Time and again I find myself nodding at conferences or lectures when I hear a “patient’s” story of how the internet has or does make a huge difference to their quality of life/management of a medical condition or disease and its treatments. So it was again as I listened to e-patient Dave who told his story of engagement with the healthcare system following his diagnosis with stage 4 renal cancer.
Dave’s basic request “let patients help” seems unassuming enough and his definition of ’empowerment’ also seems like a modest aspiration. Continue reading →
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.
Actually I have no idea why I have diabetes. If I really knew exactly why type 1 occurs I’d be publishing in the BMJ or the NEJM, I just wanted to talk about the language of being a diabetic as opposed to a person with diabetes. Continue reading →
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’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!