No escaping the eating: improving quality of life in anorexia

Last year, I wrote about a new study that looked at how to get people with long-term anorexia (aka, severe and enduring anorexia nervosa, SE-AN) to stay in treatment. It’s been a thorny problem in the field of eating disorders, because treatment drop-out is a big problem, both in research and in clinical practice. Whether individuals with anorexia are afraid of treatment, don’t believe they need it, or some combination thereof, it’s hard to get someone to show up at a therapist’s office, week after week, not to mention make changes like eating more and gaining weight.

I was okay with the first part (see, Mom? I’m doing something about my eating disorder!) but I wanted nothing to do with the second half. At all.

Despite the therapy, and the expense, my eating disorder remained entrenched and I remained fairly ambivalent. My quality of life sucked. Yes, I was employed, and that was definitely something, but I struggled at work, I didn’t have friends, and my health was marginal at best. Still, I was determined that I could therapy my way out of my problems. If my life didn’t suck so badly, then maybe I would be motivated to eat.

My therapist at the time supported this line of thinking. She wanted me to tackle the issue of dating first. We talked about Internet sites, about where to meet people, about what I was looking for in a potential partner. And that’s as far as it went. I signed up for a free online dating account, but I froze up when it came time to actually, you know, meet in person. I was a Land WhaleTM. For one thing, I couldn’t handle the thought of eating in a restaurant. For another, going on a date would mean I would have to interrupt my exercise and assorted other rituals, which wasn’t going to happen.

I tried other things along these lines, with similar results. I was ultimately told that I probably just didn’t want to get better and there was nothing more to do.

Improving quality of life is a great goal, but how we go about doing that is the subject of great debate, especially in someone with a long-term eating disorder. While people have been slowly accepting the idea that reducing ED symptoms is generally the most effective first line of treatment, it’s been less clear about SE-AN. For one, this is a group that generally doesn’t promote much optimism in the treatment community. As well, the idea that behaviors can improve is generally seen as wishful thinking.

Putting the cart before the horse?

In the trial on SE-AN that was published last year, the authors specifically said that the goal wasn’t to focus on weight gain, but rather quality of life. And indeed, they did show both an improvement in quality of life and some small improvements in ED thoughts and behaviors. The question they couldn’t answer, however, was which led to which. Did improvements in quality of life lead to improvements in ED thoughts and behaviors? Or was it the other way around?

A new study in the International Journal of Eating Disorders answers that question. Although neither of the treatments used for SE-AN focused on weight or behavioral change and instead focused on improving quality of life, they found that improvements in eating and weight were the only things that actually predicted improved quality of life.

Briefly, about the study participants: they were between the ages of 20 and 62 and had suffered from anorexia for at least seven years. Average duration of illness was 16 years. Most were single and did not have children, and were clinically underweight. The participants were also assessed at baseline, at the end of treatment, and 12 months after the end of treatment on eating disorder thoughts and behaviors, the physical and emotional effects their illness had on their lives, their level of depression, and their overall and ED-related quality of life.

They found that BMI at baseline was significantly associated with ED-related quality of life, such that individuals with a higher BMI had, on average, a higher quality of life. Although changes in ED symptoms and weight weren’t specifically targeted in this treatment trial, changes in both factors did occur over the course of treatment. When the researchers measured which factors were associated with improved quality of life, they found that precisely two things were: weight gain and improved ED thoughts and behaviors.

The authors conclude

This finding suggests that improvements in [quality of life] are associated with, and may be dependent on, behavioral change and weight gain…The main outcome paper from this RCT,[21] as well as other clinical papers[9, 15] have suggested that, in SE-AN, more emphasis should be placed on QoL while retaining improved BMI and reduced ED symptoms as important outcomes. Results from the current study suggest that improvements in QoL may be driven by symptom change and weight gain. Certainly this warrants further experimental investigation as, if true, QoL improvement may be unlikely to occur independently of weight gain and symptom improvement.

So what does this mean for ED treatment? Getting someone with an eating disorder, especially someone who has been sick for a long period of time, to buy in to the idea of behavioral change is a tough sell*. Getting someone to want to improve their quality of life is generally a little bit easier. Indeed, the idea that maybe one day my life wouldn’t totally suck was one of the things I held onto during refeeding when I was otherwise losing my mind. For someone with a long-term eating disorder, the authors say, it might help to start small rather than basically freaking someone out and having them run the other way.

Keeping someone engaged in treatment is a win. So is improved quality of life, with or without behavioral and physical improvements. By all means, let’s celebrate improved quality of life however, whenever, and wherever it occurs. But we also need to think about how to be most effective at making that happen. I’m sure there are exceptions to this, but the research is consistently pointing to the idea that the best way to make this happen for most people is to focus on decreasing ED symptoms.

*wherein ‘tough sell’ may also equal ‘understatement of the year.’

