I’ve just returned from my afternoon “Let’s stay healthy” walk. Today my mind was off in thought bubble land, going in whichever direction it wanted to, and I started contemplating how things for T1D have changed over my 46 years of living with it. Sadly, one of the prevailing thoughts in 2020, and this shouldn’t surprise you, involved Facebook groups and how they affect the conversation.
Over the years, initially related to raising awareness through my mega walk across The Sahara, I joined a number of T1D groups both on Facebook and in other forums as well. I was new to the world of online forums and eventually found, to my surprise and sadness, that they didn’t work by the well established rules of polite society. I backed away from them after returning from The Sahara, and didn’t bother again until about 5 years ago. I’d learned some lessons and decided I’d give them another go.
One of the surprising things I learned from watching the to’ings and fro’ings on these groups was that most members rarely say anything, preferring to sit back and watch. Another thing I learned was that those who do say stuff in these groups are often the ones who are passionate about a particular subject.
I came to realise that most of the posters were working on the idea that most people with T1D have progressed to using a pump. But let’s just summarise by saying, have progressed to using modern technology to help them manage their T1D. This includes a pump, CGM (Constant Glucose Monitor) and various combinations of these. But, as time progressed, pumps and CGM’s were dominating the conversations, to the exclusion of grass roots management topics, such as injections, dietary topics and manual testing. There were other “Topics de Jour”, such as low carb diets, keto diets, vegan etc etc etc. But the main discussion centred around pumps and CGMs.
Being of the old school, with 46 years under my belt, I was curious about this. I mean, could this be saying that I was way outside the modern standard approach and therefor should consider my options? I’m not closed off to new thinking, and certainly am humble enough to change my approach if the reasons were significant enough. Yes multiple daily injections and manual testing had done me well for all this time, but let’s not over look the possible.
So I set about finding out what percentage of people in Australia living with T1D were now on a pump. I thought that would be quite straight forward, so I contacted JDRF and asked them. They were intrigued by the question, which in turn intrigued me, and they set about finding out. They got back to me to say that the answer was difficult to get, but they had determined that, as of 2016, 15% of people living with T1D in Australia were using a pump. Of course this means that 85% weren’t, and are therefor on the same management regime as me. Jump forward to 2020 and that 15% will have grown, so let’s be ambitious and say that 30%, no, let’s say 40% are now on pumps. That still means that 60% aren’t. So the monochrome discussions in the Facebook groups are overlooking what is important to at least 60% of the potential audience.
When you combine that sort of figure with the attitude that was being directed to people who had the audacity to try to introduce another angle to the topic de jour, like me, I was less than impressed. I spoke up politely a number of times to try to balance the discussions for the sake of the silent majority, who by now we knew were predominantly using MDI and manual testing, but to no avail. If I wasn’t a fervent supporter of closed loop pumps and CGMs, wasn’t on a strict low carb, vegan / keto diet, and didn’t check my BGL via bluetooth on my high-end phone that could show it to me in a 3D hologram, then I simply wasn’t with the game and obviously needed to get a life.
So I left that group.
Then there was the group where, because I happened to post a sad news story about a young fellow in the USA who had died because of low BGL, I was told that it wasn’t appropriate. That was an eyebrow raiser for me, because the reason that group existed was because of exactly that reason. And as this was not long after the previous run in with the vegan / keto / pumping / you-get-the-picture group, I chose to simply leave that group as well.
You see, after living for 46 years with T1D, having walked across The Sahara, and being healthier than many people my age who DON’T live with T1D, I don’t feel that I need to justify myself to any zealot who has a chip on their shoulder and an axe to grind. I’ll continue to have my multiple injections each day and my manual testing. I’ll continue to eat my meat and 3 veg, served up in such a way that I know how much carbohydrate is on my plate. I’ll continue to actively manage my T1D in the way that I was taught by the doctors and nurses all those years ago, while shaking my head at the sad loss of what could have and should have been such a wonderful thing for people to support each other, but which has turned into a cesspit of zealots and bigots who are hell bent on yelling their opinion at you until you submit.
I feel sorry for the newbies who have been diagnosed in the last few years. They do not have the same level of support that we had all those years ago.
Instead they have Facebook. Oh dear, oh dear.