In 2017 we are living in a world connected by social media and the Internet. Most of us have 24/7 access to it, it’s in our pockets, on our TV’s, on our game consoles, on our tablets as well as on our good old-fashioned PC. How is it then that the vast majority of people reading this blog will be living in a bubble? We are isolated from the reality of a situation, believing that everybody must be doing all of these things you are reading about. Speak with any HCP in diabetes and they would tell a completely different story to how we perceive diabetes within our bubble.
Are You Living In A Bubble?
If you are a regular on Facebook or Twitter, with a particular interest in a subject (diabetes in my case) then you will be living in the bubble. All of those people who you interact with on a daily basis are all on there for the same reason you are. We are all on there to interact with our peers, find out about the latest developments from the pharma companies, see what new tech people are using, learn about the latest way of eating, to share our successes and see how other people are living day-to-day with diabetes. The best thing about all of this is the new friends we are making along the way. The side effect of this is we assume ALL diabetics are the same as we are. Pro active and knowledgeable in our approach to ouŕ diabetes management, sadly not the case. This is the bubble I am referring to.
Diabetics In The Bubble
So if you spend a decent amount of time roaming the world of TwitBook you will know exactly how life is for diabetics right. If all these people are posting this then it must be the standard for diabetics in the country, think again!
If you have a look through social media you could well find yourself drawing the conclusions below:-
Low carb food is the only way to control diabetes
A search of Instagram and you could be forgiven for thinking this. Low carb lifestyles are pretty intense, and although they are a great approach to diabetes management they are not the only way. The DOC is great because we are all in this together and that means there isn’t any judgement made.
Just ask ➡ Grumps on Twitter, he manages life pretty well and has been known to eat the odd carb!
Everybody has a device which tells them their blood sugar levels on their smartphone or smartwatch
Flicking through Twitter you could be forgiven for thinking that everybody uses a CGM these days. Sure a lot of people are using them and they are a great tool for us but they are not for everybody.
After all the vast majority of people in this country, can’t afford to fund around £1,500 a year for continual use and NHS funding is sadly lacking in all departments so CGM from that source is not likely for most PWD. Just because you do not use one doesn’t mean that interacting with those who do isn’t a good thing. Any CGM user will happily share and discuss experiences. All those who do not use, or cannot use CGM still have a huge input into the DOC.
Nobody injects insulin anymore
The number of pumpers in the UK is nowhere near as high as the bubble would have you believe. The vast majority of Type 1’s are using injections to manage their condition.
Pump users do seem to be the norm on social media, however, pumps do not suit or appeal to everybody and MDI can offer great control. Advice from both sides of the pump/MDI debate is right there for everybody within the bubble. Adrian Long, a legend of the #GBdoc blogged about his love of MDI ➡ Adrian’s Blog
Most people have an artificial pancreas which just works everything out for them
Wrong and wrong again. There are a few people out there who are pretty much geniuses. They have developed an automated closed-loop pancreas system. ➡ Tim,s blog will explain this a million times better than I ever will be able too. Even with this system, an element of user input is needed, on top of the fact you need to build it yourself that is! Within our bubble, this seems like the norm these days, and that is a big part down to the great blog that Tim has done. It shares with us all the work he and the #wearenotwaiting movement on Twitter and the Nightscout people are doing too.
These people are not normal, they are at the cutting edge of what’s possible in 2017, without our bubble I would not even be aware of their existence or the innovative work they are doing.
Fiasp is the best thing in the world
The bubble has been awash in the past 3 weeks with the latest insulin to hit the market. Although an exciting development in the world of pharma, it is a long way off of most PWD prescriptions yet. A few people within the DOC are using this and documenting it for us all to learn from, a resource which is great. Once again Tim is at the forefront of this ( ➡ Tim’s blog is doing well from this post ) on his site, and it makes for interesting reading.
Endo appointments are always a breeze
Within the bubble, we often see reports of great visits to the Endo, the sort of visit where your Hba1c is under 6% and everything is rosy. This to me is a good thing, whenever people share this type of post it is always met with praise by the DOC. The reason we praise is because we know how hard it is to get Hba1c in that range and how hard that person has worked to get there. I know that many other people have clinic appointments from hell and these are shared too, there is always support and the chance to learn something from our peers.
