www.realitycheck.org.au

[Kate]

Hi everyone -

You may have heard earlier in the year that I have been invited to attend and speak at the World Diabetes Congress, which is now fast approaching - I'm on a jetplane to Canada in just a few weeks.

I have been asked to speak on the rather enormous topic of 'Diabetes Online'. After much to-ing and fro-ing, I decided on an approach which focused on the online communities / connections part of 'online' rather than the whole lot, information sites, etc ; and then to focus on trying to make a case that online communities are a legitimate, safe and effective way for people living with diabetes to receive support and information - and improve the quality of our lives, even though such things are often disregarded by the health and medical part of the diabetes world, and operate in quite a different universe. And within all that using Reality Check and what we have done here as a case study to demonstrate these points - on sage advice from Mel I am not going to get into a wrap up of everything that is happening everywhere and speak for everyone doing anything diabetes and online!

I did when first asked to do this contact a large number of people who run other diabetes sites top seek their input an dpotential co-present, but was surprised to receive very little response and not much of any substance or enthusiasm really. It enforced further for me how muh the diabetes onlien world is in a parralel universe to the traditional diabetes associations and medical professions who woudl attend conferences like the World D Congress.

The audience is doctors, other health profesionals and lots of people from diabetes associations from all around the world.

Below is the abstract I prepared a few months ago to describe the session I wiull present. I am now working on the substance of my talk and would welcome and appreciate any thoughts and suggestions as to what I should say.

Thanks, Kate

Diabetes online
K. Gilbert1
1 The Type 1 Diabetes Network, President, Melbourne, Australia

People living with diabetes are using the internet in new and changing ways to
learn about their condition, connect with others, document their experiences
and build communities. But is it safe and reliable? Should it be recommended
and endorsed? Are online services the efficient and economical future for
diabetes education and support?

This session will provide a case study of RealityCheck.org.au, a website founded
by people with Type 1 Diabetes in Australia more than 10 years ago. The website
is now an active online community and has given rise to a national consumer
organisation with 4,000 members, The Type 1 Diabetes Network. With the
Reality Check online community remaining at the core, many other services and
activities have developed, both online and in other forms. The organisation has
published educational materials, created advocacy and awareness campaigns
and undertaken original research with marginalised groups.

The case study will explore strategies that have been used by Reality Check
over many years to manage the real and perceived risks of online discussions
about medical conditions whilst maintaining a lively online community that
people with Type 1 Diabetes of all ages actively visit, and which has grown into
a multi-faceted consumer organisation.

[David]

Hey Kate, You're definitely on the right track. One thing I have noticed, after living with D for around 32 years now, is the lack of support from health professionals for adults with D. A lot of focus and support is put into children, but as soon as the eighteen mark is hit it seems we just slip through the cracks. I believe RC is fantastic, not only for the laughs but also to obtain advice from those in similar positions. I was getting to the starting to pull my hair out stage before an educator asked me to check out your website, maybe a mid life D crisis, who knows :) ? But this type of forum does offer that much needed support to the wider community, and seeing some of the locations it is not just a national scheme, even starting to encroach upon international. Best of luck, I do hope you can break down some barriers!
_________________
Maniacal Diabetical

[Kate]

Thanks, David :) Good point re adults, shall try to include that. ANd great to hear we've been able to help you. Cheers
_________________
Kate Gilbert
Founder & President, The Type 1 Diabetes Network

[Trevor]

Hi Kate
I agree with David, not a lot of advice for adults, are we supposed to be "adult" enough to work it all out for ourselves ?.
I have been T1D for 40 years and this site has improved my understanding of T1D 1000 fold in the few years I have been lurking around (lol)
Please pass this comment to all you meet in Canada, have a great time & I am sure you will help to improve the understanding of many others with your talk.
GO KATE and show what AUSSIES can do !!!!!
Trevor
_________________
Live long & well with T1, from another OHBT1D

[Kate]

Thanks Trevor :)

[Daniel]

Just wanted to say you've done a great job Kate, it sounds fantastic.
_________________
Dan
DX'd with Type 1 in 05
MDI; trying for a pump!

