The #DOC is a wonderful place where support springs up at the drop of 140 characters, where feelings are emulated and where you feel stronger than your Diabetes… yet rarely do you know the face behind the kind words and oozing empathy. “The DOC is an embracing community” – Renza Scibilia (diabetogenic.wordpress.com).
As many of you will probably already know, I recently attended the EASD 2012 event and 1st bloggers summit in Berlin. It was an amazing event hosted by the Animas Corporation and attended by many bloggers from around the world; all with one focus in hand. To care, connect and support the Diabetes community irrelevant of nationality, type or age.
Firstly the theme of a “world without limits” came to the forefront during general discussion, an important topic in the control of any long term condition. Veteran US blogger Kerri Sparling from sixuntilme.com kicked it off by suggesting that “diabetes is a part of us but not what defines us” leaning the chat towards the role of education and how we need to collapse the barriers which appear to segregate the public into ‘us’(people with diabetes) and ‘them’ (people without diabetes). Education is paramount to what each blogger is trying to achieve, through education we are able to build trusting relationships, self-confidence and have a clearer, more positive outlook on the future. Kerri built on this idea by stating that living successfully with Diabetes is a constant learning curve – adding that through blogging we can maintain a great community spirit by being honest and not professing that we know everything; “we haven’t figured it out- we need to remain sure of that”. Being open allows for others to join the #DOC without feeling as though we are in an’ exclusive club’ which is impenetrable unless you are successful in your management, “we are not perfect but neither is anyone else” – Kerri.
This led onto another area of Diabetes and education – the availability of information on self-management. It was clear feeling amongst all of the bloggers present that the way in which Diabetes is portrayed is very negative and has an impact on the way in which we are seen to live. Information giving on complications of uncontrolled Diabetes was highlighted as an area which the media and health professions need to adapt. Daniela D’Onofrio, creator of portalediabete.org, took centre stage with strong views relating to knowledge of complications from the patients perspective. “Knowledge is needed, it is very important to understand that there are complications and external factors which may lead to these- the dangers must be known even if it does not affect the majority. Support but educate” – Daniela. GBdoc agreed, adding “it’s not just about managing or treating numbers. It is an art/science balance”. Kerri continued suggesting that healthcare professionals should help patients to “work on their numbers but ensure no shame is assigned to them” - a very potent statement.
Kerri furthered the topic by asking for our thoughts on why we all blog; what drove us to make the leap into the online world of Diabetes and try to make a change… a wonderful and inspiring statement came immediately from Fredrik Debong (co-founder of MySugr – the iPhone app) “What drives me? Becoming a part of something bigger than myself”. Succinctly put.
Ivan Ferrario (tutti i diabetici uniti in rete) added that for him it was clear that we should all “be examples of what can be achieved”…”I was a scuba diver before diagnosis and I am a scuba diver now”. Bringing another element to this was the creator of the very successful #GBdoc – a weekly tweetchat between thousands of people living with Diabetes, carers and those who have an interest in the area as a health professional. “It is hard to find a team which has an interest in helping people to lead the life they want to” – proposing that other than helping to regulate blood glucose, GP, Nurses and Consultants tend to leave the more complex side of balancing a healthy lifestyle (sports for example) and Diabetes to the individual themselves rather than taking the time to research or suggest a plan of trial and error and work closely to tweak the process.
Finishing the discussion neatly, Kerri closed on a positive note – “We need to support one another. All of our individual successes will contribute to our overall success” … “Provide honest views – it is the professionals window into how we live with Diabetes in the real world”.
Currently the EU is considered to be lagging behind the USA in online support and the blogging scene. The USA was viewed as much more “open” in their views and that could be the cornerstone of their success. Many lessons can be learnt as they light the way to a revolutionised state of Diabetes care and community.