What doctors must know about eating disorders.

I want your input. I need to hear your voices. For EDAW 2015, I have volunteered to present to two medical residency programs—one in Boston, MA and one in Providence, RI on what doctors need to know about eating disorders.  I've incorporated recommendations from twitter responders and from Aspire, but I welcome more input. Here's what I have to share with new doctors so far:

• Avoid the ‘Don’t ask, don’t tell’ approach. Patients rarely volunteer behaviors they feel ashamed of—bingeing, purging, diet pill and laxative abuse.  So providers need to ask. Nicely. Casually. Non-judgmentally. Include basic ED screening questions at routine visits.

• Early action is not just for college admissions. Eating disorders are best identified early and treated promptly. We wouldn’t simply wait it out to see if blood sugars simply turn around in a patient with type 1 diabetes. Take eating disorders as seriously as you would cancer, or

  

  The time is now for improving medical management
  of eating disorders.

  diabetes, or heart disease. Because like these medical conditions, they cause physical damage, and impact emotional wellbeing. And did I mention that left untreated they can be fatal?
• Relying on size is a seismic mistake. People of all sizes suffer from eating disorders. And because eating disorders in those of “normal” weight are often missed, they may be more chronic and challenging to overcome. Patients with anorexia can have high BMIs; they severely restrict their intake, are ruled by food rules and fear weight gain; their restriction impacts their ability to function, their mood, their blood pressure, body temperature, blood counts and thyroid level, fertility, bone density, and GI function.
• ED sufferers want help. People with eating disorders ultimately want to be free of their disorder. They are not just being difficult. They may also be struggling with depression, anxiety and OCD making recovery more challenging. They are
  
  suffering with their symptoms making day-to-day life unbearable. In fact, the risk of suicide is higher in those living with eating disorders and is a major cause of death in this population.
• Be careful what you ask for. Before recommending that your ‘overweight’ patients lose weight, do some assessing.  Has their weight or weight percentile been normal for them? What behaviors might be better addressed versus focusing on their weight? Diets can be the tipping point, precipitating an eating disorder. Striving to achieve and maintain a lower than usual weight contributes to maintenance of eating disorders.

  

  You can't simply tell by appearance that
  someone is suffering.

• Guys (yes even straight guys) get eating disorders. Seemingly healthy, fit, guys, and overweight boys and men live with eating disorders. Like girls and women, they may restrict and be fearful of gaining, binge eat, purge, and compulsively over exercise. EDs have no gender limits.
• Eating disorders may start in preadolescence, or at age 20, or in the 40s.  Eating disorders don’t expire when kids reach adulthood, or when adults mature. Individuals with EDs may first present for care after decades living with their ED or may have a late adult onset during a transition period in late adult hood.
• Read between the lines and ask the right questions. Please don’t praise a patient’s weight loss. Would you say great job if they lost due to cancer? Do focus on reinforcing healthy actions, not numbers. Rather, ask:
•  "What kinds of changes have you made?" 
• "How do you feel?" 
• "What percentage of your thoughts are spent thinking about food and eating?"
• "How’s your energy level?" 
• "How are you managing with these changes?"And note that healthy eaters are not always so healthy. Ask why your patient became a vegetarian/vegan. Why are they following a gluten-free or low carb diet?

Families play a critical role in
supporting a child's recovery.

• Parents are necessary supports for recovery. Overwhelmingly, parents need to be brought in to assist recovery. And the only thing we can blame parents for when it comes to eating disorders is their genes. 
• Eating disorders are serious mental health conditions. They have genetic, environmental and nutritional underpinnings. They don’t just “run their course” or become “out grown”. They require treatment by experienced providers. ASAP. Waiting may be lethal.
• If you don’t know, please ask! Check out AEDs medical resource guide and this. Seek out providers to collaborate with who are part of national or regional eating disorder organizations like AED, NEDA, iaedp and MEDA.

Please share this with your medical providers. And with your friends. And twitter followers. And with your Facebook friends.

Eating disorders require education and a break from the commonly help practices and beliefs. And you can help make it happen.

Thanks again to those who have already shared their ideas that were incorporated into this post.

Someone You Care About has an Eating Disorder – How can you help?

There is no one better suited to write this post than the person struggling with an eating disorder. No, it's not my post; it's a heartfelt, insightful guide from someone really in the know about what those in recovery desperately need from their caring community. This post didn't come easily. It was 'Thursday's Patient's suggestion that it be written, and my invitation for her to write it. And it took guts to put it out there, to stand naked, so to speak, and shout out that help is needed.

Read it and respond--on this post and to your loved ones. Email, FB, Twitter--share it however you'd like. But do share it. Because the more you express your needs, the more you can be supported; the more you withhold, the safer your eating disorder is, maintaining the status quo. Enjoy!

It's going to take more than this to recover. But it's
certainly a start.

Someone you care about has an eating disorder, maybe she is anorexic or bulimic. Maybe she abuses or misuses laxatives, diet pills, diuretics or compulsively exercises. Maybe he eats when he is with you but you are not sure if he eats when he is left to his own devices. 