[saints8]

Good luck with it Kate!

Just wanted to let you know that the Reality Check Forum has not only helped with my sanity over the years, it has really helped to improve my health and D control. And I am continually learning new things from the discussions.

Not sure how to say this in the right way, but I must admit that sometimes I get shocked at some of the questions asked here. Questions which demonstrate there are some people living with D, who do not have the knowledge required to achieve the best health outcomes for themselves. I'm not suggesting this is anyones fault, but it just stresses to me the absolute importance of a forum such as this, where we are all here to support each other and help one another out. And the timeliness of the site is not to be underestimated. As we all know, we can't go to see our Endo to ask every single question we have, or even in a reasonbale amount of time (eg my endo is booked out months in advance).

Anyway, I just wanted to let you know that Reality Check has had a real, tangible and positive impact on my D control and I sincerely thank you and the team for all your work!

Break a leg!

[Kate]

Thanks guys - that's really useful. Continuing the theme that has begun here, thought I'd mention that I am seriously considering doing my Masters minor thesis next year on a similar thing, look at RC and getting to the bottom of what sort of things it has provided people with over the years, what and why lots of people value it to keep us coming back. Your contributions then if you see a call out for such a thing will again be most appreciated .....!! I am investigating running online focus group disucssions via Skype, could be fun. Lots of work to do before the fun bit though.

Thanks again for all the thoughts and contributions.
_________________
Kate Gilbert
Founder & President, The Type 1 Diabetes Network

[kaito]

I think the best thing about RC is learning those little practical things about D that just aren't discussed in the health care system, as well as being able to rant in an understanding environment. To be honest, I think my control has improved from using RC because everytime I log in I get that boost of motivation that I used to only get after visiting my clinic and knowing I'm not alone keeps me going and trying hard to take care of myself. I also found RC to be invaluable when I picked out my new pump, as I was able to get lots of "insider info" on how good the pumps REALLY are and how useful the fancy-looking features REALLY are in real life, without the manufacturer bias!

I think RC is fantastic, Kate, Mel and all the moderators have done such a wonderful job creating the RC community. Not sure if what I've said is really what you wanted for your pres, but take it as a compliment for all the hard work you've done over the years :)

[Cee]

Hi Kate
Just wanted to mention something RC offered me that I did not find anywhere else when I was planning pregnancy and also when I was PG. Most infomation either from my health professionals or electronic sources on D and PG (and I am sure other topics) centered around what goes wrong, how to avoid problems, why bad things happen etc. As with most things it was the squeaky wheel that was getting all the attention. I found it very hard to find examples of things going right (40wks gestation, no special care nursery, no macrosomia, vaginal delivery etc). The only place I found positive stories and motivation that an uneventful pregnancy and healthy baby was no only possible but likely was on RC. Had it not been for RC I would have had a greater level of apprehension and fear planning my children.
Thanks for the great job you do and good luck at the Congress.

[Jessie L]

Good luck Kate - I'm sure you will represent us proudly!

I always felt with health professionals that they didnt want to hear about the problems with D, the struggles (emotionally and readings) and that for the most part they just wanted to see good readings and they saw this as a reflection of hard work or looking after it (eg "Well Done your HbA1c is 5.6 (I wish!!)). This could just be my perception but as a result I always felt pressure to make it appear like everything was going well - even when I was struggling. For me Reality Check is a safe haven I can openly talk about the shit side of D without feeling judged and lets face it being open and honest about struggles means we can face them more effectively especially when you feel like you will be supported through the tough times rather than berated for the problems. Also sometimes it just helps to know there are people out there who are also pancreatically challenged... I never had any contact with any Type 1's in my day to day life so this has offered me a wealth of uncensored information because all the knowledge I had about D prior to finding RC was the info my doctor disclosed and I never knew what questions to ask him because you don't know what you don't know until you know!
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They came, they played, they blocked the driveway

[Jen (nli)]

I've been reading this thread with interest.

