I don’t write about language and diabetes very often, if at all. Why? Because I’m not that bothered about it. There are certain terms that Diabetes HCPs shouldn’t really be using in relation to dealing with patients (compliance and non-compliance being two of the most ridiculous and frustrating), but in general language it’s too much of a personal minefield and results in far too many eggshells being stepped on.
So what was the prompt?
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.
Unlike other people that have a major view on language, I’m fairly indifferent towards it. The reason for this stems from what I wrote about yesterday. Diabetes doesn’t define me. As such, many of the terms (especially the much derided term “diabetic”) just relate to something that’s part of me, but isn’t me.
For this post, I wanted to explore, specifically the etymology of the two terms that have become “vocabula non grata”. Let’s start with the my favourite, “Compliance”.
How has this entered the medical lexicon and what does it mean?
The Oxford English Dictionary says the following:
I think it’s fair to say that in reference to medicine, we aren’t talking about the properties of a material, so we’re left with option 1. If you look at the taking of medication, compliance is meant to mean “following the prescribing instructions”. Taking the medication as it is supposed to be taken. According to the World Health Organisation, an estimated 50% of treatment regimens are not followed correctly, resulting in sub-optimal outcomes. In many parts of the world, this use of Compliance has been swapped for Adherence (which I’m not sure is any better), but in many Pharmaceutical presentations, it is still there. Why does this rile diabetics? Because of the opposite of compliance, non-compliance.
Whilst non-compliance should mean “not following the treatment regime implemented” it has come to mean something more perjorative. To many it is a term of judgement suggesting that they aren’t doing everything they can in order to manage their condition. Their Hba1C is non-compliant because they aren’t below the 6.5% target set by various bodies. Their treatment regime is non-compliant because they aren’t meeting targets.
For many, healthcare professionals and pharmaceutical companies have little involvement in the treatment in the first place. The management of Type 1 diabetes is very much down to the individual, and each individual making a decision every time they eat on modern MDI regimes is making twenty or more clinical decisions a day. Clinical? Yes. They are deciding whether to administer a and how much to administer of a life threatening or life providing substance. That’s over 7,000 clinical decisions per year from someone who’s job is not being a medic, but a whole bundle of other stuff. In that context, the term “non-compliance” seems absurd.
In the context that the person making decisions isn’t following a specific treatment regime but is managing a condition based on constantly changing variables within a provided framework, there isn’t room for a term such as compliance. It’s not that it is wrong. it’s that it simply doesn’t exist. So we shouldn’t be seeing it in relation to diabetic treatment regimes and achieving target outcomes.
If it isn’t obvious why this is not a popular word to someone who lives with a life long disease that they are trying to manage to the best of their abilities whilst getting on with life, I don’t know what is!
So what of everyone else’s favourite/derided “Diabetic”, a word that I’ve already used here?
What type of word is Diabetic? Let’s refer to the Oxford English Dictionary again. It has two:
There is a view amongst some of the diabetic population that diabetic is a negative term and defines a person and that you wouldn’t call someone with Cancer a “canceric”, and many other terms. You can find arguments in both directions. They prefer “Person with Diabetes”. Now, the thing I note is that a person with diabetes (or PWD) is the definition of Diabetic…
So why has this become negative? Two words – Press Coverage. The massive increase in Type 2 diabetes and the associated use in the press and victimisation of it as a lifestyle, self-caused disease has resulted in a wider, more negative view of the term “Diabetic” and diabetes in general. If we drop back fifty years, to say you were diabetic, to most people, meant that you had to take insulin and potentially had a short lifespan ahead of you.
Over the last ten years, it’s come to mean that you are a greedy, lazy, pig who deserves all you get, if you believe the press, and specifically certain British newspapers. I suspect that this is the reason that some people now rile a little at the use of the term “Diabetic”.
But I fail to see how “Diabetic” and “Person with Diabetes” really differ (aside from the latter being harder to say). Ultimately, the changing view and misunderstanding of diabetes driven by poor press coverage and sensationalist journalism leaves both terms suffering image problems. For me there is nothing between the two. And besides, aren’t we all a whole lot of things as well as diabetic, including, potentially, pragmatic, enigmatic or even dogmatic? As I said yesterday, I am diabetic, but I am not Diabetic. No-one who knows me would say “He’s the Diabetic” as their description of me. But that’s me. If others want to be PWDs then who am I to stop them?
Sometimes, I fear we personally put too much significance into a word.