I know how difficult, painful, and maddening it can be to watch someone you love engage in such unhealthy behavior. I also know that you are aware of and afraid of the risks, both to their health and survival as well as to their emotional well-being. I know how you feel, because there are people in my life, whom I love, who suffer from bulimia, anorexia or ED-NOS (eating disorder – not otherwise specified). They exercise for hours a day, restrict their intake, and/or purge if they perceive that they have 'overeaten'. I get mad, frustrated, scared and sad. And the trickiest part is that I behave the same way - because I also have an eating disorder. And I know what it is like to desperately need support from my loved ones, the people who are mad, scared and sad because of my disease. See the conundrum? I can’t make you understand what having an eating disorder is like but as someone who has struggled with this disease for over twenty years I can tell you how difficult it can be to ask those closest to me for help when I am struggling. 

It's an Uphill Climb 

The door to change may be open, but you just might need support
breaking out.

Eating disorder recovery is a series of ups and downs. We climb the mountain, trip on a stick, land on our asses and sometimes slide all the way back to the bottom (and the slide down hurts). Sometimes we can pull ourselves up, dust ourselves off, tighten our shoelaces and gain elevation back up the mountain. We do this with the help of our providers. These are the people that really do keep us alive and accountable - and they hold the hope for us when we feel like even just standing up (never mind climbing) is impossible. We see them often; as Lori always says, “recovery is a full time job”. Weekly, I see Lori (my trusted rock-star dietician), I see my therapist, and a clinical hypnotherapist to work on issues that contribute to my eating disorder. When things are not going as well as my team would like I may also have to throw in a visit to the medical doctor and a second appointment with Lori. I spend hours and what feels like a million dollars a week. 

Sometimes, despite this high level of support, I'm still a dusty mess sitting at the bottom of the mountain. There are times when we need more. Sometimes that means a higher level of care, and other times it means a higher level of support from the people in our lives.

Needing Support – Not Wanting Support 

"I'm so ashamed asking for help! If only you could read the signs that
I'm struggling."

Have you ever had to ask someone to help you move a heavy piece of furniture? Do you remember feeling like you should be able to manage it on your own? Maybe you tried. You pushed with your entire upper body and it moved a smidgen. You decide you will make more progress if you push at an angle - you shift to the right, you shift to the left. You're sweating. You sit down, put your feet against the wood, bend your knees and push with the strength of your lower body. But all that happens is your own bottom slips out from under you. The furniture has not moved. You have two choices, leave it in the middle of the room or ask for help. 

For me, asking for help during a relapse or a major slip is painful, humiliating, and exposing. I feel like I am admitting failure and weakness (AGAIN). My pride has shriveled. I feel like a source of unending concern, burdensome and unworthy. My friends/family are supposed to love me no matter what though – and my treatment team says I have to call in the troops. So I reach out. For those of you on the receiving end of this plea for support – you might feel lost. You are afraid to say the wrong thing, you want to say the right thing, and you don’t know which is which.

Please know that the eating disorder (often referred to as 'ed') always tries to boss us around. He is an uninvited guest. We try to ignore him and tell ourselves that he lies to us and is not really on our side, but sometimes we might need you to remind us. Even as I write this I am forced to edit out my eating disorder voice. The thing is, he knows that if you follow some of these suggestions, then I won’t be so aligned with him and may not follow through with his demands. My eating disorder is threatened by your knowledge – and if recovery is my ultimate goal then this is a very good thing.

The suggestions below assume that your loved one is asking for support and is motivated to move toward recovery. If this is not the case then it may be that your only choice is to encourage your friend that more intensive treatment is warranted.

  

   1. Think with your heart. It sounds strange to think with your heart; don’t we feel with our heart and think with our brains? But your heart is where your compassion lives and the friend who sits before you, having just revealed what feels like a gaping wound, needs compassion, or she's going to bleed out.

2. Depending on what point in recovery your loved is in, the grocery store can be a major source of anxiety (think being in a room filled with your most feared animal!). In my early recovery days, having a friend with me while grocery shopping was the only way I could make it up and down every aisle and to the register. With someone there I also couldn't get caught in the trap of studying nutrition labels - which could not only take up hours but could lead to me shutting down and walking out of the store without any food.

3. Cook with your friend or prep with your friend, or even just sit nearby while s/he organizes and cooks meals for the week. Your presence is incredibly helpful. A social distraction is always a good way to help get through a stressful situation.

4. Plan for meals together and push through excuses - ed hates this. Your company and the structure you provide just by being there goes a long way. When I left residential treatment my friends and family were ready to have dinner that night and breakfast the next day. They didn't smother me and it wasn't every meal (although some do need this some of the time), but it was consistent support. I was transitioning from residential to day treatment and it was the weekend, we all knew I had to get in every meal and every snack between Friday and Monday morning when I would return to the day program. I was so grateful for their help.

We need support, but we need to move from our complacency!

   5. Do not ignore signs of slipping! I know this puts you in a precarious and uncomfortable place and I am sorry for that – but for me, the longer I feel like I am “getting away” with engaging in eating disorder behavior the worse things get and the louder my eating disorder's voice becomes (“You're fine, see, no one even noticed that you skipped lunch, lost weight, went running, threw away your snack, spilled out your juice”). So, call us out on it, gently but confidently.

