“Are you in recovery right now? Why or why not?” That’s one of the questions I’ve been asking on the SEDs Tumblr every once in a while. It is interesting for me to find out about the people who read the blog/Tumblr. But more importantly, it gives me an opportunity to show diversity of experiences (and feelings).
Last week I decided to formalize this a little bit and to open the floor to non-Tumblr users; I made a survey with over a dozen questions. I received a lot of responses and I wanted to share them in the hopes that some of you will, perhaps, find them reassuring. I won’t get to cover all the questions I asked, so this will be part I of, well, I don’t know how many posts.
Please note that this survey is not scientific, not comprehensive, and not necessarily representative of the general population of ED sufferers. Here’s a PDF of all the “raw” data for the questions covered in this post: ED survey results – Part I. Some of the responses have been edited for spelling and grammar. The responses I quote in this post are not necessarily representative or anything; indeed, it may be pretty random.
The breakdown for the last half of the respondents is: <15 (4%); 15-17 (19%); 18-24 (46%); 25-30 (15%); 31-35 (12%) and 41-54 (4%). (I only thought to ask the question after already running the survey.)
1. Are you in recovery right now? Why or why not?
Out of the 54 responses, approximately
- 15 said they were not in recovery
- 25 said they were in recovery
- 14 were in the “kind of” category, with about 11 leaning toward “yes” and 3 leaning toward “no”
Reasons cited for not being in recovery included (1) fear of weight gain or a desire to lose weight, (2) lack of access to treatment, (3) lack of support, (4) comorbid conditions taking priority, and (5) feeling undeserving of happiness or recovery.
Lack of support was a common theme among the responses both among individuals who were in recovery (and found the lack of support to be a challenge) or those who were not (and found it to be a barrier to beginning recovery).
Among those who said they were in recovery, by far the most commonly cited reasons were the desire to get their “life back” and the realization that the ED was incompatible with desired life. Indeed, almost all the respondents echoed these sentiments. Some also said they were sick of being sick and many did not want to continue hurting or negatively affecting those around them — parents, friends, and partners.
Two individuals explicitly stated that they felt they had no choice but to recover:
. . . In all honesty, recovery feels like the only option; even if I’m only managing to do the minimal, even if I’m ‘stuck’, I have to do it, have to try.
. . . I’m now at a point where I feel as though I don’t really have a choice but to keep at it.
Many responded with essentially “yes but” or “no but”, most commonly citing ambivalence and lack of motivation, as well as lack of resources and positive effects of the ED:
I guess I’m in recovery — it’s hard to be in day treatment and not consider yourself working on recovery. But at the same time, I don’t really feel altogether motivated to change (hell, most of the time I don’t even believe I have an eating disorder). I’m in treatment because it was that or more or less imminent death; I feel like I can’t completely consider myself in recovery because I want and miss my ED.
. . . I am in outpatient treatment, rarely acting on behaviors, but my intentions and thoughts are severely disordered. Ambivalence is a good description on how I feel about recovering.
I honestly oscillate between wanting to get better and wanting to die on a day to day basis unfortunately. I think the main reason for my lack of dedication to recovery is due to the anxiety relief my disorder provides me.
Thinking about this question myself, I’m not sure how I’d answer. What about you?
2. (For those in recovery) What is the biggest challenge you are facing right now in recovery?
Thirty-three individuals responded to this question. Weight gain and body image were cited as the biggest current challenges for about a third of the respondents. Many also cited “eating” as a big challenge, particularly accepting that they need to and deserve to eat, as well as learning to eat “normally.” A few people cited physiological/GI issues as a problem.
Here, just as for the question above, several people cited ambivalence and lack of motivation as their biggest struggles:
Force of habit; having to keep remembering about my other triggers (being tired, working through lunch).
The largest challenge I face is complacency. I am a highly functional anorexic and the automaticity of my eating disorder behaviors make it difficult to realize how much ED impacts my life and my relationships with others.
I know a lot of people who could relate to these. It is as if motivation is inversely proportional with how much the ED behaviours are affecting your life, which is why being “functional” can be a double-edged sword, in a way.
Many, many people talked about dealing with emotions and coping as being extremely challenging without being able to rely on ED behaviours. I can relate to this point a lot; I still have not completely mastered dealing with uncomfortable feelings or acute anxiety without giving into bingeing/purging.
Facing the emotional baggage that caused or perpetuated the ED and finding the courage to ask for help.
Coping with the past and my emotions without turning to other forms of self-harm, and I guess, perhaps adjusting to the fact that actually I am beginning to be ok with being a higher weight. I feel fairly ok with it and that in itself is hard to adjust it/ I find myself doubting and questioning the fact I feel OK. I feel like I shouldn’t feel OK!
