I receive questions from all ages asking me what constitutes a full recovery and whether it might be a state that they could pursue for themselves. Specifically, those in their 30s, 40s and beyond find they develop a renewed interest in pursuing recovery as the health issues mount up.
Rather along a parallel line I too have been contemplating the facets of human resilience and the dishonesty that might be inherent in stating that “everyone can recover” when it comes to restrictive eating disorders.
I use the term “in active recovery” across the site, but what you achieve at the end of a successful recovery process is, hopefully, a full remission. The end state is not a full recovery. No one ever recovers from a restrictive eating disorder. The nature of chronic neurobiological conditions is that they cannot be cured.
I have often reiterated the following as well: restrictive eating disorders are either active or in remission. Remission can be permanent, or there can be flares of the condition in times of stress (a relapse).
That still leaves us with the question: what does remission look like? This post is going to attempt to delve into this question in the context of my site being dedicated to those seeking information for achieving a full remission from a restrictive eating disorder.
The Medical Definition of Remission
In my blog post Bulimia? Yes, You Too. I spoke a bit about remission and used a member post in Remission Accomplished to create a first-person explanation of remission from a restrictive eating disorder.
Many experts in the field of treating and researching restrictive eating disorders are currently dog piled on the topic of what constitutes recovery from a restrictive eating disorder. It’s important because clinical data that suggest one treatment modality is superior to another will be meaningless if the classification of full recovery is not standard.
As you know, I tend to frame restrictive eating disorders as more akin to other biological chronic conditions such as asthma or rheumatoid arthritis (RA). I find this comparison both useful and inherently accurate.
The ideal state for any chronic condition is full remission. However, many individuals are not going to attain that state. Active chronic conditions greatly impact both quality of life and length of life. At no point should an active state of any chronic condition remain untreated, should the patient want to remediate both quality and length of life outcomes.
Medicine identifies two forms of remission: partial and complete. The definition of remission is therefore: the partial or complete disappearance of the clinical and subjective characteristics of a chronic or malignant disease. [medical dictionary]
When it comes to the neurobiological chronic condition that is a restrictive eating disorder I have, up to this point, stated that the condition has two states: active and remission. However, I am willing to concede that within the active state there are examples of treated patients for whom a partial disappearance, or lessening, of the clinical and subjective characteristics of the condition is reached.
And just as with partial remission of other chronic conditions, the quality and length of life outcomes for those with partial remission of a restrictive eating disorder lie between those who have an active condition and those who are in full remission.
Therein lies the essence of the dilemma facing those of us who speak of “recovery for all”: Should partial remission suffice? And if so, for whom and under what circumstances should it be considered an end state, where full remission is never going to be a viable option?
But first let’s delve into those subjective and clinical characteristics of a restrictive eating disorder…
The Active State
First of all, I won’t be using the DSM checklists to identify the active state of a restrictive eating disorder because these checklists are skewed towards WEIRD (White Educated Industrialized Rich Democratic) [R Striegel-Moore et al., 2000; S Lee et al., 1993; GM Soomro et al., 1995; AE Becker et al., 2009].
WEIRD is a term coined by Joseph Henrich, Steven Heine and Ara Norenzayan (all University of British Columbia scholars). The term is a brilliant recognition of the rather obvious fact that much of our understanding of the human mind is predicated on the study of predominantly white and educated subjects from industrialized, rich and democratic countries— basically university students in the West. [The Weirdest People in the World: How representative are experimental findings from American university students? What do we really know about human psychology?]
What I mean when I say the DSM checklists for eating disorders are WEIRD is many of the subjective symptoms, in particular focus on body weight and shape, have turned out to be culturally specific. While most certainly these facets are expanding in impact along with the ‘westernization’ of the world, they are not inherent facets of the condition.
That means that the active state of an eating disorder may, or may not, involve a preoccupation with body weight, or an intense fear of gaining weight, or even an intense fear of losing control (rather foundational items on the DSM checklists).
What is an inherent facet of an eating disorder then?
It appears, from the available data at present, that an eating disorder is both the expression and repetition of maladaptive behaviors in response to fear of eating that impact both quality of life and physical health.
If that sounds vague, it is. It must be vague in the absence of sufficient markers. Let me explain…
The Inactive State
If you sometimes wonder why researchers like Walter Kaye spend a lifetime studying the neuropeptide anomalies associated with restrictive eating disorders, they do so because we don’t yet have ways to screen for the presence of an eating disorder in the ways we might screen for the presence of asthma or RA.
