Social Media and Lack of Support For Newbies

I’ve just returned from my afternoon Covid-19 lockdown “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.

I hope you find this forum better meets your needs and expectations. While many of us on it do use pumps, and there are plenty of comments encouraging people to get them, there are members who point out that injections work just fine if not better for some people, and not to rule them out. I’ve found that while sharing experiences and suggestions, people on this forum are aware that each person needs to do what works best for them - and that for some injections work better than a pump. I haven’t seen much discussion about fingerstick testing here - I would say that unless they had too many technical difficulties with a CGM, most people here prefer CGMs and/or find them necessary and can’t imagine life without them, but some have gone back. But you have many years of diabetes under your belt, and I presume have studied the advantages and disadvantages of the various options. Many of us developed diabetes so long ago we recall collecting urine in a cup and applying drops of it to a tablet in a test tube to check the sugar in it - and we are still here to tell the tale - in my case I was finishing or not long out of college before the first BG meter came out😊.
You know that whether used in combination with a pump or injections, a CGM sheds additional light on our numbers to help us better manage our treatment and care. But the choice is truly your own and you don’t have to defend it to anyone so long as you are being responsible and safe, and as long as your awareness of hypoglycemia is intact and doesn’t start to decline. If people press you, you might be able to shut them down by saying your current regimen is working just fine, and you will consider other options if they become necessary - end of discussion.

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@alex_of_oz I am sorry you don’t like facebook, or you find it irritating or exclusive. This site has a single focus of self support for people with Type 1 diabetes. And while you’re looking around, I hope you find the site refreshingly free of advertisements that are jammed directly into your cranium every time you look at facebook.

I think no matter where you go you will find there are thousands of registered participants, but only a few willing to share their stories, or opinion, or wisdom. That’s almost universal in my experience.

I guess I miss the actual point of having an issue with a forum and not advocating change on that particular forum. Did you find this forum exclusive or dismissive of MDI?

As far as support for new participants, if it is to be it is up to me: If you take the time to greet new members, you can implement that particular change, and by doing that AND by participating and adding to the content here, you are making this site more inclusive, more relevant, and stand the chance of making the whole site better.

so, what can we help you with? are you ok?

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Hi Alex @alex_of_oz, I agree with your assessment of some social media sites, and truly hope that no-one is taking seriously much of what is posted. IMHO, many people post on the social sites wanting to promote themselves or a method, or to knock down some other practice or product. We even get some of that type posters here.

As you have learned during your time living with diabetes, and talking with other PWD like you, there are many methods for effectively managing diabetes while living full, active, and productive lives. My thought, let individual choose “best-fit”. I also agree that MDI is a very effective management tool - in 1975, long before digital glucose meters became available, I joined a team experimenting with that is now called MDI and figuring out how this could be used. Our work was the prototype for the Worldwide DCCT Study which launched MDI into everyday best-practice management. You will note on this JDRF TypeOneNation Forum, that I frequently advise AGAINST immediate pump use by newbies; you may notice how I cringe at “get a pump” postings to the newly diagnosed. Note that, I’m currently using an AIDs [which requires an iCGM] with my fourth insulin pump; I got my first pump after 47 years of injections, and the majority of those years without finger-stick BGM assistance.

It is apparent that pump sales is expanding; for your research, you could contact the pump manufacturers and get their data - including how many of the pumps are provided to persons with other than autoimmune diabetes [T1D]. Then, of course, collecting sales data for a number of consecutive years will not provide information of the number of persons actually managing diabetes with a pump.

As far as support, I didn’t meat another person with diabetes during my first 20 or so years. I did have family about me who understood what I was facing, and didn’t do me any harm. Later, when I decided to take this condition seriously I began studying all management aspects, volunteering my body to to the research doctors [many “trials”], and I began teaching the medical professionals; as you probably know, living with diabetes teaches more than any medical tome. I expect on Monday when I’m face-to-face with an endocrinologist, she will ask “what are you going to teach me today” - then we will review my health management.

What can you do? Be proactive, and supportive.

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Thankyou Dennis for your reply. Interestingly, I have a similar relationship with my endo. When we first met and were “learning” about each other, I told her that I will teach her about living with T1D. She scoffed a little at the time, but has since acknowledged that I have taught her some about what it is to live with T1D 24x7. Even in my last visit 2 weeks ago, which was conducted over the phone because of Covid-19, I mentioned to her that I’ve had 46,000 injections. She was surprised and asked about that, so I explained that at 4 injections per day for 46 years, I’m actually understating the number. Of course in the first years I was only on 2 per day, but she got the point. Then she said that she had never actually thought about that and it was quite a confronting thought. So even the experts, and she is one, sometimes struggle to comprehend what we live with.

The main point that I was making in my post above is that, compared to the help we received when we were diagnosed all those years ago, where I spent a week in hospital as they taught me what I needed to know, people diagnosed now are not given anywhere near the same amount of information and help. It appears that the personal care and education has been outsourced to 3rd parties, like Facebook and other social media. And then when new people are faced with the sort of rubbish that those places sometimes have, they don’t know any different. So ultimately they get a deficient, or even negative, impression of what ongoing assistance is going to be for the rest of their lives. Pumps, pumps, pumps, closed loop, closed loop, low carb, low fat, CGM, pump. But what about how many carbs there are in an apple, or the importance of a balanced diet.

Similar to you, I misbehaved for my first 20 years. I was young and apparently invincible. But at least I had my early education from the hospital to get me through that time, until I finally grew up and faced the reality of T1D. What I see now for the newbies often has a brand on it, always has a label, but rarely has a grassroots explanation. Put the batteries in and follow the instructions, but it’s not important to understand what is happening. And all bets are off if it’s got the wrong level of Bluetooth. Shudder.

That’s what needs to change.

Hi Alex,
I have an alternative view based on 70+ years with T1D. My life changed dramatically with my first pump decades ago. I have been supported by Diabetic educator nurses, some of whom used pumps, Diabetic educator dieticians, and by endocrinologists (one of whom told me that I knew more about the pump than he does). I did not see 4-6 injections a day as anything other than the treatment method offered me to live, but I was willing to try something new and, for me, it has worked well.
With regard to sourcing for information regarding the treatment and management of T1D, I am happy to say that Facebook is not a source of useful information.
I am in agreement with Dorie, Joel, and Dennis, their gentle messages, and their offer to provide support from other people withT1D.
Thank you for adding to the content of this forum.

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