Kate I agree that online communities can be enormously helpful, but I think there are a few things that have kept me here:

1) the site is well moderated and managed and it is "safe". RC seems to be well "controlled" without it being controlling.

2) I really like the people here. Its positive and safe.

3) I've been research online communities as part of my postgraduate study (online learning). Vygotsky spoke about "meaning making" and how people learn when they actively make meanings from things and how collaboration with a community can foster this act of "meaning making". Online discussions can certainly foster this and it got me thinking about RC. The dialogue that RC has given me has helped me make many meanings from having diabetes. Its a great example of collaborative learning.

4) It gives me choices I didn't know existed.

5) I hide diabetes a lot from people. Everyone knows I'm a diabetic - I'm open about that bit. But what I don't tell them is:

"I've slept in because I had a hell of a hypo last night. I had a hypo last night because I've had two Tim Tams (the first in a decade) and I've overestimated the correction bolus. At 2am in the morning I thought I was in a war and that my husband was trying to poison me with jelly beans. After spitting jelly beans out all over him and in my hair, he jabbed me in the butt with a glucagon pen, which later made me throw up, and gave me an awful headache.

This morning I have a dried jelly bean stuck to my hair. I have to cut the damn thing out. I tie back my hair but you can still see where I've cut it out. I have a debrief with my wonderful husband but I know I'll have to make it up to him tonight. Not because he wants me to, but because I feel guilty.

I'm now late for work. During the hectic day in a professional job (which I'm good at), I have two more mild hypos - and NO my control is okay. But I'm putting on weight because I'm trying to fall pregnant, and yes I've seen four dietitians who have all said my diet is "excellent" (apart from the Tim Tam oversight) and I've also got a personal trainer. I think about diabetes every 15 minutes or so and NO its not because I'm obsessed by it - its just I need to do that in order to get control, and I'm scared of going blind, or losing feeling in my feet, or just plain dying. No I don't need a psychologist. And yes I will have another Tim Tam - NOT because I'm a bad person but because like - after a decade of abstinence, I've decided I need to make up for lost time.

No, I'm sorry, fruit is NOT the same as a Tim Tam. It really annoys me when someone tries to tell me otherwise. Don't you know that I know the molecular structure of both Tim Tams and apples. I can tell you how much Fat, CHO, calories and the GI factor is in almost any food you care to mention. I know when it will be absorbed into my system and how combining what I eat with another type of food will affect absorption rates. But its boring to you so I won't mention it.

I can also accurately guesstimate a bolus in most instances not involving Tim Tams. I know what IOB means and I know the meaning of words like "bolus", "basal", "wizard", "hypo", "T1D", "bsls" and "hba1c". I also know what its like to "beep" during an important meeting with interstate guests... and I can almost effortlessly deflect the awkward moment through grace, dignity and an inexhaustible well of humour.

These are all the things that happen to me in a morning that people without diabetes don't know about. They just see me turn up for work with a smile on my face. These are the things I keep secret- every day - even with my best friends, even with my husband. These are the things, that eventually - I need to talk to someone about... people who will understand it because maybe they've had a worse night / morning than me. They are the one's that help me "re-stock my shelves at night" and fill up that well of humour again. Thank you all. Good luck Kate.

