We know that eating disorders (EDs) are not choices, but is recovery a choice? I spend a lot of time thinking about this because it has everything to do with how I design treatments and how I work with people in general. What you believe about human behaviour impacts how you engage with others. What you believe about choice when it comes to eating disorders work will influence everything you do as a clinician.
A few caveats before I say more: I am perpetually learning. I have never once felt like I had “the truth” about anyone or anything and frankly, I feel most comfortable in this context. I am not interested in being “the expert”, I am best suited to co-create. I am fallible and I am biased. I am influenced by my lived experience, my academic background, and the incredible colleagues and clients I have had the honor to sit with over the past two decades. I am most certainty not writing this to be “right“. I am writing this because I have been typing and re-typing it out for a while after receiving many questions about this and figure some exposure might keep this important dialogue going. So here we go…
Is recovery a choice?
Not in the way most people think about it.
The first problem is that “recovery” itself is poorly defined. What does it mean to recover from an eating disorder? When you ask if one “chooses” recovery, it implies that recovery is a black and white concept, a linear process that one follows. Yet, we know that this is not true. Regardless of the precise definition, the act of “recovering” requires a substantive skill set that many do not have either by way of biology or by virtue of a depleted or lacking learning history. Moreover, traditional ED treatment paradigms require clients to have specific abilities, access, and skills some of which are rooted in racist, ableist, and colonial frameworks that render the ability to “choose” recovery a very complicated and murky concept.
Before I write more, I want to highlight a few of my assumptions and biases about people struggling with eating disorders:
- I believe people want to get better, feel safer, and be more grounded. I do not believe that people “like the sick role” or that they don’t want to get better. Some people have been reinforced for being very unwell, but that is not to be confused with a desire to feel better.
- I believe people want to end the tremendous suffering they experience and that they long for a life free from the physical and psychological horrors that the eating disorder and it’s co-occurring features impose upon their lives.
- I believe eating disorders are not choices. The science on the genetics and neurophysiology that drives the development and maintenance of these disorders is exploding. It seems like each month now I read a new article that helps to better explain the metabolic, sensory, perceptual, and reward system differences (among many others) that underlie these illnesses.
To work towards recovery, in my view, means that an individual has to have certain capacities:
- To begin with, one has to be aware that there is something to recover. This is problematic for those with EDs in many ways. For example, a number of clients struggle with anosognosia (a brain-based phenomenon in which a person is unaware of the problem/can’t accurately assess the severity of the situation). Many people with EDs have difficulties with a concept known as interoceptive awareness, which is the inability to accurately sense changes and cues from the body. The unique sensory and perceptual differences that people with EDs experience also makes it very challenging for them to notice that there is are problems. Others, especially those in larger bodies, have been chronically invalidated and have been made to believe that the pursuit of weight loss at any cost is “appropriate”, thus many don’t even know they have an eating disorder. How does one “choose” recovery under such conditions?
- I would also argue that one has to agree that changing ED behaviours is in their best interest. While that might seem obvious to those who don’t suffer, this is not so evident for those in the midst of the illness. Given that many ED behaviours are ego-syntonic and serve significant self-regulatory functions, change is a completely destabilizing and threatening concept. I imagine it might feel like asking someone with a horrifying fear of heights to hook themselves to a bungee cord and free fall from a 70 foot cliff into a canyon. Recovery is an intimidating and overwhelming prospect, even when you want to pursue it. It cues the threat response (also hard to control). How does one freely “choose” recovery when the symptoms themselves are self-regulating and familiar and threat is so high?
- As stated above, one has to have the ability to tolerate a substantive amount of distress to enter ED treatment. How does one choose to eat, face feared foods, and stabilize weight in the face of co-occurring and biologically based emotion regulation difficulties, sensory differences, perceptual difficulties, and metabolic anomalies? If you compare this to the leading treatments for PTSD among those with chronic emotion regulation difficulties, it is recognized that it is unrealistic to expect a client to choose trauma work safely until they are able to learn how to regulate and cope more effectively, otherwise the treatment falls apart. How does one “choose” recovery when these issues aren’t adequately addressed in most ED programs?
- Finally, one has to be able to tolerate an intense level of vulnerability and to be able to trust others to feed them, to discuss very intimate details about bodily processes, and to engage in a manner that is interpersonally effective. Many clients struggle with co-occurring symptoms (e.g., trauma, Autism Spectrum Disorder, anxiety and mood disorders, learning differences) that interfere with attachment, trust, and interpersonal safety. Moreover, so many of our clients have been chronically invalidated by the healthcare system. What does “choosing” recovery mean when these relational skills and abilities are not available or when someone has a history of being judged or marginalized within our system?
And yet, in spite of the complexities involved in making a decision to engage with treatment, there is still a narrative that clients fail treatment when the treatment doesn’t work, that they didn’t want to recover, weren’t ready to give up the ED, or that they weren’t motivated enough.
Except, I don’t buy that narrative.
I do not view recovery as a choice. I think people genuinely want to get better AND need to do that in ways that address the complexities of their illness and the system in which we operate. I don’t believe that everyone can recover with the limited resources, systemic barriers, and lack of diverse treatment approaches currently available. Someone wrote to me recently and explained that they had been told to try food exposures and that if that didn’t work, they could “just go back to their eating disorder”. Since this person shared this account, many others have written to me sharing similar stories of being told that they could “keep their ED” if the experiment of treatment didn’t work. This is a problem for several reasons:
- When people are told that they can “just go back to their eating disorder” it communicates CHOICE.
- It presumes that if the client just worked harder, they could CHOOSE recovery.
- It holds that, if the individual is unable to meet the requirements of the treatment, that they CHOSE the ED instead.
It is interesting because in DBT-ED we use a commitment strategy called “ freedom to choose in the absence of alternatives”. It is a position in which the therapist highlights that the client, who may not have a whole lot of options at a given point, still has freedom and dignity to decide whether they are able to try a given treatment. We hold space for them to try the treatment, stop the treatment, think about the treatment, but we don’t communicate that they are choosing to stay sick. They might choose not to do treatment which might mean that suffering continues AND this does not mean they choose the illness(es) from which they struggle.
This is a complex issue and I look forward to hearing your thoughts. We have to talk more about these concepts because it is making a difference. I bring these issues to my clinical trainings and I can see first-hand how it is making a positive impact. So thank you for listening and for writing to me so I can try my best to co-create novel ways forward for all of us.
Anita