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“…but I have triumphed” Vale Mary Taylor Moore

Melinda Seed writes for Twice Diabetes

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.

 

 

My Big Fat World Diabetes Day

I’m going to tell you something most of you know but I’m reminding you because you probably didn’t hear it on World Diabetes Day but you should:

PEOPLE WITH DIABETES ARE AWESOME

img_1916On Monday, the actual WDD I was honoured to go with Jane Reid and her husband John to the Sydney Kellion awards to celebrate Jane’s 50 years (it’s actually 51 years) of kicking diabetes butt.  In her short speech, Jane acknowledged how much the D online community, particularly Reality Check had helped her-I can’t agree more with this, it’s made such a difference to my life with D.

As well as Jane there were a handful of others getting medals including some 60 and 70 year medallists. There was a man who got his 60 year medal -BUT he was diagnosed when he was 31-do the maths. That’s a really impressive innings, he still lives in his own home and does his own housework.  There was also Mary who got her 70 year medal, awesome effort and just to show that age is no barrier to feeling stigmatised and at risk in medical situations because of confusion-Mary took to the stage and amongst other things, advocated for a name change to clearly distinguish different types of diabetes.

91 years old & type 1 diabetic for 60 years! Well done Sir!
91 years old & type 1 diabetic for 60 years! Well done Sir!

After a glass of champagne with Jane and John (at a bar of course, no refreshments were provided at the function-you think they could sling you a cup of tea and a Tim Tam after 5 decades with diabetes) I jumped on a plane to Melbourne.  I was really grateful to receive a complimentary registration(scholarship) for the Mayo Clinic’s Healthcare and Social Media Summit. It was awesome that of the 5 scholarships, 2 went to type 1 diabetes advocates (me and Renza Scibilia from DA) and Kim Henshaw who many of you will know from Ozdoc gave a presentation at the Summit. So yeah, us type 1s rock.  It was a little disappointing to see that the only unhelpful language at an otherwise great conference came from a presentation about diabetes 🙁 but how lovely that as Renza, Kim and I looked at each other in horror, before we could get fingers to devices, the lovely (non-diabetic) health and appearance advocate and fellow scholarship holder Carly Findlay Morrow was rightly protesting inappropriate and stigmatising language on behalf of all consumers. Thanks Carly, love your work.img_1980

I met so many great people at the conference, some of whom I had met via twitter but it was great to talk with in real life.  I was reminded of what a long way healthcare and social media has come since the late 90s when I first got involved and also of the power of connectedness and how much stronger each of us fighting in our small corners can become when we support each other. A very big thank-you to the Mayo Clinic and Consumer Health Forum for enabling me to attend.

I’ve always felt the type 1 community had my back, it was nice to see and feel that extend across the spectrum of health ‘consumers’ and within sympathetic parts of the professional community. The revolution is well underway, let’s keep it coming!

DNSW’s Tools for “Non-compliant Avoiders”

This update from Diabetes NSW came across my linked-in feed the other day.Screen Shot 2016-09-03 at 9.52.02 AM

 

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!

What sort of tools do you use on non-compliant avoiders?
What sort of tools do you use on non-compliant avoiders?

D Technology, What is Success?

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

Sometimes it seems people with diabetes are from Mars and healthcare professionals speak from [their] Uranus, even those who should know better. There were a number of positive things about a recent article on Psychosocial Aspects of Diabetes Technology  but throughout the short article, the authors allowed their biases to show.

“Gathering information about the reasons for discontinued use [of an artificial pancreas] are vital for all technology trials and will be key to helping create programmes that actually increase the chance that patients will be successful in their use of technology.” Continue reading

7 Things Not to Say to Someone with Diabetes!

1.Should you be eating that? 

Unless I’m about to use arsenic instead of splenda in my coffee this is never ever appropriate.  Not only is it rude-it just displays you don’t know much about diabetes.  Type 1s just need to cover the food they eat with insulin , what we choose to eat is between us and our tastebuds. Do you really think you have the knowledge or experience let alone the right to question our food choices?

KoiDessert
No such thing as forbidden fruit as long as you’ve got insulin.

2.How’s the Diabetes?

Still got it!     It has its ups and downs.      There just isn’t a sensible answer to this question. Diabetes just “is”.

3.Is that the bad kind of diabetes?

You’re implying there’s a good form of diabetes…seriously???

4.My Nanna went/lost… from diabetes.

Just stop right there, are you going to relate the loss of a limb or function because of diabetes?  You’re kidding right? Do you think that’s helpful? Those of us with diabetes are very well aware of the horror stories, we don’t want to be reminded of them every few minutes.  It doesn’t help to add “they didn’t take care of themselves” at the end of the tale-blaming people for the consequences of ill health is just cruel and in many cases untrue.

5.Why do you have diabetes?

If I knew that I’d be lining up for the Nobel prize in medicine.  Type 1 is an autoimmune condition and nobody knows for sure what triggers it but it is not linked to stuff like being overweight or being sedentary. Type 2 does appear to be influenced by lifestyle factors but nobody knows why some skinny, fit people still get type 2 and some obese people remain type 2 free. I don’t hear people ask why someone has cancer or MS, so why diabetes?

6.You can get off insulin/cure diabetes by …

No I really can’t.  Every day of my life since I was 1 year and 7 months old I have needed insulin to stay alive. No matter how little I eat or how much cinnamon/ochra or fenugreek I consume I will always need insulin to stay alive. Some type 2 people can get off insulin but not type 1s.  The death rate for people with type 1 before the discovery of insulin in the 1920s was 100% despite starvation diets. Do you really think that if there was a cure for type 1 parents would continue to inject their children multiple times a day, would get up in the early hours of the morning every day to check their child is still conscious and so much other stuff if the answer was out there.

7.You must be very important to wear a pager (pointing to my insulin pump )photoThis, said to me within minutes of being introduced  (and you can imagine the tone) is probably the most insultingly ridiculous thing that’s ever been said to me. So not only do you think I’m trying to impress people with my “importance” but I’m so pathetic I’d try to do so with a piece of 1980s technology. Yeah, well think it said more about him than it did me.

Do you have other tips for things not to say to people with diabetes? What’s been the stupidest diabetes related comment you’ve heard?  If you don’t have diabetes have you ever said this sort of thing (hopefully not number 7).

Open Insulin & Synthetic Skin, What’s New in D?

Another diabetes breakthrough appeared on Aussie tv the other night. So what’s the deal?

An amazing doctor at Royal Adelaide Hospital who created a synthetic “skin” for use in burns and surgical wounds showed this “skin” to an expert in islet cell transplants.  They agreed that this synthetic skin could, potentially, be used to create a less invasive means of transplanting islet cells. This method of implanting the cells offers some advantages over the current method of implanting into the liver via the portal vein. The cells can be monitored more easily and can be easily replaced should technology change.

This is a cool use of a technology but it’s not going to have any impact on us yet. Continue reading

I Want a Lawyer for my Diabetes

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

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

Fear Tactics & Psychological Harm

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

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 Screen Shot 2016-05-17 at 8.50.36 PMare 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.

D Blog Week: Monday’s Why R u Here?

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

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.a1cpic

Why do you participate in the diabetes community? What messages would you like to share?