“I feel like I shouldn’t feel OK!” Yes. I could relate to this so much. Personally, I did not find gaining weight to be too challenging, but it was only until recently (last 1-2 years) that I’ve been able to consistently eat more to maintain my weight without relying on bingeing, and to accept that I really do need to eat this much. (I’m not sure I’ve entirely accepted it, but my data seems to suggest that I really do need to eat this much.)
3. (For those currently not in recovery) What is the biggest challenge you are facing right now in getting to a place where you can begin (or resume) recovery?
As I should have expected, the responses to this question echoed many of the themes mentioned above. About a fifth of the respondents mentioned weight gain as their primary challenge to begin/resume recovery. Interestingly, although this is a substantial amount (and of course just because individuals did not explicitly mention “weight gain” does not mean it is not a challenge for them), it does, perhaps, counter against the idea that weight gain is the primary reason why individuals with EDs are “treatment resistant” or “difficult to treat.”
The fact that I will be accepting myself for what my body is naturally is what is stoping me from returning to recovery.
I don’t like the weight I am at. I feel I can not stay at this weight and be okay. It feels like it will be wrong. Forever. At the same time, I know losing and at a lower weight will still probably suck and feel wrong.
Motivation, ambivalence, being “stuck” in the “ED mindset”, and feeling like recovery would mean losing one’s identity were common themes as well:
No motivation to recover. Perhaps denial as well. The usual “I’m not sick enough” thing. No one in my family or friends circle seems to think I need help either.
Finding motivation to change. I feel like my “routine” works for me; I do well at university, I have a boyfriend etc. It’s like some part of me tries to convince me that recovery won’t make me feel any better, I’ll still feel depressed because that’s just who I am.
Losing my identity and my best friend… if that makes sense.
Three individuals stated that one of their biggest challenging is convincing themselves they deserve happiness and/or recovery.
4. (For those who have been/are in recovery) Was there something you thought would be very challenging but turned out to be fairly easy (or easier than you had expected)?
I loosely grouped the responses to this question:
A. “opening up/being honest” was cited by 7 people
I thought opening up to others in recovery (in groups, online. . .) would be hard and triggering but it’s turned out to the best part of recovery.
B. “tackling fear foods” was also cited by 7 people (a tie!)
Fear foods! I just need to get the food in front of me and venture to eat a bite. They truly aren’t dangerous. (If a bagel bites you back you know something’s wrong.)
C. “eating more” and “it was/is all hard” were tied with 5 mentions each
Not really. Everything about recovery was overwhelmingly difficult for me, to be honest.
Eating over 2000 calories a day. The encouraging recovery blogs on Tumblr who say you should eat 2500+ a day really motivate me to get the calories in and my metabolism sped up again so I can maintain my weight while eating lots of delicious food. Also accepting myself and my body; I no longer have a desire to be thin.
D. “accepting weight gain/body” were cited by 4 people as being easier than they had expected
Facing my body. The first few months of changes which involved restoring an adequate amount of body fat for a female body was REALLY fucking hard, but once I accepted the fact that I need more than 5% body fat to function, the rest of the gain didn’t bother me. My shape changed drastically in the first couple months and now I’m the same shape regardless of gain, which I was not expecting and has made it really easy to cope with.
E. “all easier“, “not purging” and “not weighing” were cited two times each
I think that it’s all been easier than I expected. . . or actually, I expected for the weight gain to be the hard part, and the psychological part to be easier and it has turned out to be the other way around. I’ve also found that eating ‘fear’ foods, although not easy, gets easier with time and is never as bad as I imagine, even the first time.
Other things people mentioned (one) were “being happy”, “eating out”, “grocery shopping”, “journalling” and “reducing exercise.”
It’s fairly easy for me to be happy. I never thought I could wake up and look in the mirror and say, “I am good, today is good, everything is good.” I never thought I could be happy, and I am. I’m so grateful.
I thought it was very interesting that so many people mentioned tackling foods and opening up as being much easier than they had expected. Some of the responses seemed so similar I was almost beginning to think the same person did the survey twice!
5. (For those who have been/are in recovery) What has been the most challenging part of recovery? Is there something you thought would be much easier than it turned out to be?
This is the last question I’ll tackle in this post. Responses to this question were much harder to group. Still, it was interesting to see that for almost every person who found something to be easier than they expected, someone else found that very thing to be much harder than they had thought it would be.
For example, two people said that “not purging” was much harder than they had expected and one person said that fear foods never really went away.
Many thought gaining weight and/or accepting their body and not relapsing would be easier than they found:
I thought gaining weight would be easier than it has turned out to be. The fear of the scale holds me back from eating enough to gain weight.
Gaining weight is the most challenging because of thoughts/feelings it brings up regarding my body and past sexual abuse. The more weight I have, the more aware I am of my body.
A good five or six people said that simply starting recovery or sticking with it was much harder than they had expected:
When I first started working on recovery, I naively thought that it would be easy to keep going with it. I didn’t expect to never relapse, but I never thought I might have a relapse that would have my disorder get worse than it ever had been.