At present, we must rely far more heavily on the subjective characteristics for defining the active state of an eating disorder. Interestingly, even other ostensibly physical chronic conditions rely on subjective characteristics even though some screening tests can also identify clinical characteristics.
“The Vectra-DA test that measures several biologic markers of rheumatoid arthritis (RA) activity—may help to identify remission in people with RA… Among other things, [the test] may help to identify patients who are at high risk of ongoing joint damage in spite of meeting the criteria for clinical remission (emphasis mine).”[AHM van der Helm-van et al., 2012]
As you can see, even meeting the criteria for clinical remission when laboratory tests confirm its presence may not reflect actual remission. If joint damage is still ongoing for someone in remission from RA, then clearly they are not in remission. For restrictive eating disorders, where laboratory tests do not identify the presence or absence of the condition itself, identification is more subjective.
We currently rely heavily on various psychometric tests that have been developed to identify both the presence and absence of eating disorders. The Eating Attitudes Test (EAT) is known to be able to identify remission. Those who have been identified as having recovered via medical assessment will also score within the normal range on this psychometric test [DM Garner, PE Garfinkel, 1979; J Castro et al., 1991].
Most practitioners use a combination of weight restoration, resolution of any medical complications associated with restricting energy intake (measurable by laboratory tests), and scores on the Eating Disorder Examination-Questionnaire (EDE-Q) and EAT, as a way to identify whether a patient has achieved full remission from an eating disorder.
As a reminder, when I use the term “restricting energy intake” it is a foundational facet of the expression of anorexia nervosa, cycles of restriction/reactive eating, bulimia nervosa, anorexia athletica and orthorexia nervosa.
Usually a patient has undertaken an EDE-Q and EAT prior to treatment and that will enable the patient and practitioner to monitor whether the patient has achieved a partial of full remission by comparing scores from before and after treatment interventions.
Just as with RA, what constitutes full remission is unlikely captured with these tests and assessments alone. Subjective assessment by the patient is also an important refinement on identifying the presence or absence of remission.
But to get an opportunity to experience remission, however it might be defined, the patient must first embark on trying to recover.
Let the Patient Decide
When a patient with rheumatoid arthritis has decided she does not wish to dwell on her condition, and that she prefers to address it only when and if her life circumstances have generated a flare that demands her attention, is she proactively managing her condition?
Or is she rather denying the necessity of increased management and treatment to achieve a higher level of remission that would prohibit the number of flares and subsequent progressive joint damage?
Or is she accepting of the fact that her condition is resistant to reaching a full remission and she would rather enjoy her relative mobility and independence now without interference, knowing that it might lead to a subsequent drop in quality of life in the nearer future?
Unlike patients with RA or asthma, those with neurobiological conditions also have the added conundrum, or rather those who are attempting to help them have the added conundrum, of trying to identify whether the patient’s brain is sufficiently functional that she can make the determination of what might be the most suitable path of treatment, or non-intervention, for her.
Restricting intake impacts brain function. Interestingly, when a patient with asthma has a serious enough attack that he develops mild hypoxia (low blood oxygen levels), he will become extremely anxious and insists that he does not require treatment. That response is directly attributable to lack of oxygen to the brain, and those who treat the patient have to override his insistence at not wanting to be treated. A similar situation often occurs for diabetic patients in need of insulin.
As you all know, likely too well, anxiety of an identified threat drives avoidance.
When the identified threat is food, and it is rarely consciously attributed in that way, then avoidance of treatment for the condition becomes quickly intertwined with the need to avoid having to face food on a more consistent and constant basis.
When a patient with a social phobia is unable to make the appointment to see a therapist to help overcome social phobia, because she is too anxious to make the call, then she is doubly impacted by her chronic condition in a way that someone with RA or asthma is unlikely to be.
The same is true for those with restrictive eating disorders: as an anxiety disorder, eating disorders reinforce avoidant behaviors that can spread into any area of life that might involve heightened exposure to the essential threat (i.e. food).
If a patient is unable to fathom or process that she would benefit from treatment and would likely achieve a full remission with the right inputs at the right time, then she will be unable to choose treatment when she cannot even see it as an option.
