Online Communities

I know its been a while, but here I am, back at the keyboard. The truth is that I haven’t really been away from it but my last few blogs have been written for others and my own ramblings have been somewhat neglected.

Events of the last week in the Diabetes Online Community (DOC) have stirred the fires and made me feel the need to put my thoughts down.
Before I start, I just want to point out that this is not a personal dig at anyone involved in the community and that the community is, in general, one of support and friendship from which I have benefitted.

My online involvement is mainly through twitter which I turned to when my diabetes team threw their hands up in the air and said ‘we think you should consider an insulin pump Jules, we’ve tried everything else’. I knew nothing about pumps so turned to twitter for guidance. So many lovely people answered my call for help, using the hashtags #diabetes #type1 and friendships were made as I started on my journey with the insulin pump.

Over time, a new hashtag was introduced, that of #gbdoc. Initially I think it made us feel more of a community but over time I felt that influences were creeping in. My face has never fitted, partly due to it’s comedic value but mainly because of my lack of confidence I think. At school I was the quiet kid (honestly, I was) and never one of the popular girls. I saw the gbdoc as a virtual coffee shop that we could all drop into and chat and laugh about things whilst drinking a latte and eating cake. Then the community seemed to become divided. There were people who had joined with their own agendas and seemed to want to encourage division. (Team pump v Team MDI – need I say more). I was also under the impression that the @GBDOC account would be owned and manned by the community but it was really just one person. This account became the self appointed mouthpiece of all people with diabetes and on a number of occasions I have had to DM this account and point out that the words used and the attitude portrayed in no way reflected MY feelings as a pwd. This mouthpiece did not speak for me.

So, going back to my school days, I put my head down and took a step back from the gbdoc. I keep in touch with my friends as individuals but I don’t take part in the chats and try not to give my view on things that may be seen as ‘different’. If we had memberships for the gbdoc, I would have happily resigned from it. I felt the community was being used as a springboard for other business ventures and opportunities and that is not what we were about. We were about pwd supporting each other. Even at the gbdoc conferences, although it was a great opportunity to meet tweeters in real life and perhaps learn a bit, I felt there was still no inclusion. I remember a really interesting discussion about misconceptions in the press. We all mainly agreed that we should have a uniform response to the press which we were all happy to be involved in. Our comments were fed back to the organiser but I never heard anything again. When I questioned @GBDOC on their aggressive response to a lady who had asked for meal ideas for her ill husband on twitter I was told ‘do you know how many journalists contact us every day?’ That shouldn’t be the main response of a community for pwd in my opinion.

Over the last week a number of issues have come to light that, in my opinion, puts the gbdoc in a bad light. A lot of these things surround Team BG and although TECHNICALLY this isn’t connected to the gbdoc, morally I think it is. The names registered with Companies House, the lack of filed accounts for these companies, the same person running them. When certain financial matters have been questioned on social media the @GBDoc response has been patronising. If somebody raises a concern then address it, don’t make light of it and deflect responsibility. By association the #gbdoc has been tainted and perhaps the time has now come for a relaunch.

The only good thing to come of all of this, and there is plenty of good in the community, is that I have felt part of the community again. There has been a resurgence that pwd feel the gbdoc is theirs, as it should be. I have spoken to lots of people on twitter who I haven’t spoken to for ages as, like myself, they have taken a step back. The GBDOC website clearly states that the community is for people with diabetes by people with diabetes. I don’t feel that has been the case.

So let’s try and make that happen. I feel a little bit Corbynesque here but the #doc is ‘for the many, not the few’. Let’s try and welcome EVERYBODY, offer that much needed support and empathy and get those twitter threads about biscuits (forever to be known as ‘The Great Biscuit Thread of 2017’ – @TheRhodri) going! Renew those friendships and don’t be afraid to have an opinion. We are all entitled to an opinion and we should all feel safe to voice our opinion in OUR online communities.

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Author: julesedwards1

I want to use this blog to relate some of my experiences, mainly revolving around Diabetes, MS and depression. I don't have any medical background and I don't seek to tell anyone what to do. In this life i have learned that there is no right or wrong way to do anything. All I offer is my own experiences in the hope that it will make me understand myself better and maybe help you, the reader, if you recognise things in my life that are maybe happening in yours. You are not alone :-)

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