It's All About You

Health is a very personal thing. It's also a very unique thing, as seen with the current Covid-19 crisis. The differences in symptoms and illness severity are vast. The same appears to be true for Type 1 Diabetes. (I imagine it's the same for most other health conditions too!)

I'm very open about my T1D. I've been chuntering on about it online for a few years now. I've spoken about my eye complications, which relate to it as well. I do that because the engagement I get from my peers is informative, it's supportive, it gives me a greater understanding of others and their diabetes. Over time, it's brought about many positives including meeting and becoming friends with some truly amazing people.

But (and there has to be a but or there wouldn't be much more to add) despite all the engagements, the almost daily conversations about T1D, the articles I read, the videos I watch, the conferences I attend and the many different social media platforms I use, I know VERY LITTLE about how others manage their diabetes, the nuances, the different points of view, the wants, the needs... Your diabetes does vary! I know little bits about lots of people. Not enough to advocate anything for them in relation to their diabetes apart from staying alive and well.

So, how can anybody talk for others in regards to their health? I've had long-standing relationships with various HCPs and I wouldn't want any of them to talk with accuracy and conviction about any aspect of my health apart from the basics, especially my diabetes! I don't know about you, Reader but my T1D is constantly changing. It's why it's such an exhausting condition and possibly why so many feel they have to micro-manage it. How can any one person talk with conviction about the diabetes of others? It's rarely the same even daily.

This is where my problem lies with "diabetes advocates". Not all diabetes advocates. To some extent we're all advocates because we all want the best outcomes and care, I think! If you don't then there are probably bigger issues to address. I'm specifically referring to anybody who speaks on behalf of a community or group of people, about very specific aspects of their diabetes without speaking TO them first. Or perhaps speaking to a few select people and assuming their opinion represents the general consensus.

Don't speak for me until you've spoken to me

Twitter appears to be great at getting things wrong when it comes to assuming opinion. Do you remember all those polls from elections and referendums gone by? Yet, here we are. Brexit happened, Labour were trounced and Trump is doing whatever Trump does. It would seem foolish to assume a community on social media represent a much larger community of PWDs who don't talk about their health online.

What's the solution? Personally, I try to talk about my health, my concerns, my needs and how everything is affecting me. I think that's largely true of most advocates. They share their stories and how they think things could be better from their point of view. And that's amazing! That's true advocacy because it's personal. It allows for an empathetic response to anybody reading or hearing it.

We want...

You want, some of your friends might want and probably a few others you've never spoken to. Unless you've spoken to everybody or even an adequate sample size of people, can there really be a "we"?

We're all in the same boat!

No, we all sail the same stormy seas in different directions, on different boats. Some are similar. Mine has a lot of barnacles.

We all need pumps...
We should all be on a LCHF diet...
Everybody should be looping...
We all want Diabetic Dad to stop hoarding coffee...

Those things are just unreasonable assumptions based upon comparatively limited experiences. Especially that coffee thing! Send more coffee!

There are, of course, exceptions. We want good health and medications. We want insulin, obviously.

Thanks for reading.

Diabetes in Lockdown

There has been more talk of lockdown easing, recently. Reporters, struggling for questions, have been asking the government about lockdown easing for weeks. Perhaps they're just desperate for a haircut? I don't empathise. So, it might seem strange to write a blog about diabetes in lockdown when the light at the end of the tunnel appears to be getting larger. Keep reading!

I try to be a glass half full sort of chap. You may have gathered that much from my last blog post "Perspective". So while we've all struggled through since mid-March with various complaints and even contracting Covid-19 in some cases there are, I believe, many positives to take from lockdown.

How many of you are rolling your eyes and questioning my sanity?

"Positives from lockdown!? We're going crazy and everything is veiled thanks to my fringe!"

One big positive (debatable) is that you're reading this. So, you're alive! (not debatable) but there are others.

How many of you have started something new? or rediscovered an old love. I've started to play some online poker again. I haven't done so for over 2 years. I've even started to teach a few of you the basics in the hope you'll join in. Check out #GBDocPokerClub on Twitter if you're interested in taking part (it's not for real money) set up by Matt.

Take a look at ART1ST on Twitter too. I had no idea that so many people living with T1D had this much talent, beyond accurate carb counting.

Perhaps you played in the very first #GBDocQuiz last night? 20 people did and it was huge fun despite my shoddy efforts at being the Quizmaster. Serena will be hosting the quiz next time around. Install Zoom and join in. It's a totally inclusive thing. You're all welcome, 8.15pm on Thursdays.

There is a theme developing, as I write this blog; Twitter. The few things above are all babies of those who tweet. There are more:

Diabetes 101 - Incredible info and fun from HCPs, giving up their time for our community.
GBDoc Tweetchats - I'm one of the helpers here alongside Jules, Harvey, David and Gwynnie. Join in to talk about diabetes related subjects every Weds at 9pm.
Pricks Official - Jade has a YouTube guest every Weds at 8pm. Lots of fun and interesting chat.

Some of those things would likely not be happening unless we were in lockdown. As the light at the end of the tunnel nears, I truly hope such things will continue. Despite the worries, illness and increasingly long hair I believe the Diabetes Twitter community is as strong as ever, perhaps stronger than ever. There doesn't appear to be much in the way of bickering, subtweets are few and far between and I haven't noticed any full-blown meltdowns. Still time, I guess.

Your blood glucose may beg to differ (mine too!) but I think lockdown has proved beneficial for PWD, beyond minimising our chances of contracting Covid-19, by encouraging engagements with our peers. How the current situation has affected our mental health may yet to be seen, of course.

Tell me some of your positives from lockdown. Reply below or tweet me and let's keep those positives going when "normal" is back.