It’s Day 2 of Diabetes Blog week and we’ve been asked to talk about the other half of diabetes, the psychological side of diabetes. There’s already been some great posts from a personal perspective about this, for example, Georgie’s blog at Lazy Pancreas or Tim’s blog. For the full list click here.
I’d like to talk about the psychological harm some diabetes organisations are imposing on the very people they’re supposed to be helping-those with diabetes.
We’ve all seen those ads based on fear, the horror stories of complications and the frightening statistics telling us to avoid or “manage” diabetes. Frank blogged about this last week, Type 1 Writes.
So what’s the problem, shouldn’t people avoid diabetes and/or avoid complications? Well yes, and if doing either of those things was as simple as giving up smoking then the campaigns might be justifiable BUT it’s not that simple and that’s where the problems start. You see, if you get a terrifying message and yet you have little power to change the situation that gives rise to the terrifying consequences then you are likely to act in a negative way.
So if you have type 1 diabetes there’s nothing that can be done to reverse it and despite even the most diligent efforts and best technology it isn’t possible to entirely normalise blood sugars. In these circumstances the research supports that these fear-based messages cause people to engage in negative or health-defeating behavior. See for example, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3678850/ , and Goldenberg J.L., Arndt J. The implications of death for health: A terror management health model for behavioral health promotion. Psychological Review. 2008;115(4):1032–1053.
So these fear messages have a negative effect on people with diabetes. It appears that diabetes organisations such as DiabetesNSW who have recently been unapologetically tweeting mortality statistics without any context or background either ignore this or they are quite happy to cause harm to the people they’re supposed to represent in hopes that they are having a positive impact on those who are at risk of diabetes.
Is this ethical? Are you happy to be a member of, or have your tax dollars support such behaviour? I always thought the first principle of intervening in health was “do no harm”. Guess they’ve abandoned that notion. Shame.
So I hear it’s diabetes blog week, and I’ve signed up to take part (a little doubtful if I’ll post every day but I’ll try). The topic for Monday is
“Why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? “
I remember the days before the internet diabetes information was mediated by “experts” who had never lived a day with diabetes in their lives. Nearly everything was written as though you were a type 2 of about 70 years of age and with the same number of IQ points and the assumption was that you could spend your life testing your bsl, weighing food and looking at your feet. “Real people” living with diabetes came in 2 varieties, elite sportsmen (really don’t recall women) or those with the most extreme combination of complications who gave grim warnings about wishing they’d listened to their doctors and taken more care of their health. Oh and Mary Tyler-Moore was her very own variety!
On a quiet day at work back in the 90s I started googling diabetes and stumbled across a black background emblazoned with “bored? frustrated? got type 1 diabetes? Me too!” Hell yeah that was me, I could have kissed the computer!. As I explored the site there were real, young adults with type 1 diabetes and they were just like me. It really isn’t possible to keep your sugars between 4 and 8 all the time despite what the experts tell you and this much touted “normal life” isn’t all that normal! I knew that and finally here were people to confirm and validate my experience, hallelujah! The sheer joy of ending almost 30 years in the diabetes wilderness feeling inadequate and disempowered is indescribable. It’s easy to take all that for granted now that there are 100s of websites, discussion forums and Facebook groups devoted to diabetes but I’ll never forget the sheer joy of connecting with people like me for the first time. I immersed myself in the RealityCheck, later the Type 1 Diabetes Network community.
So for me I’m here blogging, tweeting and posting on Facebook and elsewhere because I believe sharing experiences with other people with diabetes is vital and that the voice of people who live with diabetes needs to be included in the healthcare debate. The message is that WE matter and our voices are important, no matter if we occasionally.
I have lots of messages but here’s one of the big ones in my opinion.
Why do you participate in the diabetes community? What messages would you like to share?
I’ve just spent the last 24 hours with people who also happen to have diabetes, specifically people who blog and/or are active in the diabetes social media space. We met because Abbott invited us to trial their Freestyle Libre, which has just been approved for use in Australia. Yes this was a marketing event, no I have not been paid to write about it. My travel and accommodation expenses were covered by Abbott and I was given a reader and 2 sensors but I am under no obligation to blog or otherwise write about or comment on their product.
I offer some information and my very limited experience of it in hopes they may be of interest to readers interested in new technology. Continue reading →
So I shared a bit last week about what patient inclusion isn’t. So now it’s time to think about what it is. I believe patient inclusion will look different in different contexts, so including patients in their own care decisions can and should be done directly and in every circumstance (although from a comment on last weeks blog it appears we aren’t there yet.)
Including patients in things like health policy, conferences and the decision making processes of diabetes organisations is a bit more complicated. Continue reading →
There is a lot of talk about including patients. You’ll see it in hashtags like #ptsincluded and in sayings like “Nothing for us without us”. What does it actually mean and how can it be implemented? This week I’m thinking about what patient inclusion ISN’T.
The best example of what it means to EXCLUDE patients comes from Diabetes UK’s Diabetes Professional Conference. Continue reading →
Diabetes advocate Kelly Kunik has come up with the inspired notion of Iwishpeopleknewaboutdiabetes It is a great concept and lots of people with diabetes have jumped on board with posts and tweets about what they wish people knew about diabetes. They range from the comical to the poignant with every emotion in between. The power of the messages is in how real they are, people with diabetes, telling it like it is and through that we share a camaraderie. I nod knowingly at each of these, it’s nice to know that others feel the way I do.
Just when I thought it was safe to watch tv and hang about on social media my twitter feed became festooned with comic book images of super-heroes “beating” diabetes and the tv news was throwing about words like ‘diabesity’, ‘epidemic’ and ‘complications’.
Every day 100s of pieces of diabetes-related research are published and disseminated through cyberspace. In most cases they vary from the ludicrously irrelevant to mildly interesting but in very rare circumstances there is something potentially revolutionary. I just read a study that falls into the latter category for diabetes management.
A recently published study* of 800 non-diabetic people fitted with CGM found that
“Surprisingly, the foods that raise blood sugar levels differ dramatically from person to person.”Continue reading →
So way back in April (wow time flies) I blogged about launching my low carb experiment. I was trying for ultra low carb because I’ve always been a bit all or nothing. I recognise for a lot of people it seems to work well, although I note that it seems to be men who really thrive on this regime. For me, despite perservering for some weeks, and despite the advice that this too will pass from low carb advocates I don’t like living with: Continue reading →