slow, painful, horrible deaths because they cannot afford to buy insulin. Just think about that for a moment.
Here in Australia, there are people who cannot afford to use an insulin pump despite desperately wanting to because they cannot afford private health insurance or qualify for the Insulin Pump Program to assist with cost of purchasing the $9,000 (plus) device.
These are the issues that we should be fighting for and getting angry about. These are the issues that are important. Access to healthcare – a basic human right for all people – ALL people with diabetes – is what the topic should be; not whether or not the Channel 10 news forgot to say type 1 (or 2) before the word diabetes.
I am a card carrying member of the diabetes community. I am proud of this community and I am pleased to have a voice within it.
But we need to stop the finger pointing and the name calling and the blaming. How can we expect people outside of our community to get it right if we can’t? Why is it more important for people to understand the how and why we got this condition as compared with the how and why we’re trying to live and manage with it?
I am proud of the Australian diabetes community, but it is here that I hear this attitude more than anywhere else in the world. This discrimination is not helping us – it is harming us. Does it matter if people don’t really understand the different types of diabetes? I get it. It’s annoying, it’s frustrating; it’s constant. But really; does it matter?
This is a first world – a first class – problem.
And I am tired. I am saying it’s time to stop. Enough!
17 comments
Comments feed for this article
May 19, 2014 at 3:52 pm
Sherl Westlund
Thank you Renza, this topic is something that we feel very passionate about and it’s time we all stand together and say enough! We couldn’t agree more !!
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May 19, 2014 at 10:53 pm
RenzaS
Thanks for your comment and for reading, Sheri!
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May 19, 2014 at 4:23 pm
Sara
AMEN!!! I am soooo over it!
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May 19, 2014 at 10:52 pm
RenzaS
Thanks for reading, Sara. I’m over it too!
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May 19, 2014 at 5:45 pm
Jenny Edge
We, are the best advocates for our conditions whatever diabetes we have. RENZA – THANK YOU FOR ALL THE GOOD WORK YOU DO.
We can be our own worst enemies from time to time.
Over time society changes, not all@ same time, some never
As a group we can do it, let’s not sweat on the small stuff!
–
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May 19, 2014 at 10:51 pm
RenzaS
Love that last line, Jenny. Thanks for your comment and thanks for reading.
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May 19, 2014 at 6:05 pm
Mairi-anne
I say Tess has diabetes… Id rather jump on the band wagon of Diabetes Victoria’s media and awareness campaigns then trying to say Type 1 .(Im in the minority Im sure) If people question “which one?” I then educate. I dont think people judge me – and if they do, thats there problem not mine.
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May 19, 2014 at 10:51 pm
RenzaS
Great attitude, Mairi-anne. In some circles, you would be in the minority, but good on you for standing firm. Thank you for reading.
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May 19, 2014 at 6:08 pm
helwild
Thanks Renza. As the Mum of a Type 1D, living with Type 2D myself, with many family members with both types, & gestational, I agree. If we can’t stick together, how can we expect the wider Community to ‘get’ what a struggle it is to live with diabetes? I counsel all types of pwd, & everyone I work with is deserving of help, compassion, & empathy from the whole diabetes community. No one DESERVES diabetes.What a waste of passion & energy, to be trying to ‘blame’ some pwd, & at the same time distance oneself, or one’s child, from blame. I absolutely get the ‘guilt’ of the parent whose child has T1D, or any other chronic disease. It’s not our fault either, we need to be kinder to ourselves & divert that guilt into positive action, like support.
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May 19, 2014 at 7:05 pm
Sherl Westlund
I love your attitude helwild, on behalf of Diabetes Research WA thank you !
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May 19, 2014 at 10:53 pm
RenzaS
Thank you, Helen, for this wise comment. If only we could remember that no one deserves diabetes.
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July 12, 2014 at 12:39 pm
bec
Thank you, I’m exhausted from all of the inhouse fighting rather than supporting.
I think this contributes to the diabetes burnout we experience
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May 19, 2014 at 10:33 pm
Glen
Right there with you again Renza. I have been tired of this kind of thing for a long time and tend not to bother reading the posts. If only those people could direct their efforts and passion into something constructive for those really needing help instead of simply complaining on forums etc to people who have been hearing the same thing over and over.
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May 19, 2014 at 10:49 pm
RenzaS
Glen – you have a point there. It is often the same people saying the same things in the same places. There is nothing constructive about it. It just serves to perpetuate myths and add to stigma.
Thanks for your comment and thank you for reading.
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May 20, 2014 at 1:10 am
Kate Cornell
Thank you so much for this. This is something that needs to be trumpeted from the mountain tops until we’re hoarse.
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May 21, 2014 at 12:28 am
Cath Stephensen
Thanks Renza. I never really did ‘get’ the discrimination thing. I’ve recently had a psychologist asking me what I felt about diabetes stigma and I’m like, ‘What stigma?’ If someone says something ignorant, I take it as an opportunity to educate them and you know what, mostly they’re amazed and thankful for the conversation.
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July 12, 2014 at 11:02 pm
emma
i still have problems with mainstream media reporting ‘diabetes is caused by unhealthy weight and diet and can be managed effectively with diet and exercise’. this message is also broadcast by various diabetes organisations across australia, and in relation to both type 1 and type 2 and gestational diabetes, it is oversimplified and wrong. there is good research in relation to type 2 which says the supposed causal link between weight and type 2 is wrong – rather, gaining weight/being overweight is a symptom of type 2 diabetes or the genes which carry it, not a cause. while diet and exercise are great for type 2 diabetes, people don’t get type 2 diabetes because they’re overweight and don’t exercise. it must be incredibly hard having type 2 with all that ‘you did it to yourself’ misinformation going around. i get so sick of hearing it, and i have type 1! the other day, i was put on hold with diabetes nsw and listened to a voice recording telling me to eat healthier foods with a low GI. GAAAH. i would prefer, did you know, if you eat lots of carrots in a meal, you might have to bolus, carrots have blah blah carbohydrates etc. that is actually useful information for people with diabetes.
i think that this ‘lifestyle disease’ association with ‘diabetes’ is a barrier for funding and donations – who wants to give money to what is perceived as a lifestyle disease? i have overheard conversations at train stations where diabetes fundraising is being run – would be good to do a study on it.
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