[Kate]

Thanks again everyone. Really useful and insightful contributions rolling in. I have almost finished my presentation now but if everyone's Ok I would like to incorporate a few of the comments here as direct quotes. I have almost all of them in at the moment but need to do some serious editing as the presentation is too long - I am having trouble choosing which ones to use!! But wanted to say thanks again and let you know it's all being used in the mix in different ways ... K
_________________
Kate Gilbert
Founder & President, The Type 1 Diabetes Network

[Trevor]

BRAVO JEN !!!!!!!!!!!!!!!!!!!!!!
Trevor
_________________
Live long & well with T1, from another OHBT1D

[Kate]

I am getting reports of this thread making people cry !! Hugs to everyone. :)
_________________
Kate Gilbert
Founder & President, The Type 1 Diabetes Network

[Caraline]

I am sitting here nodding my head at everything everybody has said. I can't add anything... other than "this is great!"
_________________
Dx T1 April 08; Pumping since Dec 08

[Mel]

Thanks for all the feedback. Jen, just wanted to say that my Masters thesis was about why people come to RC and to summ up, one of the main points was that on RC we construct narratives to make sense out of experience of living with T1D. Sharing narratives is an essential part of being human but we can't share unless there is mutual understanding and it is only on RC that we can find others who share that understanding.

Anyhoo was just struck by how similar your premise was.

Good luck Kate, I know you'll do great and I hope the weather is nice in Canada.

[Anne]

This forum discusses openly what was never mentionned to me in lectures at medical school or in the clinics that I go to as a patient.

How to explain the pump to a new boyfriend, what to do with your pump if you want to wear a nice sexy dress or go on a week of watersport holiday, all the weird hypo /hyper experiences and our best recipe as a hypo cure. Where to start to get back on track when blood sugars are all over the place, how to stay motivated or have a (safe) break from it all. The things we would never dare mentionning to health professionals. How my husband sleeps on my pump or I forget to wear it after I showered. I won't even mention the diabetic TTC and pregnancy that no one can even imagine until they go through it.

But all this is not trivial, it is just day to day life as we are entitled to live it, but with the added complication of a challenged pancreas.

Hey, over 2000 years of diabetes bring a lot of knowledge and shared understanding. It's awsome.

Clearly living with diabetes gives people a wisdom that years of medical school never come close to. The information and support I seek here are very different from the scientific expertise I expect from the diabetic clinic: being allowed to have emotions, acknowledge our difficulties and be reminded that at other times we may just 'cruise'. Realise that we are not alone, when 98% of the population does not share our challenges.

Thanks for all your hard work to make RC forum work, and stay safe.
Anne
_________________
Carpe diem

[Kate]

Oh, nooooooooooooooooo Anne! That's some excellent points too - I already have 55 slides for 20 minutes and am having trouble culling and everyone keeps coming up with more terrific contributions! EEeekkk!!! :)
_________________
Kate Gilbert
Founder & President, The Type 1 Diabetes Network

[Anne]

Well, RC is for real life, sorry, Kate, our lives don't fit in a A4 size piece of paper, but they do on this forum :)
_________________
Carpe diem

[Coll]

Gosh Jen your post made tears spring to my eyes!!! I think your analolgy on 're-stocking the shelves' is excellent - so very true - no wonder I log on to RC almost every day, and had RC saved as the default site on my computer at work :)

[Rhean]

Hi Kate,

I am not really into support groups or bonding with other people to share experiences.
RC has allowed me to access a huge amount of support and information while letting me control my level of involvement.
It was through RC that I was able to identify a problem that led to a diagnosis of Gastroparesis.
I have been coming to the site for many years now, and obviously am happy to contribute to topics and discussions.
Thank you for your hard work and dedication.

Rhean

[GlenJ]

RC is the sort of 'place' that I can not imagine ANYWHERE (endo, clinic, etc) being able to come close to replicating. As far as I am concerned it is vital and would be similar for any chronic illness

When diagnoised in a country town on the mid north coast of NSW there was the monthly D meetings at the base hospital and as most would have guessed it was basically T2 orientated. I had absolutely no contact with other T1s until relatively recently and especially since joining RC.

Distance & time zones become a non-issue thanks to the internet so we can 'get-together' and talk about things, experiences, advice, a lot of stuff you will NOT get from your endo even if you are lucky enough to have a good one.

