Defining recovery: What do patients define as recovery?

Yesterday, I posted about how researchers define recovery in a variety of clinical situations. I think we have made a lot of progress in our understanding of what recovery is from a scientific perspective. Researchers are now embracing the idea that recovery involves much more than just regaining/maintaining weight and stopping ED behaviors. Certainly that’s a large part of recovery, but it’s far from the whole picture. A lot of what science has learned about what recovery is comes not just from hard data about quality of life, psychosocial functioning, and data on relapse, but also from talking to people with eating disorders about how they view recovery.

Many of these studies were qualitative and based on extensive patient interviews. I have to confess that I’m a data girl. I like concrete numbers. But like so many things in recovery, it’s difficult to assign a hard number to factors in recovery. So perhaps its fitting that I’m using many of these types of data for a post on recovery from a patient’s perspective.

Getting to Recovery

A 2004 paper in Qualitative Health Research looked not only at what recovery was but what seemed to shift in people’s thinking as they embraced recovery (D’Abundo & Chally, 2004). For many, accepting that they had an eating disorder (and that they really should do something about it) was a significant turning point. Said the authors:

For many, acceptance of the disease was triggered by a turning point or critical event that resulted in the recognition of the severity of their eating disorder. When faced with hospitalization, a focus group member said, “I work in a hospital. I was not about to be admitted to one.” She felt she would rather change her behaviors than have her colleagues know that she was suffering from an eating disorder…Acceptance of the disease also involved recognizing negative consequences of the eating disorder. Participants realized effects of the eating disorder included looking bad, being cold, being embarrassed about eating behaviors, bingeing, purging, fertility problems, not thinking clearly, feeling tired all the time, and having no social life. Participants similarly described “getting fed up” with the consequences of the eating disorder.

Many of the interviewees spoke of rejoining society as the began to recover and participating in life again. They rebuilt relationships. Yet many said they weren’t completely over their disorder. It was still in the back of their mind, and they still had low-level struggles with food, weight, and body image.

Another study of a group of women, all of whom reported recovery from anorexia, seemed to center around a theme of “Becoming the Real Me” as they recovered (Lamoureaux & Bottorff, 2005). The process was neither smooth nor steady. One woman said that

That’s what characterized the struggle for me … the forward and the back…. It felt … as I moved forward, I was moving into territory that was unknown … an identity … that was unknown … into behaviours that felt unfamiliar…. So it wasn’t a comfortable place. It was more comfortable even though it was torturous, there was some kind of comfort in knowing how to restrict my diet. Trying to let go of that, I felt so vulnerable. And that’s where the scariness came from, that vulnerability.

Defining Recovery

Understanding the process of reaching recovery is good, but it doesn’t really tell us what recovery is. Nor does it give us a hint of how patient’s perceptions of recovery are similar to or different from the more concrete data seen in clinical research. Luckily for us, researchers are looking into that. The primary researcher studying these criteria is Greta Noordenbos at Leiden University in the Netherlands.

One of her first studies was to ask former (recovered) patients and ED therapists a set of four questions (Noordenbos & Seubring, 2006):

  1. Which criteria for recovery are important according to ex-patients and therapists?
  2. Do ex-patients and therapists agree in their opinions on recovery?
  3. Which recovery criteria were realized by ex-patients at the end of their most recent therapy or treatment?
  4. Did ex-patients improve in the period after their most recent therapy or treatment?

Using the existing literature on ED recovery, Noordenbos asked the patients and therapists about the importance of 52 recovery criteria, which included eating behaviors, attitudes about body image, physical recovery, psychosocial functioning, and emotional aspects of recovery. As seen in the table below (adapted from the study), there was a fairly high agreement between patients and therapists about which aspects of recovery were most important.

Percentage of former patients and ED therapists who say a particular item is important in the ED recovery process. Adapted from Noordenbros & Seubring, 2006.

Percentage of former patients and ED therapists who say a particular item is important in the ED recovery process. Adapted from Noordenbos & Seubring, 2006.

The most important recovery criteria are in the table below:

Most important factors in recovery, according to patients and therapists.

Most important factors in recovery, according to patients and therapists.

A separate study, also by Noordenbos, asked former ED patients a set of open-ended questions about what they thought were important factors in recovery (Noordenbos, 2011). Their answers fell into several main categories and were far broader than those seen in clinical research:

  • Eating and drinking behaviors
  • Exercise and physical activity
  • Attitudes towards food
  • Body evaluations
  • Physical recovery
  • Psychological recovery
  • Emotion regulation
  • Relaxation
  • Social relations
  • Sexuality
  • Co-morbidity (depression, anxiety, etc.)

