In the midst of the launch of the UK’s statement about language and diabetes (good to see them catching up with the pioneering work of Australia on this) I’ve been thinking about the sort of communication that I’ve found most helpful around diabetes. Here are some of the things that have stuck in my mind as being really helpful over the years.
“If it works then you do it“. An endo said this to me ages ago in the context of me going a bit outside the rules. An affirmation that he thought I knew what I was doing and that the rules are there to help not hinder that was empowering at the time.
“These people with no hypos and invariably impressive HBA1cs, always have some insulin production left.” This was helpful, in the presence of ever decreasing recommendations for A1cs, it was helpful to hear that it is more difficult when you have zero insulin production & that there’s more to diabetes management than the better you are at following rules then the better your a1c, there’s more to it than that.
“The power’s right where it should be, I’m just here to help with the paperwork.” A really helpful comment made by a GP in the midst of some of the hoops you have to jump through with diabetes, just to stay alive!
“I wish I’d used the term infinite creativity rather than intensive insulin therapy…” I can’t describe how happy I was when Professor Jay Skyla used this term at World Diabetes Congress 2013. It sums up the complexity and the ongoing demands to tweak things, make split second decisions etc to constantly keep a tab on your bsl.
Ages ago I related to my endo at the time that another specialist had admonished me for an a1c of 7.2% (this was back in the days of Actrapid and Protaphane when that number was pretty darn good AND I was suffering from lots of hypos to get that number too). The endo said “tell him if he’s got any suggestion call me and I’d be happy to hear them.” When I replied that I’d said that and the response was “I’ll leave that to your endo”, said endo responded with “what an arsehole”. That conversation made me feel much less alone against the forces of the medical establishment and it made me laugh…gold!
Of course language is just one part of any communication event and communication can only happen within the context of a relationship. The interactions that I’ve found most helpful have acknowledged the reality of my diabetes and of me being the one that has to make it work.
This is all brings me back to one of the words that I really hate “compliance”. Apart from the falsity of beliefs about managing diabetes the word betrays, I wonder if the professionals who use the term have pondered what it says about the HCP-patient relationship? It places the professional in the role of maker, conveyor and enforcer of rules to which the patient must adhere. How sad for doctors and nurses to perceive of their roles in that way. Still that’s their problem but it does make me laugh when I hear professionals use these terms to imagine they see themselves as enforcement officers like this: