Time to Remission
Recovery Is Tough
“Am I done now with recovery because ___________(fill in the blank) has happened?”
This question was a prominent on the 2012 EDI forums. The reality is that the median time for reaching a full remission is 18 months.
That’s right—one and a half years. In fact, even that's not definitive because there is no clinical consensus on what constitutes remission. In two separate reviews the median time to remission was 14.4 months and 27 months. [1],[2] One longitudinal study where patients were followed for 10-15 years found that time to remission was exceedingly protracted: ranging from 57 to 79 months. [3]
And no, it does not matter that you have had your period all along, or it has just returned. And it does not matter if the water retention has subsided. And it does not matter if you are bored with food or no longer “hungry”. And it does not matter if you have had a sudden increase in hunger after months of eating to the guideline amounts either. In fact pretty much any scenario you could come up with will not matter when it comes to what your body needs to accomplish during recovery.
No, you do not keep gaining weight throughout the entire 18 months. Yes, you could possibly be in a full remission sooner (or later!) than 18 months, 27 months or 79 months. But for the vast majority it is going to be around somewhere close to 18-27 months to feel on solid remission ground.
What’s the Rush?
The reason that so many “want to be done” with the recovery process has a few sources. The first, and most common in the earlier phases, is the ratcheting of anxiety as you dedicate yourself to re-feeding.
As I have mentioned in other posts, the best way to describe the experience of having an eating disorder is that eating triggers a threat response (anxiety) in you. In Phases of Recovery I talk about the fact that many experience an initial honeymoon phase when they begin their recovery process, but that it is fairly short-lived because the anxiety tends to mount as you continue to eat.
Another common reason is the sheer mountain of physiological symptoms you face. Feeling unwell is not just unpleasant; we have little skill in accommodating the experience.
One member mentioned having made a concerted effort to eat recovery amounts of food and rest for two months but the results were so unpleasant that it seemed counterintuitive to persist.
Food is nourishing and energizing so how on earth can it generate so much physical discomfort? Swelling, aching, exhaustion, palpitations, shortness of breath, pain, numbness, tingling, sweating, chills, hair loss, soreness, nausea, bloating…all because you are providing your body with the energy it has been denied for months or years?
Healing is an energy-demanding undertaking for the body.
Some of the symptoms in recovery are actually the delayed onset of the damage incurred during restriction of energy intake (hair loss, palpitations of the heart, shortness of breath…). However the swelling, aching, exhaustion, pain, numbness, and so on, are the body’s way of encouraging immobilization and rest to try to maximize its ability to use the energy coming in for repair.
Trauma, Illness and Chronic Conditions
If we take trauma to the body, as an example, you likely have seen individuals who survived physical trauma due to an accident and they appear to lose an enormous amount of weight in a very short space of time while they are recovering from their injuries.
The body needed a massive influx of energy to support the repairs and right at the very time the patient was likely too incapacitated to eat enormous amounts of food to convert to energy. In those circumstances the body turns to its own emergency energy sources: myelin, muscle, bone, and organs.
However in those cases of trauma, assuming no underlying eating disorder, the patient eats voraciously as soon as they are somewhat on the mend as a way to restore the body’s energy balance as quickly as possible. Often the healing process of restoring the energy balance is masked within the healing process associated with the trauma itself as well.
Also, with trauma to the body, we are more willing in society to accept that healing takes time. Gabrielle Giffords, the former congresswoman from Arizona who was shot in the head on January 8, 2011, has made phenomenal progress in her recovery but she has years of continuing rehabilitation to go for her brain to maximize its ability to retrain itself.
To some extent we can accept that acute illness takes time to overcome, however our society is still pretty impatient. I had a case of pneumonia several years ago and I was truly shocked that six weeks later I could not manage to be at work for more than about two hours. I had not been hospitalized with my case but could not walk down the hall to the bathroom unaided or stand to have a shower for at least two weeks after the worst of it. I am as guilty as everyone else for expecting that my recovery would somehow not need as much time as it really took in the end.
