As it turns out, it takes more than a global pandemic to stop the Ascensia Diabetes Social Media Summits, which have recently become a permanent fixture on diabetes conferences around the globe. The American Diabetes Association’s Annual Scientific Sessions were held virtually in June, and subsequently the first ever virtual Diabetes Social Media Summit (#ADADSMS) took place alongside.

Fourteen diabetes advocates from around the world were invited to attend and participate in a shortened program that would allow the conversations from previous Summits to continue, develop and be revisited to discuss how the pandemic has changed things. And continue they did!

As is usually the case with these events, an agenda is drawn up to guide discussion, however we don’t necessarily stick to it all that tightly. The beauty of having a group of vocal, smart and skilled advocates in one place (whether that place be a conference room or a Zoom room) is that we are guaranteed to be sent off on tangents we didn’t expect. Everyone has such rich experience, knowledge and lives in different places around the globe. Often as we share our experiences, we are able to see things in ways we may not have otherwise considered. We often use the phrase “your diabetes may vary” and this is very often reflected as the discussions develop at these events.

This year, however, there were other reasons that the agenda needed to be fluid. We opened the meeting with an acknowledgement of the current world events. The COVID-19 pandemic Is having significant impact on people with diabetes around the globe. The response to the murder of George Floyd and subsequent discussions about racial inequalities around the world could not be ignored – and we didn’t want to ignore them either. However, we (Grumps and Renza) are not the people to lead these discussions. We feel very strongly that it is our place to listen, learn and support our friends and peers of colour, and elevate their experiences and their voices. It is not that we want to be silent at the moment; we want to be allies. As co-facilitators of the session, we knew that not acknowledging what was going on would be tone deaf and unacceptable. But it wasn’t for us to decide what or how that discussion would happen. In the opening remarks, Joe Delahunty from Ascensia introduced the topic, and we threw it open to the group where it was decided that the conversation needed more time, more attention and more dedicated focus, so it will happen at another time. Watch this space for more details of when that discussion will take place.

For some time now, discussions at these Summits have highlighted that when hearing from the diabetes community the voices heard need to be more diverse and representative. Loudly and most commonly, the people we hear are white, privileged and high-level tech users. We don’t for a moment consider this to be the norm for the diabetes world. While we still have a long way to go, we have been able to show more diversity with attendees at these events, especially at the IDF Congress in Busan last year and this ADADSMS. A benefit of being a virtual event was being able to convene people from all over the world who may otherwise not have been present in Chicago. There were more people with type 2 diabetes represented at this event than previous ones, providing us with insights that we had not considered before. In the past we found ourselves discussing how to better involve people with other types of diabetes and why they seemed to be less represented in the DOC. This time we made sure that they were at the (virtual) table so that they could tell us themselves.

When a couple of the participants who live with type 2 diabetes spoke about how they had not been able to find safe and welcoming places in the DOC, there was some surprise from some of the ADADSMS attendees. How, they wondered, could there be no safe places when the DOC is such a huge place. Isn’t it just a matter of finding the right place in the community?

Our type 2 diabetes participants pointed out that when somewhere seems uninviting, there is little desire to keep searching. This is, of course, understandable. Why would anyone risk feeling excluded or stigmatised or judged in a community they expect to be a welcoming environment – especially if they have already had a difficult and negative experience?

For those who find it difficult to believe that the DOC has not been that welcoming place for our type 2 brothers and sisters, it highlights why it is essential to remember that just because something is not our own experience, doesn’t mean it’s not the experience of others. Privilege comes into play when we believe that. We also need to consider our unconscious bias towards the type of diabetes that we have. By stating that ‘I could do nothing to stop getting type 1 diabetes; it’s not my fault’, there is an insinuation that those with type 2 diabetes could have avoided this and that it is totally their fault. That may not be the intention, but that is how it can be interpreted. This just adds to the stigma, blame and shame. As ever, our words and language matter!

At all of these summits, we try to carefully watch the conversations happening online from those who are following the hashtag, and make sure their comments are included in the discussion. For this summit, we found that a little more difficult. While we do our best to live tweet and Instagram sessions to try to give some real time insights, keeping up with what was going on in a busy chat while also tweeting wasn’t all that easy. (Massive kudos to Frank Sita who brilliantly managed to tweet throughout the meeting.)

What the session reinforced is that until we hear from other people living different diabetes lives, we will not be able to fully understand just what life with diabetes is like, or how world events shape our diabetes experiences. Hearing about how COVID-19 has impacted people with diabetes in different countries showed how, once again, it is the most vulnerable communities that are disproportionately affected. This is not just the case with access to medication and supplies. With face-to-face appointments being cancelled or discouraged in a lot of places, telemedicine is being used more, but that only benefits the people that have access to technology People in less resourced places now face less access to care than they were getting before the pandemic.

The ADADSMS continued a lot of the conversations we’d started at earlier summits, but more importantly, it started new ones, with new participants. We’re looking forward to advancing some of the new discussions that were started in coming events.

Participants & Twitter Handles

Chris ‘Grumpy Pumper’ Aldred - @grumpy_pumper

Renza Scibilia - @renzas

Cherise Shockley - @SweeterCherise

Kerri Sparling - @sixuntilme

Mila Buckley - @TheHangryWoman

Ken Tait - @bromleydiabetic

Corinna Cornejo - @type2musings

Kelly Kunik - @diabetesalicious

Frank Sita - @franksita

Steffi Haack - @PEP_ME_UP

Bastian Hauck - @tadorna

Andrea Limbourg - @andrealimbourg

Sana Ajmal - @MeethiZindagi

Johanah Co - @johanahco