"Chronic" - An Exploration of the Harmful Effect of Labels & Language
“Chronic.” By itself, just a word with a standard definition applicable to a broad range of situations. “Of an illness - persisting for a long time or constantly recurring. Of a person - having an illness persisting for a long time or constantly recurring. Of a problem - long-lasting and difficult to eradicate.” (Oxford Dictionary).
However. all words carry connotations that expand beyond their simplest definitions - some more than others - and the term “chronic,” in the context of eating disorders, carries some heavier meanings that can negatively impact individuals struggling. “Chronic” in this context, typically refers to someone who has been struggling with eating disorder thoughts and behaviours for a longer period of time (although there is no standard definition of what that length time has to be before a person is considered “chronic.” Typically it is in the realm of 10 or more years.) “Chronic” also tends to be used more when it comes to individuals struggling with the diagnosis of anorexia nervosa and what is pegged as a certain personality type - inflexible, rigid, and over-controlled.
Like any terminology, especially those in reference to an individual’s health situation, the intent is to communicate information that can guide approaches to treatment and support. However while the intent behind the term “chronic” may not be maleficent, it has become a very limiting label that can sit like the weight of a verdict on an individual and their recovery. The potential benefit of a label such as “chronic” guiding treatment for clinicians seems far outweighed by the negative stigma (internal and external) it can create for patients.
In B.C. (and across Canada) we don’t currently have much in the way of sufficient funding or treatment for eating disorders in general, but especially for adults who have been struggling for longer periods of time. As is often the case for many types of services (disability, mental health, and otherwise), options and funding become more limited the older a person gets (at the same time that personal responsibility increases for the individual.) As people age out of the youth system they are faced with a difficult adjustment and when a label is added to that process with the implication that they are “refractory” or “resistant” to treatment, we can leave people feeling incredibly hopeless about the prospect of ever achieving a full recovery.
The thing about eating disorders is that they can occur at any age. They often start young and there may be periods of ups and downs in an individual’s recovery path. By the time someone hits their early to mid-twenties they may already fit into the general definition of “chronic” and that is really kind of horrifying. If I personally compare the way eating disorders are approached in healthcare with my own experiences of nursing on surgical units, I cannot help but see an incredible difference that reflects a great deal of stigma. Of course mental health conditions such as eating disorders are complex to treat and multi-factorial in origin, which can be much more complicated than addressing some physical health concerns. That said, I have worked with patients in their 80s and 90s who we still aggressively treat with life-changing surgery (amputations, ostomy creation, etc.) Part of that is because there may not be another option… Still, we don’t tend to perform surgery on individuals unless we expect that they will be able to cope and adapt and recover. Yet, when it comes to eating disorders, individuals entering their mid-twenties, thirties, forties, fifties (who would otherwise be considered “young” in healthcare) are often carrying the weight of being labelled a “hopeless case” (whether directly or indirectly through labels such as “chronic,” “resistant,” or “refractory to treatment.”)
While an individual’s needs may change and the challenges they face may shift over time, they are ALWAYS worthy and capable of recovery. It’s just that there are differences in the type of support that’s needed and we don’t currently tend to those needs very well. That is not the individual’s responsibility, it is ours - to provide services that meet the individuals needs and the unique context of their life and recovery journey. With any other health condition we would not be providing an inappropriate level or type of treatment to a patient’s health situation and then labeling the patient (and potentially implying blame) if those treatments did not work. Some have used the example of how we treat cancer to compare, e.g. it would be entirely inappropriate to address stage !V cancer with stage ! treatments. This is an illustrative metaphor even if the situation differs. The point is, the approach we use for youth with eating disorders is not appropriate for those who have been struggling longer term (and vice versa).
A large part of an eating disorder is struggling with the motivation to change. We may have moments of motivation, but consistent and sustained motivation is hard to continuously generate on our own. This can become more challenging as patients spend a longer period of time in their illness because that limited reality become so normalized and those neural pathways become so habitual, it’s hard to imagine anything else outside of that reality. But there is an entire world of possibility out there for each of us. This is where supports need to be patient and inspiring and persistent in reminding people that the world can look very different and that change is always possible for any of us (no matter how long we’ve struggled or what our struggles look like.)
Just as the definitions for chronicity in eating disorders are vague and poorly defined, so is the understanding, research base, and evidence-based approaches to treatment (Minimizing & Treating in Eating Disorders a Clinical Overview, 2012). In recent years there have been some attempts to incorporate harm reduction approaches into the treatment of chronic eating disorders; one example can be seen in the adaptation of Assertive Community Treatment (ACT) teams to eating disorder patients, primarily in Ontario (although there is also an ACT team for eating disorders offered through the Provincial Adult Tertiary Eating Disorders Program in Vancouver; however information regarding this program’s effectiveness is hard to find). “The goals of [ACT programs] are to improve the quality of life of psycho-socially disabled and medically unstable eating disorders patients and to reduce their rates of re-hospitalization” (Assertive Community Treatment Teams for Patients with Eating Disorders, 2008). Again, data from this particular cited project is difficult to find. ACT teams may provide a useful approach for patients, but there needs to be more research done on their utility. I personally feel ACT teams could be a valuable option, but there is something left wanting in them as well. I am all for the power of harm reduction in the specific patient populations where this approach might be useful, so long as that’s not where we stop - simply working to keep people out of hospital is depressingly inadequate and a disservice to these patients and their potential in recovery. At the core of it we need more research, better options, and improved funding in order to improve and expand services so that they are addressing the individual needs of patients - wherever they are in recovery and life.
We need to nourish hope in ourselves as patients, hope in our patients as clinicians, and hope in our loved ones as family members. It can be exhausting work to nurture a sense of hope, but it is some of the most important work we can ever do because no human being is ever hopeless, we can always grow, we can always change, we can always move towards a better life. The label of “chronic” does not inspire this needed hope.
There are of course things to be aware of if someone has struggled for a longer period of time, that it may take much more work to shift habitual patterns and ingrained disordered thoughts. But again, while an individual’s needs may change and the challenges they face may shift over time, they are ALWAYS worthy and capable of recovery.
Kaplan, A. (2008). Assertive community treatment teams for patients with eating disorders. Eating Disorder Review. Vol. 19, no. 3. https://eatingdisordersreview.com/assertive-community-treatment-for-patients-with-eating-disorders/
Wonderlich, S., Mitchell, J. E., Crosby, R. D., Myers, T. C., Kadlec, K., Lahaise, K., … Schander, L. (2012). Minimizing and treating chronicity in the eating disorders: a clinical overview. The International Journal Of Eating Disorders, 45(4), 467–475. https://doi-org.ezproxy.library.uvic.ca/10.1002/eat.20978