So what’s your superpower?*
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 a mouthpiece 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.Tweet
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’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
On 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.
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.
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!
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.Tweet
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!
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 readingTweet
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?
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 )This, 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).Tweet
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 readingTweet
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 readingTweet