Mind Your Language #2

Mind Your Language #2

This column article was one of the first to appear in Update magazine (around Spring 2004) and formed part of my earliest experiences of listening to people with diabetes relate to their condition.

More broadly, we all face issues of control in our lives and our beliefs about the extent to which we have choice or are determined by our limits and circumstances have a powerful influence on how we engage with the world and events.

Who’s in Control?

What does “Control” mean for patients with diabetes? It is a common word in diabetes care: “Blood Glucose Control”, “Controlled by Diet”, “I don’t have good control of my diabetes?”  Specifically such terms mean the method of regulating blood glucose, but frequently patients only see the implied meaning.  On the Careline callers often say that they are being controlled - by their condition, their anxiety about blood glucose, food, injections - and when they do, invariably it is because they perceive their own control to have failed. 

People with diabetes feel as much as know, that diabetes is serious, and surely this means they must be very careful and constantly vigilant. They may perceive the consequences of failing to achieve total control are very serious.  Control implies vigilance, constancy and pinpoint accuracy, like balancing on a tightrope.  It doesn’t ask “can you cope?” or “what might you do to cope better?”

Concrete concepts of control can lead the patient into some very rigid and narrow beliefs and behaviours. Monitoring blood obsessively, panicking at readings deviating from 6mmols/l (often confusing finger-prick and HbA1c targets), eating the blandest food believing it is medicine or knowing they can never walk the razor’s edge and denying their condition, are all common control problems.  In many ways this should not be surprising if we consider how patients are likely to have experienced this word before – a “control freak” is someone who micromanages every aspect of their (and other peoples) lives, “out of control” is a phrase we use to denote complete chaos, a “controller” is someone with absolute authority and a “controlling vote” has the power of veto over all others. Control is a polarizing concept in that anything that is only controlled to a degree is insufficient.

It is also significant that patients who perceive their locus of control to be internal adapt to their diagnosis, and cope, better. They also tend to worry less about aspects of their condition that are out of their control and are more responsive to new challenges. In other words they are more realistic, flexible and less polarized and rigid. In contrast an external locus of control is felt by patients as fatalistic but in addition continue to focus on evidence that they have no power to effect change. They often feel that doing their best will never be good enough.

The desire then, is patients who are responsive managers rather than attempting to be controllers, and management has a greater sense of ongoing flexibility and responsiveness and less of the “all or nothing” connotations of control. The question is, are we prepared to give up control to the patient manager?

Further Reading

de Ridder D. Geenen R. Kuijer R. van Middendorp H. Psychological adjustment to chronic disease. [Review] [142 refs] [Journal Article. Review] Lancet. 372(9634):246-55, 2008 Jul 19.

Frostholm L. Oernboel E. Christensen KS. Toft T. Olesen F. Weinman J. Fink P. Do illness perceptions predict health outcomes in primary care patients? A 2-year follow-up study. [Journal Article. Research Support, Non-U.S. Gov't] Journal of Psychosomatic Research. 62(2):129-38, 2007 Feb.

Samson A. Siam H. Adapting to major chronic illness: a proposal for a comprehensive task-model approach. [Journal Article] Patient Education & Counseling. 70(3):426-9, 2008 Mar.