On labels and boundaries


What we call a disease matters. It matters to the person because a diagnosis is a marker: this problem is known, it’s recognised, it’s real (Mengshoel, Sim, Ahlsen & Madden, 2017). It matters to the clinician, particularly medical practitioners, but also those clinicians working within a largely “disease-oriented” framework (for example, physiotherapists, osteopaths) (Haskins, Osmotherly, Rivett, 2015; Kennedy, 2017). It matters also to insurance companies, or funding providers – who is in, and who is out.

The diagnostic label itself hides a great many assumptions. The ways in which diagnostic labels are grouped reflects assumptions about underlying similarities (and distinctions) between groups of symptoms. Added to this complex situation is uncertainty in how the person presents: are they a “typical” presentation? Who decides what is ‘typical’? Think of the classic signs of chest pain signifying myocardial infarct – but this applies to males, and less so to females. Women are less likely to be resuscitated after chest pain, and also less likely to be transported to the Emergency Department using lights and sirens (Lewis, Zeger, Li, Mann, Newgard, Haynes et al, 2019).

It is the physician’s quest for certainty and the patient’s illusion of certainty, however, that leads to many of the current decision-making techniques in the practice of medicine. Evidenced-based medicine seeks to provide information to physicians and patients to allow for more informed recommendations, and yet our current evidence base is imperfect owing to unreliable clinical data, incomplete taxonomy of disease, and a weaker focus on clinical reasoning.

Correia, Tiago. (2017). Revisiting Medicalization: A Critique of the Assumptions of What Counts As Medical Knowledge. Frontiers in Sociology, 2. doi: 10.3389/fsoc.2017.00014

With any luck, clinicians working in persistent pain management will have moved beyond a simple medical diagnosis when working with someone. While a diagnosis is crucial for acute management, once the pain has been hanging around for a while the illness-based aspects of dealing with pain become more important.

What do I mean by this? Illness is about the personal experience of living with a disease. If we think of disease as being about biological aspects, illness is about the “what it is like to live with” the disease. Talcott Parsons, a sociologist at Harvard University wrote that illness could be considered “deviant” behaviour: “…behaviour which is defined in sociological terms as failing in some way to fulfill the institutionally defined expectations of one or more of the roles in which the individual is implicated in the society.”(Parsons, 1951). While Parson’s language and some of his concepts represent the outdated views of society at the time, the notion of illness being “what it is like to” live with a disease is an important distinction for us as clinicians.

For clinicians working in pain management/rehabilitation, particularly with people who have been living with pain for months or years, understanding that on top of the biomedical label, each person also has months or years of the stress of dealing with that problem. For any of us, experiencing pain even for a short time can be puzzling, represents changes in how we view our bodies, often elicits irritation or anger, sometimes sadness and typically, actions to avoid or control the problem.

Now here’s the point of my writing this blog today. If any of us face an unnamed challenge, or if our situation doesn’t change despite “following all the rules” (thinking Covid-19 maybe?), whatever typical stress response we get is likely to be elicited. If we’re inclined to worry, we’ll probably worry. If we’re inclined to withdraw from being with others, we’ll probably do that. If we tend to have trouble sleeping, we might do that. If we get irritated and tetchy when we’re stress, well we’re probably going to do that too. This is normal.

Now if someone saw you and me today, and went through a structured clinical interview for diagnosis, I’m sure I’d at least begin to show signs of anxiety or depression. Two weeks of saturation coverage of Covid-19 will do that to you, and add the challenges of being penned up in my home without any shops open, and I’m probably going to be not my usual self.

Let’s think about the person we see who has been living with persistent pain for a few years. This person is enduring pain every single day. Has possibly looked everywhere for something to help – usually we’d think of this person as pretty motivated, but for some clinicians this begins to look like “doctor shopping”. The person might have fallen out with one or two previous clinicians who persisted in treating the problem the same way they’d treat an acute pain problem. This begins to look like “difficult patient” territory. Add to this some mood problems, lots of anxiety about everything else in life – and lo! we have a person ripe for a psychiatric diagnosis. Or at the least, “yellow flags” (risk factors for prolonged disability).

Now, the whole idea of risk factors for ongoing disability was intended to help us as clinicians pay attention to doing some different for people with those risk factors in their lives. That’s right: for clinicians to take on the responsibility for either assessing in more detail, reviewing more frequently, integrating active coping strategies into treatment, and perhaps referring for specialised care if that was warranted.

Yellow flags are not some kind of warning for clinicians to negatively label, perhaps even diagnose, a person as being “difficult”. Yellow flags should elicit from clinicians (us) an awareness that this person is vulnerable. That’s right, vulnerable – and needing more care.

I’ve heard talk over the years of clinicians stepping out of their scope of practice when looking at psychosocial risk factors. I’ve always thought that it’s a good thing to be aware of risk factors so that something can be done about them, because this person is a greater risk of poor outcomes. The problem arises when someone, without appropriate training, gives a person a psychiatric label. There are a few labels that spring to mind: personality disordered, especially borderline personality disordered; attachment disordered; somatic disorder…

The problem with labels is that they don’t get erased when the clinician who gave them that diagnosis discharges them. Those labels live forever on clinical files, insurance files, claims files, medical and hospital notes. Those labels can, and often do, invoke highly discriminatory behaviour. One person sent to Emergency Department with chest pain was told they should come back when they have a real problem (duh, chest pain = real problem) because, sitting at the top of the list of diagnoses was “somatic disorder”.

Clinicians – do not use labels without thought. Don’t use labels that sound technical (thinking ‘catastrophising’), don’t make a diagnosis that is outside of your scope, don’t over-interpret a questionnaire score, don’t judge people because today they’re distressed and cranky, or worried and tearful. For goodness’ sake: stick to your clinical boundaries!

Haskins, R., Osmotherly, P. G., & Rivett, D. A. (2015). Diagnostic clinical prediction rules for specific subtypes of low back pain: a systematic review. Journal of Orthopaedic & Sports Physical Therapy, 45(2), 61-76, A61-64.

Kennedy, Ashley Graham. (2017). Managing uncertainty in diagnostic practice. Journal of Evaluation in Clinical Practice, 23(5), 959-963.

Lewis, J. F., Zeger, S. L., Li, X., Mann, N. C., Newgard, C. D., Haynes, S., . . . McCarthy, M. L. (2019). Gender Differences in the Quality of EMS Care Nationwide for Chest Pain and Out-of-Hospital Cardiac Arrest. Womens Health Issues, 29(2), 116-124. doi: 10.1016/j.whi.2018.10.007

Mengshoel, Anne Marit, Sim, Julius, Ahlsen, Birgitte, & Madden, Sue. (2017). Diagnostic experience of patients with fibromyalgia – A meta-ethnography. Chronic Illness, 14(3), 194-211. doi: 10.1177/1742395317718035

Parsons, Talcott. (1951). Illness and the role of the physician: a sociological perspective. American Journal of orthopsychiatry, 21(3), 452.

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