A few weeks ago, I saw this tweet:

(click to be taken to original tweet)

Clinical psychologist, Dr Rose Stewart, was giving a presentation where she highlighted that the power imbalance we experience between HCPs and PWD carries through to online spaces. (Thanks to Mark Guyers for live tweeting Rose’s talk.)

The diabetes online community (DOC) was a space created by people with diabetes for people with diabetes. It’s been around for many years. Australian-based site, Reality Check, had an active online forum back in the 1990s. Diabetes blogs led by DOC pioneers such as Kerri Sparling and Scott Johnson (and others) were around in the early 2000s. I wrote a weekly pregnancy blog for a diabetes peer site when I was expecting our kid in 2004 (which I republished a number of years later on Diabetogenic here).

Twitter chats (starting with #DSMA) followed. The chatter of the community goes where the community congregates; different groups use different forums to meet and chat. Kerri wrote this brilliant report on the history of the DOC. It’s a great read to learn from those who were instrumental in bringing together the community online.

I agree with Rose: Our community is better because it includes stakeholders from all corners of the diabetes community including HCPs and researchers. Jane Speight and the ACBRD team; Deb Greenwood, Hope Warsaw and other shining stars from the AADE; and clinicians and researchers from projects such as HypoRESOLVE contribute to DOC discussions and make them far richer and more rounded. That’s just the way it is when we hear the perspectives of all people living with, affected by, working in, and researching diabetes.

Some of the great outputs of these collaborative efforts include research projects, conference presentations and, of course, the development and production of this wonderful #LanguageMatters video.

Our community is not better when PWDs’ personal experiences or feelings are challenged, and unfortunately, that seems to be the default of some non-PWD and HCPs in the community. I’m not for a moment suggesting that PWD don’t challenge each other’s ideas and opinions. (Yes, I’ve read Bernstein. I’m just not that into him, but you do you.) But it is undeniable that there is a difference when it is PWD challenging each other as compared with when HCPs challenge us. There is power at play in the latter. And that is important to remember.

The spectrum of this is from the downright abusive (such as a doctor’s now-deleted response to this twitter thread I shared), to defensive: what I call the ‘Yes, but…’ response. In some ways, it is this particular reaction that is more difficult to deal with.

I find it really problematic when someone speaks about a horrible situation only to be challenged by HCPs. Responses such as ‘Yes, but we’re trying,’ or ‘Yes, but things are better than they used to be,’ or ‘Yes, but we’re not all like that,’ are defensive and don’t acknowledge or respect the experience being shared by the PWD.

When HPCs make these sorts of comments in response to someone sharing their less than ideal experience, it shifts the discussion from the PWD (and that experience) to broader interactions between HCPs and PWD. At its very worst, the discussion moves to how HPCs are challenged by ‘misbehaving PWD’. Live tweeting from the sex and diabetes session at the IDF Congress got messy when it skidded into commentary about how difficult ‘patients’ were and that if only they did what they were told, HCPs would have a much easier job. It was clear from the online commentary that HCPs’ agendas are more important than PWD, and sure, sex and sexual health is one of the things that isn’t addressed, but what of it? HCPs are already too busy doing other things (things, incidentally, that they have deemed important).

So, what happened? Well, in this instance at IDF2019, I shut down and stopped engaging, as did other PWDs. We shouldn’t need to argue and fight to defend what we think is important in diabetes care. And we shouldn’t be made to feel that our thoughts and feelings about diabetes need justifying. Or that we are the problem in a health system at breaking point.

The power imbalance – and yes, that is very, very real, even for bolshy advocates like me – comes to the fore when this sort of thing happens. It can feel as though we are being reprimanded or told off or tone policed for the way we are telling our own story or for daring to suggest that we have experienced troubles and distress in healthcare.

I have recently taken a couple of breaks from SoMe because of this sort of stuff. I don’t feel that I should ever need to rationalise my own experiences or how I feel as a person with diabetes. And yet, there have been numerous times where HCPs have made me feel that I do, or that my thoughts are not as valid or significant as theirs. I’m getting far better dealing with these situations. I’ve started using the unfollow and mute buttons in a way that is constructive and results in a far gentler Twitter feed!

So, back to Rose Stewart’s presentation. She is certainly right. That power imbalance does travel from the clinic environment to the online space and it can be damaging to PWD. HCPs are part of the fabric of the DOC and their contributions are important. But not ever at the expense of the comfort and safety of PWD.

P.S. No, I am not saying PWD get free rein to say and do whatever we want just because the DOC is by and for us. Basic manners don’t get thrown out the window just because it is our space. Being rude, nasty, aggressive, dismissive or impolite to anyone online is not okay. Being angry when we write about crappy situations is not being rude, and it is a perfectly understandable and acceptable response to what we have all faced at one time of another living with diabetes. (And that’s got nothing to do with #LanguageMatters – that’s just basic courtesy that we should all know and understand!)