Readiness Vs. Willingness
READINESS VS WILLINGNESS
This is an important discussion to have: will you ever be "ready" to do what it takes to recover? Tackle behaviours head on? Use coping skills instead? Find out who the real you is behind the curtains of the eating disorder? The answer for me is often, "No! No, I am not ready. But I am willing..."
Willingness is so much more important than readiness. Willingness is what gets us moving in a direction. There is such power in the words "I am willing to try. I am not certain of the outcome, but I am willing to try."
I would argue that there is a third dimension to this dichotomy of readiness and willingness: the desire to recover. Many of us feel the weight of our eating disorders, interfering with everything we do, crushing us with its incessant demands. Our eating disorders convince us that even though friends and others with eating disorders have lost their lives to their eating disorder or have suffered serious physical, emotional, or social consequences, we are somehow the exception, we are somehow invincible. It will never happen to us because we are not "sick enough." In the face of that brick wall of demands, we may be willing, but we also need desire to recover. With only willingness, we may be stabilized while inpatient, but without desire we may be prone to relapse when more intensive supports are no longer in place.
We do not expect or require group members to be at a certain place in their recovery processes, but we are a "recovery-positive" group. We will meet you where you are and respond with empathy and compassion., but we will not encourage eating disordered behaviour. Often, our illnesses take over our lives and we are called (by parents, clinicians, other family, or a sudden health crisis as a result of our EDs) to do more than we are ready to do. It is at time that we need to look within to see if we can muster even a small shred of willingness. And it may be a willingness to work on improving quality of life instead of chasing that elusive and fleeting goal of "recovery" defined by someone else and that's okay too.
If there is anything we can do to support you, please lean on us and know that we will understand.
ARE YOU WILLING?
The piece below was originally written by "Keeker" (unfortunately the URL to her site is no longer valid.)
I don’t believe in being “ready” to recover. I believe in being willing to recover, but ready? Who is ever ready to gain [weight], give up purging, or forfeit bingeing? Who is ever ready to give up their illusion of control, the only coping mechanism (albeit negative) that they know?
If everyone waited until they were ready to recover, very few would ever recover. Recovery is scary as hell. Recovery means facing the unknown and, likewise, giving up on the known. If I sat around waiting to feel ready to recover, I’d never move forward. I’d be consumed by my disease.
Because of the nature of eating disorders, I believe most people will never feel entirely ready.
But what they can be is willing. Yes, I will eat this and nourish my body. No, I will not purge even though I’m full and uncomfortable. Yes, I will continue to get back up after every relapse. No, I refuse to give up on recovery. Yes, I will continue to fight that disordered voice for as long as I live. Yes, I am in this for the long run. I may hate recovery, but I hate my eating disorder more, so I will move forward. Because I am willing.
For the time being, I can be willing to go through the recovery motions, and hope that in time I will learn to embrace them with all my heart. I do so for my health. I do so for those who love me. But most of all, I do it for myself.
My eating disorder will never be ready to stop controlling me. It will never be ready to shut the hell up. Which is why, despite my lack of readiness, my willingness must prevail.”
recovery, remission, quality of life, & harm reduction
RECOVERY, REMISSION, QUALITY OF LIFE, AND HARM REDUCTION
I (Sally here) have been kind of avoiding this section, because, as one blogger wrote (paraphrased), "recovery is a mess." Below, I have created four different outcomes to living a better life in every possible way: 1. recovery, 2. remission, 3. quality of life, and 4. harm reduction. These outcomes are my own interpretations of possible outcomes, and do not represent the views of anyone else.
Let's start with recovery, as it is the most studied and focused on aspect of eating disorder treatment. "Full recovery" rates are reported as low as 30%, up to around 67%, depending on who is counting, sample size, and what methodology and definitions of recovery they are using. There are people who are completely recovered and report that they either do not experience any thoughts or behaviours, or that their recovery is strong enough to resist both. There are others who report being fully recovered, yet still live a fairly regimented meal plan, resisting engaging in thoughts and behaviours, just as the first group.
This blog post by Andrea at the Science of EDs is an eye-opening experience for anyone seeking to find out what recovery looks like: Unpacking Recovery: Eating Disorder Part 1: The Recovery Model:
“If there is one thing that researchers and clinicians seem to agree on, it is that there is no consensus on a definition for the concept... If nothing else, these points of view will highlight how difficult it can be to tie down the construct of “recovery from eating disorders” when the disorders themselves are so complex and require complex solutions.