Letting a patient decide is ideal but not always feasible. Furthermore not getting treatment is likely not what the patient actually wants, once the brain has sufficient oxygen, glycogen and energy to function again.
The Treatment Resistant Patient
There are likely four distinct categories of treatment resistance in patients with restrictive eating disorders:
1) Patients who are too cognitively impaired to make an informed decision for treatment.
2) Patients who are ambivalent.
3) Patients who have been traumatized or repelled thanks to prior disastrous treatment exposures.
4) Patients who are unaware they are resistant to treatment.
Problematically, many patients (yes, even those at average or above-average weights) might fall into the first category. We know of course energy depletion causes the brain to malfunction. But we also know that anxiety states can be defined as cognitive impairment.
If you have ever been in the presence of anyone in a full blown panic attack, then you know that extreme anxiety hijacks cognitive function.
Patients in the second category are often becoming aware of, and increasingly anxious about, the cumulative physical impacts of their eating disorder, but there are many psychological and emotional barriers that remain for the patient before she takes the leap to enter treatment.
Sadly, there are far too many patients in the third category: the cynical and scared. I have heard so many shocking levels of abuse from patients who have been in inpatient settings. The worst part has been that these incidents do not date back to the 1970s, where we might possibly brush them off as part of a prior unenlightened time where the barbaric treatment of psychiatric patients was a matter of course. Instead, the cases are recent and all too common. As medical systems around the world are pushed to cut costs, it is likely these abuses will increase, not decrease.
Patients who are unaware they are resistant to treatment are quite rare. Their plight is heartbreaking. They believe they are wholly committed to a recovery effort but they erect constant barriers to treatment that immobilize them, and anyone attempting to treat them as well. They are completely unaware that these barriers are self-generated. They see the barriers as situational and external in nature.
At present assigning the “treatment resistant” label is exclusively managed by practitioners. Once it goes in the file, the patient will often feel alienated, deflated and defeatist. I see a great necessity in having mandatory patient response in the file when a health care provider intends to identify that patient as “treatment resistant”.
I know of one case where a patient’s primary physician refused to provide a necessary referral to a treatment program because the physician believed it was unethical to give the patient hope for recovery. That physician deemed her untreatable and incapable of attaining any remission.
In fact, the use of “treatment resistant” labeling is unethical and its application becomes self-fulfilling prophecy for many patients.
No one can predict who will reach remission, who will die within the decade from the condition, or who will endure the slower decline of a partial remission. No one should ever suggest that those three options are mutually exclusive either.
Whenever any chronic condition is activated in any human being, it is not some awful destiny with an inexorable path.
A chronic condition is not very responsive to an approach of battles or management, or worse acquiescence. It is most responsive to adjustment.
Treatment resistance in all its forms is not a static state for any patient. No state of an eating disorder is a foregone conclusion.
Everyone can attain a full remission from an eating disorder, yet not everyone will do so. But don’t be so sure that you can call whether you are destined for no remission, partial remission or full remission.
The one sure thing about an eating disorder is that it is out to destroy both your quality of life and your length of life. What you do about that is, thankfully, very much in your locus of control.
Determining Your Path
Do not rely on a single source as a way of assessing your own readiness and willingness for pursuing full remission from an eating disorder.
Make sure you get input both from those who have eating disorders and those who do not. Ideally, speak with those who have unrelated chronic conditions: those with insulin-dependent diabetes, asthmatics, those with rheumatoid arthritis, eczema, etc. etc. Speak to family, friends and health care providers.
Be brutally honest with yourself. Are you adjusting or avoiding?
Ask people close to you, point blank, if they think you are capable of making the best decision for yourself right now. Our brains don’t have warning systems to tell us when our cognition is failing due to energy depletion, and we remain blissfully unaware of how impaired we have become.
Never stop re-assessing your current path unless and until you are in full remission. At that point, you shift to ensuring that you know what to do if it flares and otherwise you live your life.
Consider the Risks of Delay
Beyond the obvious risk of untimely death (restrictive eating disorders are indeed deadly), the time spent practicing restrictive behaviors becomes more ingrained the longer the condition remains active. Retraining the brain to learn and then dependably apply non-restrictive behaviors in response to the usual threats, gets harder the longer your brain has spent mastering restriction.
