Some dot point facts:
- It’s National Diabetes Week here in the wonderful land of Oz.
- It’s about all types of diabetes. Every. Single. Last. Type.
- 280 people are diagnosed with diabetes each and every single day in Australia.
- All types of diabetes sucks.
- No one asks to get diabetes.
And now some dot point observations:
- There is no merit in changing the name of the different types of diabetes. None at all.
- I am yet to hear a decent argument about why we should change the name of type 1 diabetes to something else.
- Having said that, if you can incorporate the word ‘unicorn’ into a new name for type 1 diabetes, I might get on board. Although probably not. I just want a unicorn.
- Many health conditions have ‘types’ and ‘sub-types’. There are five different types of lupus. Can you name them? Can you tell me how they are different? If someone said they have lupus, would you be able to engage in a meaningful discussion about their ‘type’ of lupus? I know I certainly couldn’t – and my mum has lupus.
- Quite frankly, I don’t care what type of diabetes the 280 people diagnosed each day have. It is all diabetes and it is all a condition that is significantly underfunded, a condition which carries horrendous stigma and a condition which is crap to live with.
- What I do care about is that there is increased awareness about all types of diabetes. I care that more research dollars are thrown at diabetes. I care that more healthcare professionals know about diabetes and about diagnosing ALL types, quickly. I care that people living with all types of diabetes have access to healthcare and devices and medications and support.
- The whinging and whining and bitching and moaning that is coming from some circles is tedious. Especially considering the whinging and whining and bitching and moaning is being done mostly amongst like-minded people so nothing is actually being achieved.
And finally, a comment:
Last week, I sat in on MasterLab, a two day advocacy workshop run by the wonderful Diabetes Hands Foundation. In the room were some of the most successful, vocal, passionate, smart diabetes advocates in the world. These are people who take their cause to government and make changes for people living with diabetes, who raise awareness about living with diabetes and raise funds to help support people living with diabetes. They do it without fanfare and without accolades. They just do it.
How many times do you think there was a discussion about the different types of diabetes? How many times do you think parents of kids with diabetes in the room tried to say how much tougher they have it than others with diabetes? Or people with type 1 diabetes complaining that no one understands why it is more difficult than type 2? How many times do you think that type 2 diabetes was demonised?
Not once.
Because those smart people in the room – the people who are respected and listened to in the wider diabetes space – know that there is no point in working against each other.
But you know what? I’ve been saying this for some time and there are people far more eloquent than I on the same page.
This is from (US-based) Diabetes Patient Advocacy Coalition (DPAC):
How will you share a unified patient voice for a disease as diverse as diabetes? (Type 1 vs. type 2, parent vs. child, etc.?)
DPAC has committed to the idea that diabetes doesn’t discriminate. We have no interest in promoting cross-type discord. There are benefits of numbers, passion, and reach in various parts of the diabetes community. We all benefit from all those skills. If an individual has an interest in raising their voice to help people with diabetes get access to safe and quality products and services in the United States, then we welcome them with open arms.
Divided we can be ignored. Together we make a difference.
And in her wrap-up of last week’s MasterLab, my friend Alanna wrote this brilliant blog post. And this closing paragraph:
We as a community need to stop putting our walls up. Nobody, not you, not me, not the president of the USA can advocate for change in diabetes care and treatment until we educate effectively. Defending your “type” and throwing the other under the bus is unacceptable behaviour, and is counter productive to creating positive change and a world without the financial, physical and emotional burden of diabetes.
I am calling on all of my readers, old and new to commit to never trying to defend your type, and only defending the human beings who are living with mal-functioning pancreases so we can really get to work.
Another friend, Kerri Sparling wrote this last year, speaking about the wonderful Walk with D initiative.
The diseases are different in their origin but so similar in how they map out physically, and more importantly, emotionally, and I wish I had known that earlier. I wish I had been more supportive of my type 2 peers. I wish I had known how they felt.
I have lost friends because of my stand on this issue. I have had arguments with people who think that I should be using this blog and my voice to advocate for changing the name of type 1 diabetes or rallying against people not understanding the differences between the types of diabetes. I have had people challenge me and ask me what I stand for – what my diabetes advocacy is all about.
The answer is simple. I am against diabetes stigma. I am against building up one type of diabetes at the expense of another. I am for access to healthcare and devices and medications for all people with diabetes. I am for a unified community. I am for the wonderful #OzDOC community which is a beacon in Australia of unity within the diabetes world, and congratulate Kim Henshaw in promoting an inclusive, supportive and downright fun platform for all people with diabetes to connect.
