Thursday 7 November 2019

I’ve Gotta get a Message to You: mixed messages in raising awareness of diabetes.

It’s Diabetes Awareness Month, built around World Diabetes Day, November 14th - the birthday of Sir Frederick Banting, inventor of the insulin injection therapy to which those of us living with Type One Diabetes owe our lives and well-being.

Every November in this, the social media age, screens turn blue and people with diabetes spring into action with posts, blogs and images intended to “promote awareness” of diabetes. Amongst this torrent of awareness-raising material, there’s always good stuff, some entertaining, some serious. Eloquence, insight, seriousness and humour in plentiful supply; quite a mixed message, you might say. Read on...

“Awareness raising” is very much a thing these days: there’s scarcely a day goes by that isn’t a *insert condition here* awareness day, and as a result I’m pretty sure that we are all better informed about a range of medical conditions with which some, often many, people are living, and for which someone somewhere is campaigning, researching, supporting and often fundraising in an attempt to improve matters. 

But what does “awareness raising” mean? Is it necessary, and does it work? 

This presents two big questions: whose awareness are we trying to raise? And what do we want them to be aware of?

The answer to that first question is fairly obvious: It’s those who don’t have, or don’t know well anyone who has, the condition to whom we should be directing our efforts to raise awareness. Awareness and knowledge of diabetes, which is so common, remain worryingly low, and I for one am reluctant to get angry about this. I knew very little about diabetes until I developed it, and I am sure there are many serious and common conditions of which my knowledge is very limited because of lack of experience. So there is a continuing need for those living with diabetes of any kind to remind the world that this invisible condition is there, and that every single human being is at risk of developing it.

But what of that second question: what do we want those unfamiliar with diabetes to be more aware of? 

Well, I recently spent an evening catching up with a longstanding friend of my own age, whom I hadn’t seen in many years, and whom I knew well in the days before I had diabetes. Naturally, our conversation turned to the topic of my diabetes, and he watched with a mixture of incredulity and interest as I tested and injected ahead of our meal together. He was vaguely aware that diabetes involved injections, but had no real awareness of the two main variants of the condition, of what the healthy pancreas does in a person without diabetes and how those with the condition have to replicate its job, partially or fully. Above all, like many people, he had never really been made aware of the central paradox of Type One in particular: that an effective and life-preserving medication - insulin -  presents an ever-present and unpredictable threat to our day-to-day well-being which must be monitored, anticipated and reacted to, not by professional experts, but by patients themselves.

So all those posts reminding those who don't know diabetes just how difficult, time-consuming and draining it can be are clearly necessary, and the awareness-raising message is well worthwhile.

But what about that message? Is that really all we want others to hear? Do we just want to make sure that others feel sorry for us, make allowances and help raise funds to finance better ways of preventing, living with or even curing diabetes? I really don't think so. Self pity is not always a good message coming from those living with a serious yet perfectly survivable condition. Harsh, but true: what we actually need is a mixed message

Now in all other areas of life, “giving off mixed messages” is not a good thing. We crave and admire clarity, honesty and consistency. Yet time and again, from both my own experiences and those I read and hear about from others, I realise that if we are successfully to “raise awareness” of the complex and mercurial nature of diabetes, we need to give a message which is indeed mixed.

As I said in my TAD Talk back in 2017, diabetes is an enigma: on the one hand quite something, yet on the other hand nothing at all. It's something that demands our attention, sometimes fully, often partially, every single day of our lives, and means that even the most ordinary of activities - eating, exercising, driving, having fun - can only be done and enjoyed with at least half an eye on our diabetes. Yet it's also nothing in that it needn't stop us doing anything and enjoying it to the full, throughout a long and active life. 

So the message is mixed, and that message with all its inherent ambivalence needs to be understood. Which is why I acknowledge and value the voices of all those who advocate on behalf of those living with diabetes during this and every month. Some choose to accentuate the negatives, wanting to be sure that the rest of the world understands better the burden of diabetes; others choose to accentuate the positives, wanting to be sure that the rest of the world understands that diabetes is not a barrier to doing anything. We all react differently, so a variety of apparently contradictory voices and responses is both necessary and desirable.

I've just gotta get a message to you, as the Brother Gibb sang, long before the white suits, falsetto and fever. 

But that message is, quite rightly and inevitably, a mixed message.

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