Before I attended ADS-ADEA’s Annual Scientific Meeting I did a little survey of what people with diabetes were most interested in hearing about at conferences. As the survey was largely completed by my friends in the D world, it is unsurprising that they were almost entirely type 1s and most had had diabetes for at least 20 years. The topics of most interest were new technology, research with only a few more saying stuff that was relevant to life with D now as opposed to the cure and psychosocial issues. Many people also said the main benefit to them of attending D conferences was the opportunity to socialise with other people with diabetes.
So here’s my best effort at rounding up the categories of most interest from ADS-ADEA 2017:
Do you hear any sensible person saying things like
“Don’t look at any television news/read the newspapers or news magazines because they’re full of false information and negativity.” or
“I never go to parties or social gatherings because they’re full of negative people or somebody might say something that’s untrue to me.”
No? Funny that neither do I. Of course the simple and obvious answer to comments like that is to choose your media source and/or your social events more carefully and be discerning about what news or information you view as credible. Continue reading →
It’s always great when a piece of research confirms what you know to be true but others have doubted. It was super good timing when I came across this great finding published just a couple of weeks ago in the Journal of Internet Medical Research, 2017, August 17 19 (8):e 280
Engaged patients increase information flow, expand propagation and deepen engagement in the conversation of tweets compared to physicians and scientists.
These and other great questions and insights have been occupying my mind since I attended a conference for online health advocates on the weekend.
We’ve come a long way baby!No longer content to be dismissed as irrelevant unless we agree to be nothing more than amouthpiece for professional organisations (be they doctors, hospitals, pharma or professional disease corporations like DA) advocates are telling their own stories, connecting supporting and empowering each other and advocating for what ‘we the people’ really want. Slowly but surely advocates are bringing the voice of the ‘patient’ into the dialogue of health care and we are seeing we DO make a difference. It was wonderful to share our experiences and to see how much we had in common. It was great to catch up with other members of #ozdoc!
Diabetes is different I may be biased but diabetes advocates rock. I got the impression that those of us in diabetes were across the issues and had loads of experience in the social media space already whereas many other conditions/diseases were still just dipping their toes into the social media space in Australia. I think where we differ from most other conditions is the sheer volume of treatment decisions we make every day. So often (and again at this conference) the patient voice is presented as though it is competing or trying to replace medical information. In diabetes that’s just so yesterday. Treatment is in our hands and the minutae of basals, boluses, mud cake and triathlons is beyond healthcare professionals anyway. Sure, we shouldn’t give medical advice but I have often spoken of what worked for me and I can’t count the number of times I’ve decided to try what somebody else says has worked for them. I really wish doctors would realise we have no interest in competing or trying to supersede them.
“Fear and humiliation and shame are terrible things to live with.” Luke Escombe
Luke is a musician, comedian and advocate for Crohn’s disease. His speech was both really funny and inspirational. The quote above is powerful in that I think a lot of people with medical conditions live with fear, humiliation and shame. Be it because they have an ostomy, look different in some way or perhaps they don’t achieve the level of diabetes management that some random doctor or nurse feels is appropriate. Let’s all support each other in standing up against fear, humiliation and shame AND speak up for people who don’t (yet) have a voice.
*Use your vulnerabilities as a Superpower Nick Bowditch was inspirational in encouraging us to reframe our stories. He shared that he struggled with depression and addiction BUT he reframed this to tell us he has incredible empathy, he was aware of his vulnerabilities and because of that he could see ours too and (here’s the killer)-he doesn’t care that we have vulnerabilities.
There’s enormous power in that reframing, in turning the tables so to speak on those who might judge him for what they perceive as weaknesses.How might you reframe your story today? (I don’t just mean in diabetes but to reframe any of your trials, sadnesses, grief or vulnerabilities so that you can tell a different story). Often you have to go through bad things, failure, loss etc in order to discover your superpowers. As Nick said:“Fear, pain, grief etc are gifts wrapped in s#1t!”
