It is important to reflect on where different eating disorder therapies and programs perpetuate the struggle for individuals to practice and develop a sense of capacity and trust, within themselves.
So many individuals struggling with eating disorders have learned to trust authority over themselves, which may have been life-saving, but can also lead to traumatizing experiences. This further complicates the development of a sense of self-trust and/or the ability to trust others. Many eating disorder therapy modalities and treatment programs perpetuate this paralyzing sense of not being able to trust anything, which makes healing all the more difficult.
Collaboration (that is truly felt by the person seeking support), capacity-building, humility/vulnerability from professionals, and a respect for individuals as more than just their “eating disordered thoughts/voice” is critical to recovery.
I shared the above on Vancouver Island Voices for Eating Disorders (VIVED's) social media, as it is something I know I am not alone in feeling or expressing. It seemed to resonate with quite a few people (professionals and individuals navigating healing from their eating disorders, alike.) As such, I thought it might be helpful to explore this conversation more in depth in a blog post, as this topic is close to my heart and reflects many of my own experiences.
There are some aspects of this conversation that are generally applicable to eating disorder treatment settings (at least in B.C. and perhaps across Canada and other Western countries); however, everyone's experiences are different and I want to leave room for that. I will use some examples from my own life (as those are the only experiences I can speak to in depth), simply as a means to help situate this conversation in the context of how it can impact people on an individual level. If you have experienced something similar or dissimilar, I welcome your feedback in the comments.
I also want to express that any critique of the system I offer is not to deny that it has also saved my life, as well as many individuals whom I care deeply about. I offer a systems-level critique of the aspects that have also negatively impacted me, without meaning to attach personal blame to the majority of professionals who work very hard to provide excellent care within the extremely limited resources they have. Feedback of this nature is never something I intend to share without the aim of growth and improvement or the acknowledgment that help and harm sometimes go hand-in-hand, and there are aspects of change that are incredibly difficult to set into motion for complex reasons - some beyond my understanding.
Because I shall be using examples from my own life and experiences of treatment, please look after yourself if you choose to read this. I shall not be diving into unnecessary details by any means, but I will be discussing various encounters with treatment settings and levels of care. I know this can be a tender topic for many, but I would just like to say from the outset here, that the accessibility of formal treatment is not necessarily related to eating disorder severity, nor is it the only way to heal. Rather, access to formal treatment settings is generally reflective of privilege, stigma, and harmful stereotypes surrounding eating disorders (which are important to acknowledge.) I offer this one potential content warning here, in order to give myself the grace of telling my story as is, and exploring this topic without wanting to lose any critical points behind trigger warnings. I trust your capacity to decide what is safe for yourself.
With that said, let's get into this nuanced discussion.
When I first became ill with an eating disorder, I was considered quite young. Because of my age, I had very little insight; many of my symptoms were anxiety-related, highly paranoid, and eventually bordered on psychotic. It took a long time for my struggles to be recognized for what they were, and for my desperate parents to get someone to listen to their concerns (beyond suggesting I was a fussy eater or they were poor at parenting.) Unfortunately, by that point I required intensive support and re-nourishment due to the escalating symptoms as well as poorly timed physical illness, which exacerbated my symptoms. Once I represented the (harmful and inaccurate) stereotypical presentation of an eating disorder, my parents' concerns were taken seriously. In the realm of eating disorder care, that is a twisted form of privilege, but it is a privilege.
Treatment when you are quite young is seemingly logically, and sometimes necessarily, out of your own hands. This can be life-saving and certainly has been in my case; however, it may also have a deeper and long-lasting impact on a person's life. Early treatment experiences have ripple effects that distribute down the line of every healthcare interaction someone struggling with an eating disorder may ever engage in. They certainly did for me. Beyond interactions, the paternalistic dynamic in many treatment settings (for youth, but especially adults) can also exacerbate attachment injury and dysfunctional attachment styles. Furthermore, these dynamics may increase individuals susceptibility to compounding trauma in their personal lives.
By sharing my raw experiences, my hope is that people may appreciate how the very supports meant to save and heal lives, can also negatively impact them (even if unintentionally - at least in my case). It is all connected, and this concept of interconnectedness (a concept that is not new, even if Western healthcare is only just catching on) is one of the key ways that we can truly offer healing spaces for those struggling.
