Last week I posted a video discussing whether people cared about being called a ‘diabetic’ or a ‘person with diabetes’. To anyone without a dodgy pancreas or with normal sensitivity to insulin, the difference doesn’t perhaps mean too much.
“You’ve got something wrong with your blood sugar level, after that it’s all the same isn’t it?”
Well, yes and no. For a start, there’s the never-ending trouble to get ‘normal’ people (Type Zeros) to recognise that Type One and Type Two diabetes are actually different diseases. But if we push beyond this, is there really a difference in the way people refer to you? Is ‘diabetic’ any more offensive than ‘person with diabetes’?
Arguably, yes it is; being called ‘a diabetic’ supposedly sums you up as being defined by your disease. Not only is this reductive, evidence that Healthcare Professionals (HCPs) think of you solely as a clinical problem, but there’s another part to this too. When you are diagnosed it is like experiencing a death – you’re shocked, bewildered by new information, as well as grieving the loss of your freedom. And because the changes you have to make will be hard, and at first you’re likely to get things wrong, everything combines to create a sense of inadequacy. At that point you do feel ‘diabetic’ – defined by your problems and nothing else. Being called ‘diabetic’ then can reinforce all those negative feelings.
As far as I can tell, those are the two main reasons why HCPs call diabetics ‘people with diabetes’ (PWD). It’s meant to show that they think of you as a person first and a clinical problem afterwards, and that they understand that feeling of stigma and are being sensitive to it. And yet they don’t and they aren’t, mostly.
For a start, the phrase ‘person with diabetes’ is so ungainly and long compared with ‘diabetic’ that it instantly draws attention to the giant elephant in the room they’re trying to skirt around. That avoidance suggests two things: either they don’t want to address that emotional issue (like it’s too awkward for them), or they are being patronising; protecting you from being spoken about in reference to your disease in case it upsets you.
Finally, I think that using PWD gives HCPs the idea that they are being sensitive. After all, they’ve made the mental note to acknowledge there’s a tricky issue, and have dealt with it by being careful with their choice of words. Except of course, really they haven’t.
Because the only way they can make life less awkward for everyone is to get practical. If you are in control of your diabetes, are confident about the decisions you make and not burdened by worries, you no longer feel inadequate. Trust me, I’ve been through the bad times and learned to make my disease work for me. Now if someone calls me a diabetic, I think “yeah, I am – I’ve overcome something, which most people never do.” It’s that experience that I wanted to pass on in Joe’s Rough Guide to Diabetes. And to help people put that learning into practice, I made Joe’s Small-in-one, because if it’s not a practical solution I’m not interested.
Does it matter then, what you’re called? Personally-speaking, on a purely practical level, not really. Call me a patient. Call me a diabetic. I don’t care, I’ve been called far worse! Call me a ‘person with diabetes’, if you really want to, but it just sounds weird; like a shop calling their customers ‘people with money’.
On another level though, it can make a difference: there should perhaps be another term for HCPs to use. PWD is not a phrase that engages people: it’s what a computer would make if asked to redefine diabetic to sound more human. Why does that matter? Well, diabetes care has to be a partnership between HCPs and patients. HCPs have the theoretical knowledge and expertise, and diabetics have the actual day-to-day control and power to change their lives. If a diabetic isn’t engaged by an HCP, and doesn’t trust them, they won’t listen and nothing will work for anyone. You know how annoying it when someone calls you the wrong name in rest of your life (e.g. you’re Nicky, but someone insists on Nicola), why should it be different in a clinic?
Partnerships are about giving and taking. HCPs have all the authority of a degree, years of experience, and the healthcare system behind them. Diabetics (particularly newly diagnosed ones) have none of that. So if there is a new term it should come from diabetics themselves: if you want to engage me, ask what I want to be called. That’s making clear you realise I have some role to play. Calling me a PWD is just another misguided (if well-meaning) way of labelling me as diabetic.
Who knows, when diabetics get to define themselves, you might get some names that actually speak to their experience, of how they see their lives managing diabetes. They could be Glucose Gladiators, Insulin Investigators or Sugar Superheroes!
But you’ll never know unless you ask.
Joe (a Diabetic)