If clinicians find it difficult to agree what eating disorder recovery is, then adding the patient experience in is just adding complexity to the subject.”
My advice is, decide what you want, and if that is complete recovery, go after it with everything you have. And remember, you can switch the goal posts at any time. Say, for example, you have reached a regimented meal plan but want more freedom: you get to decide what that looks like and how to get there.
Things to think about: no clinicians or researchers actually agree on what recovery from an eating disorder is. They could say one month, or six months thought and behaviour-free, as self-reported by those in recovery. It could just be a certain period of time where someone is behaviour-free, or where in another, they are thought-free. It could be as simple as people are following their meal plans, even if their weight is unhealthy for them.
As noted by Andrea in Asking the Impossible: Eating Disorder Recovery in Context, "the recovery model is based in a movement designed by mental health client (consumer) advocates that can be traced back to the 1930s."
A recent move in mental health toward recovery-model informed care; that is, including people with lived experience in defining what recovery is and how to get there. Of course, this still rarely plays out in relation to eating disorders specifically. People with eating disorders, at least in North America, are rarely included in the development of the services meant to serve them, and we lack significant community supports and services for these folks.”
While not eating disorder-specific, Andrea notes in Unpacking Eating Disorder Recovery: Part 1
“A deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.” (Anthony, 1993, p. 527, cited in Dawson et al. (2014) p. 3) (Note that this could apply to any of the four approaches, not just recovery.)
Andrea notes further that this approach is not based in the "who were you before your eating disorder" (because, after all, if many of us developed an eating disorder as a maladaptive coping tool to protect us from other behaviours, then we may not want to go back to being the person we were, if that is even possible. And this is only relevant if you can remember, and it is appropriate). Conversely, emphasis is placed on:
Personal responsibility & control
This is something you really can get your teeth into if you are aiming for full recovery. What this means (for me, at least,) is that you need to have a clear idea in your head about what will constitute recovery for you, and pay less attention to the wealth of studies and treatment programs, all using their own definitions and milestones. Use what you read or listen to, to explore new ideas for nutrition and quality of life, and continue on your own path to your own recovery.
Our peer support group is certainly behind your efforts to move in that direction!
Another thing to think about is that because of the moving goal posts, people who struggle to recover often use their struggles or failure as another stick to beat themselves with, because we are clearly too defective to reach whatever goal post is set and may keep this secret because of shame and humiliation when we believe everyone else has found recovery. (Of course, this is the time when people really need to speak out, (1) because chances are good that they are not the only ones feeling this way, and (2) because they can use speaking out to ask loved ones, friends, and clinicians for additional support. Sometimes these problems leave us feeling isolated and, in searching for reassurance, we may end up taking refuge back in our eating disorders again because we understand that world and it comforts us in a way that no weekly appointment to get weighed could.
But remember, in the positive side to a full recovery approach, is that we get to set our own goal posts and define "recovery" around our own choices. You are free by your own choices, not by the parameters set by someone else in what may be entirely different circumstances.
Anyone who believes in recovery should go after it with all their will, taking advantage of what supports there are. Be confident about what your recovery will look like and, in some cases, accept that your treatment team may have different ideas, as Andrea in Unpacking Recovery Part 4: Are We All on the Same Page? describes. Also, learn to be realistic about what life will be like when you reach recovery: as noted in Recovering from a Chronic Eating Disorder, at the other side of recovery, you are not going to find unicorns and rainbows: you are going to be figuring out who you are - which is often a painful process - and dealing with the everyday types of problems that other non-eating disordered people do; perhaps money issues, reintegrating back into your family and social life, going back to work, and so forth.
I believe you can recover, if that is your goal, and that you will live a rich and rewarding life, including, of course, the bad times along with the good. When we learn to tolerate those bad times without leaning back into maladaptive eating disorder behaviours, we will know for certain that we are on the path to recovery.