As teens, patients with eating disorders tend to believe that they can “beat” an eating disorder and that it will be “back to normal” for them in a matter of months. And although it takes far longer than a few months, three quarters of that group will have worked successfully to achieve a full remission.
Those in their twenties with active eating disorders include those who have not experienced a full remission and those for whom there has been a flare from the remission they reached in their teens.
Many in this group will juggle the average challenges of all young people setting themselves up in the world with persistent and lower-grade symptoms of an active eating disorder. When patients in this age group do attend to getting the condition into a full remission, they are about as successful as those in their teens. However, the number of those who sustain the effort to reach full remission in this age group is lower than those in their teens and those in their thirties.
Those in their thirties are now facing pair bonding commitments, starting a family, increasing responsibilities at work, increasing financial pressures and/or raising a family. Some within this age group have been unable to shift from scholastic endeavors to pair bonding and/or career endeavors because the eating disorder has been progressively active throughout the teens and twenties.
For both groups the damage done from the condition being active through their teens and twenties (with varying severity) starts to really take a toll and pursuing remission therefore takes on a greater level of urgency.
Many pursue remission at this point because they are struggling with infertility thanks to the eating disorder. Others pursue it because they find their symptoms are worsening due to the additional stresses of raising children and they worry about “passing the eating disorder behaviors” onto their children. Still others find their symptoms are worsening because the severity of the eating disorder has increased in response to heightened stressors faced in life.
Of those who have had their eating disorder actively either with or without reduced symptoms up to this age, the success rate of reaching full remission has dropped somewhat. Rather than three quarters reaching full remission, it is about half.
By the time a patient is considering full remission in her forties, it is usually the mounting physical ailments that force the reckoning.
The most common advice this group of eating disordered patients desperately wants to share with those in their teens and twenties is: “Do not wait until you are my age to get serious about recovery.” The success rates remain flat at about 50% for this age group.
There are not enough data points for me to provide success rates for those in their fifties and sixties who pursue a full remission after decades of an active or partially remittent eating disorder, but I would guess that it will either be at 50% or even slightly higher. I suspect it is higher because few attempt a recovery effort to remission at this age and therefore there is a self-selective aspect whereby those who do attempt it are more likely to succeed just because they were prepared to attempt the process in the first place.
All of the above data regarding age groups and remission rates have been extracted from the raw data of the survey of patients visiting Your Eatopia (N=196) and it reflects closely what other published data would suggest for these groups as well when it comes to remission rates. Yes, I intend to publish a synthesized complete version of the survey, but it’s on a rather large pile of to-do’s right now.
Never Letting It Lie Is Not False Hope
You likely know if you have ever attended a yoga class, that one of the tenets of stretching is to go slowly and wait for the body to shift such that you can gently deepen the stretch further. If we use a sailing analogy, given the image for this section, then we know that changing tack based on prevailing winds and conditions does not mean we do not still have the same ultimate destination in mind.
It doesn’t matter if you have “treatment resistant” stamped in bold letters on your file. It doesn’t matter if your maturation or stage of life means that you have your focus elsewhere and your body is meant to keep up. It doesn’t matter if you have tried to recover in the past and failed so many times that you have lost count.
Keep paying attention and wait for the moment for the mind to let you in. The body, in the case of an eating disorder, is already on your side. So unlike stretching, you are not waiting for the body to let you in, you are waiting for the mind to let you in. But if you are not paying attention, you might miss the opportunity that presents itself for a recovery effort that will ultimately be completed with a full remission.
Remission is a practice of the mind. And as a practice, you are always paying attention, re-evaluating and adjusting.
An active recovery effort is an initiation into the practice. You have to learn all the basics of how you will live your life in remission: eating real amounts of food that support your energy needs; resting to repair damage; and applying responses to anxiety that don’t fall back on restriction as the go-to modulator.
Try not to have so many distractions in your life that you all but ensure you will never notice when your mind might shift and you are ready for a recovery effort (be it your first or your thirty-first attempt).
Currently dealing with an active or partially remittent eating disorder does not require of you that you accept its permanence.
It is always possible to show yourself self-compassion and appreciation for what life brings in the now, while also holding yourself accountable to the possibility that it could all change.
This both/and approach is necessary when you live with most chronic conditions. In fact, in my own experience, I believe that it is the only way that remission can be made reality.
With chronic conditions patients can often go through periods of outright denying their condition because they just want the old normal. They want what they see everyone else around them has that has been taken from them, thanks to the condition.