It doesn’t mean we have to agree on everything or all be focusing on the same issues. It just means that we work together and are kind to each other. #TypeAll
Gorgeous new James Taylor CD made its way into our home yesterday. Angels of Fenway is a favourite given that I was there just a few weeks ago.
27 comments
Comments feed for this article
July 17, 2015 at 3:37 pm
Icy (@individualchic)
I support #TypeAll
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July 17, 2015 at 7:58 pm
RenzaS
Thank you, Icy. I do too!!
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July 17, 2015 at 3:38 pm
Tony
Such passion, I hope you find your unicorn 😉
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July 17, 2015 at 7:58 pm
RenzaS
Still looking. I’ll let you know how it goes. Thanks for reading, Tony!
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July 17, 2015 at 8:50 pm
Tony
I think looking for unicorns is ether than actually finding them 😆
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July 17, 2015 at 3:40 pm
Glen
EXCELLENT post!
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July 17, 2015 at 7:56 pm
RenzaS
Thanks, Glen.
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July 17, 2015 at 3:47 pm
Ashley
A hundred thousand billion zillion points to you!
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July 17, 2015 at 7:58 pm
RenzaS
Thanks Ash.
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July 17, 2015 at 4:09 pm
Jeann Clark
My support group has 3 type 1s and 30+ type 2s but we ALL have diabetes! I am proud of the empathy we show each other.
Renza, I was just thinking of you as I went to the local Vietnamese Bakery and there on the counter……Nutella Donuts!!!
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July 17, 2015 at 7:58 pm
RenzaS
I love your group, Jeann. And I love your comment. Thank you.
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July 17, 2015 at 4:35 pm
Ashleigh R
Couldn’t agree more.
Some of the comments I have seen this NDW have driven me insane re type wars
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July 17, 2015 at 7:08 pm
ginapash
What “type wars” – There are no Type Wars – only you seem to be talking about them – Ppl need support for ALL types and ppl need a cure for their “type”. T1Ds are not against T2Ds. They are supportive. It is hard though for T1Ds when the Big Orgs suggest through advertising and the Media that ALL diabetes can be “prevented”! T1D can’t be “prevented”. DA should say that “some” forms of T2D van be prevented!. Perhaps ONLY the Type 2 that you get from “unhealthy eating and lack of exercise” (DAs words not mine), should have a different name? If you look at the NDSS survey of young ppl, that is one of the misconceptions that makes them anxious or depressed. Additionally, the causes of T1D and T2D are completely different and the Cure for T1D will be different to the Cure for T2D. This is due to T1D being an Auto-Immune disease. T2D and Gestational diabetes are not an Auto-immune disease! Only T1D and LADA are Auto-Immune diseases. Thanks for listening!
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July 17, 2015 at 7:57 pm
RenzaS
Thanks for proving the point of my blog, Gina.
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July 18, 2015 at 1:02 am
ginapash
Oh thanks Renza – glad I helped to prove the point of your blog! Allow me to explain to everyone else why it matters! Recent activity around NDW, adverts and posts from the diabetes orgs seem to be promoting (maybe inadvertently), that you can manage type 1 diabetes through healthy eating and lack of exercise, which isn’t actually true for “All Types” of diabetes, only a form of T2 that seems to be on the increase. However, T1D has remained stable since 2013, and is not on the increase, (see NDSS Snapshot http://www.ndss.com.au/en/Research/Data-Snapshots/) I’m happy to advocate for a healthy diet for ALL people with diabetes, and happy to prevent the incidence of SOME forms of T2D, however, these phrases that are rallied about in the media, and generated by the diabetes Orgs, reinforce the misconception that type 1 diabetes can be managed through diet alone. So I am sure you can now all see, that myself and others (including T2Ds that didn’t get their disease through “unhealthy eating”), find it frustrating if it appears to be suggested by a National well regarded organisation that is meant to represent ALL types of diabetes. ALL types, INCLUDING ones that have different causes and different treatments! And these “types” that have different causes and different treatments, should be specified as such. Not put together in the same basket. During this NDW, we saw a lot of “awareness raising” for T2D and I feel that it does more harm than good. The 280 a day campaign only undermined real attempts at awareness for ALL types. Out of that 280 a day campaign, 10% of people have T1D. So that means 28 people a day get T1D. Not 280. So this is misleading, that is, if the campaign of 280 a day was supposed to prevent the “growing incidence of diabetes”. As I mentioned before T1D is stable and not growing in incidence since 2013. And indeed, the TypeAll campaign is also not helping anyone! The T1D and T2D illnesses don’t have much in common at all! Currently the pervasive misconceptions surrounding diabetes, have a very real and detrimental impact. When everyone hears “Type 1 diabetes” and imagines a group of people who gave themselves a disease through “unhealthy eating”, it’s hard to drum up public support! And public support means funding for research for a cure. Big T1D charities need public support for donations for research for a cure. Putting ALL types together spreads perceptions in the general community of a poorly understood disease. So let’s not contribute to the ignorance and get ourselves a cure, which I am sure you ALL want? Thanks for listening again. Gina.