Yes, that would’ve been me at age 14. Seeking treatment out for myself and never being in denial about my ED I thought I’d be done with it in a few months. Hah, yeah.
A few people mentioned that recovering in a society that prizes thinness and where disordered eating behaviours are so common has been tough. A couple mentioned eating and a few mentioned dealing with feelings and emotions:
The most challenging part for me was dealing with the intense emotions that came with resuming normal eating. I hadn’t expected that to happen at all, so it was a challenge.
Changing the way I think about myself, my body, and eating.
Reinventing a new life.
And I think something everyone recovering from an ED has dealt with at some point:
Not attributing recovery with weight. I always struggle to remind myself that my physical weight is not necessarily an absolute indication of how well I am. I can be in a good place physically and still be sick in my head.
I’ll end with something that I could relate to a lot (not so much now but before I felt this way a lot):
. . . Another hard thing is seeing on the online community, people discussing ‘real’ recovery and feeling inadequate because of this.
Recovery is about getting better. If you are getting better and feeling better, you really can’t be messing it up. How can you mess up feeling better or feeling less controlled by ED thoughts/behaviours?
This is one of the reasons I wanted to do this post I hope that by reading some of these responses (as well as the rest that I did not quote, which are in the file I linked to at the beginning of the post), it will become really clear that people’s experiences with struggling with an ED and in recovery are very diverse. But here’s something that’s almost universal: A lot of people feel ambivalent about recovery a lot of the time. A lot of people alluded to sticking in their comfort zone/not challenging themselves, not feeling motivated to try harder, or not having the mental/emotional resources to do so.
These are all real, common, and valid reasons/experiences. They are what they are. And I think one of the best things we can do is just listen and accept the fact that most people’s experiences will be different from our own, and that’s okay. We can all define what recovery means for us (or not), but it is another thing entirely to suggest that everyone should strive toward some “ideal” as far as recovery is concerned — to be honest, that notion of achieving perfection in recovery strikes me as disordered in and of itself. Isn’t part of recovery about accepting imperfection?
Thank you so much for doing this! It’s so interesting to me (because I’m a total stats/data nerd) to see all the various responses, to see which things are common. I’d bet a lot of people think they’re the only ones who feel X or Y thing, and seeing that others do too can be such a relief.
I’m glad! Yeah, I agree, absolutely!
By some miracle I recovered from bulimia (after seven years) without intervention, so I’m not aware of “emotional baggage” that might have caused it, such as I might have discovered in recovery treatment. I was a perfectionist and a drama queen. But they’re more character flaws, aren’t they?
Well, I don’t think I had/have any “emotional baggage” per se, or that everyone else does/has to. It is complex (and simple at the same time, I suppose), but for me, bulimia began during/after some time in recovery from anorexia, and at some point bingeing/purging just evolved into “the thing I do when I feel X/Y/Z.” (Usually: uncertainty, “not okay”, certain types of anxiety, low mood, disappointment in myself, etc.) It wasn’t any baggage (in my case) or some kind of emotions that were not dealt with (that sounds too Freudian for my liking, haha) but just maladaptive way of trying to regulate emotions. (Obviously also in the context of recovering from anorexia, still being somewhat restrictive with food, etc.)
I also wouldn’t say “perfectionism” and “drama queen” are character flaws! That depends on who you ask!
Also, there’s the torment of eating nothing for three or more days, which I did quite regularly. That is likely to drive a person to binge. …
This is really interesting, especially your conclusion about recovery being characterised by ambivalence. I’ve found that ambivalence seems to increase as time goes on, even though I’m functionally more and more improved. I’m interested to see the rest of the survey responses.
I think I meant to say that the recovery process is characterized by ambivalence, at least at some point. Certainly it fluctuates for most people (from very motivated, to unmotivated, and to ambivalent), I think? I am not at all surprised to hear you say that you’ve found it increase as your health/state is improving: I think that’s the case for most people, to be honest. It is kind of the double-edged sword with being sick and functional: There’s no push, no urgency to get better, no driving force. Or at least, the driving force has decreased — and decreases as you get closer and closer to the goal. I certainly found it true in my case, and I’ve talked to a lot of people (recently, actually!) about that very thing. I don’t know if it is good or bad; I think it depends on the situation and what perspective you are viewing it from.
One thing that really stood out and resonated with me in these responses is the extent to which being “high functioning” can be a double-edged sword. Being able to do what you want, and get by while quite sick can and has kept me from being motivated to recover at times. At the same time, eventually, having been able to (for the most part) maintained friendships, furthered my education and career throughout the years I have struggled with anorexia is now, I think, providing motivation to recover, because I see what life CAN be and I want that. I don’t just want to be “high functioning”, I want to actually LIVE and ENJOY life. So, I think while for a time, being able to function well with the disorder can perpetuate it, eventually having been able to continue to engage in life while struggling with the disorder can be a motivation to get well. My life is too full for me to continue to starve myself.