Tuesday, October 1, 2013

Now I Need Some Help!

I know, I know, I’m way overdue for a blog post. The next real post I’ll be putting up this week—I promise.

But first I need your help. I’m working on a presentation entitled From Meal Plans to Weighing Patients: Knowing When and How to Change Direction Based on Patient Readiness for an upcoming eating disorder conference, the Renfrew Center Foundation Conference. And I’d like you to have a voice!

This is for all of you—whether you’ve struggled with Binge Eating Disorder, bulimia or anorexia—or don’t quite meet the criteria for any of these.  (And, family member-readers feel free to add your 2 cents, too). Consider a brief response to the following:

  • What words or actions by a health care professional helped you/your loved one shift toward change?
  • What advice would you like to share with healthcare providers so that they don’t repeat the mistakes they made in your/your loved one’s treatment? Specifically, regarding being weighed, providing nutrition recommendations, setting limits on physical activity, or involving family in treatment.
Thanks in advance for your wisdom.


  1. From the perspective of someone recovering from AN, some of the main things I'd like to tell clinicians (not you, Lori, as I'm fairly sure you don't do any of these things!):
    1. Don't go too slowly/don't ASSUME a patient will be stuck - this can become a self-fulfilling prophecy! In the last couple of years, when I've been REALLY trying to recover, I have been to a number of dietitians and other clinicians who gave me smaller meal plans than I needed/told me I should take food challenges really slowly so as not to 'freak myself out'/told me I should just focus on maintaining for a while (at quite a low weight) - which may have been right for other patients, or for me in an earlier stage of recovery, but for me at that time, I was READY to change, and had said so, and behaved so. So I felt that they were holding me back and would think I wasn't a 'real' anorexic if I pushed myself further than they said, etc. It really messed with my mind and kept me stuck longer than necessary.
    2. Don't predict how much weight a patient is going to restore in a given time (e.g., 'you won't gain more than xx in xx time on this meal plan.') This sets people up for shame and anxiety if they do gain more than that, or (in my case) makes them so scared of gaining more than the 'right' amount that they end up restricting.
    3. Don't set overly low weight targets (e.g., BMI 18.5 - which may be natural for some people, but I'd wager that they're a small minority of adults). I realise that some people need that in order not to freak out, but the point should always be made that the overall aim is to get to a point that's genuinely healthy, not 'minimally healthy'.
    4. Don't make blanket statements about what's healthy, such as 'once your period returns, we'll know you're at a healthy weight.' All patients are different! (My period stopped and returned at a couple of BMI points below the AN I then felt I 'should' stay at that weight...)

    Okay, I don't want this to be an essay, so I'll leave it at that! Your presentation sounds really interesting - I'd love to know what you end up writing.

  2. Things that really helped me:

    o Giving me no option but to eat. This essentially took away the anxiety I experienced if I attempted to eat of my own accord. My motivation to change came after this had been going on for a while and I felt more comfortable with the process.
    o Helping me set goals and consider the changes I’d need to make to achieve these (e.g. getting back to study).
    o Teaching me about nutrition and the basis for their recommendations.
    o Providing hard evidence for why I needed to be at a certain weight and what being at a lower weight was doing to my body (especially my brain and cognitive function).

    Advice for healthcare professionals:

    o INVOLVE THE FAMILY! Parents are often an integral part of the process, even in young adults! There’s no way I could have battled anorexia on my own and they certainly knew something was wrong before I did! The caveat to this is any obviously unhelpful family members/dysfunctional family environment etc.

    o I think not knowing my weight help in the beginning, but there comes a point where I think you need to be able to deal with knowing your weight. There are going to be times in your life where you need to be weighed unexpectedly (e.g. hospital/doctors office) and you need to be OK with potentially seeing a different weight than you expect.

    o Setting limits on physical activity is important. I know for myself I found that I would be ‘OK’ with eating if I knew I could just exercise. This is something that is now a lingering problem, and I find that as soon as I can’t exercise as much as I feel I should, I get overcome by a notion to restrict my intake. I feel like this would be less of an issue if a strict ‘no activity’ policy had been instituted whilst I was recovering (although I’m not sure I would have been quite so compliant had this been the case…).

    o Nutritional recommendations are important, but I think variety is incredibly important and so encouraging previous likes (whilst recognising previous dislikes…this is where parents are helpful) is important. Rather than providing a calorie goal, perhaps an exchange system would work better (less focus on specific numbers…). I think a concrete mealplan is too restrictive (after all, who eats the same thing every single day!). I began with a set mealplan there was no way I would eat anything that wasn’t part of that (and certainly would not eat anything additional, even if I was hungry).

    Sorry for the long post!

  3. The most important thing about my primary care doctor is that she listens to me. She is firm with me, but also wants to know how I feel about the changes she is requesting I make. I think dictating changes without listening to my thoughts and feelings would cause me to rebel against them. My doctor also asks me about my husband and how he is dealing with things. She talks to me like I am a person and we have mutual respect. I honestly believe that if she were not my doctor, I would not be where I am now.

    My therapist is more firm, but also listens to my fears and concerns about recovery steps. I think the combination of my therapist and primary care is the key to my success in recovery.

    I am a 31 year old married woman with a strong desire to recover. What works for me may not work for a 16 year old, but I think listening to the patient is key regardless of age or stage of recovery.

  4. The most helpful thing for me was to keep reminding myself that if I wanted to have a cookie again or any other food item I considered a "treat" I could. I had to stop the mindset of "Oh today I was bad so I might as well have everything possible that I think is bad for me." Once I realized that I could eat whatever I wanted whenever I wanted it helped to ease the anxiety of needing to eat it on a "bad" day.

