Here’s the deal. Changing one word for another that means exactly the same thing is not addressing the whole #LanguageMatters issue. Acknowledging that one word doesn’t work and may not be especially empowering and positive for people with diabetes only to replace it with another that is equally problematic is not really helping.

Case in point: more and more healthcare professionals and researchers have accepted that the word compliant, (and its friends non-compliant and compliance) are out. So, they replace them with adherent, and non-adherent and adherence.

No. Just no. And stop it.

They mean exactly the same thing and do the same thing: rap people with diabetes over the knuckles for not following an often-imposed plan about how we should manage the condition we live with. (‘Should’ is also a dirty word as far as I’m concerned, but we’ll deal with that another day.)

I am frequently asked what words would be better, but I prefer to give an explanation about the reasons these words are problematic. Because I think if people have an understanding of why these words set some of us off, perhaps they may be less likely to simply swap out one tricky word for another.

Let me refer to the Diabetes Australia Language Position Statement for a moment:

‘Use of the terms ‘(non-) compliant’, ‘(non-) adherent’ is particularly problematic. Such terms characterise the individual as cooperative or uncooperative, especially when used as adjectives to describe the person rather than the behaviour. Using these labels can mean opportunities are lost to ask relevant questions, develop collaborative goals, tailor treatment regimens and make referrals that actively support the person to manage his or her diabetes. Attempts to increase ‘compliance’ and ‘adherence’ generally involve persuading the person with diabetes to change his or her behaviour to fit the health professional’s agenda.’

There is a lot of judgement attached to these terms.

I think back to when I was diagnosed with diabetes and the first inkling I had that I was going to struggle to follow directions was when the dietitian I saw the day after diagnosis showed me a rubber mould representing the quantity of mashed potato I should eat in one sitting. I was twenty-four years old and knew just how much food I liked on my plate and that was not it. In fact, it looked more like the quantity I would eat over a week – not one meal.

I mentioned that to the dietitian. I explained how I love food, but I eat until I am full and then stop because I’d learnt that listening to my body was a really important to me. (That sounds all Zen-like, but truthfully, it is just so I don’t get the revolting over-full feeling when I don’t listen to my body’s signals!) Surely there had to be a way that I could still do that even with diabetes along for the ride. Right?

She just looked at me and told me that I had to eat that amount because of my insulin dose. ‘Can I take less insulin then?’ I asked. ‘No. That’s not how it works,’ she replied, without explaining why.

So, I nodded and promised to eat thirteen kilos of potatoes at every meal. And within a week I had worked out how to eat less, dose less and still listen to my body. Oh – and I learnt how to lie to HCPs and tell them what they wanted to hear. And that I never, ever wanted to sit in a room with another dietitian.

Was I being ‘non-compliant’? Well, I certainly wasn’t following what I had been instructed to do. But I was eating what made me feel good and dosing insulin accordingly. Surely that had to count for something? Yet, when I returned to see the dietitian for the follow up appointment that I diligently (compliantly?) kept, she tut-tutted me for not following the eating plan she had given me – an eating plan into which I’d had no input.

This is a recurring theme in diabetes. We hear of people being ‘told off’ for not following treatments, but we are not given the opportunity to help shape those treatments.

Being ‘compliant’ in diabetes suggests that we are doing what we are told. It means that we don’t question, we just willingly follow directions without considering whether or not they work for us. It also suggests there are rules and that if we follow them – if we ‘comply’ with them – we can expect the outcomes to always be the same. Diabetes doesn’t work that way.

I think back over the two decades I’ve lived with diabetes and know that time and time and time again I have been thought of as ‘non-compliant’ simply because I didn’t do what a HCP thought was the best thing for me, instead working my way around and finding what worked. Diabetes isn’t fun, so you bet I have looked for ways to do things that take less effort, less time, less brainpower, less burden. That’s not because I don’t care. It’s because when I find a way that works better for me, I’m more likely to do it.

Every single one of those times that a HCP has thought of me as ‘non-compliant’ was a missed opportunity for us to work together to collaboratively come up with treatment plans, strategies and goals that worked for me.

When we are accused of being ‘non-compliant’ with medication, activity or eating plans, attending appointments, filling in glucose records or anything else that we are expected to do in diabetes, it’s not because we are being wilfully naughty. It is because whatever we have been asked to do is not right for us – we simply cannot do it, or don’t understand why. Sometimes of course we don’t want to do it, but there is usually a reason why we then don’t act.

Compliant (and non-compliant) are dirty words in diabetes. And replacing them with adherent (and non-adherent) doesn’t make it any better because they mean the same thing.

If you are a healthcare professional and use these words when referring to PWD, I suggest that you stop and start again. Think about what you are saying. The person in front of you is not a naughty child, waiting for your approval or rebuke. They do not need to be told that they have failed at meeting (what were probably unrealistic) expectations. They certainly don’t need to feel ashamed and judged by you.

What we need is something quite simple, really. We need to be asked what matters to us and what will work for us. We may need to be asked that a few times. If you are talking about a course of treatment, make sure that we understand that it is just a suggestion and that we can alter it to fit us. Remind us that if we can’t follow it that doesn’t mean we’ve failed. It probably means that together we need to tweak things so that we can follow.

Until the language that we see routinely in diabetes is about supporting, encouraging people with diabetes and positively influencing the broader community discussion about our condition, I will continue to call out any time I hear these words being used. I accept that there is no quick fix. And while I accept that healthcare is incredibly traditional in its communication, I refuse to accept it as a reason to continue to use language that is so damaging. ‘Because we always have’ or ‘Because they’re the words we use that make sense’ is not an excuse to refuse make change for the better.

Postscript

It’s not only in diabetes where we see this sort of language. See this tweet from The Grumpy Pumper about flaws in using the word compliant when it comes to those living with dementia.

Postscript two

Yes, yes, yes I do use the term ‘deliberately non-compliant’ as a badge of honour, wear t-shirts with the phrase boldly blazed across the front of it and carry a phone case with it proudly (in pink) splashed over it. It was used to reflect the opinion of healthcare professionals after I gave a talk about using DIYAPS. 

Advertisements