There are often many roadblocks to recovery, and even to remission, (described below.) We live in a world where we are inundated by visions of unicorns and rainbows and flowers when we reach that magical state. We're going to love our bodies and ourselves, find our true identity, get our dream jobs, and never relapse, to paraphrase Carrie Arnold at ED Bites in Roadblocks to Recovery:
This isn’t what recovery is like. Getting hit in the face with the rude reality of the day in, day out, utter slog of recovery (didn’t I just eat yesterday?) was enough to make me seriously consider quitting.
A similar sentiment is found in The Beauty is the Mess written by Jessica and published by Beating Eating Disorders: "the beauty is the mess. The beauty of recovery and of life does not occur in those 100% perfect moments, rather joy and beauty can be found in those little messy moments. Those days when you’re able to go out for ice-cream with a friend and not feel guilty, those long car rides just talking and laughing with someone you care about, those deep meaningful conversations, those days when you spent hours crying over a bagel and you’re able to pick yourself back up afterwards, reading a good book, listening to music, getting in a fight with someone and being able to apologize, feeling like you need a break from recovery but continuing to fight anyways, eating that doughnut you’ve been craving, even though it makes you feel guilty."
I leave you with this delightful, three minute video made for the National Eating Disorder Information Centre of Canada: Full Recovery is Possible
And then the day came,
when the risk
to remain tight
in a bud
was more painful
than the risk
Some bloggers and researchers do not believe that full recovery - living a life completely free of thoughts and behaviours - is really possible on a permanent basis. Because eating disorders are brain-based disorders for which no brain surgery is available, some people prefer to consider those who are mostly free of thoughts and behaviours as being in remission. Just as a disease like cancer often goes into remission, so do many mental illnesses.
This approach may often rely on the concepts of full weight restoration so that body repair and restore and hard emotional work can both be continued, and of neuroplasticity or in essence, re-wiring your brain to build new neural pathways so that you make healthier choices and engage in healthier behaviours, leading to a place where thoughts and behaviours are largely non-existent.
However, the older, original brain wiring still exists, and the most common cause for relapse under any approach to recovery, is nutritional deprivation. Say, you're stressed and a skipped meal turns into skipping multiple snacks and eventually meals, a binge and purge leads to dangerous levels of incidence, and so forth. It is important to know your own "red flags" - signs that you may be struggling with the risk of relapse - and take immediate action.
Discussing her own relapse after a period of recovery/remission, Andrea Shay in Recovery is Possible, Relapse is Reality, published by Beating Eating Disorders, notes:
"One day I hope I’ll realize that hunger isn’t comforting. Silence isn’t safety. And pain isn’t the only reminder I have that I am indeed "alive". These feelings are my current reality. The heartbreaking realization that I’ve once again sunk back into my [disorder]"
Whether your path is to pursue full remission, full recovery, quality of life improvements or harm reduction, signs of relapse should not be ignored, whether it is thoughts (the way you describe food or negative thoughts when you look in the mirror) or behaviours (skipping meals, increased exercise, purging, etc). Respond and start fighting back as best you can and as soon as you start to note your own "red flags," before the hole becomes too deep to climb out of.
QUALITY OF LIFE AND HARM REDUCTION
I cannot verify the next two sections, Quality of Life and Harm Reduction, with any academic or research materials, although there are some anecdotal accounts of the harm reduction approach. In a sense, these approaches are about creating a more valuable life as defined by you, while living with an eating disorder. The goals are intended to allow some weight stabilisation, but that is only a means to achieve a goal, not the goal itself.
These are what I have put together on the basis of my own experience and the experiences of others. With recovery such an elusive term, I believe it is something that only individuals can define for themselves, and it is not left to us to question their perspective. Remission seems to better accommodate the idea of the recovery/relapse continuum, as it allows people to reach a stage of recovery but acknowledges that they may (not all of them, perhaps) still be vulnerable to lapse or relapse. Quality of life (QOL) takes a different approach, one in which priority goals are defined by those struggling with eating disorder, and each person is unique and set their own goals. It allows them to identify what is important to them, and to identify what they need to do to achieve those things (partially restore weight, cut back bingeing and/or purging to X many times a week, take a course, take a chance and reach out to some old friends, take a class in something you've always been interested in, and so forth).
Harm reduction is similar to the approach increasingly becoming the standard of care in addictions treatment. For those people who are just unable to improve and retain their health and emotional status, the harm reduction approach looks at what they need in terms of community support and provides it, often through an ACT team (assertive community treatment) kind of approach.