For chronic conditions of all kinds, our society is at its most impatient, intolerant and unrealistic. Perhaps it is our propensity for drama that has us always readily accepting that crushed vertebrae, broken bones, punctured organs and the like should take time to heal whereas the slow and steady seepage of energy and vitality that occurs with chronic conditions should somehow be a mere flick of the hand to rectify.
Eating disorders rarely flare for “just a few months” and the origins of restriction will pre-date your awareness by years. In light of that, it is reasonable to assume that your body will try to expedite your healing but that a few months is rarely all it will take to reach remission.
You’ve had a very slow catastrophe in the making all these years, and a concerted recovery effort is disaster-aversion maneuvers on a system-wide scale.
The Titanic took almost three hours to sink after it grazed an iceberg. It was 24 hours from the start of the test at Chernobyl to the catastrophic explosion that ensued the next day. It took 40 years for the failed implementation of the Pontchartrain Hurricane Protection Project of 1965 to result in levees failing in New Orleans after Hurricane Katrina hit in 2005.
Clearly we underestimate the development of slow catastrophe.
In fact in the world of aviation catastrophes, it is often referred to as the Butterfly Effect, as a reference in chaos theory to the theoretical example that the formation of a hurricane may have been dependent on the fact that a butterfly flapped its wings thousands of miles away weeks before the event.
Small, easily ignored anomalies can quickly worsen to generate a full-blown catastrophe. Medicine could learn a lot from aviation.
All those years with lab results that are “a bit out of tolerance but not cause for concern” is really an exercise in watching a butterfly’s wings flapping and assuming not much could really come of that.
Rob Young: Flickr.com
Recovery Is Response And Not Disaster
Just so you know, the image is not of a real crash but rather a Hollywood set. My apologies to any of you who have a real fear of flying, but the analogy I am about to use is hopefully useful nonetheless.
When something goes drastically wrong, the cockpit crew knows that the first order of business is to do nothing. It’s true. You have to resist the urge to respond immediately.
Of course, you do have to respond (usually within about six seconds) to avert disaster, but you do not want to inadvertently overcompensate and almost assure disaster as a result. If there were one thing that needed to be transferred from the cockpit to the hospital it would be developing that innate discipline to avoid overcompensation in an eagerness to fix. And although the principle in medicine of “primum non nocere” (first, do no harm) should incorporate that discipline, it often does not.
The second lesson of aviation disaster avoidance is that the cockpit is a very loud, noisy and chaotic place in the middle of the attempts by the flight crew to rectify the problem(s). The airplane is in a state of precarious flux and it is letting you know with countless alarms, sirens, automated voice alarms— all insisting that they are the source of the problem to be fixed.
Many of the alarms that will sound begin sounding as the flight crew starts to rectify the underlying problem.
In fact, often prior to the flight crew’s intervention, there may not be much beyond a blinking warning light.
Your lab results during your recovery effort can just as insistently repeat that thyroid levels or calcium levels are the source of your symptoms.
Here are just some examples of all the alarms that may sound in your own ‘cockpit’ as you begin the process of rectifying an imminent disaster by refeeding: hypoglycemia, pre-diabetes, high cholesterol, hypothyroidism and Hashimoto’s, osteopenia and osteoporosis, acid reflux, dental enamel erosion, infertility, reproductive hormone inadequacies, depression, memory and retention degeneration, gastroparesis, Barrett’s esophagus, non-alcoholic fatty liver disease, liver enzyme anomalies, kidney function anomalies, anemia, leukopenia…
Many long term eating disorder patients can be horrified by how chaotic their lab results appear once they enter a real recovery effort, when for years things have been stable and perhaps only marginally out of tolerance or just plain ‘normal’.
It takes the human beings in the cockpit to avert disaster for the airplane and its passengers. Specifically, it takes their gestalt: education, training, teamwork and instinct.
When it comes to using this analogy in the process of healing from an eating disorder, always remember that you are the most educated, trained and highly attuned when it comes to directing your own body. Of course do not overlook the value of the cockpit crew, namely your health care professionals, in helping you stay safe throughout the recovery process.
