This post marks one thousand posts here on Diabetogenic*. That’s a lot of senseless rambling, ragey-moments, times celebrating and despairing about diabetes, and links to brilliant ideas and post… or to things that have either amused, frustrated, delighted or annoyed me.

A thousand posts in and diabetes is still a constant in my life (damn it). And I remain not good at diabetes…and I have many of those thousand posts to prove it.

There are clearly some recurring themes that I write about. I say that I am a one trick pony, but perhaps that’s not completely true. I seem to have a few tricks up my sleeve, really. And now I’m confused, because ponies don’t usually have sleeves and my metaphors are very, very mixed.

Here are the things that seem to have taken up a lot of writing time and words over these thousand posts…


Peer support

Most of the time, I am pretty positive about living with diabetes. Let me be clear: that doesn’t mean I love it, or even like it. But I feel that generally, I know where it belongs in my life and it seems to fit in that place as well and happily (begrudgingly) as it can.

I know that one of the reasons that I feel this way is people in the diabetes world I am lucky enough to call friends and peers. Online friends, in real life friends and those who cross both boundaries are a critical part of my living-well-with-diabetes strategy. Knowing that there are only a very few places around the world where I couldn’t find someone from this community to have a coffee/tea/prosecco/mojito with gives me an incredible sense of comfort. (And reassurance in case of diabetes emergency…)

I say that my peers with diabetes help me make sense of my own diabetes and that’s true. Knowing people who understand innately what it is like to share a body with diabetes means that I never feel alone. Diabetes is so isolating at times – even for those of us surrounded by great people who support and encourage us. As much as I need those people and am grateful for them, it is others living with diabetes that help me realise that I am never, ever alone in dealing with the ‘diabetes things’.

The diabetes online community is made up of lots of people and not all have diabetes. We each bring our own experience and perspective to it. I’ve learnt so much from those living arounddiabetes and how they incorporate it into life, because it comes with its own set of challenges and victories. That is why the community is so valuable – its diversity and range of experiences and perspectives.

I regularly talk about the value of community and diabetes peers and finding our tribe. It can take time to settle into just who and what that looks like, and it changes because there are always new people around. But it is so worth it. My tribe? I love them so hard.

Nothing about us without us

I am not the tattooing type but if I was, I think that I would have this phrase inked on my body somewhere (or maybe I’d be really pretentious, and have it written in Latin: Nihil de nobis sine nobis, according to Google translate.) It remains a frustration of mine that this isn’t the starting point for pretty much anything and everything to do with diabetes care. The fact that we still need to fight for a seat at the table – or a ticket to a diabetes conference – is, quite simply, not good enough. Having others speak for us, on our behalf thinking they know what we need, is offensive.  It should never be the case that non-PWD voices speak for us or over us. Ever. Our stories are powerful, but they are ours and we should have the platform to tell them in our own way; in our own voice.  Tokenism is rife and sometimes, that frustrates me even more than when we are completely excluded. The delusion of inclusion is, I think, worse.  Whilst there may have been some strides made to true co-design and inclusion, we have not come far enough and until we get this write, I’ll have a lot of content fodder for this blog.

Food

I like food. I write about it a lot. And I want to be Nigella. That’s really all I have to say about it right now…

Waffles in Brussels. Both were excellent.

More than numbers

Apparently, stating the obvious is still necessary in diabetes. We are more than numbers; our A1c does not define us; our worth is not wrapped up in our glucose levels. We have been saying these things for years…decades…and yet there are still times that this is what we are reduced to.

New treatments, devices, drugs, education programs are measured in reduction of A1c. Perhaps this is because it can be measured, but talk about only getting part of the story. I can’t help but think that if PWD were part of establishing research protocols, there may be far more than numbers to assess the success of a treatment or therapy. (See also: nothing about us without us…)

Women’s health

In recent years I’ve written about the issues specific to women, health, sex and diabetes a number of times because there is so little out there about it. And it seems it resonated with a number of women who wrote to tell me (and the HCP who saw me in the fresh produce section at my local Woolies and yelled how she loved my idea of giving lube in diabetes event bags).

Anyway…talking about the stuff that may not be the easiest is important. It’s the only way we get remove stigma and encourage people to share their stories. Which helps others. That’s why I have openly written and spoken about miscarriages and infertility. And eating disorders. (I know – not an exclusively women’s health issue.) There is nothing shameful or embarrassing about these topics. Other than we don’t speak about them enough.

Learning from and supporting others

The Interweb Jumbles I write are my favourite (and cheat’s) way of pulling together all the things I’ve seen that have interested me and leaving them in future place for (my) future reference. Plus, I love sharing what others in the diabetes community and world are doing.

I have always benefited from the generosity of others in this community who have shared my work and I pay that back whenever and wherever I can. Supporting each other is critical.

There’s so much going on in the diabetes world all the time and I highlight the things that resonate because I think that if they mean something to me, they may mean something to someone else, too.

Science. Science. Science

From pseudo-science rubbish, to ridiculous made-up diabetes cures to anti-vax delusions. How much writing material have they provided!

I live in hope that one day – and may that day be soon – we won’t still have to read about these charlatans trying to convince us that all that ails us can be cured with fairy dust and positive thought, or that vaccines are evil and cause diabetes, or that ‘wellness warriors’ are the true experts and professionals when it comes to diabetes.

While a lot of what I write is spent mocking these fools, there is an underlying seriousness to it all. Who can forget little Aiden Fenton who died after his parents stopped giving him insulin, instead leaving him to be treated by a ‘slap therapist’?

Anyone who is sprouting any treatment that is not based in science when it comes to diabetes or perpetuating anti-vax rubbish is as barbaric as the man who was charged with Aiden’s death.

The whole person

Diabetes happens because of something not working properly with our pancreas. But it affects every single part of us – something that astoundingly still seems to surprise some people.

Considering our mental health and emotional wellbeing is critical when assessing just how diabetes impacts on our every day. For some, diabetes seeps into every single part of us and for others, we keep it at bay and manage around us. For most of us, there is an ebb and flow of just how that works.

And while we’re talking about the whole person, diabetes-related complications may be specific to a particular body part, but those body parts remain connected to the rest of us.

For so long, we get metaphorically chopped up with as only bits of us get attention and focus. But nothing in diabetes is ever in isolation. That’s just not how it works.

And finally, language

The trick this (however-many-trick) pony is most known for is #LangaugeMatters and you know what, I’m happy to wear that. I really am. If I was to stop this blog today (thought about it…1,000 has a nice rounding off feel to it), and never spoke about diabetes ever again (oh, if only), I would not be disappointed if this was what people thought of when they thought of me and this blog.

Language matters. It does and I refuse to, for a moment, believe that it doesn’t. I am certainly not the only person playing in this space and I am so grateful to have a tribe of language matters peers and colleagues can rise above the small details to understand just why this issue does really matter.

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Thanks to everyone who has read one or more of these thousand posts. Thanks especially to the people who keep coming back. I can’t promise that there are going to be a thousand more posts. And I can’t promise that I will learn any new tricks other than the ones that I seem to have on repeat at times. These issues remain important to me and perhaps to you too.

* At EASD, my mate Bastian Hauck gave me a head’s up that I was getting close to publishing the 1,000 post on this blog. I’d not have had a clue otherwise. Thanks, Bastian!