Diabetes in the Social Media Age

Melinda Seed writes for Twice Diabetes

So what’s your superpower?*

These and other great questions and insights have been occupying my mind since I attended a conference for online health advocates on the weekend.

 

  1. We’ve come a long way baby!No longer content to be dismissed as irrelevant unless we agree to be nothing more than a mouthpiece for professional organisations (be they doctors, hospitals, pharma or professional disease corporations like DA) advocates are telling their own stories, connecting supporting and empowering each other and advocating for what ‘we the people’ really want.  Slowly but surely advocates are bringing the voice of the ‘patient’ into the dialogue of health care and we are seeing we DO make a difference. It was wonderful to share our experiences and to see how much we had in common. It was great to catch up with other members of #ozdoc!
  2. Diabetes is different I may be biased but diabetes advocates rock. I got the impression that those of us in diabetes were across the issues and had loads of experience in the social media space already whereas many other conditions/diseases were still just dipping their toes into the social media space in Australia. I think where we differ from most other conditions is the sheer volume of treatment decisions we make every day.
    So often (and again at this conference) the patient voice is presented as though it is competing or trying to replace medical information. In diabetes that’s just so yesterday. Treatment is in our hands and the minutae of basals, boluses, mud cake and triathlons is beyond healthcare professionals anyway.  Sure, we shouldn’t give medical advice but I have often spoken of what worked for me and I can’t count the number of times I’ve decided to try what somebody else says has worked for them.  I really wish doctors would realise we have no interest in competing or trying to supersede them.
  3. “Fear and humiliation and shame are terrible things to live with.” Luke Escombe
    Luke is a musician, comedian and advocate for Crohn’s disease. His speech was both really funny and inspirational.  The quote above is powerful in that I think a lot of people with medical conditions live with fear, humiliation and shame. Be it because they have an ostomy, look different in some way or perhaps they don’t achieve the level of diabetes management that some random doctor or nurse feels is appropriate.  Let’s all support each other in standing up against fear, humiliation and shame AND speak up for people who don’t (yet) have a voice.
  4. *Use your vulnerabilities as a Superpower Nick Bowditch was inspirational in encouraging us to reframe our stories. He shared that he struggled with depression and addiction BUT he reframed this to tell us he has incredible empathy, he was aware of his vulnerabilities and because of that he could see ours too and (here’s the killer)-he doesn’t care that we have vulnerabilities.
    Nick Bowditch reframing a story of depression & addiction.

    There’s enormous power in that reframing, in turning the tables so to speak on those who might judge him for what they perceive as weaknesses.How might you reframe your story today? (I don’t just mean in diabetes but to reframe any of your trials, sadnesses, grief or vulnerabilities so that you can tell a different story). Often you have to go through bad things, failure, loss etc in order to discover your superpowers.  As Nick said:“Fear, pain, grief etc are gifts wrapped in s#1t!”

    Attendees at #healthevoices2017

 

Janssen-Cilag Pty Ltd paid for my travel and accommodation expenses to attend this conference.  All thoughts and opinions expressed here are solely my own and do not reflect the thoughts or opinions of Janssen or J&J.

One thought on “Diabetes in the Social Media Age

  1. Thanks for this, Melinda. We (him’n’me) were talking about the stigmatisation of certain conditions/diseases – think T1 or diabetes in general – and how other conditions are perceived as ‘sexy’ (John’s description) and thus do not get stigmatised. This article resonates. And how!

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