Phases of Recovery from an Eating Disorder: Part One
Once a single blog post, this is now a multi-part series on what to expect as you wend your way towards remission from an eating disorder. The series includes the following:
Part 1: Understanding an eating disorder
Part 2: Telltale dozen to uncover an eating disorder
Part 3: Some risks, complications and misdiagnoses
Part 4: Applying the Homeodynamic Recovery Method (HDRM) to get to remission
Part 5: Phases of recovery
The Homeodynamic Recovery Method (HDRM) comprises four phases toward remission of an eating disorder: initial re-feeding, the neither/nor phase, the must-be-done-by-now phase, and the high-risk final phase.
Initial re-feeding
The “weight” gain in the first few days, once you are at minimum intake guidelines for your age, sex and height, is drastic. It can range from 7–16 lbs. (3.1–7.5 kg) in a matter of days. For those observed within hospital settings, the “weight” increase can be upward of 30 lbs. (13.6 kg) within the first two weeks (at full re-feeding intake amounts). The reason that “weight” appears in quotation marks is that the initial drastic increase is primarily due to both extracellular and intracellular water gain. [1], [2] Both extracellular and intracellular edema (water retention) occur for two distinct reasons at once in the early phase of recovery: reversible damage to kidney function and macrophage functions for cellular repair throughout the body.
There is diminished creatinine clearance and impaired osmorelgulation present for most patients with a history of eating disorders—the kidneys are basically not quite up for the job of healthy water regulation within the body. [3], [4] The kidneys recover with continued re-feeding for the vast majority of patients.
Swelling (edema) is also a fundamental body defense to protect the body from further damage or infection and to facilitate healing. The process of healing involves natural cell death (apoptosis); reabsorption and excretion; cell growth and division; and cell differentiation and movement. Macrophages are a dedicated cell type responsible for chomping up damaged cells, triggering fluid ingress and retention, and producing insulin-like-growth-factor-1 to speed up cellular growth and division. [5] The side effects of their presence in our bodies are, of course, swelling and pain.
However, the absence of macrophages will result in an equivalent absence of restoration and healing. It is important in this early phase of re-feeding to allow yourself to react to the swelling, pain, and exhaustion appropriately: don’t attempt to override the natural healing process, and do your utmost to rest as that kind of pain and swelling would dictate you should do. [6]
Drs. Paul Pencharz and Marcia Azcue used bioelectrical impedance to monitor the response to re-feeding for malnourished patients. Many outside the specialty of eating disorders are utterly unfamiliar with the appearance of edema during re-feeding after a period of starvation:
“Refeeding oedema in patients with anorexia nervosa is a known but yet under-reported and poorly-understood condition….Refeeding oedema generally resolves spontaneously but some individuals may require treatment.”
Dr. Stefan Ehrlich and his colleagues at the University Hospital Carl Gustav Carus (Clinic for Child and Adolescent Psychiatry and Psychotherapy) have this to say regarding the presence of re-feeding edema:
“As in our patient, refeeding oedema usually resolves spontaneously…the occurrence of refeeding oedema has critical implications for psychotherapy. Firstly, patients may be in great distress about the sudden and unexpected weight gain. Repeated medical counselling about the transient nature of the oedema and associated weight gain can help the patient cope…”
Stepping on the scales will confirm that gravity is still working against the mass of your body, and there is little value in constantly reaffirming the presence of gravity. More importantly, weighing yourself tends to precipitate relapse for anyone with an eating disorder. Some treatment teams will suggest that you weigh yourself as a way to lower the anxiety regarding your weight. However, this recommendation fails to attend to behaviours in order of their impact on quality of life. You can feasibly avoid weighing yourself with absolutely no negative impact on your quality of life; and that is absolutely not the case if you avoid food. The priority for you and your treatment team should be for you to practice approaching and eating food.
Human beings survived well not knowing their weights for millennia. We have no more need of knowing our weight than our blink rates or VO2 max.* Your priority is to learn to respond to hunger because the structures in your brain that ensure you maintain your optimal weight set point are not cognitively controlled. Your job is to eat and you let the rest of it take care of itself.
Along with the edema, pain, and swelling, you will likely face a fair amount of digestive distress. Essentially there are four main areas of digestive distress: gastroparesis, enteric nervous system damage, gut microbiome dysfunction, and lower than optimal digestive enzyme production.