[Kate]

Hi everyone

The program for the congress is just now online here:

http://www.worlddiabetescongress.org/pages/programme-update

If you have any special requests for things you see in the programme that you would like me to go to and report back, please post here, Ta.

On a related note, I am contemplating writing up my speech and thinking in the same style as I did the Paediatric Endos one (http://www.d1.org.au/apeg08.htm) - it's quite a bit of work though - would you read it if I spent the time doing it? Or just whacking up my slides on the website enough?

K
_________________
Kate Gilbert
Founder & President, The Type 1 Diabetes Network

[deviation72]

Best of luck for Monday Kate!

[Kate]

Thanks :) It went well, I think.... have posted on the twitter thingamy on front page a bit more at www.d1.org.au - I think it was video'd so shall let you know if you can watch it soon! i'm exhausted!!
_________________
Kate Gilbert
Founder & President, The Type 1 Diabetes Network

[Tony]

Good stuff Kate,
Knew you'd excel

Loving the Tweets.

For those that have missed it, Kate is posting 'Tweets' that are being displayed on our Home Page

http://www.d1.org.au/

UPDATE:
Kezza says it's easier to read here

http://twitter.com/T1DN
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If you want something done, do it yourself. Make the effort and start the Change!

[Mel]

[Cathyrob]

Most eye specialists will have an OCT and some optometrists (if they have the money...) do too. Just ask at your next retinal check

[Cathyrob]

hang on.. I'd better quantify since an OCT is a pretty big expense! I'd imagine that all retinal eye specialists (as opposed to your bread and butter ophthal) would have access to one and rarely the odd optometrist group.

[artemis]

I have finally found time to read your tweets, Kate. Congratulations!
_________________
Jane
Infundo ergo sum.

[Kate]

Thanks, Mel. Glad to hear. The optho I heard speak was gold and (hard to convey in 140 characters on a text message!) but I just thought I'd share what she talked about with that tool as I had never heard it discussed here, but (thank god, and 10 pints of luck to me) am not an expert in retinopathy by any stretch - anyway, she spoke about OCT as a really important diagnostic tool for d maculuar edema especially, so good to know everyone is onto it. Ta :)
_________________
Kate Gilbert
Founder & President, The Type 1 Diabetes Network

[Dann-Hr]

Hi Kate,

I'm so glad you met Croats :) and mentioned Croatian website (among the other so great things you mention). There is also lively forum on the site, but everything is in Croatian.

And I'm so sorry I wasn't able to go to Canada, it's so exciting.

Thanks for texting. Keep up the good work!

[Jen (nli)]

Hi,

Just wanted to say the tweets are fantastic. Its made me realise that twittering does have a purpose (sorry - I've probably offended a whole lot of people... its my failing not to see the purpose earlier).

Keep it coming.

Jenny

[Dann-Hr]

'Australian Diabetes Aristocracy' cracked me up :))))

[Kate]

Thanks Guys :) Only half a day to go... glad you're enjoying it -and impressed you're understanding me actually - they get a bit cryptic - I am always writing these messages then going back and editing them down to 140 characters and hope they are still vaguely comprehensible!!

Jen - I am completely with you!!! It's pretty cool but helps when you find a mobile phone plan with unlimited texts for 50c / day (no joke!!) - bit diff to our stoopid options in Oz which might influence our experience/view of Twitter as you couldnt really use it like this without a huge bill at home?

Dann - the Croats are terrific - I hung out with them tonight at the cocktail party thingamy - they told me you texted them that I had mentioned them on the site and anyway it's all very funny - we giggled together as the new IDF President gave his big speech about putting people with diabetes first ... great people, the most similar to us I have met here - I hope we can meet up again at IDF Melbourne 2013, if we are all still at this stuff!
_________________
Kate Gilbert
Founder & President, The Type 1 Diabetes Network

[Dann-Hr]

[deviation72]

FANTASTIC tweets, Kate, enjoyed them very much.