The differentiation I make between the two is that QOL is something that is self-driven, where the person struggling with their ED makes the decisions about what criteria would mean an improved quality of life for them, and then defines what actions they need to take to achieve them. It may be that those who chose QOL are those for whom no appropriate resources are available in Canada, but out-of-country funding for eating disorders is extremely rare; hence, a self-driven different approach which is based on being (sometimes just) well enough to set and work on goals that will make their lives qualitatively better.
The harm reduction approach is more focussd on external resources continuing to support clients, but doing it in their homes and their communities rather than another hospital bed.
I don't want to mislead anyone: both the QOL and the harm reduction approach are most likely to result in lower life expectancies for those who chose them. However, the ability to maximize satisfaction in lives focused on what we want will, for some of us, over-ride the increased risk of early mortality. I encourage people to only take that approach when they have tried everything else available to them, often numerous times, and just want to jump off the "hamster wheel" and think instead about what gives their lives meaning.
QUALITY OF LIFE
The quality of life approach seems to resonate more with people who have struggled much of their lives with eating disorders. My own personal version of QOL is to draw myself a ladder, and write inside the rungs what QOL improvements I want to achieve. Perhaps it is to stop lying to people I love. Perhaps it is to maintain a healthier, but not ideal, body weight. Maybe I want to be more involved with my community, or work on making socialising more comfortable. Beside each rung, I write out what steps I need to take in order to achieve that level and then work on the changes. It requires you to think about what changes you want in your life: do you want to be able to be closer to your family; would you like to be more spontaneous and just say "yes" when someone calls you up and invites you out; do you want to take a course or two in your field, or just something you are interested in, which requires mental acuity; or something else altogether.
My own QOL ladder below:
Beside my rungs (although you can use any imagery that works for you; some people prefer a continuum, for example), I would write what change(s) I need to make in order to reach that rung. Gain/lose weight. Stabilize my nutrition. Not compensate when I eat with family. Look for opportunities to do something outside my comfort zone. Read a book. Take a course. You will know what it is you have to do, and no matter how much you might hate doing it, if it is required to reach a rung, you need to do it. And if you really just hate it (as opposed to coming up with the energy and motivation to doing it), maybe it's time to move to a different QOL goal. One thing I have personally found interesting is that the more I work on these goals, the more I become open to the idea of making changes to my eating disorder, and to sticking to them.
As with anything, "Rome was not built in a day", and you don't have to throw yourself immediately at doing the thing required to reach an achievement, nor to accomplish each achievement at once: those approaches will set you up for failure. If it is hard, try it one day at a time. Talk to people who support you, including your loved ones and you treatment team. Maybe set a goal to accomplish one thing towards your achievement three times in a day.
This article from Science of EDs, Unpacking Recovery Part 4: Are We All on the Same Page?, explores the issues around clients/patients defining their own measures of success versus having clinicians deciding success measures for their clients.
“Tell me, what is it you plan to do with your one wild and precious life?”
The final approach I am going to describe is "harm reduction.” You may have heard the phrase used as approach to treating people who are struggling with addictions. It is accepting that, at this time, at least, some people struggling with eating disorders are just not in a place to recover. With a complete circle of support, however, we can help people reduce the harm, or the amount of harm, that they would otherwise experience. It can reduce hospitalizations, get people more involved in their communities, help them cook meals that they will eat, and even, sometimes, improve their weight by some amount.
Harm reduction usually requires a team of clinicians, from GPs, psychiatrists, therapists/counsellors, occupational therapists, to dietitians and others. The team is based around the client's needs and willingness to pursue this route. All of these clinicians see the client in their home, or in their home community; the client doesn't travel from office to office. In addition to helping with jointly developing a meal plan and helping with grocery shopping, harm reduction also often includes meal preparation and some meal support. This approach is not intended to allow clients to get worse, although that will surely happen in some cases, but more to actually meet them where they are at and let the clients define what needs they acknowledge and how they want to meet them.
Of course, I had a handful of articles saved on eating disorder harm reduction, but can only find one, Chronic Eating Disorders. (Please note that numbers, including weight, are mentioned, so please do not read if numbers trigger you.)