Medical trauma is defined as "a set of psychological and physiological responses to pain, injury, serious illness, medical procedures and frightening treatment experiences (1.)" As our understanding of trauma (and traumata) continues to expand beyond the conceptualization of veterans suffering from post-traumatic stress disorder (PTSD), medical trauma is coming more into general awareness. However, for individuals who occupy marginalized intersections of struggle (in this case I'm largely focusing on those with mental illness, particularly eating disorders), these experiences are relatively commonplace. While people may not have felt that these distressing experiences "qualified" as a valid form of trauma, they have likely felt the impact and lived the experience of it, regardless. It is important to remember that trauma is one's experience of - and reaction to - an event, not the event itself.
Being in treatment at a young age has shaped me for better (as I choose to make of it) and it has also caused damage that I am still healing from, which can be further compounded in every subsequent encounter with eating disorder treatment (and psychiatric care) I experience. Likewise, the opportunity to heal from these wounds also exists as potential in every interaction with services.
Because I fit the harmful stereotype of an eating disorder by the time I received help, what was provided (and to some degree needed) was intensive, restrictive, highly controlled, and invasive. It saved my life in an immediate sense, but there are longer term costs to these kinds of intensive early (and ongoing) experiences with treatment settings. To speak to and offer the space to explore that, is not to discount that these settings also save lives. It is a nuanced discussion.
A big part of the pre-adolescent and adolescent stage of our life, is related to building identity and forming relationships outside of our family networks (with peers.) That is disrupted when you are ill, unable to participate in normal growth and development, as well as life events (e.g. school, etc.) Hospitalization/treatment and time away from "normal" life interrupt these developmental stages.
In my own experience, I struggled to learn much independence and interdependence in my youth (in part) because I spent some of my formative early experiences in rigid settings, where it was constantly reinforced that authority knew best and any thought or expression I had, was a result of my illness (the eating disorder). At that age, much of it might have been, and it is certainly complicated to disentangle the person from the illness at times. Still, there can be a great deal of potential damage that occurs when we reduce people to simply their illness as a cause for their every thought and motivation (even in youth who may not have the same level of insight as an adult.)
For example, the phrase "that's just the eating disorder talking" is intended to encourage separation of eating disorder motivations from personal attitudes. It can be a useful approach, especially for younger individuals. However, (at least for myself) that messaging - delivered over and over again - has carried through into my adult life and I consistently see the same message reflected in treatment settings for adults, where it can be more harmful than helpful. Again, the intention may be to help distinguish a separate identity from the eating disorder, but the impact at a certain point, can be one of reducing every thought (especially those of concern, self-advocacy, boundary setting, healthy disagreement, advocacy, etc.) to a pathology over the person.
If separating oneself from the disorder and imagining it as a separate entity is a helpful approach, that is valid. At a certain point in my own experience, I personally found it helpful to begin navigating where and when to re-integrate the voice of the disorder. At the heart of it, my eating disorder is a protective mechanism and to re-identify with it as a childlike and dissociated aspect of myself, allows me to explore the underlying need that the eating disorder is seeking to meet.
My family's experience of my early encounters with eating disorder treatment, was one of my life being saved and for that we are grateful, but beyond physical restoration, there was very little understanding or support in navigating the majority of healing work (which occurs in non-acute settings.) There was also very little that went in to exploring underlying factors in the development of my eating disorder when I was younger.
My parents were pretty much on their own to support me once I left a higher level of care. They learned what they could and began to implement Family Based Therapy (FBT), though they could not access professional support in doing this, partly based on where we lived and the limited understanding and number of professionals capable of treating eating disorders in our community. This (FBT) approach did work well for me when I was quite young, but unlike treatment settings, it was infused with my family being one of support and safety (not everyone has this). I lived in the context of a family with a mother who had nursing experience, a family of deep love and support, parents who had relative financial stability, a healthy marriage, and their familiarity with me as a whole person. I was not reduced to a diagnosis in their care, I was supported while I was still too young to navigate healing on my own. I nearly fully recovered when regular patterns of nourishment were sustained. However, without appropriate therapeutic approaches from professionals, few of the underlying issues were ever addressed (although certain individual professionals did their best, and for them I am grateful.)
In those early days, I would ask my parents over and over again (a ritualistic and highly repetitive pattern) if they were angry with me or if I was in a body that society would consider too much (though not in those words). At the heart of what I was trying to communicate was a sense of not feeling safe - of being disconnected from my own internal cues or an ability to sort through which of my perceptions could be trusted or not: I didn't know how to do so myself. Anxiety created a constant sense that the world was unsafe; I was unsafe. Depression created a constant sense of hopelessness. Treatment had reinforced that I could not perceive the world accurately and had to look to authority to understand reality. Thankfully, my parents realized that I was often not asking about their emotions or my body, I was communicating my own distress and lack of trust in my ability to sense the world, in the only way I knew how - by seeking their guidance to sort through what could be trusted when I couldn't trust myself. I went from looking to my eating disorder as a safe authority, to external sources of authority to guide my sense of the world and how to navigate it.