    In terms of being weighed I think what helped the most was to weigh myself at the beginning of treatment and then weighing myself again a month or two in to see that I can trust myself and eating mindfully with fullness and hunger really works. After I saw that I didn't gain any weight and eventually I actually lost some weight and evened out I was able to trust myself.

    1. When I was a young adolescent (12-16) with Anorexia Nervosa, it was important to me that my psychiatrist treated me with respect and dignity. He spoke to me with reason and wisdom and not like a sick person. He did not judge me or look at me like I was a weirdo. I was a smart girl and he appealed to my 'sense' explaining to me what was happening to my body as I was starving it away--so the conscious part of myself could absorb that information. He weighed me every session (I saw him 3/week) Sometimes I weighed my pockets down with stuff to make weight and I sure he knew. I hated the weigh ins but I think they kept me accountable and kept me out of the hospital because I knew if I dropped below a certain weight I would go into the hospital. What was the turning point for me? My parents took me to visit a hospital and I saw all of the girls hooked up to the ivs and bedridden. When I got home I remember telling myself that I never wanted to go a place like that. It was a slow long road back--and at 43 I still struggle with food--but I never went into the hospital and from that day I started getting better. I guess I was scared straight.

  5. Don't use words like just or only. You 'just' purged twice or you "only" lost a little weight. It diminishes what we are going through. Be honest, patient and kind. We are ashamed enough - please don't add to it. Take every slip seriously as it has to start somewhere. Always always ask the questions we don't want you to ask - laxatives? Purging? Diet pills? Exercise? Calorie counting? Self injury? Weighing? Body checking? As much as we are open with you it can be too hard to volunteer upsetting information. Please don't weigh us at the very end of a session when there is no time for you to put us back together before we don't see you for a week. You are a crucial part of getting us through those days between appointments. If we leave your office in a tailspin its safe to say we cannot patch ourselves up. Validate how hard this is and that you still respect us bc we feel so inept that we barely respect ourselves. Scare us...for real, tell us all the terrible things we are doing to our bodies and when we say you are exaggerating tell us how wrong we are. Please discriminate between us and our eating disorder - it gets lonely when that is all we feel we are. Ask what else is happening. Don't make it all about food in and food out. What is unbearable about the current life situation you're in?

    Please don't be frustrated with us and if you are please consider whether showing us will be helpful or harmful. Believe me, we are frustrated with ourselves -frustrating our team just makes us feel more like failures.

    Words to encourage shifts in thinking...this is hard. I hate all of these but that must mean they are effective - threats of higher levels of care, threats of terminating care (the worst), team discussion - dietician pulling in the therapist or the physician (shows levels of concern), expressions that are not punitive are more effective for me personally - "I'm concerned" "I think you are relapsing" "I think this is more than a slip", "I feel like we are losing your healthy self". Set clear parameters, rules, if/then. Stick to it bc we, unfortunately will test you.

    Talk about us having a better life, feeling more enjoyment and connection. Describe what can feel impossible to us and make sure we hear you when you tell us it is possible. Always always make sure we know that you will hold the hope for us when we cannot hold it for ourselves.
    Sorry so long!

    1. this was all such very good information. Expressing what an ED person needs, as painful as it might be, is very enlightening. It shows the desire to claim and conquer.

  6. continued weight checks with weekly reassurance that I'm "in my range" while continued to break food rules - for longer than probably even the professionals thought I really needed. Knowing that the professionals were, temporarily, taking my ED on and monitoring my weight helped me to make food experiments, losen my rules, and trust my body.

    Also - I credit having a mp and following it straight for years for my recovery. I stopped counting calories by following the same meal plan without substitutions for about 2 years. After a 14 yr. history of intense, non stop calorie counting and calorie rules - eating the same mp without substitutions (a list of 60 meals - with portions - that I rotated daily) is what completely stopped my calorie counting.

    My RDs setting goals with me every week also was a huge help.

    My RD also letting me e-mail her about how I was planning to handle (eat at) difficult situations was helpful.

    1. I liked the above responses so wanted to chime in. Goal setting is really really helpful because it takes an enormous and daunting challenge and makes it less overwhelming and more manageable. Breaking it up into steps helps me feel like I am meeting with success, taking on bigger pieces makes me shut down. Having communication outside of appointments is amazingly helpful, although this has to be handled tediously so as to protect professional boundaries and as a patient that is something that I am chronically anxious about so I like with my team really spells it out for me so I can take the worry off of my plate. When I am increasing my intake I need to know that my RD will consistently monitor my weight bc I do not weigh myself and my eating disorder will definitely tell me that things are happening that might not be.

  7. I think one of the most pivotal things for me was when my therapist (who also has her RD license) told me that the amount of calories I was eating was meant for weight loss not weight maintenance. She also took the time to break down what is truly healthy versus what the diet industry considers healthy (and by diet industry she included magazines, weight watchers, Jillian Michaels, etc). She also pointed out that just because we can survive on a certain number of calories and maintain a low weight does not mean our bodies were designed to be able to do more than just exist at that weight. She also talked through how fatigue and anxiety and depression can be caused by not getting enough energy (calories). She also helped me to move past that just because I was allowed to leave the hospital at a certain weight didn't mean maintaining that weight for the rest of my life was good or healthy.

  8. I was just reading some of your older posts and found something I thought was great that you wrote about re: advice to providers. This is what you said "If your patient isn’t doing well, rest assured that they are as frustrated—even more so, really—than you are. The impact is far greater on them than on you, that’s for certain."
    Other great points you made were about asking open-ended questions, weighing patients with their back to the scale, and keeping your reactions well hidden regarding weight loss or weight gain. All of these intricacies make your job very difficult! I don't envy your position with working with such a tricky population! From an appreciative patient