There was a significant amount of agreement seen with the therapist’s opinions. Interestingly, many (though not all) of these criteria are covered in Bardone-Cone’s criteria for recovery, which is another reason I’m particularly fond of this conceptualization. It’s relatively easy to measure and it encompasses many of the different aspects of recovery that patients and therapists say are important.

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14 Responses to “Defining recovery: What do patients define as recovery?”

  1. Interesting to me that patient percentages were higher than therapist percentages on numerous, significant data- leading me to believe that either 1) patients are holding themselves to too high a standard or 2) therapists are holding patients to too low a standard. Wonder which one it is.

    • Maybe both?

      I used to believe that full recovery meant you would never have ED thoughts. But as I’ve gone through the process and actually, you know, spent time in recovery and away from ED behaviors, I’m not convinced that I will ever be 100% free from ED thoughts. And that’s okay if that’s the way it is. I can’t control my thoughts- I can only control my response. I don’t dwell on the thoughts (well, I try not to, with varying degrees of success) and they don’t drive my behavior, nor do they inevitably result in ED behaviors. So I’m okay with that for now.

  2. This is a great post, thank you for doing this. I’m gonna have to sit with it a bit and think, because honestly…my answer right now is “I do not know.” Not at all. I feel like having an answer should be part of the recovery process, but…maybe I can’t find one until I’m further along. I don’t know. Jumbled thoughts! But thanks again. It’s good to read this.

    • Recovery is a dynamic process. My goals at the beginning of recovery weren’t the same as they are right now.

      Making my goals concrete really helped, as well as making them something I could (for lack of a better word) control. So “finding a partner” wouldn’t be a good goal (it depends too much on the other person and a whole lot of luck), but joining a dating site or a Meetup group would be.

  3. What assessment tool do you think is best for evaluating patient progress? Thanks

    • I’m not sure, Lori. Some of it would depend on the patient’s goals. Maybe working together to develop a goal sheet and checking in with them regularly about how they’re doing and whether there’s anything they want to add or remove?

  4. Jennifer Lotshaw March 15, 2013 at 4:06 pm

    I find this really interesting, as I am always questioning that notion of “when does the definition of recovery begin” and “what defines recovery vs recovered”? Anyways…
    What I find interesting (and kind of disturbing) is that in the “Ranking of Most Important Criteria for Recovery”, normal and/or stable weight is not included. In my years of experience and/or treatment, this has always been lectured as a critical component of recovery- both physiologically and psychologically. Although every body has its unique set point, there is a basic range that one must meet that has been scientifically proven to physiologically prevent the bodies defense mechanism from starvation. Psychologically, one cannot refrain from distorted thinking, intrusive thoughts or even engage in supportive therapeutic work if they are malnourished or their weight is compromised beyond a certain level.
    Additionally, as someone who suffers from an eating disorder, I can see how easily it is for on (and/or their eating disorder) to look at the “Ranking of Most Important Criteria for Recovery” list, see that maintenance or achievement of normal weight is not on the list, and therefor argue that it is not necessary to recover. At least that is where my mind immediately went.

    • But if you look at how many therapists think that it’s important, it’s nearly 100%. That is one flaw of *just* looking at what patients think is important, just as it’s a flaw to look solely at what researchers think.

      So don’t let that trick you. It’s just one sample. I’m guessing if you polled my readers, you’d probably get a much different response.

  5. I was surprised to see in the Noordenbos & Seubring study that the somatic criteria was ranked much lower than some of the other criteria by both therapists and patients. I wish I could get into the entire article that you link to as I’d like to read more about the study (but you have to pay to read it). I am curious to know exactly how the ranking was done. For example, were the therapists and patients given a list of criteria and they had to pick out any of them they agreed with to define eating disorder recovery? Or, did the researchers have the therapists and patients rank the criteria in order (1-52) of what they found most important to least important? Or, were the therapists and patients ranking each individual criteria using a scale of how important they thought each criteria was to recovery (using a ranking scale going from not very important, moderately important, very important…or something along those lines).

    • Sarah, I will email you the study tomorrow. But yes, they were given the list of criteria and asked if they thought it was important. I don’t always agree with what people said was important, but I suppose that’s somewhat to be expected.

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