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Life in a Virtual Diabetes Community

The other day I saw this non-diabetes related exchange on Twitter and it really resonated:

Over the last few weeks in particular I’ve seen a number of people lamenting a perceived loss of civility/kindness/supportiveness in the diabetes online community.  It grieves me that people would have negative experiences participating in online communities. I have spent the last twenty years involved in this community and in the very early days of RealityCheck and the Type 1 Diabetes Network I invested emotionally, mentally and financially into building a community. During those early years we were attacked by a small number of health professionals (indeed a dietitian contributed nasty jokes about retinopathy anonymously to our forum when we failed to ‘enforce’ the messages he believed needed to be sent), a small group of people felt we weren’t inclusive enough so they spent time criticising us online and sending nasty reviews of the website to publications, people visited the forum paid for from the personal funds of the founder and yelled their criticism and aired their minor grievances there.

All this to say a degree of anger/nastiness/personal attack is not new in the diabetes community.  What keeps me involved though is that for every person with whom I’ve had some sort of less than ideal experience online, there’s been 10 people from whom I’ve received empathy, validation, useful information and a warm fuzzy feeling. I would be so much the poorer, emotionally, intellectually and in physical and mental health  without the online diabetes community AND I want others to experience this too. I came to realise that many of those who behaved in what we perceived were less than ideal ways were most in need of the help offered by peer support and their depth of feeling was indicative of just how important the community was.

All communities are made up of flawed individuals and we can’t always be at our best. I cherish the authenticity of real interactions and sometimes these can be uncomfortable-but the community needs diversity and will be stronger if independent thinking is allowed and sometimes we have to agree to disagree.

There is nothing more prejudicial to community life than to mask tensions and pretend they do not exist, or to hide from them behind a polite facade and flee from reality and dialogue. Jean Vernier

Of course there’s often a tricky balance between critique and constructive disagreement versus negativity and point scoring that may degenerate to nastiness. When I look at the rest of Twitter, I am really encouraged by the #DOC, there are occasional less than ideal interactions but generally there is a civility and search for mutual understanding and a sense of fairness that far exceeds that of most other social media interactions. Jean Vernier has wonderful insights into community life, being the founder of the world wide L’Arche communities of people with and without intellectual and developmental disabilities, he says:

It is difficult to make people understand that the ideal community doesn’t exist and that the equilibrium and harmony they imagine possible are things that come only after years of struggle, and that even then come only as flashes of grace and peace.

Community is the place of forgiveness. There are always words that wound, self-promoting attitudes, situations where susceptibilities clash. That is why living together implies a certain cross, a constant effort and an acceptance that comes from daily and mutual forgiveness.

I’ll leave the last word to Cherise who was recently on the receiving end of criticism that was not based on fact, and upon which a bunch of people on either side (including me) weighed in without doing a fact check first. Her response is all class and shows commitment to the community that goes way beyond her individual interests and gives me something to aspire to!

When Language Causes Doctors to Behave Badly!

 

Melinda Seed

Language matters is not about being polite or swapping one word for another that conveys the same concept.

The reason why people with diabetes get upset and angry about words is that they betray flawed assumptions, presumptions and inaccuracies NOT because they’ve hurt out feelings. We may get upset about rudeness, incivility and being patronised too but that’s a different issue and one that many of us can solve by simply seeking health care providers with basic social skills.

Here’s a little story to illustrate what I mean.

Jack’s GP  referred him to an endocrinologist for his diabetes.  The referral said:

“… Jack is a type 2 diabetic of 1 years duration. He is not adhering to treatment recommendations, having failed to control blood sugars with oral meds and life style modification. His HBA1c has been steadily increasing over the last twelve months and as of d/m/y it was 12.2%. …”

The GP didn’t cause Jack emotional distress. The words were recorded in a communication between doctors, trying to convey ‘facts’. So there’s no problem here-right? I mean they’ve been polite even  used the word ‘adherence’ instead of ‘compliance’-gheez some people are just so sensitive?    The problem here is with lazy doctoring! Continue reading

Diet Wars, Again!

So the diet wars are hotting up again, I have a sense of deja vu… again.

I have had diabetes all my life and soon I will notch up 50 years. I’ve seen the advice chop and change over that time. Firstly it was eat loads of carbs at breakfast, morning tea, lunch, afternoon tea, dinner and supper. The distinction was made between starch and sugar. So it was thought that a piece of fruit would ‘burn up’ in your system more quickly than, say a slice of white bread.   Then there was eat a balanced diet, then there was the Glycemic Index diet, then there was the carb counting and insulin dose ratio approach. Now we are learning that protein impacts upon blood sugar, as does eating fats but only if consumed with carbohydrate-so those after tight control are counting and blousing for protein and fats as well as carbs.  Lately  very low carbohydrate diets have been gaining attention and some very zealous followers. Continue reading

Should Clinicians Be Involved in Health Policy Decisions?

Melinda Seed writes for Twice Diabetes

UK endocrinologist and all round good guy, Partha Kar has been musing about patient involvement in funding allocations on his blog. I can’t help but respond, as Partha notes in his blog, he is thinking aloud and so am I, also playing devil’s advocate.

As a side note I have interacted with Dr Kar on twitter and he is genuinely interested in patient thoughts and is an advocate for patient involvement and the patient voice, so I trust he’ll take this as another step in the “debate”.

“Policy role can be much fun…it can also be very troubling…making judgement calls which may affect many is never easy- and it does always make me wonder- how much benefit would direct patient involvement help? I mean- lets get this right- absolutely a must, we all should do it…but how much would that help if- say- there came the question of allocating money to services?”

He goes on to suggest that patients will think in silos just like everyone else

 

“could patients help or even directly advise where to allocate that money?

Or would they be dictated by their own niche?   …The argument that those who live with it- know more what to do with the money also falls a bit flat- when say a Type 1 diabetes person has to make a call over wider budget of diabetes- lest[sic] face it- their knowledge of living with Type 2 diabetes is the same as mine- nearly non-existent. Tricksy, isn’t it?”

Continue reading