Gastroparesis is a life-saving maneuver on the part of the gastrointestinal system to attempt to maximize accessibility of nutrients when a person is starving. Gastroparesis is delayed emptying of the contents of the stomach into the small intestine. Pulverizing and disintegrating the food longer in the stomach increases the chance that more nutrients can be absorbed through the gut lining of the small intestine. For those with eating disorders, gastroparesis can essentially double the time during which food remains in the stomach. In fact motility throughout the entire gastrointestinal tract is slowed to maximize nutrient absorption. [9] Problematically, it makes the person feel very full. For most patients gastroparesis resolves with continued re-feeding in a matter of weeks. Feeding in smaller doses on a more constant basis, using a heating pad (or ice packs if that feels better) around the abdomen, and consuming ultra-processed, calorie-dense, and easily digestible foods can all help to resolve the slowed motility. [10]
Slowed gut motility can also be the result of enteric nerve damage. As Dr. Janice Russell explained in a radio interview, the demyelination of nerves [during restriction] is a process of making up for energy deficits within the body and it’s akin to throwing the antique furniture on the fire to keep the house warm. [11]
The reversal of demyelination has been confirmed within the central nervous systems of patients after weight normalization and we have every reason to suspect the same holds true for both the enteric (gut) and peripheral nervous systems as well. [12],[13] However, should gastroparesis be present due to nerve damage, then the resolution will take longer than when it is a functional survival effort of slowed motility to enhance nutrient extraction.
The bacteria throughout the gastrointestinal system are critical for digestive and immune function. As with everything else in your body, those friendly bacteria have suffered huge losses thanks to restrictive eating behaviours. The bacterial colonies will be restored with continued re-feeding, but initially their low colony counts due to starvation can mean diarrhea, gas, bloating, poorly digested foods, and also systemic signs that the gut lining is allowing the wrong things through to the bloodstream (skin rashes and itchiness). [14]
Digestive enzymes are also suboptimal and that means you may face challenges digesting some food. Many make the mistake of assuming they have food intolerances because they have unpleasant symptoms eating dairy or wheat products, but these are almost always secondary food intolerances. Secondary food intolerance means that you are not inherently unable to produce the correct digestive enzymes, but rather an underlying medical condition is the cause of the low digestive enzyme production. In this case the medical condition is an eating disorder. Discuss the possibility with your doctor of using digestive enzyme supplements to ease the symptoms when eating the offending macronutrients until your pancreas is back up to speed. Those with primary lactose intolerance will remain intolerant to dairy products, but keep in mind that lactose is not present in most cheeses, and yogurt is usually well tolerated because it has lactase present to help with digestion.
Once the decision is made to re-feed, there may be an initial few weeks of a honeymoon phase. The patient relishes being able to respond fully to hunger and eat all the forbidden and off-limits foods that she has been denied during active restriction. Extreme hunger kicks in for most as soon as they reach the minimum intake guidelines and patients will readily eat 6000–8000+ kcal/day. The honeymoon is short-lived. Soon the anxiety ratchets up and suddenly it starts to get really hard to keep approaching and eating the food.
The honeymoon is not there for everyone of course. Many find it miserable to be sloshing around with massive edema and pain along with really unpleasant gastrointestinal distress throughout the entire day (and night) as well.
But for both camps, I see a much greater reluctance to cease all exertion and exercise than I see an inability to get to, and beyond, the minimum intake guidelines each day. The topic of exercise and exertion is covered off elsewhere on the EDI site. Suffice to say that the cessation of all exertion and exercise is critical to reaching remission from an eating disorder.†
One final note on this first phase for women: the absence of regular menstruation absolutely denotes that the body is not at its natural optimal weight set point; however the presence of regular menstruation does not confirm the body is at its optimal weight set point. Confusing I know, but menstruation is a one-directional health marker.
Conundrum of pain
Most pain experienced in recovery is not a marker of something going wrong or being wrong. Pain is an integrated part of healing. Pain stops you from moving areas of the body that are damaged thereby avoiding the chance you will cause further damage. Pain forces you to rest.
“The art of medicine consists of keeping the patient in a good moodwhile nature does the healing.”
Voltaire’s observation probably has more truth to it than our current medical industrial complex would be willing to admit. Nonetheless, we have very skewed concepts of what the healing process entails.
