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.
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?
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.
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 →
They tell me it’s health literacy month and on October 20 health professionals are being called upon to pledge to “Drop the Jargon“-for a day. This is a good initiative and hopefully it will encourage doctors and others to pay more attention to how they communicate.
In an ideal world, every medical appointment should involve BOTH parties understanding and being understood. I’m not convinced about whether this is happening when I hear alarming stats that 60% of Australians have low health literacy.
“This means that the majority of people in Australia have difficulty accessing, understanding and using health information as well as difficulty navigating the health system.”
Really? I can’t believe how blithely this statistic is thrown around. Taxpayers are paying for a system the majority of us have difficulty accessing and when we do we can’t understand what we find there. Is this as good as it gets?
Health illiteracy seems to be a deficiency we label people with, but when the majority of a population are deficient it makes me think that the issue is with the health system (or perhaps the measures it uses?) more than the skills of its users.
I’d like to take the concept of “drop the jargon” and extend it a bit. I challenge health care professionals with the words of Albert Einstein
“If you can’t explain it simply, you don’t understand it well enough.”
What a lot of healthcare professionals there are who don’t understand what they’re treating patients. Medical education needs to pull its socks up.
Frightening isn’t it?
What do you think can be done to help those who run the health system to understand it better, so that they can explain it simply?
Heard lots of discouraging things about the danger of health information on the net? What about the dangers of NOT doing so?
The lovely “Endocrine Witch” posted this picture that had been doing the rounds on her Facebook feed. She has blogged about why she took on her colleagues to say she found the note offensive, thanks Iris, proof that many doctors are embracing 21st century technology!
I can imagine that it’s irritating when a patient comes to you convinced that they’ve got bubonic plague or smallpox, but you need to deal with it, it’s part of the job and whether it’s the internet or Dr Smith’s medical encyclopedia people always have and always will self-diagnose. Continue reading →
Eat healthy, lose weight, test basals, test boluses, count carbs, know GI factors, check bsl 10 times a day, cut down saturated fat, control your cholesterol, exercise, don’t sit…….
I know when I start to think about “improving control” there are so many things to think about you can either get analysis paralysis or then, who hasn’t suffered the frustration of enthusiastically launching into a get fit/healthy program only to hypo massively at the end of day one and your diet plans fade away amongst the detritus of emptied jellybean, biscuit and chocolate packets. Continue reading →