As I grew older, my family remained protective, but also took their cues from me as a critical part of the picture of healing. Still, I was behind my peers in many ways. I had always been intellectually mature, but other dimensions of my personhood had been left neglected due to illness, hospitalization, and spending time away from normal activities for my age group. Socially and emotionally I was stunted. These aspects of my personhood are still playing catch up.
Because very little had been done to address underlying depression and anxiety in my early treatment experiences (in part because it is difficult when someone has limited insight), as those challenges came to the surface again, so did the early pattern of coping that my eating disorder had established. It did not happen quite as dramatically in my later adolescence/early adulthood - and my insight by that point had somewhat expanded - but an undercurrent of disordered thoughts and behaviours did begin to re-emerge, exacerbated by the usual stresses of adolescence/young adulthood, as well as peer and cultural pressures.
In that period of my life and into early independence in University, I clung to the disorder and my role of being a "good student" as the shaky foundation of my sense of identity and self-worth. Both of these forms of identity depended largely on approval from others (particularly authority), conformation to expectations that I felt from the world around me - to be small and stand out at the same time, and were indirect means of seeking validation or reassurance that I was "okay," "good enough," and "safe."
My experiences with treatment settings as an adult were both different and similar to my earlier encounters with support. In some ways, especially (and naturally) in an outpatient setting, my independence was encouraged even if it sometimes left me feeling alone and to blame for my struggles. At other times, particular therapeutic dynamics were paternalistic in nature (which was well-intentioned) and the familiar comfort of this was something I clung t, though it did impact me in challenging ways.
While there was no intention to further unhealthy attachment styles, I clung to any authority figure that felt like a parent (parental transference). At the same time, my eating disorder railed against this tendency I was falling into because logically I knew it was unhealthy and highly vulnerable. The shame that I felt around logically knowing what was happening, whilst being unable to stop this unhealthy attachment style from forming, felt like a loss of control. The eating disorder feared reliance on an authority figure beyond itself because the potential risk of being hurt was more frightening than the known risks of my eating disorder.
Parental transference does not necessarily arise because a person may have neglectful parents or harmful parenting experiences, sometimes it can be quite the opposite given the right mix of circumstances (e.g. early illness that initiated a sense that I couldn't trust myself, protective parents who had their own life experiences, and an inborn temperament prone to anxiety.) At the time, to admit what was happening and give myself the opportunity to explore why these transference patterns were arising felt as though I was betraying my parents.
At that time, unfortunate circumstances left me vulnerable - I was isolated and my primary connections were both male-identifying authority figures - one a clinician whom I looked to as a parent, one in my personal life that was also a fair bit older than I. In that period, my eating disorder symptoms worsened despite the work I had done on my own. At a certain point, more intensive support was unavoidable and a series of admissions to a psychiatric unit followed. Once more I had to pause my life, leave my schooling, and my connection to anything or anyone outside my struggles, dwindled. Some of these admissions were involuntary and while I know the intention was not to cause harm (I was not always in a stable frame of mind), there were several traumatic experiences that occurred in hospital that still impact me (even when I am working on the other side of things, as a nurse, and encounter reminders in acute care settings.) Again, these experiences went along with my life being saved.
Sometimes causing some degree of harm is unavoidable when trying to prevent far greater harm and I have encountered this uncomfortable situation in my own work as a nurse. Navigating the moral duties of supporting a person's autonomy, reducing harm, and aiming to do good is a careful balance and we don't always get that right in healthcare (especially if we are not trauma-informed or culturally competent), because there is no clear "right" - it is a moving target. These challenging situations are not easy for anyone, the patient or the provider, but it is important that we understand the harm that can be caused by the very spaces meant to heal us, in order to inform any future encounters a person may have with the system.
One thing I have observed in my own experiences with adult eating disorder treatment is seemingly simultaneous, diametrically opposed views - namely, far more responsibility is put back on the person to change, at the same time that often paternalistic approaches to treatment (more appropriate for youth) are prescribed. For individuals who have experienced treatment at a younger age, where the consistent reinforcement of needing to look to external sources of authority for any and everything, adult eating disorder treatment is both a continuation of this dynamic (in certain settings at least) while also receiving the message that to struggle when one is outside of these highly rigid settings that reinforce being incapable, means a person is just not motivated enough, a hopeless case, or not "recovery-oriented."