Just fire up a new window in your web browser for a moment and type in the word “healing” under Google Images…see what I mean? It’s all colors, light, hands, butterflies, beatific expressions…The reality of healing any living system is pain, swelling, itching, aches, exhaustion and chaos.
For those in recovery there is often narrowing focus on whether the end state will be worth it and whether the reversal of damage will be total, and the real challenge actually lies within the ability, or inability, to abide while the healing process unfolds.
“If there is one thing I’d learned about hospitals, it’s that they aren’t interested in healing you. They are interested in stabilizing you, and then everyone is supposed to move on. They go to stabilize some more people, and you go off to do whatever you do. Healing, if it happens at all, is done on your own, long after the hospital has submitted your final insurance paperwork.”
If you were once a reader of the EDI forums, then you are likely well aware of the fact that many people struggle greatly through the process of healing. Some have even had full-blown medical crises: pancreatitis, diabetic attacks, worsening of preexisting conditions (eczema, allergic reaction, digestive distress, inflammatory responses of one kind or another) and one or two have even faced re-feeding syndrome.
Many speak of their frustration with the symptoms that plague them throughout recovery that were completely absent when they were actively restricting energy intake.
We tend to acclimatize to progressive worsening of active conditions, but find it shocking when crises occur when we are actively pursuing healing. We expect the healing process to be full of color, light, hands, rainbows and unicorns. Instead, it is much more like entering a maze when you begin the process of recovery; you are not climbing a mountain where you will feel, with each step, a deep and abiding sense of progress and the inevitability of reaching your ultimate goal.
“I couldn’t help but be reminded of the maze in Harry Potter and the Goblet of Fire. As Dumbledore says in the film version: ‘In the maze you’ll find no dragons or creatures of the deep. Instead you’ll face something even more challenging. You see, people change in the maze.’
‘How can you succeed? It is not measured in those terms.’ I think this is one of the most important lessons recovery has taught me, and perhaps one of the hardest to accept. People do change in this maze - but there’s no enchanted Goblet to whisk us away - only, perhaps, the gradual realisation that we’re no longer lost.”
The thing you face as you contemplate your future existence in remission is not whether the damage is reversible or not (it largely is in any case), but whether you can accommodate the fact that healing is often a process filled with chaos, crises and violence.
The processes that have maintained your life thus far must be destroyed to allow for new, and more resilient, processes to take their place to support remission. What has kept you together thus far as you sink slowly into the oblivion of an eating disorder will not take you forward to remission.
The recovery process is not without risk. Healing is a risky proposition. We have long ago lost contact with an ability to differentiate between symptoms that denote devolution of life systems and symptoms that denote rebuilding of life systems.
We have all convinced ourselves, especially in medicine, that stability is an ideal state. But stability and healing are often mutually exclusive states.
However in the final analysis, the pain you will experience in recovery commonly reflects healing but might reflect the necessity of medical intervention. Trying to figure out when you need the experts to investigate your pain and when you need to leave it all to a natural healing process is problematic. It isn’t always a “nothing to lose” situation to investigate pain that turns out to be utterly benign. It is beyond the scope of this series to offer any guidelines except to suggest you trust your instincts.
Types of pain that are common in recovery include:
dull, aching pains associated with water retention, bone re-mineralization, and/or connective tissue repair (often sacroiliac and knee joints)
tingling, numbness, sometimes sharp zapping pain, or prickling sensations associated with nervous system repair, most commonly experienced in the arms and hands, and lower legs and feet.
bloating, cramping, either dull aches or sharp pains throughout the gut (although they should be temporary and never be increasing in intensity or duration).
There are also symptoms associated with cardiac damage due to restriction:
tachycardia (the sensation of the heart speeding up or skipping a beat while you are at rest)
bradycardia (an extremely low resting heart rate, classified as under 60 bpm) often misdiagnosed as a sign of athletic health however specific QT-interval prolongation [15] will confirm it’s not athletic fitness at work. Often this is accompanied by low blood pressure.
orthostatic hypotension and/or postural orthostatic tachycardia syndrome: either feeling dizzy or faint going from lying to sitting or sitting to standing, or a racing heart when going from lying to sitting or sitting to standing.
Rest and re-feeding tends to resolve all of the above symptoms for patients in recovery from an eating disorder. However, only your medical doctor can assess whether any pain or symptom you experience during recovery can be allowed to resolve in due time or should be addressed with appropriate intervention to maintain both your safety and ongoing quality of life.
