The Value of Lived Experience.

It’s been a really challenging year. I still feel as though I have mountains to climb to get to where I want to be with my degree and my career. I have wondered whether diabetes would be one of the things that would have to give way this year. I’ve stared into the depths of my WordPress dashboard at many points over the course of this year, wondering if I have anything left of value to add.

Then I attend a diabetes event like Australasian Diabetes Congress, and I am reminded that my impact, as a person living with diabetes is always something that I underestimate. People like me might only have a very small presence at conferences like these, but I always underestimate our impact. I couldn’t agree more with Kim’s sentiments around advocating for the value of lived experience during Tuesday’s #OzDSMS summit.

When I first attended this conference in 2017, I expressed that it was a truly humbling experience. It was surreal to be surrounded by so many healthcare professionals (particularly diabetes educators) who knew of us from our online presences. Who had probably never heard such candid conversations from people with diabetes outside of a clinical setting, but still wanted to hear our insights and learn from us. Two years later, and those feelings haven’t changed.

It’s been interesting to watch industry and diabetes orgs habitually send people who are relatively new to their organisation along to events like these, where they can learn from people like us. I think that’s a great move, one which I do commend. It’s also been surprising to hear more than a few comments about my content being used to support internal policy work by various industry. While this is undoubtedly a public forum, there is a value on lived experience and somehow I don’t think many in the industry realise that.

When I first found the diabetes online community, watching others share their lives with diabetes so openly made living with diabetes feel normal for the first time in my life. I remember looking on in envy at some of the amazing things that were going on all over the world. In person peer support felt really far away. I felt like I would have to travel to the other side of the world to attend a diabetes meet up.

Yet here I am today, surrounded by such an amazing tribe of people with diabetes. People who are bright, people who are actively bringing about change in their own communities, and above all people who I can exchange a look at and know that they simply ‘get’ it.

At the end of Tuesday’s #OzDSMS summit, I expressed to a room filled with fellow people with diabetes what an absolute privilege it always it to sit among such a bright group of individuals and hear their perspectives.

My cup is truly full.

(I know, I talk about peer support far too much…)

Disclosures: Ascensia Diabetes Care provided hospitality during Tuesday’s #OzDSMS which included lunch, drinks and canapés. Diabetes Australia covered my flights, three nights accommodation, some meals and registration to attend the Australasian Diabetes Congress in Sydney. I gave up my own time to attend, and am sharing my own thoughts, as always.

3 Comments

  1. Tony Sangster

    Thank you Frank for a most thoughtful post. Lived or living experience is still unfortunately paid lip service by too many health services whether in primary, secondary or tertiary care. Most just wish, it appears, to be able to tick the partnering with community and patients box in their accreditation prep schedule but fail to actually act on the input of those with lived experience. lived experience also includes carers and parents of children with a given health condition. Also now research institutions are having to ensure that community advocates, those persons with lived experience who can represent views, are involved from the start if research projects funded by NHMRC and the like, and right thru the whole process. That will require training of such people plus a recruitment process, lists of eligible and interested people with lived experience etc. In Adelaide i am writing to Unis who teach healthcare courses, e.g. medicine, nursing, pharmacy to try to get a leg on there for TIDs with lived experience as well with hospitals and health professionals’ continuing education, It will take some persuading but i believe as you do that lived experience is a valuable asset which cab be used for the good of all.

  2. Pat Keating

    Wow Frank, it’s always good to read your comments, well written. I also think it’s important for people to attend these Conferences that have to live day by day with this relentless disease. We provide first hand knowledge which is also good for research and hopefully a cure.
    Regards Pat.

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