There are periods of flooding—where the overwhelming realities of the condition reduce the patient to only identifying herself within the confines of the condition.
Then there can be a phase of acceptance that slides into apathy. From there, there can be a phase of anger and disgust and a renewed effort to find cures and be rid of the condition.
Eventually the patient doesn’t accept the condition but rather she accepts her responsibility to make adjustments on a continuous basis as a way to interface with the condition (be it active, partially or fully remittent). These adjustments are not onerous or time consuming but they serve to maximize quality and length of life while minimizing subjective and clinical symptoms.
The possibility of remission or flare must never be written out of your story. And your story does not end until you are done on this earth.
I do not believe this approach generates false hope or a summary dismissal of those with active eating disorders. It ensures that patients do not get complacent in assuming the label affixed to their foreheads, identifying the presence of absence of their chronic condition, is somehow permanently stuck on there. It’s not.
Answer the Question!
My husband refers to my style of writing, and presenting too, as leading folks, in an albeit persuasive and animated fashion, around the back of the barn and then ultimately failing to show them the amazing thing that was supposedly stationed there.
In a conscientious effort to overcome this build-up-to-nothing style, I will actually override my desire to have the audience come to its own conclusions and spell things out.
If I succeed, I might even attempt to put conclusions up front in subsequent blog posts, as most accomplished writers naturally do…we’ll see how this goes.
Full remission from a restrictive eating disorder is living your life with food as I do every day with the occasional tweak and adjustment that I don’t have to do because I am not on that spectrum.
Here Are Remittent Seven as I see them:
1) You look forward to gatherings and celebrations that center on food. Like all those without an eating disorder, you indulge happily and do not compensate either before or after the event.
2) You have no forbidden foods, unless of course they could actually kill you (think peanut allergy).
3) You are a force for moral absolution. Your relationship with food is a morality-free zone and it has far reaching influence on those around you, not to mention yourself.
4) You experience your body, and every body, as a miracle every day. You marvel at the healing of a bruise. You stop to watch your fingers flying over a keyboard and are amazed. You see form and function and the innate power of the body.
5) You understand on a cellular level that “savoring” is a state of transcendence and transubstantiation. Transforming food into life-giving energy is freaking phenomenal!
6) You feel connected.
While many with eating disorders can feel strangely energized and alive in a state of extreme energy depletion, they rarely feel connected in that state. In fact, they feel a high in the disconnection. Connection is actually an ambivalent state and you are able to hold the ambivalence with appreciation. It is not always joyous, supportive or healing to be connected to others. But you are ok with that.
7) You are fluid.
I’ll quote Bruce Lee yet again (as I have in Time And Scope: Recovery Is Tough)
"Don't get set into one form, adapt it and build your own, and let it grow, be like water. Empty your mind, be formless, shapeless — like water. Now you put water in a cup, it becomes the cup; You put water into a bottle it becomes the bottle; You put it in a teapot it becomes the teapot. Now water can flow or it can crash. Be water, my friend." Bruce Lee (believe it or not).
We have all heard that we are 75-80% water, but I want to share with you something I am reading at the moment on the recommendation of @medskep (Twitter), aka Duncan Echelson: The wisdom of the body: how the human body reacts to disturbance and danger and maintains the stability essential to life. [Walter B. Cannon, W.W. Norton & Co., 1963, New York]
“We ordinarily speak of ourselves as air-inhabiting animals. A little reflection will disclose, however, the interesting fact that we are separated from the air which surrounds us by a layer of dead or inert material. The skin has an outer covering of dry and horny scales…and the surfaces of the eyes and the inner parts of the nose and the mouth are bathed in salty water. All of us that is alive, the vast multitudes of minute living elements of cells which compose our muscles, glands, brain, nerves and other parts, reside within this surface coat of non-living stuff. And, except their sides where they are contiguous one with another, the cells are in contact with fluid. The living elements of the body, therefore, are water inhabitants, or inhabitants of water which has been modified by the addition of salt and thickened by an albuminous or colloid material.
To the simple organisms which may be found attached to the rocks of the bed of a stream the flowing water brings the food and oxygen needed for existence and carries away the waste…Similar conditions prevail for the incalculable myriads of cells which constitute our bodies.”
We are beings of water. Fluid. We flow. That means nothing is static and everything can change.