All diabetes sucks. That is, in my opinion, just the way that diabetes is. No type of diabetes is better or worse than another; no-one has the ‘bad’ type (because, seriously, there is no ‘good’ type!). No one asks to get diabetes, and when diagnosed, we all need adequate care, support and access to the right treatment, therapies and technologies.
Hopefully, we are all on the same page so far.
As it turns out, diabetes doesn’t discriminate. You can be poor, rich, thin, fat, old, young, smart, not-so smart, run marathons, spend all day binge-watching Netflix, vegan, carnivore, Gryffindor, Slytherin, Hufflepuff or Ravenclaw. Doesn’t matter. Those handing out diabetes cards don’t care. Sure, there are some non-modifiable risk factors that put you at an increased change of getting diabetes, but even then, there are no guarantees.
It’s a wild card condition and it’s crap all around if that’s the card you’re dealt.
Sure, there are differences between the (many, many, many) different types of diabetes. I believe that we should all have a complete and utter picture of our own diabetes diagnosis – we should know which type we have, understand all treatment options available and be supported in whatever we choose to manage best our diabetes. While I don’t, and will never, subscribe to the idea of changing the name of type 1 diabetes, I do believe that people have a right to know which condition they have, because a diagnosis of a particular type comes with other health implications.
But for all the differences, there are a shit load of similarities, and that’s what I am for on World Diabetes Day this year.
I’m for access to care
I don’t care what kind of diabetes you have; you absolutely do deserve to receive care that provides you with current, evidence-based information, targeted to your own diabetes management. I’m for being able to choose the right healthcare professional for you, in the setting that works best.
I’m for the right diabetes technology for the right person at the right time
Diabetes technology is not the be all, end all and won’t eliminate all diabetes burden. But it is a useful management tool, and I support the right to all people with diabetes being informed and able to access the technology that works best for them. I’m for HCPs understanding that there is no one size fits all when it comes to tech, and to them not being the gatekeepers to the tech we want to use.
I’m for user-led innovation
#WeAreNotWaiting for a reason. No one appreciates just what we need from our technology like those of us using it and that is why the DIY diabetes movement is gaining momentum every day. We don’t need anyone to approve what we do, we just need our HCPs to support our choice.
I’m for kindness in diabetes care
Regardless of the type of diabetes, everyone should be treated respectfully, kindly and without bias. I’m for healthcare professionals who work with us to do our best, who understand how challenging diabetes is and acknowledge our efforts, and are allies.
I’m for no judgement
No one should be judged because they have diabetes. I don’t care what kind of diabetes you have; no one deserves to be blamed or shamed for it, or for what comes after a diagnosis. If you have type 2 diabetes, you didn’t bring that on yourself, any more than a person with any type of diabetes brought on any diabetes-related complications.
I’m for funding research
Research is critical when it comes to helping us live longer, better, happier lives with diabetes and there are simply not enough research funds dedicated to diabetes. Research should be all encompassing, considering all aspects of life with diabetes, including (or maybe even especially) the emotional and behavioural side of life with diabetes.
I’m for mental health support
Diabetes is not just about numbers and everyone with diabetes should be offered and able to access a psychologist if they need or want it. Feeling overwhelmed, burnt out, over it, unable to cope, miserable, grief or anger about diabetes is perfectly normal, but you need a way to understand it, and help you live with those feelings. It’s impossible to do it alone.
I’m for peer support
Peer support is a brilliant and can be one of the most useful ways to help us live well with diabetes. It should be available to anyone who wants it. Finding your tribe can be difficult, so understanding where to look, and how to connect is important.
I’m for being united
Yes – there are different types of diabetes and it’s okay to identify as having a specific type. I have type 1 diabetes – that’s my reality. But defending one type, by throwing under the bus is not okay. We can have conversations about the different diabetes without doing that. This is often really evident in the online community, including by some HCPs who actually add to diabetes stigma in the way they jump on the Daily Mail/Channel 10 news/annoying shock jock when they say something completely wrong about diabetes. (Really. When a crappy shock jock makes some comment about people with diabetes just needing to eat better and be more active, responding with ‘Please specify that you mean type 2’ only perpetuates the myth that type 2 diabetes is all about lifestyle. You are adding to the stigma when you do that.)
We can all have a focus, and no one needs to be told what they should be advocating for. Just don’t do it to the detriment of a different type.
I’m for accurate reporting of diabetes
So, further to my previous point: Media, do better. Really. Stop the stigma; stop the sensationalism. Report accurately and factually. And use images that don’t feed into the myths of diabetes. We can’t make it any easier for you – the Diabetes Australia Language Position Statement even has a handy table that is the most perfect guide for you to use when speaking/writing to and about people with diabetes.
I’m for listening to people with diabetes
If the voices of those of us living with diabetes are not the loudest in the conversation, something is wrong. People with diabetes have the answers a lot of the time, we just don’t get a forum to share them. But when we do, listen to us. You don’t get to challenge our personal experiences and tell us that we are wrong, or that things are getting better so we should be grateful, or that it could be worse. Listen and learn.
I’m for #LanguageMatters
The words we use and the way we use them shape attitudes and attitudes of those around us create our diabetes reality. When we have people using thoughtful words, backed up with thoughtful attitudes, supporting and encouraging us, we do better. And conversely when we hear words that are negative and blaming, we can be paralysed into inactivity. #LanguageMatters because it shapes how we see our own diabetes.
I’m for smashing stigma
Diabetes stigma sucks. It can be absolutely paralysing for some people, sending us into inactivity when it comes to dealing with our diabetes, fearing what people with think of, or say to us. Every word you say about diabetes affects us, so use words that don’t stigmatise.
I’m for #TypeAll…
…because we are stronger when we are united. It’s that simple. There are millions and millions of people with diabetes – we have critical mass. If we all came together demanding better care, better access, a stop to the blame and shame and stigma, imagine just how powerful we could be.
The theme of this year’s WDD is once again diabetes and the family, and while my own immediate family is a huge support, walking alongside my diabetes life, I want to broaden the definition of family to include every single person living with diabetes. You are all my family, and families work best when they stick together.
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November 13, 2019 at 1:54 pm
Rick Phillips
I am very much on the same page. No one gets to define our own experience, or limit our possibilities.
PS: OK who am I kidding, Sheryl defines most of my world,
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