Sexy bricks
“Here is a note about sex drive: When it comes back, it comes back all at once. It will hit you like a truck full of bricks. Sexy, sexy bricks.”
Kayebunny captured on the original EDI forums back in 2012 the oft welcome shock that is the return of libido for both men and women in recovery. “Sexy bricks” became the go-to heading for any community members looking to discuss sex and recovery on the forums.
Most do indeed experience a return of their sex drive with an intensity best described as “being hit by a truck.” For those at ease with their sexuality and sexual identity, the suddenness and intensity of the return of sexual interest and desire might still be disorienting, given possibly years of unending disinterest, going through the motions, and perhaps even starvation-induced pain and discomfort during sex too.
And it can also be a decidedly frightening and unwelcome experience for some. For those where sexual abuse or trauma features in their past, restrictive eating behaviours might have ended up inextricably linked with coping with the legacy of such abuse or trauma.
Again, trauma and abuse do not cause an eating disorder, but for some predisposed individuals they may activate and/or reinforce the condition.
There is obviously some urgency for involving a qualified therapist or counselor if trauma and abuse have resulted in a very damaged sense of your own sexuality and sexual identity. However, there is also tremendous value in involving a therapist or counselor even when the return of libido is a welcome addition to your life. An eating disorder often hijacks maturation and development and therefore your returning sense of sexuality might feel awkward, immature and unwieldy in ways that working through the challenges with a therapist can greatly improve.
Neither/nor second phase in recovery
Assuming a patient has managed to wade through all the physical discomfort of the first phase in the Homeodynamic Recovery Method, she will tend to turn her attention to the physical shape and lingering symptoms in this neither/nor second phase in the recovery process.
I can often identify someone on sight who is living within the neither/nor space. It is difficult to describe, but patients genuinely appear unformed—not misshapen, just lacking definition and subtle age-appropriate refinement in shape. The term we have settled on is: adult-sized toddler.
The body preferentially lays down fat around the midsection to insulate vital organs from hypothermia. [16] And unfortunately, many relapse at this point because the level of distress is high and associated with a sense that the shape they have is permanent. The face, neck, shoulders, and abdomen appear out of proportion. This is a normal and transient phase in recovery, but it is difficult to maintain enough mental and emotional distance to appreciate that the body is healing. The even redistribution of the fat around the midsection to the rest of the body occurs if you persist right to the final phase. [17]
The second phase is marked with lingering and irksome symptoms combined with the disproportionate fat mass around the trunk of the body. The honeymoon phase of actually thrilling to that food intake is a distant memory. Patients in the second phase tend to remain very focused on the physical experience of recovery.
Some patients will complain of boredom with food in phases two and three. Others will complain of no longer being hungry for the food. Many will ask if this is a sign that they “are done” with recovery. Expressions of boredom and disconnection with hunger originate with anxiety and are not signs of “being done.”
Identifying boredom is negatively correlated with mood labeling and with flow‡. [18] These negative correlations are important because the state of boredom is often viewed as a trigger for anxiety, but it is quite likely that boredom is a mislabeled mood that actually should be identified as underlying anxiety. It is very difficult to experience any hedonic (pleasant) connection when dealing with the physiological discomfort and arousal of a threat identification response. That means that losing interest in food could be the result of still maintaining a diet that is too bland and restricted in terms of food choice (keeping enjoyable foods off the list because of perceived threat) or that the anxiety associated with approaching and eating food has been misidentified as boredom.
Boredom in relation to the second phase of recovery is usually frank anxiety that makes it difficult to maintain connection with the hedonic value of food intake. And food is meant to be pleasant. Quoting myself here:
“To assume that hedonic consumption of food is unnecessary to maintaining homeostasis, or homeodynamic balance, is to suggest that the evolutionarily older parts of our brain are unnecessary to our overall health and survival. To believe that conscious suppression of eating desires or intuitions is all that stands between us and chaotic weight fluctuations flies in the face of central nervous system biological fact.”
Must-be-done-by-now third phase of recovery
It is between phases two and three that a patient should seek appropriate counseling or therapeutic support to persist with the recovery effort to get to full remission, if she is not already receiving psychoeducational support. In fact, in order to shift into phase three, a patient has to move beyond the physical experience of recovery to address how her thoughts and emotions continue to reinforce behaviours that may keep her disconnected from her hunger. Feelings of frustration at having the process of recovery appear to stall or having unmet expectations of a “just-so” recovery process, can impede a patient’s connection to hunger as readily as the states of anxiety and boredom.