Reference:

Bamford, B., Barras, C., Sly, R., Stiles‐Shields, C., Touyz, S., Grange, D., … & Lacey, H. (2014). Eating disorder symptoms and quality of life: Where should clinicians place their focus in severe and enduring anorexia nervosa?. International Journal of Eating Disorders. DOI: 10.1002/eat.22327

 

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15 Responses to “No escaping the eating: improving quality of life in anorexia”

  1. Well shoot, I was not able to access this most recent paper, but the earlier paper seemed to show that focusing on QoL issues produced *much* lower drop out rates. Which seemed to indicate that this approach resonated with patents in ways that weight restoration didn’t.

    In this most recent paper, they seemed to accept that QoL was worth focusing on, and that’s what they worked toward with this group, but were they really able to tease out the chicken or egg issue ? If quality of life issues improved, it seems reasonable that improvements in symptoms might follow.

    Perhaps I’m just not reading these results properly, but I still can’t see where they’ve shown that increases in BMI are what drive these changes, even though they were able to associate the two.

    • They used predictive modeling, by asking what were the factors that led to increased quality of life. The only things that did were increases in BMI and decreases in ED symptoms. While it’s not the same quality of data as in a longitudinal study, the math they used was quite solid.

  2. Damn. Speaking as a person with ‘SE-AN,’ these are unfortunate results. ;p

    Kidding, kidding. (kind of…)

    Seriously, though, as much as I’d like to argue otherwise, I definitely notice a difference in my mood and overall quality of life when I’m eating better and taking care of my body. It’s certainly much easier to focus on other aspects of the eating disorder, but you’re never going to get better if you don’t face the elephant in the room — When it comes down to it, tackling the food issues is ultimately the best way to achieve lasting results.

    Thanks for giving me a little more ammunition to keep doing that.

    • I know! I had the same thought when I finished writing- that when I was deep in my ED this was *not* what I would have wanted to hear. 😉

  3. Curious if you or any others with SE-AN are able to easily recognize improvements in “quality of life” or if they must rely on the observations of others? I am not at my target BMI yet and so still undergoing the stress of refeeding and weight gain, so perhaps that clouds my perceptions. But as of now, I still feel that I have the same stress levels that I did at lower weights- perhaps even higher stress levels, since refeeding is so tedious and upsetting. However, my loved ones (including spouse, siblings, friends, therapist) all say I am “more connected,” “less stressed,” and just generally better and happier. They are not liars, so I believe them- but it is hard to see it in myself.

    When I was suicidal, I was NOT at my lowest weight, but more sort of in the middle, between lowest and where I am now. In the heart of that nowhere’s land between “anorexic” and “normal.”

    What I CAN see: I have fewer relapses now. I spend more time qualitatively on things I like and less time on things like weighing myself now. My head is less noisy now. I suppose those are measures of quality of life? But my stress levels… that’s another story.

    • Personally, I can usually notice some quality of life improvements on my own — and I would definitely call spending more time on things you like and experiencing ‘less noise’ to be improvements. I suppose that could be subjective, though? I can definitely relate to feeling you’re in some kind of no man’s land — I feel that way a lot as I’m at a similar place as you. And I agree, the stress levels don’t really decrease at first. From experience, though, (I’ve been through my share of relapse/recoveries), that DOES get better. Just keep plugging away and eventually the stress should decrease. It’s important to remember too that stress isn’t always a bad thing — (I love Kelly McGonigal’s TED talk on this), so maybe if you can keep that in mind you’ll start to recognize the other quality of life improvements more readily 🙂

  4. I have SE AN also, and carrie, the part of the post about

    Despite the therapy, and the expense, my eating disorder remained entrenched and I remained fairly ambivalent. My quality of life sucked. Yes, I was employed, and that was definitely something, but I struggled at work, I didn’t have friends, and my health was marginal at best. Still, I was determined that I could therapy my way out of my problems. If my life didn’t suck so badly, then maybe I would be motivated to eat”
    that sounds like me a lot until recently
    I am treating and refeeding at home because of insurance and having been labeled “too medically complex ” to treat

    I have cerebral palsy and use a walker and wheelchair it takes a lot of effort to ddo anything which uses energy quickily. but me ed loves it.

    I also have a colostomy to make things more complex

    my biggest fear is that. because it is so difficult and I have no drive, I will gain weight but not feel excited or driven and moving/functioning will be more of a struggle with the weight increase.

