Why People With Diabetes Must Raise Our Voices
Collaboration between people with diabetes, health care providers and policy makers must happen to create better outcomes and quality of life for people living with diabetes, and indeed the entire community. As a person living with type 1 diabetes since 1979 and working in diabetes since 2001, I have seen a shift towards this model in the past few years, and believe social media is helping to drive this shift, through empowerment of people living with diabetes. But we have a long way to go.
When I started working in diabetes in 2001, I basically quit my job and set off to create an online community and counselling service which was at that time, pioneering. Nobody was really using technology to support communities and online counselling was rare in Australia. There was no social media so I created my own ways to connect people via forums, email buddies and a blog.
I remember being told by numerous people that breaking into the diabetes scene was hard, that there was a lot of politics and patch ownership and that as a “patient” it was likely I would not be taken seriously. But still I pushed forward, full of passion and a fire in my belly to do something to improve the quality of life for all people living with diabetes.
As I began this journey as an “outsider” as far as the diabetes field was concerned, a patient, a person with no medical training, but a 4 year degree with honours in social work, I began to experience this push back against my voice. This was brought home to me strongly in one phone call with a diabetes educator as I walked the streets and used the phone and the web, to connect with the right people, when she said
” people with diabetes should not be working in diabetes, they carry too much baggage”
This almost broke me and I remember sitting there sobbing to my husband that I could not make it happen, there was no way to break into the field as an outsider.
Yet here I was, actually an INSIDER. I was a person who had lived experience, who brought my personal journey of diabetes, coupled with my professional expertise in mental health, and my nerdy passion for the then very baby like internet, to challenge the system and create a world in which people with diabetes could have a voice and a better quality of life. And then I got lucky. I connected with another person who had type 1 diabetes and happened to be working on the “inside” at a large consumer advocacy and policy organisation in Australia, who championed my ideas and hooked me up with some other people who believed in my ideas. It took 2 years but eventually I saw a crack and pushed my way in.
Fifteen years later I am a diabetes educator, having studied this about 2 years into the journey to provide credibility to my status with peers and to increase my knowledge of diabetes (because you never get give the same amount of information as a patient as you do as a health care professional), have won multiple awards and grants for my work in diabetes and am completing my PhD.
This has not been an easy road. Over time things got harder, easier and harder again. I have had personal and professional challenges. Social Media changed the entire game as people with diabetes started to come out from the woodwork and use our shared voices – consumers started to talk to each other across the globe. People asked us to support them in facebook and we responded with closed Facebook groups supported by peers and health care professionals. Twitter chats started, people began to sit up and take notice.
Instead of feeling embarrassed to take out my blood glucose machine at a diabetes conference in case a colleague sees my results, or being too scared to talk about my personal experience in a presentation as it may be seen as “baggage”, I now proudly display my pump and use my personal journey in my presentations to make a statement, because well really, what is wrong with baggage?
The more suitcases you carry the more great stuff you have inside them to share.
Helen