Janssen-Cilag Pty Ltd paid for my travel and accommodation expenses to attend this conference. All thoughts and opinions expressed here are solely my own and do not reflect the thoughts or opinions of Janssen or J&J.
I think many of us are feeling sad to hear of the death of type 1 celebrity advocate, Mary Tyler Moore(MTM). She was diagnosed with type 1 at the age of 33 and died on January 25 at the age of 80.
I remember reading about MTM having diabetes when I was a kid and there were articles written about her in Conquest (or whatever it might have been called then). She was slim and glam and despite being a tv celeb she always seemed more real to me than the other diabetics I read about in Conquest. These featured diabetics were invariably suffering fairly awful complications OR were male athletes. MTM as a smart savvy independent woman (who can tell where roles and reality merged or separated) was a perfect example of somebody just trying to get on with diabetes to me. I recall reading her say that having a condition that didn’t make her feel ill meant that for some time she ignored it and sat in her car eating donuts. It was the first time I’d seen something like that in the po faced articles that appeared (and still do as far as I know) in diabetes mags. Her honesty coupled with the hint of the mind games that are at the heart of diabetes was such a refreshing hit of reality, one I wouldn’t see again until the advent of the internet some 20 years later.
The type 1 community also owes MTM a debt of gratitude for her advocacy work over many, many years. It would have been easy for her, particularly when first diagnosed, to conceal her diabetes in fear that it would jeopardise being cast in future roles. Instead she chose to be open and honest-and perhaps that is an even greater thing than her work with JDRF.
My favourite recent quote from Mary is from an interview with People Magazine in 2009 and it is something that I wish all of us with type 1 can say:
“There have been challenges, but I’ve triumphed.”
Vale Mary Tyler Moore, may you rest in peace and rise in glory and may light perpetual shine upon you.
I’ve said it before but it needs to be said again because I had a conversation with someone today who was made to feel bad/shamed because the amount of sugar stuck to their red blood cells was more than the doctor would have like. Being made to feel bad isn’t going to help anything.
This update from Diabetes NSW came across my linked-in feed the other day.
Yes, indeed in 2016 a GP has indeed been given tools for dealing with “the non-compliant avoiders” by the state body supposedly helping people with diabetes who see fit to boast about it.
Diabetes Australia’s language position statement was published in 2011. It is a particularly well-considered and helpful document in my opinion. What I particularly like about it is the way it delves beneath the words to examine what the choice of particular words displays about underlying attitudes.
Use of the terms ‘(non-)compliant’, ‘(non-)adherent’ is particularly problematic. Such terms characterise the individual as cooperative or uncooperative, especially when used as adjectives to describe
the person rather than the behaviour. Using these labels can mean opportunities are lost to ask relevant questions, develop collaborative goals,
tailor treatment regimens and make referrals that actively support the person to manage his or her diabetes. Attempts to increase ‘compliance’ and ‘adherence’ generally involve persuading the person with diabetes to change his or her behaviour to fit the health professional’s agenda Diabetes Australia’s 2011 Language Position Statement
Not only has a General Practitioner come out of DNSW’s training talking about “non-compliant avoiders” but DNSW are, boasting about it and giving medical professionals “tools” for dealing with these people. How very sad it is that Diabetes NSW is promoting the use of the very language deemed inappropriate (for very good reasons) by the national body’s position statement.
Sad days indeed for those of us with diabetes who have to interact with such attitudes!
So English endocrinologist Partha Kar asked on twitter if self-administration of insulin is always appropriate.
It got me thinking, when ISN’T it appropriate? It seems to me that when you’re diagnosed with diabetes you get some fairly rudimentary education and then you’re sent home to calculate dosage and administer a potentially lethal drug. Multiple times a day, day-in-day out we do this.
So where do health care professionals get off declaring us incompetent to do this and denying us our basic rights when we are inpatients in hospital? Continue reading →
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?