Healthcare is a highly structured environment and everyone has their assigned rights and responsibilities that belong to those roles. Those within the system are highly motivated to maintain the status quo to keep the forces of chaos subdued.
Diabetes, particularly type 1 is troublesome to the health status quo. For starters none of us can ever be the ideal patient. We can’t be healed in the “you’re good as new” kind of way and the professionals have to hand over their traditional roles to us. We are the ones doing the injections, the blood testing and keeping track of our health. It is little wonder that many professionals view diabetics as troublesome patients.
As if this isn’t bad enough, many of us with diabetes (and other health conditions of course) choose to speak to each other and publicly about living with diabetes and we’ve been able to do so very effectively via social media. This sort of activity is threatening to the system and the gatekeepers want to fight or control it.
The fighters are fairly predictable they huff and puff about the dangers of listening to ‘non-medical advice’ and speak over patient voices. Even some (far from all, but some) of our advocacy groups do this, they drown out the thoughts, hopes and fears of people with diabetes with the words of healthcare professionals telling us what’s good for us. Other gatekeepers worry a lot about what is “medical advice” and seem to want to extend the definition all the time.
The explosion in bloggers, Facebook groups, twitter users and chats in the health space is proof that fighting the phenomena is doomed to fail. So, the next thing they try is to make us worker bees in the system. Defining what our role is and occasionally trying to co-opt us as low status, cheap labour for “the system”. So what are these roles? The two most common are:
Health Promotion I heard this term being used to describe what diabetes bloggers do recently. Few people with diabetes promote anything. We participate in social media to share our stories, to exchange knowledge and information about the nitty gritty of living with the 24/7. 99% of those in the diabetes space recognise there’s no one size fits all and what works great for some doesn’t for others. Nobody wants to promote ill health but I find it refreshing that in the diabetes space we talk about what works and is practical for US not what the text book says. I reject the suggestion that I’m in any way promoting “health” because that assumes there is one right way worthy of promotion AND that I am in the diabetes space to push this “way” onto others. I push being informed and having a voice but the way you use your voice and the information that you prioritise is entirely up to you.
Peer Support What I don’t like about this terminology is that it assumes hierarchy and superimposes weakness. We don’t call a football or netball club “peer support” even though this is a huge element of what it does. What I receive from my “peers” in the diabetes community is camaraderie, encouragement and loads of useful information and I try to reciprocate and pay it forward as much as I can. I don’t participate in the diabetes space because I am looking to be propped up or prop others up. What we’re doing is just part of the human condition, sharing stories, forming bonds, seeking information with people who understand it’s not something that needs labelling or roles or hierarchies.
I’m blogging because our voices matter and I want to share the lived experience of diabetes with others going through the same things. Sometimes I may be guilty of promoting my ideas of health or of supporting or being supported by my peers but these are just small (potentially priceless) elements of the rich tapestry of the diabetes community.
We should not allow ourselves to be defined or limited by the health system’s desires to control us. Don’t be just another brick in the healthcare wall! (With apologies to Pink Floyd)
If you have a couple of minutes to spare please do this quick survey on diabetes conferences!