Readiness VS. Willingness - Recovery, Remission, Quality of Life, & Harm Reduction
The following is written by Sally Chaster, one of the original founders of the Victoria Eating Disorder Peer Support Group (and is also available on their website).
This is a conversation I personally find quite important and also quite philosophically perplexing to consider as it can be quite controversial. I go back and forth on what I personally think about defining “recovery” and related processes that are least oriented in the direction of recovery. I am still unsure how best to think about these things. On the one hand, I strongly feel that it’s important for us to recognize that recovery is an individual process, that it looks different on everyone, and thus it will be defined differently by everyone. I also believe it is important not to judge people’s lives based on our own definitions of a “life well lived.” I think we do a lot of damage when we label people as “chronic", “refractory to treatment,” or “resistant to treatment.” I firmly believe there is always hope for people to live a better life, it just may look different for each individual. That said, I am also intensely conscious that I never want to have my thinking about these things limit people’s options and potential in recovery, but I do personally find having one narrow definition of “recovery” as The Goal (even though it’s not clearly or consistently defined, even in academic research) can leave some people (mainly those who have struggled for a long time) feeling like they don’t fit that narrative and thus leave them feeling rather hopeless and this is not something I think anyone should be left feeling. None of us are doomed. A better life is always possible no matter what stage of recovery you’re in or age you are. This conversation will lead to some disagreements and I encourage people to share their own views and experiences. In the end my intent in sharing is to encourage conversation, critical reflection, and also the message that there is always hope. I do want to recognize that this post is probably most relevant to those who have struggled with an eating disorder for a while though, so if you’re just starting out, if you’re quite young, or you’re the parent of a child struggling, please hold on to the main message which is that there is ALWAYS hope.
The basic philosophical question I struggle with when it comes to this conversation essentially boils to the “law of identity.” What this means, or rather what the law states, is that everything that exists has a specific nature (“A is A: Law of Identity, Importance of Philosophy):
“Each entity exists as something in particular and it has characteristics that are a part of what it is. "This leaf is red, solid, dry, rough, and flammable." "This book is white, and has 312 pages." "This coin is round, dense, smooth, and has a picture on it." In all three of these cases we are referring to an entity with a specific identity; the particular type of identity, or the trait discussed, is not important. Their identities include all of their features, not just those mentioned.
Identity is the concept that refers to this aspect of existence; the aspect of existing as something in particular, with specific characteristics. An entity without an identity cannot exist because it would be nothing. To exist is to exist as something, and that means to exist with a particular identity.
To have an identity means to have a single identity; an object cannot have two identities. A tree cannot be a telephone, and a dog cannot be a cat. Each entity exists as something specific, its identity is particular, and it cannot exist as something else. An entity can have more than one characteristic, but any characteristic it has is a part of its identity. A car can be both blue and red, but not at the same time or not in the same respect. Whatever portion is blue cannot be red at the same time, in the same way. Half the car can be red, and the other half blue. But the whole car can't be both red and blue. These two traits, blue and red, each have single, particular identities.”
in the context of eating disorder recovery this means that we can’t truly have multiple definitions of recovery and to do so is deluding ourselves (i.e. there is one objective true definition of recovery otherwise we make it all meaningless if everyone has a different definition. It relates a lot to the idea of a common language. Each word has meaning because it means the same thing to each of us. If we all defined it differently, than you might be calling what I think of as an elephant, a lion and it all gets rather confusing.)
I have been accused of over-thinking quite a lot in therapy in the past and I admit that’s a pretty accurate statement about me. Still, I do think it’s important to think about things critically, instead of just accepting them as fact. To get back to this conversation around recovery… as I’ve gotten older, I have tended to become more conscious of our cultural bias towards valuing the objective in research, in medicine, and just in our general thinking. We have this tendency to believe that we open our eyes and see the world as it is, but I’ve come to feel much more aware of how “we see the world as we are, not as it is” (i.e. subjectively, filtered through our own biases, perceptions, beliefs, interpretations, etc.) which lends itself to the idea that recovery is an individually defined process and I do think we would better support people by taking this view into account and providing support that appreciated the individual nature of recovery. Basically, I’ve started to lean towards thinking the whole “A is A” thing is limited and not reflective of reality.
What I like about Sally’s interpretations and options around different ideas of recovery and related concepts discussed below, is that each is presented in a very non-judgmental way, there’s no statement about what quality of person you are, or how “good” your life is judged to be externally based on whatever category you fall into in this discussion of possible outcomes. That is the most important thing in my mind, that non-judgmental valuing of each person’s life.
I think in the end, some people are going to find more strictly constructed definitions of recovery more helpful and other people might not even like the word “recovery” and all of that is okay because each of our lives is our own. We each get to decide what our life and “recovery” looks like, what we value, and what makes a life worth living. We’re not there yet in terms of having this perspective reflected by treatment options, but I have faith that we can broaden our perspectives, it will just take some work to apply to more clinical settings (i.e. service options provided through healthcare).
The point I most want to get across is that if you are a person who has felt you don’t fit that typically presented idea of recovery, if it doesn’t feel possible to ever reach a vaguely defined “full recovery,” you are not alone and you are not a failure. This is a complex discussion and it’s often presented more simply (on social media, in stories, etc.) But it is absolutely normal to not feel your life follows some perfect narrative. We often describe things simply in healthcare, or in shared stories, or on social media, but that doesn’t mean they are. You are not a failure, you are not less of a person, you are not limited to any one definition or way of living life. Life is constantly in flux and as long as you’re alive the possibilities are endless. This is terrifying for those of us who appreciate categories and neat and tidy definitions, but it’s also freeing in a way. So peruse the following and see how it makes you feel. Maybe it feels relevant and relatable, maybe it doesn’t. Either is okay.
I think it’s also important to note that the following is one person’s view and something I (Shaely) think is important, but it doesn’t necessarily reflect what VIVED thinks. It’s also important to stress careful evaluation of personal views because the risk with multiple ideas around recovery is that one’s eating disorder can very easily convince one to settle for something when the possibility of full recovery is out there. I personally am just never quite sure if it’s more helpful to only present one reality and shut down all conversation about other possibilities or whether it’s more helpful to offer multiple ways of thinking with the risk that people end up thinking they can’t achieve full recovery so please take care when viewing the following and do share your thoughts and disagreements. The other thing I would like to stress is that even if a person (typically someone who has struggled with an ED for a long time) chooses a harm reduction approach to their struggles, it doesn’t mean that they cannot change at any point in time. Maybe that harm reduction approach gets them to a place where they can truly begin to consider a full recovery?
Before we get into the body of that discussion though, there’s another piece by Sally I’ve included on readiness versus willingness, as that discussion somewhat proceeds any discussion of possible trajectories in recovery. Have a read and see what you think.
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.
The Victoria Eating Disorder Peer Support Group does 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, 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.)