Everybody is always analysing their data
The photos of dead flat lines and great : arrow: Diasend uploads are pretty common in the bubble. Again people are sharing these, me included because we know how hard we work to get that picture.
It isn’t a magic spell which gets it for us, it is hard work and takes its toll. You look through at the comments of encouragement from others and make of that what you will.
People are always at conferences
Within the bubble, there is always a conference or an event in the offing. JDRF discovery days, Diabetes UK events, TADtalks, GBdoc conference, Diabetes UK Professional conference there is always something on the horizon. Outside of the bubble getting to hear about these events is difficult. It’s not like letters are sent out to every diabetic in the country inviting them. Without the bubble, many people are missing out on these great events
Diabetics are always having meetups
Social meetups, arranged by diabetics for diabetics are becoming more and more popular. To me, these meetups are an essential tool to the management of my diabetes. Essential for my social life as well to be fair! Without this bubble we are within getting the word out there to other people with diabetes is really tough.
I have heard of a group in London who arrange regular meetups, pretty popular so I’m told ➡ T1D London Meetups Group
We are always online
Well somebody always is. Twitter, Facebook, Instagram or diabetes forums at any point during any 24 hour period there will always be somebody there with you. Where else are you going to find support like that?
People never change lancets
Well, I will give you that one! Come on be honest when did you last change yours!
Now for me, and for the majority of my diabuddies, this is the norm. The reason it is the norm for us is we are engaged with our diabetes. We’ve been dealt a hand and have approached it head on. Taking a full-time active role in our OWN diabetes care. We are going out of our way to engage with others and to learn from our peers. After all, nobody knows diabetes as well as another diabetic. All the daily struggles are the same for most of us, and that is what gives us an unspoken bond. Nowhere else in my life have I experienced meeting a complete stranger and within minutes of chatting feel like you have known them a lifetime.
Sadly us living in this bubble are not representative of the diabetes community as a whole.
Help To Pop The Bubble
This is a huge challenge, overcoming this would help so many people. The majority of people with diabetes in the UK do not engage with their condition. At least not in the way social media would lead us to believe we do. Without the knowledge and help of others in the DOC, I do not know where I would be in my diabetic journey. I am forever grateful for the friends I have made within the DOC, both in the real world and in the online world of TwitBook.
I am trying to help raise awareness of the existence of this community in every way possible. It would be great if you are reading this and can think of ways to make people aware that so much support and experience is available to all right here 24/7
Tell your DSN about it
Tell your GP about it
Tell your Endo about it
Tell your Dietician about it
Tell your friends about it, they are bound to know somebody with diabetes
Tell your Nan’s, Sister’s, Cat’s pet fish about it if you think it will help
If enough of us do this hopefully the message will filter through. There are thousands of people dealing with their diabetes alone.
I would love to be able to get everybody to engage with their diabetes the way many of us do. Sadly I fear that is a long way off of happening. I don’t know the number but I bet thousands of people are not on the social media platforms. They are missing out on so much support. If we could let these people know about the peer-to-peer meetups. This would be a start and a big help to them I feel.
If you have any ideas about how we could help open this up to as many people as possible please comment below. I look forward to hearing your ideas.
Take care, the DOC is always there
2 thoughts on “Popping The Bubble”
I agree somewhat. But why should everyone be on social media? Many people have no desire or interest in it. Also, some of your points don’t make sense. There are as many pictures/stories about people eating carbs as there are of low carbing. And a teeny tiny percentage of posts about Fiasp and artificial pancreases. I think you got a bit carried away with some of the topics in the post….The point, I think, is that what we see of diabetes on social media is the pro-active diabetics who typically do exercise, use pumps, test their blood sugar, have good knowledge, and are generally doing OK. It’s a warped view of the diabetes world. But the solution isn’t to make everyone join social media. The solution is to address the grass root problems of lack of education, lack of confidence, and lack of pro-activity to self-manage.
Thanks for the feedback much appreciated. The points you raise at the end of your post are valid and was the point I was trying to make with the blog. Us users of social media are in the bubble and as you say have a general good grasp of diabetes and all the trimmings which come with it. It is how we can reach out to those not on social media with the information and knowledge which interests me. All stems from last night’s Tweetchat, a few points were raised so wanted to get it blogged today