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July 18, 2015 at 7:21 am
RenzaS
I’m sorry, Gina, I think you misunderstood my reply to your initial comment. Both your comments and your insistence at defining the different types of diabetes only promotes stigma and divides our ’cause’.
I am absolutely not interested in getting into an argument with you, but I want you to understand that my blog post is trying to highlight how inclusion, support and community will actually provide a better outcome for people living with diabetes.
I really wish you well with your advocacy efforts for people with type 1 diabetes.
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July 17, 2015 at 8:00 pm
RenzaS
Thanks, Ashleigh.
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July 17, 2015 at 7:28 pm
Andrea
I love everything about this post, Renza!
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July 17, 2015 at 10:56 pm
RenzaS
Thanks, Andrea.
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July 17, 2015 at 11:28 pm
lifeont1
Thanks for the shout out!
And we clearly need more people on board (gina…..)
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July 17, 2015 at 11:37 pm
RenzaS
Thanks for your comment, Alanna. And even more, for your awesome post.
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July 18, 2015 at 1:43 am
Richard T
Renza, this is a great post – well thought out and written. Thanks for sharing!
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July 18, 2015 at 7:22 am
RenzaS
Thank you, Richard. Much appreciated. Hope all is well with you.
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July 18, 2015 at 10:06 am
Heidi Lilley
WOW, amazing, thank you for such an awesome post. I thought I was the only one who thought this way. I’m so glad to know I’m not alone in my thinking. I love this so much Renza. Preach it !
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July 18, 2015 at 10:13 am
RenzaS
Thanks Heidi. I think that actually a lot of people feel that a more inclusive attitude serves us all best. Thank you so much for your comments and for reading.
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July 18, 2015 at 6:41 pm
ginapash
Renza – I didn’t misunderstand your blog! Like you, I’m not interested in an argument either. My second post was only to try to explain myself. I don’t think you have actually read this post properly. I purposely tried to give you reasons why I want T1D to be specified before the generic use of the term “diabetes”, rather than be lumped in the same basket as the other types of diabetes. T1D is an Auto-immune disease and none of the other types are. Therefore the cure will de different to the cure for the others. I really do believe that it is your comments, actually, that “divides our cause”. There is no stigma. Your insistence that there is “stigma”, is unfounded. Would you care to give me examples? Even the diabetes orgs themselves are (now) separating the differences during this National Diabetes Week. In my comments, I was just pointing out some points of my own. I hope you can respect that? I respect your point of view. When you wrote, “Thanks Gina for proving the point of my blog” I thought that was a tad sarcastic, and I was quite hurt, but I chose to ignore it! I’m not interested in arguing, but you did say in your blog, “I am yet to hear a decent argument about why we should change the name of type 1 diabetes to something else.” So I have tried to offer some reasons to change the name. I am passionate too, just like you, about our “cause”. I have had T1D for the past 40 years and have not seen ANY advancement for a cure by lumping ALL types in the one basket. 40 years. Can you answer why that is? What about the fact that T1D has very different causes to the other types? You can’t seem to acknowledge that? Everyone deserves to have an opinion. I also have many people who agree with me and a lot of them are parents of T1D children. Have you any parents of T1Ds who agree with you? We want to see a cure. Don’t you? I wish you well Renza, and can only hope that you change your mind, and let us find a cure for T1D! Thanks for reading my comments, Gina
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July 31, 2015 at 10:00 am
Some Inspiration from the #DOC | Type 1 Writes
[…] blog (and person) that I take a lot of inspiration from is Renza at Diabetogenic. Renza’s recent post knocked everyone’s National Diabetes Week complaints right out of […]
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