Remember that the intake guidelines match what non–eating disordered individuals eat every day on average, so if you are unable to match that amount, the first line of investigation is to uncover how much lingering avoidance of food is at fault.
Although many patients have a far greater struggle to rest fully, even when they are able to feed and respond fully to hunger, it is the integral necessity for psychoeducational training and support that has so many stuck in a neither/nor phase. These individuals often contact me with ever increasing levels of despair and accusation that their recovery is not progressing as it does for everyone else.
There are many reasons why individuals in this situation will not seek out psychoeducational support, not the least of which is often the financial incapacity to pay for those services. However, on many occasions, the financial impact of seeing a therapist is not the defining factor in choosing not to build the third leg of getting to remission. There are options for getting therapy when money is tight, not the least of which is to look out various excellent workbooks that can be found on library shelves everywhere.
If you are feeling stuck then look to the likelihood that it is your assumptions, world view, and the cascade of practiced behaviours you have in response to those thoughts an feelings, that are getting in your way of moving forward into remission.
High-risk final phase to remission
If a patient manages to expend energy and focus on the brain retraining aspects of remission during the third phase, then the last phase to remission is in some ways the most rewarding and also the most dangerous.
When patients have been advised to pursue a specific target weight as a marker of remission, or when they have treatment team members that have not recognized their own culturally steeped prejudice when it comes to fat, then they will often be encouraged to stop eating so much and return to so-called maintenance intake and activity levels.
It is a recipe for fast, and often very severe, relapse. The minimum intake guidelines are designed for non–eating disorder healthy controls. Any intake amount below those averages is subclinical restriction. There is no scientific validity to the cultural construct that anyone must consciously restrict food intake to maintain her health and weight. Specifically, any recommendation for someone with a history of an eating disorder to restrict intake to maintain weight is simply dangerously unsound advice.
Even in the presence of a confirmed diagnosis of a competing chronic condition, few such conditions have morbidity or mortality issues that rest anywhere near the severity of an active eating disorder. Your medical advisors should therefore apply extreme caution even when modest improvements in mortality outcomes may be realized for some other chronic condition with the application of, most commonly, exercise. A flare or relapse of an eating disorder is almost always not worth the risk in comparison to very subtle improvements in other chronic conditions that could also be realized without applying exercise or restricting a class of food type.
At this point in recovery, when potentially faced with these misguided suggestions to restrict, many patients will have temporarily overshot their optimal weight set point. While they have done all the hard work in therapy and counseling to reframe their innate self-worth as having nothing to do with numbers on the scale, they may find that suddenly loved ones and treatment teams alike are all in a tizzy over the weight.
Just as these patients start to feel at home in their own skins and are finally experiencing more energy, less pain and swelling, and feel well connected to hunger that takes them easily to the minimum intake guidelines (as expected), they are slammed by society’s endemic levels of anxiety over all things to do with body weight. Everyone wants them to recover, but not too much. It’s very painful when those close to you cannot let go of their own prejudice to relish your improved state of mind and health.
It’s not a comfortable space to be outside a cultural norm of any kind. There is a reason that the white rabbit lives within the HDRM logo. The white rabbit references many literary metaphors, including its presence in the movie The Matrix. The protagonist in the movie, Neo, is told to follow the white rabbit (referencing Lewis Carroll’s book Alice’s Adventures in Wonderland) and, in making the decision to do so, he is quickly faced with the choice to remain safe and secure in his existing world, or to enter the complete unknown.
“After this, there is no turning back.
You take the blue pill—the story ends, you wake up in your bed andbelieve whatever you want to believe.
You take the red pill—you stay in Wonderland and I show you howdeep the rabbit-hole goes.Remember: all I am offering is the truth. Nothing more.”
* VO2 max is peak oxygen uptake or maximal aerobic capacity.
† To understand all the reasons why maintaining exertion and exercise routines are counterproductive to reaching remission, please look at the The Eating Disorder Institute blog posts on the topic of exercise.
‡ Flow, in a psychological sense, refers to a sense of being completely immersed in the task at hand. The term “flow” comes from psychology professor Mihály Csíkszentmihályi. Do not ask me to pronounce that name.
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