It makes sense that many intensive eating disorder treatment settings are highly structured - in many ways, this can be very helpful in breaking disordered routines and re-establishing a mechanical approach to healing. Sometimes individuals also crave control being taken away whilst desperately holding onto the false sense of control their eating disorder may offer them. The other side of a highly rigid structure can be rules that reinforce harmful messaging (if unintentionally). Often intensive eating disorder settings have rigid rules around meals (which makes sense), using the washroom (such as when this can be done), how a patient self-regulates (e.g. taking space from programming to self-regulate can be seen as avoiding), what can feel like punitive consequences for stepping outside of the structure of a program, how patients might sit or move their bodies, communicate, rest, etc. Again, there is logical reasoning behind many of these expectations and they can be helpful, but they can also be incredibly paternalistic and exclude multi-marginalized individuals (such as those with disabilities, significant trauma, those on the autism spectrum, or with ADHD, etc.)
Because of the way in which B.C.'s healthcare system and mental health services are set up, there is a great deal of silo-ing of care that occurs - this is particularly apparent in eating disorder treatment, which is treated separately from other mental health conditions. In South Vancouver Island, adults with eating disorder are also treated under an entirely different ministry (the Ministry of Child and Family Development) than other mental illnesses in adults (which are under the jurisdiction of the Ministry of Health, through local health authorities.)
In order to be deemed suitable for more intensive treatment settings, patients are required to have other co-morbid mental illnesses under "enough control" to pursue eating disorder treatment. Likewise, to pursue treatment for other conditions, patients are often required to have their eating disorder under "enough control," or may be excluded from other forms of treatment because of their eating disorder diagnosis. Again, there is a logical reasoning behind this, but one potential impact is that persons with persistent co-morbid mental illnesses are often left playing a game of whack-a-mole with different mental health struggles, and experience an even harder time accessing already limited supports (e.g. folks with schizophrenia, PTSD, c-PTSD, BPD, substance use, depression/suicidality.)
This of course can be challenging because human beings cannot be dissected into discrete parts, treated separately, and then stitched back together with the hope that enough communication has occurred between each specialist or service area, that this has been an effective approach. An individual's struggles are entangled and situated in the context of their unique circumstances. The question of how we can provide more holistic approaches to supporting people with co-morbid mental illnesses is a tough one, and through pointing out this issue I do not mean to imply that I have somehow figured this out, just that this an important impact of silo-ed care to keep in mind.
Due to limited funding and resources as well the silo-ing of care, there is no system of stepped-levels of care for people with eating disorders in B.C in actual practice. The consequence of which can be, individuals leave highly structured settings with intensive, 24/7 support available, to return to communities with little to no support or structure. Going from an environment where everything is out of your hands, into settings where there is sudden independence, it is a shock to the system. Leaving higher levels of care is one of the most vulnerable periods for folks struggling with eating disorders. This is something professionals are very acutely aware of and do what they can to provide support to help with these transitions; however, they are required to do that with incredibly limited resources.
For myself, the lesson I learned as a young person engaging with eating disorder treatment was that I could not be trusted to look after myself: in many ways because I couldn't. As an adult, the expectation is that I do look after myself and if I cannot do so, there can be a great deal of blame (again not from individual professionals necessarily, but the system as a whole.) The experience becomes one of not trusting the system as you continue to age through services and become more and more of a "chronic" case, where it is suggested that treatment has not worked for you, perhaps you should take a break.
At the same time, one can also experience a sense of flailing without the structure and support of treatment because one has learned that they cannot trust themselves - they can't know their own hunger cues, an accurate sense of reality because everything is their "eating disorder talking," or might be some other form of pathology, and may have every aspect of body distress being related to the eating disorder (which can be very damaging for gender diverse folks who might be navigating how to be a body that they don't identify with).
There are so many conflicting messages that occur in treatment settings that can feel akin to gaslighting (despite the best intentions - again, intention is not the same as impact), especially if a person has ever experienced that in their personal life. These messages can of course, also contribute to people seeking out authority and trusting others over themselves which can lead to instances of further trauma.
Accessing supports to help one heal can become a-rock-and-a-hard-place experience - this sense of being incapable of healing without more intensive supports, whilst feeling too complex or broken to be suited to these spaces. Extremes are borne from these circumstances - dependency and adamant independence, struggling to trust and feeling too trusting, using one's voice and feeling like one can't risk being dismissed one more time for speaking their truth, and so on. It is beyond confusing to try and navigate (likely as much for professionals as it is for patients.)
This can lead to frustration for individuals who are struggling and unfortunately, it can also lead to being viewed as a difficult patient by the system. If individuals are repeatedly reduced, dismissed, or harmed through speaking to these issues as they experience them, it becomes difficult to feel safe ever offering oneself authentically to these encounters with treatment.
