I hate to jump on any bandwagon, but I’m jumping on this one – boots and all! Some of you may have seen the petition that is going around at the moment about changing the name of diabetes, or rather revising the names of type 1 and type 2 diabetes to better reflect the nature of the conditions.
Yesterday, I read a most thoughtful and well-considered commentary on the issue by Queen of Diabetes Art Lee Ann Thill. (I don’t know Lee Ann personally, but I adore the work she does around Diabetes Art Day and her brilliant project the VIAL Project.)
Lee Ann suggests that changing the name of type 1 diabetes to better distinguish it from type 2 diabetes is not going to do anything when it comes to public understanding of diabetes. She’s right. Stop for a minute and think back (if you can) to a time where diabetes wasn’t part of your life. How much did you truly know about the condition? Did you even know there were different types of diabetes? Could you identify the myriad ways type 1 diabetes is treated?
Did you know that there are four types of multiple sclerosis? No, neither did I until I asked Dr Google. (Although, I did know that there was one called relapsing-remitting MS because that’s what Jed Bartlet had in The West Wing, so naturally, I’m an expert on that!) And is it really important that as a person who has no connection to anyone living with MS that I have an in-depth knowledge about it? Or understand how it impacts on the life of a person with MS? Should I be expected to understand that primary-progressive MS is different to progressive-relapsing MS? My tiny little brain is already pretty full of information I need (location to closest decent coffee shop) and useless info (being able to quote Marx Bros films), so I’m not sure that I have room for minute details about living with MS or any other health condition other than the one I have to deal with daily.
I understand how frustrating it is to have people tell me that they can cure my diabetes if only I’d stand on my left foot under the full moon on a Tuesday in November and lots of other things. But I don’t think that changing the name of diabetes is going to stop people offering these gems.
What we really want to fix are the people who are being stupid and insensitive. And I’m afraid that’s just not going to happen.
Diabetes sucks – I think that’s one thing upon which we can all agree. And there are some really significant and important issues that people living with this condition face on a day-to-day basis. Such as access to healthcare and to technology; inadequate healthcare; kids being safe while at school; discrimination in the workplace; emotional wellbeing;
None of these issues will be solved or made better for people with diabetes by changing the name of the condition. More funding is needed to improve access to technology and increase the number of HCPs (especially in rural and remote areas); better education and training is needed to improve HCPs’ knowledge about diabetes and real-life with diabetes; more training – compulsory training – is needed by the people who are charged with looking after kids in school and out of school hours care; tougher penalties may stop discrimination in the workplace; regular screening is needed to identify the emotional health of people with diabetes.
Surely, but surely we should be directing our energies towards these issues. I have accepted that when it comes to diabetes I am going to spend the rest of my life dealing with ignorant, stupid and insensitive comments from people who could be described using similar adjectives. Changing the names of type 1 and type 2 diabetes won’t magically make people stop being so ignorant. It would simply add another layer to the confusion.
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April 16, 2013 at 5:26 pm
Ashley
I completely agree. Diabetes has gone through various name changes but at the end of the day it is what it is – diabetes!
What people are looking for is to be as far away from the discrimination and stereotype that comes attached with type 2. So even if type 1 gets called something like autoimmune diabetes, what would you call type 2? Lifestyle-induced diabetes? That wouldn’t be accurate or fair.
To some degree, I don’t think people living with diabetes even fully understand or know about other types of diabetes as well. Especially when I hear people with type 1 diabetes saying they ‘don’t feel sorry for people with type 2 because they deserve it’. Comments like that are purely unnecessary and what we need is more education, understanding and way more compassion between everyone!
Ash
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April 16, 2013 at 5:56 pm
mairi-anne
agree 100% there are more important avenues to focus our energy. Changing names wont change perceptions. We need to educate, inform, teach and support people with and without diabetes. Promoting healthy attitudes to what diabetes is (all kinds) and how we can make a difference for people and families with diabetes now and in the future. Yet again loved your blog. X
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April 16, 2013 at 9:14 pm
fingerpricker
I totally agree! Although it is frustrating at times that people don’t know the difference – it would just confuse the hell out of everyone even more!
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April 18, 2013 at 2:12 am
ABCanet
I have to disagree with your premise that, “Diabetes sucks.”
There are plenty of conditions/diseases that are way worse. Diabetes (whether T1DM or T2DM or something else) is neither degenerative (like multiple sclerosis) or fatal.
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April 18, 2013 at 6:01 pm
CJ
I agree with your article. I am T1D but actually do know all about MS since my wife has it and her older brother died from it. Anyone out there with MS (any form) should read the book by Prof Jelinek on how Vitamin D and a specific low saturated fat diet makes an incredible difference.
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April 24, 2013 at 1:23 am
Mumof3
Abc… Seriously…T1D and t2D are not fatal… WRONG… So so so so wrong …I know of 6 ppl this year who have died from type 1… Google dead in bed syndrome …. And type 2 can be deadly if not cared for. And type 2 is not just a fat persons disease… My bf is and always has been about 58 kgs, very sporty and had type 2.
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April 25, 2013 at 1:23 pm
Playing catch-up | Insulin pumps need Tetris
[…] at the moment – you can read a summary of the recent activities on The Butter Compartment or Diabetogenic. I truly can understand both sides of the argument, but my view is that that changing the name is […]
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