    I just WANT to do things again but everything seem s so draining

  5. I am SE-AN, though my weight has been normal BMI for 20 years (with relapses during this period, followed by recovery by my own)
    Up to now, I found a compromise between ED thoughts and quality of life: I concentrated on a very busy professional life (workaholics instead of anorexic ?)as an expert, meaning control of human relationships.
    Now, I would like to change my job and include more diversified abilities, but ED thoughts are still there and I feel totally dissociated from emotions, body and communication possibilities
    The struggle to maintain a normal weight took all my energy and today, I cannot plan anything for the future; I only feel something must change. I don’t know any more if weight gain was a factor of quality of life improvement

  6. I had SE-AN (I also struggled as an adolescent).

    In therapy whenever we focused too much on food/weight/body stuff it became pointless. I would feel backed into a corner, argue from that place and side with the anorexia; even when I was wanting and sometimes even committed to recovery. They were taking my way of coping away without offering me anything else.

    I switched therapists and found someone who was a good fit for me. In the 18 months or so I saw her we only talked about food/body/weight in the first session and one other time when she checked around it because I had lost a lot. That is what I needed.

    What made a difference for me was understanding how/why ed was my coping and learning to cope with my life better by managing stress/anxiety/trauma as that is what my ed was really about. Having the experience of someone who really got me and completely accepted me was a big help too. Someone had to provide space for that so that I could learn it myself.

    What I like about this research is that it at least shows that people who struggle with SE-AN are not lost causes without hope of recovery or improvement which is a huge misconception in ed treatment circles. Just that could bring big changes into how people are perceived and responded to.

  7. Where have you been?? Sooo glad you are back.

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  10. I have been co-existing (most of the time-some of it was only just existing) with this AN for thirty years. For the past two years I have been taking part in a research program that looks at anorexia and exercise (particularly within an inpatient/treatment setting as well as individual thoughts and attitudes towards exercise).
    I believe for the most part that we, as consumers,should be taking the shame and blame off ourselves and directing it towards the failure of timely and/or evidence based and appropriate treatment both inpatient and outpatient.
    I believe research is the key and I have noticed changes within the academic communities here in Australia .
    The CASIAN staging system for AN seems to me a lot more beneficial (which is potentially life saving by the very nature of benefit) and is a lot more relevant for long term AN (then the DSM V or the WHO classifications).
    Like HM,I was not suicidal at my lowest BMI , my suicide attempts were post-inpatient treatment, mainly due to the trauma of the inpatient setting, losing my right to freedom , being separated from my young kids, forced medication, ECT, rapid weight gain from psychotropic medications and that awful deprivation of privileges and punitive measures etc.Actually, just diverting off topic again-there is a woman at Oxford who is undertaking doctoral research on PTSD after inpatient admission for ED. She is collecting info from the UK, USA, New Zealand, Australia and Canada. I took the survey and it was beneficial for me to have the trauma validated and to be able to voice it-so there is an improvement in my quality of life just from what I interpret as an admission that it is ‘not my fault that treatment did not work.’ That sort of validation can have far reaching positive consequences.
    The participants were interviewed 12 mths after inpatient-a year is not a long time at all with this disorder. I understand it was not a longitudinal study and the maths may be solid but I don’t believe it should be seen as a solid conclusion relevant to long term anorexia-its only relevant in context and I may be wrong but individuals who were involved in the study would have already had to have at least an inkling of motivation for ‘recovery’ to even sign up for the study.Many of us thought we were recovered only to discover that when shit hits the fan in life-the AN behaviours and thoughts return.

    Its great to see that finally severe enduring AN is getting a look in but there is a hell of a long way to go just as there is for emerging AN and present treatment protocols.
    This article may actually give some people false hope whilst for others, it could be a god send.
    Acceptance of myself and my disorder, is the best fit for me and improves my daily life but my QoL is not improved by any current treatment, medication or weight gain.
    It is improved by knowing that things are changing ,faster in some places then others, and maybe the younger people will have improved treatment outcomes and lowered mortality rates and hopefully, a lesser sentence-some of us got life.
    just a note of healthy sceptisism here but because the drug companies would like a slice of this pie(no pun intended)-it may be wise to exercise caution -the makers of olanzapine are going for a new patent with a new name and no stigma for being an anti-psychotic(apparently this leads to non-compliance in the adolescent AN population). They want a drug to ‘treat’ AN-which basically means weight restoration quickly and patients on the medication for long-term ‘treatment’. Once articles have been published in peer-reviewed highly esteemed journals-then things can begin to be taken out of context for others intentions-its just the nature of the industry.
    Its actually up to us to be pro-active with our treatment-we know ourselves better then anyone and the AN community is not short on articulate ,intelligent, resourceful people-that’s YOU Carrie-thanks for what you do.
    NB-check out scholarly articles in the British Journal of Psyc-that’s where I go to see what they are really doing.

  11. Hi,
    First I have to say thank you so incredibly much for this blog Carrie- it’s absolutely amazing & has helped me so incredibly much. I don’t normally ever comment on any site but I just have to this time… I keep coming back to these specific posts about SE-AN . Has there been anymore “updates”? I’m desperate…

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