Through the window the last rays of sunlight are disappearing, the waiter stops by “Now you can see each other” he says, putting the flickering candle down between the glasses and the pate. There’s a momentary pause in our chatter, “You have no idea how true that is” Maryanne responds. I nod and toast my thanks to modern ophthalmology as I take a sip of wine.
Maryanne lives in Brisbane, I’m in Sydney and it’s been difficult to organise this catch-up drink. M is visiting Sydney for a conference, the weekend she arrived I was in Melbourne for my own conference so we’re meeting for an afterwork drink on Monday night. We skip lightly over the last 15 years, within a few minutes we’re talking about our eyes. Drawn to share again those dark experiences that nobody else really understands. Those years with impaired vision and the threat of blindness. We were young then, now we’re middle aged and feel as though that experience could have happened to someone else. We talk about how that fear influenced the decisions we made and the lives we led back then though and how that’s impacted on where we are now.
Next we’re discussing whether or not we should undertake PhD studies and career changes. We know that if our eye problems had happened 20 years earlier we wouldn’t be sitting here, able to see each other, able to drive and contemplate more post-grad study. I feel more able to envisage the future now than I could as a younger diabetic, I worry about what things this disease can still throw at me but so far I’ve survived its best efforts. If you happen to be deep in the trenches fighting retinopathy or some new complication, take heart, treatments these days are excellent and there is plenty of great life on the other side.
It’s now dark outside and the windows have turned into mirrors. I look up and see my reflection, I tell myself I’m doing okay for almost half a century of diabetes.
“All things shall be well and all manner of things shall be well.” Juliana of Norwich
In the midst of the launch of the UK’s statement about language and diabetes (good to see them catching up with the pioneering work of Australia on this) I’ve been thinking about the sort of communication that I’ve found most helpful around diabetes. Here are some of the things that have stuck in my mind as being really helpful over the years. Continue reading →
The other day somebody innocently tweeted that diabetes management was a team effort.That got me thinking and although it’s dangerous to push metaphors too far I don’t believe thinking of diabetes management in terms of a team is appropriate or helpful.
The team analogy implies that everyone has a role to play at all times and most importantly that everyone shares the joys of victory or the bitterness of defeat. This is simply not true. It is me and me alone who feels the hypos, the highs, the fear and reality of complications. Every finger prick, every needle, every blood test, dilated pupil exam or pump site change is felt by me alone. It is me who savours the ‘victory’ of a straight line on the Libre after eating pasta or the relief of a ‘clear’ complication screening. The closest I come to sharing this is the empathy in the diabetes community when rejoicing or commiserating with those of us who know exactly what it’s like. Continue reading →
Inspired by some of the anxiety I have witnessed at health conferences/talks recently around filtering health information, I thought I might turn the tables a bit. Sure we all know we need to evaluate health information on line but what about the health information we receive in consulting rooms/surgeries or hospitals. We all know it’s out there from missed opportunities to diagnose t1 diabetes (sometimes leading to death), to hospitals omitting insulin to not knowing cortisone injections will cause insulin resistance. All this and more happens every day in the offices, consulting rooms and hospitals. How to protect yourself?
The psychosocial aspect of diabetes is a bit like the weather everyone’s always talking, but nobody does a thing about it. Such was my view preceding DX2 Melbourne where I was one of a cast of thousands participating in a webcast about mental health and diabetes.
The consensus view (I think it was unanimous) was that psychosocial care should be normalised as part of diabetes healthcare. I agree 100% with this. I recommend Renza’s post at Diabetogenic about the webinar and particularly the importance of ending the stigma around mental health. Frank of Type 1 Writes was also on the panel and has written insightfully about this topic too. The focus of the panel discussion was on seeking help at times of distress but I’d like to take things one step further than this and talk about
It is my contention that not only does standard diabetes care fail to heed prevention strategies for psychosocial distress but it actually causes or exacerbates mental health issues in people with t1 diabetes.Continue reading →
I recently came across a health/medical article that expressed concern about the level of variation in paediatric diabetes treatment between different paediatric endocrinologists. I thought the assumption that there was one best practice approach interesting especially in light of the statement, Continue reading →
I was one of the many pwd who was stunned back in 2015 when the UK’s National Institute for Clinical Excellence (NICE) issued its Guidelines for Type 1 Diabetes in Adults. These guidelines recommended a “target” HBA1c of less than 6.5%. The previous target was 7.5%
What I found stunning was that so few people managed to achieve an a1c of 7.5% or less and yet here they were setting an even lower target. For the record -the UK National Diabetes Audit showed that 29% of adults with type 1 recorded an a1c <7.5% (or 58mmol in the new measure) in 2015/16 AND fewer than one in fifteen (i.e. less than 10% of pwd) recorded an a1c of less than 6.5%.
It makes you wonder what exactly is the point of setting this number, what does it mean and is it sensible to set a target that appears cannot be achieved by 90% of people.
Is there such a thing as enough in diabetes management?
Your A1c is too high, you get it lower and your weight increases, you exercise more but the resultant highs and lows lead to an increased A1c. I know of people who’ve been told their a1c is too low, they’re at risk of hypo unawareness. You change your diet and you get more lows and for no known reason your lipid profile becomes crap and so on and so forth.
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.