This example of disaster avoidance, and there are many others, is likely one of my favorites: BA Flight 9—as if you haven’t already enough to read!
Patience
Everyone hates to be told to be patient or to give it time. Mostly because it implies sitting with a lot of discomfort for much longer than seems fair, reasonable or even manageable.
I am going to quote myself from a message to a site member (with some editing obviously) as a way to address sitting in discomfort and accepting your body’s time and scope for healing:
You don't need to be positive. You don't even need to be hopeful right now. You can be sad, frustrated, angry, disappointed and depressed. Negative emotions are not comfortable emotions, but they are not emotions to be banished or squashed with happy chipper facades.
The ones who push through to complete remission do not do so whistling a happy tune with a smile on their face. Anger, deep sadness and feelings of withdrawal and staying in the home are normal facets of recovery. Some things have to be stripped away to be properly rebuilt.
In our societies we assume that depression is brain dysfunction (for more on that please read: Depression).
The problem is one of transformation: Who are you now? Is what you see in the mirror the sum total of your existence, your potential, your purpose? You are meant to consider these tough questions and not try to wipe them out or assume that they are signs of the recovery process not working for you.
It is very akin to a grieving process. There is no way to short circuit a grieving process or somehow fast-forward it. You trudge through it. You are grieving the entire thing: the loss of what might have been had you never had an eating disorder; the loss of nostalgically remembering feeling in control and strong when in the heart of the eating disorder (it was an ED-generated mirage, but you still likely felt that way at the time); and the fear of the new and completely unknown you and what the future holds without ED. Going through it all is how you transform to your new resilient normal. I cannot really tell you to embrace the grief, because no one can really embrace the kick to the gut that grieving is, but you can mindfully move through it.
Be water.
“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.”
In a psychological sense, water can flow and it can provide enough buoyancy to hold up and support a huge freighter. In other words, let yourself hold a grief-stricken thought (water in the cup) and then let it flow through you like water through your fingers. Feel bad and then allow yourself to identify that you can also feel better— it will move back and forth throughout the day.
And, you need to do this in an interdependent way. Reach out to your family, friends, therapist and treatment teams. Get angry. Whine. Complain. Even wallow in self-pity— it's normal!
Get angry about why this has happened to you. Get indignant that you live in a society that tells you all you can be is numbers on a scale. Get righteous about your need to deserve a life that is more than shape, weight, or being able-bodied.
Demand that an innate right to be valued, because you are alive, should stand for something in your mind. Tell the eating disorder that it doesn't get to camp out in your threat identification system in your head anymore as the arbiter of making all that is wrong in our society somehow falsely right.
Did you deserve to have your life hijacked by an eating disorder? No! Do you (or any of us) deserve for our worth in society to be measured by our size and health? No!
No one asks for a chronic disease and the fallout from trying to manage it day in and day out.
Then breathe out. Slowly breathe out. Let the anger, indignation, fear, helplessness, sadness, misery and despair flow out with the breath.
There are no shortcuts. But there is most certainly a disaster averted when you persist with a recovery.
Bergh, Cecilia, Ulf Brodin, Greger Lindberg, and Per Södersten. "Randomized controlled trial of a treatment for anorexia and bulimia nervosa." Proceedings of the National Academy of Sciences 99, no. 14 (2002): 9486-9491.
Von Holle, Ann, Andréa Poyastro Pinheiro, Laura M. Thornton, Kelly L. Klump, Wade H. Berrettini, Harry Brandt, Steven Crawford et al. "Temporal patterns of recovery across eating disorder subtypes." Australian and New Zealand Journal of Psychiatry 42, no. 2 (2008): 108-117.
Strober, Michael, Roberta Freeman, and Wendy Morrell. "The long‐term course of severe anorexia nervosa in adolescents: Survival analysis of recovery, relapse, and outcome predictors over 10–15 years in a prospective study." International Journal of Eating Disorders 22, no. 4 (1997): 339-360.
