If you’re a clinician or a “Type Zero” (someone without diabetes) choosing the words to use when talking about diabetes is not straightforward. That’s true even for “Type ones” like me. The complexity stems from the identity associated with diabetes, and the relationship between those who have diabetes and those who are meant to help them manage it. In most cases, the structure of that relationship is: a clinician tells us what to do, and we’re meant to go off and execute their orders.
The problem is life doesn’t really work like that. Of the 8756 hours a year diabetics (and other patients with long-term conditions) spend away from clinical settings (versus the 4 hours on average we spend in them), following the rules as laid out by clinicians is not at the top of most people’s “to-do” list. It’s not that we don’t want to be healthy and “well-controlled,” but the nature of our relationship with clinicians tends to bar the effective exchange of high quality healthcare advice. Clinicians focus is mostly on glycaemic control, whereas diabetics are as much, or more, concerned about everything else that is going in their life—work, friends, family etc. When we meet for an appointment, these priorities tend to clash.
The context is more problematic than the terminology
Along with the complexity of managing your life with a long term condition, clinicians need to understand the challenge and stigma attached to being diabetic. Feeling out of control of your own body is not pleasant. It is alienating; and can make you very self-conscious and awkward. It can also make you feel guilty. Ultimately, no-one else is responsible for your diabetes, and it will be you and those you love who deal with its consequences. And it makes you lonely too. It can be hard to articulate these feelings, and difficult to find someone with an understanding of diabetes that you might want to share them with.
In this context, let’s examine some common medical language. The term for a patient not managing their diabetes well is “non-compliant,” essentially meaning “not doing what they’re told.” Glycaemic control is commonly referred to as “good” or “bad,” which can obviously be insensitive to the difficulties a person may face in this constant challenge. Some argue even the term “control” is misleading and potentially negative by setting unrealistic expectations; after all when can any of us say we are truly in control of everything that governs our health and wellbeing?
And so, the argument goes, we should adopt language that recognises these sensitivities. Diabetics should be called “people with diabetes” to ensure clinicians remember there is a human attached to the medical issue they’re dealing with. “Patients” should be referred to as “people,” “persons,” or “citizens.” “Control” should be termed “management,” and qualifiers abandoned. All of this should help turn the patient-clinician relationship into a more efficacious partnership.
Except, personally, I don’t buy it. When I see a clinician in a hospital, I am a patient. Just as when I go to a cashier in a shop I am a customer, or when I go to work I am (at worst) an employee and (at best) a colleague. To call me anything else would just sound wrong.
I would argue that the language which people can find offensive or insensitive in the clinical setting, would be seen as generally inoffensive elsewhere. If you were discussing your diabetes with a friend or family member, would you care if they called you “diabetic?” I doubt it. The language itself is not at fault, it is the context in which it is used.
I understand that calling diabetics “people with diabetes” is meant to help change the relationship, but I find it counterproductive. It is such an ugly, ungainly phrase, and it takes so much longer to say than “diabetic” or “patient” that it ends up drawing attention to the very sensitivities you are trying to avoid.
Being diabetic means facing up to a daily complex challenge to stay healthy, juggling multiple priorities every time you eat or are active. And it means never being able to switch off. I recognise that struggle but I do not think of a diabetic as a person who is lessened in anyway. I think of a walking miracle—a person able to experience a full life and contribute to that of others thanks to modern medicine and their own personal effort, whether blood sugars are in the magic “normal” range or not. As a community, I think that diabetics must raise clinicians’ awareness of what it means to experience life from our side of the clinician-patient divide.
As I see it, the debate about the “hurt” caused by the language of clinicians is specious. The real hurt stems from poor relationships. I have heard a number of times from clinicians that they avoid taking a deeper interest in their patients for fear of “opening a can of worms”—taking on the responsibility for helping someone without having the means or time to do so. This situation is frustrating (if not damaging) for both sides. So we must address the dysfunctional relationship itself and the reasons that cause it. Clinicians need to be able to adopt a coaching mind-set, and elicit their patients’ wider concerns as well as ascertaining their skills, knowledge, and confidence to manage their diabetes. It’s only by doing this that a truly supportive package of interventions can be prescribed. This must include a range of options that can be tailored to help people as appropriate: comprised of health coaching, peer support, self-management education, and social prescribing.
Ultimately, the way to fix the patient-clinician relationship lies outside of language’s remit. Clinicians need to be equipped and trained to offer practical support. And for their part, diabetics need to be aware of the pressures that clinicians are under. Both sides need to prepare for their meetings, to know test results in advance, understand their implications, and have some idea of the outcomes that both would like to achieve. The final goal is to create a genuine partnership where both the patient and the clinician contribute to managing their health. This cannot happen overnight: relationships grow at the speed of trust. To start this, all a clinician has to do is show interest—ask the patient a question and listen to their reply. Why not ask them what they think about being called a “patient” or a “diabetic?” The answer may surprise you.
Joe Fraser is a Type 1 diabetic entrepreneur and activist. He works for NHS England as an Empowering People and Communities Delivery Partner, and in his own time runs Joe’s Diabetes Ltd.
· Delivery Partner, Empowering People and Communities workstream, NHS England (salary)
· Director, Joe’s Diabetes Ltd (joes-diabetes.com) (dividends)
· Co-investigator, LYNC telehealth research project, Warwick Medical School/ KCL (honorarium and travel expenses)