All I can say is that it is beyond painful to feel one has to silence themselves and the values they hold dear, in order to pursue care. To enter into healthcare engagements and treatment environments that are still evolving, but at too slow a pace (despite even professional's best efforts), puts individuals in a situation where they are faced with deciding which pieces of themselves, and their values, they can let go of in order to access support.
Which pieces are possible to lose without losing all of oneself? Which pieces can be re-built with time (and largely outside of Western medicine and psychiatry)? Which pieces are too essential and to separate them from the whole would cost a person more than they have to sacrifice? Sorting through the ever unfolding cost-benefit analysis of how our eating disorders might serve us alongside how they are harming us becomes even more complicated when we have to factor how treatment might help us and harm us.
These are not questions those seeking mental healthcare (or any healthcare for that matter), should have to sort through in each engagement with a system that is supposed to help them. Western medicine and psychiatry are traditionally focused on fixing (and for many marginalized folks, a history of actively eliminating) and sometimes they do this, but so often they cannot truly offer healing. It is hard to come to terms with the reality that formal supports are tools that can be helpful in regaining footing on our journeys; however, the real work of recovery and the majority of healing will occur outside of these spaces.
For any marginalized group (I speak from my experience as someone with mental illness and diverse gender identity, but these intersections of disadvantage are a mere shadow of my privilege as someone who is Caucasian with these identities), the constant cost-benefit analysis of whether or not to engage with services, is draining. My experiences of Western medicine, particularly psychiatry, are both life-saving and damaging. As such, I am both grateful and concerned, particularly for those far more vulnerable than myself whose experiences of marginalization are ones I cannot imagine, but must make the active effort to listen to and learn from.
No human being is piecemeal - made to be separated into distinct categories. No specific issue can be entirely removed from the whole context of a person: they exist in entanglement. Sometimes it makes sense to narrow in and prioritize a specific struggle, but not without appreciating the complexity of the whole.
My experience of mental healthcare is one of being dissected - different parts of myself, pulled apart into separate categories, limb by limb, piece by piece. With assumed surgical precision. Each specialist is supposed to take the part that belongs to them, dig their hands into it, and finally, stitch it back into place all the while hoping that others working in their own silos, will do so as well. The reality is that effective communication and collaboration between these silos of professional expertise and the person's own lived/living experience, is so often lacking.
My role as the patient in this dynamic is traditionally assumed to be one of simply acquiescing - allowing each part of myself to be defined in the ways that the system has decided are "correct" or most "true." The underlying assumption is that these ways of viewing illness are somehow outside of subjective reality and thus, without bias. However, anywhere that human beings are involved, we will see the world as we see it, not as it necessarily is. To some degree, even the most rigorous science is still subject to these same biases; though there are measures of reducing bias, we are always somewhat fumbling around in the dark and cannot step outside our humanness altogether.
Traditionally, my own wisdom of myself and how I conceptualize my struggles in the context of my whole personhood, come second. As we have progressed as a society, continuing to learn and unlearn (because we have), my own lived and living experience is recognized more nowadays than others would have faced in the past. But all too often it is still seen as a "nice to have" not a "need to have..." As a checkbox on a long list of duties to perform, not practices to embody and reflect deeply upon every day.
I have more privilege, particularly as a middle-class, Caucasian, and "educated" person (as defined by Western society), who works as a healthcare professional within this system, to subject myself to the sometimes damaging process of pursuing support. Many others do not (particularly those who are Indigenous, other persons of colour, those who struggle with addiction, psychotic disorders, certain "personality disorders", are homeless, in poverty, or disabled.) That is beyond concerning... I know that in writing this, my voice will be taken more seriously and that is an ongoing injustice that we must correct as quickly as possible. These changes take time, but time is also a privilege and it costs the lives and quality of life of those who do not possess the same degree of privilege.
As I see it (which is of course only one perspective), a great deal of change will occur through truly listening to lived/living experience, in appreciating the complexity of entangled struggles in the complicated context of each person, through better supporting individuals to trust themselves, as well as enhancing a sense of self-capacity that they already possess.
Of course, individual professionals often try to do this and it is the system of care and the ways we think of treatment environments that need to shift. It is certainly much harder to re-shape the system than to shove square pegs into round holes.
This is a complicated discussion and by no means is it one-sided (just as people are not) - it is a multi-dimensional and requires collaboration on all sides to work through. What is important to keep in mind is the aim, to support people and improve their lives (as they see it.) This piece of writing is not by any means a conclusion, it is one small piece of a continued conversation that we need to keep having.
Thank you for reading.
-S.
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