6. Ask questions without assumption. I know you don't trust ed, and you shouldn't; but remember that your loved one is in there, too. So ask, instead of accusing (“Is it ok with your treatment team that you joined the gym, went to yoga, walk every morning, eat diet food, etc.”). Asking helps us to feel safe enough to tell you the truth. We don't want to lie to you, but even more we don't want to disappoint you.

7. Keep it Simple Sweetie (my therapist says it all the time) When s/he asks for support don't complicate the discussion. She says, “I'm struggling, I need your support”. You say, “thank you for telling me. Of course I am here for you”. Use the voice that says you care, not the one that says “AGAIN?!” Maybe you are feeling that, but let that be your’s, she can't hold that for you at this moment. Ask, “How can I help?”.

8. Know that your friend is not asking (at least most aren’t) for you to be her therapist, her dietician or her mom. She is asking for your love, patience and company.

9. Check in – for me this sounds like, “How is the meal plan going”, “Are you managing to resist the urge to exercise?” or “How was your appointment with Lori?” or “Does she feel like you are ­­­­headed in the right direction?” or “How is your team feeling about where you are at?”- those last two are really safe because they put the ownership on the provider's opinion rather than your friend – who, let's face it, you don’t always trust. Insert sad face here.

10. Don’t assume that this go at recovery will look the same as the last. Remember that each step toward recovery is different than the one made three years ago, a month ago, or even last week. There are times that we want it so badly but truly, despite our best efforts cannot get out of our own way. Sometimes, we just need someone to hoist us up off our butts, hand us a walking stick and hike beside us as we start back up the mountain.

It's easier to get down when you have some support
and accountability.

11. Make sure we know we are not alone. Having an eating disorder is very isolating - it’s part of the trick of the disease. Recovery can feel equally lonely without the proper support. If you notice that your friend is becoming more isolated please reach out, their eating disorder won't let them reach out to you. Say, “I miss having lunch with you,” or “I noticed I don't hear from you about having dinner together – can we make a plan?” or “Can we talk about how I can help you get back on track by us eating together?” Please don't take it personally (hard, I know) – we want to be with you and miss you, but ed doesn't like when you're around – he knows you’re stiff competition.

12. Do not criticize, blame, or yell. Don't use “you” statements: “You just have to eat,” or “You are acting so stupid”. Do use “I” statements: “I'm afraid the next time you purge you could die”. “I feel like your team should know you started running again” or “I'm worried about you, I’ve noticed you've been eating less”, “I'm worried about how much you’ve been going to the gym”.

13. When all else fails call your mother! In all seriousness, when more intensive treatment is not on the table for your loved one (no matter what the reason) suggest to him/her that they stay with you for a few days (or vice versa if logistics are not a hindrance). If that won't work suggest that s/he stay with family until they are back on their feet. My mom and ed really don't like each other; as a result when she is with me skipping a meal is never an option as I cannot bear being in conflict with her. So, if I need a 'reboot' she will come stay for a couple of days - Lori always knows that when mom's here no meals are skipped or skimped!! 

There are so many 'do's & don'ts' in supporting eating disorder recovery - and just like everything else, they vary from person to person. When in doubt why not just ask your friend how you're doing? Ask him/her if she is finding any of your conversations triggering or unsupportive. Allowing for this openness not only supports her recovery but nurtures your friendship. It's a win/win, right? Writing this forced me to remind myself how important my support people are to my recovery process. I am stubborn...and I often tell my team "I am fine" and "I can do it on my own; no need to involve anyone else". And while sometimes this might be true - everything is easier and more enjoyable with a bit of help and support. 

So, as uncomfortable as this all can be, reach out to your friend/loved one and support his or her journey to a better life.  

It is my hope that this post has given you some hints on how to do just that. Lastly, if you are suffering with an eating disorder, remember that you are not alone. Reach out to someone who cares about your well-being, show them this post, their support might be just what you need to get to the top of the mountain.

Thanks for reading,

“Thursday’s Patient”

Lessons About Eating Disorders

What I Learned at the AED Meeting

I’ve exceeded my 1 week limit between posts, but I’ve got a really good excuse—I’ve spent the past 4 days at the Academy of Eating Disorders (AED) Annual Conference. So I thought I’d share some personal and hopefully meaningful observations about eating, recovery, and miscellaneous thoughts:

• Day one, 4 hours of workshop, and what did they serve at the refreshment break? Coffee, tea and water. Period. And I wanted calories. Food. I was hungry. Half a day learning about a treatment for anorexia and I couldn’t find anything to eat! But it only got better from there—really.



One of several courses eaten at Barley Swine

• I spent a large percentage of my 24 hours each day doing 2 things—learning about eating disorders and planning and arranging to eat—where to go, whom to go with, and what to order, to name a few. And I must say, Austin Texas has some fabulous food! My top picks?  Barley Swine and La Condesa—simply divine!

• Another evening we were 8—two in recovery from anorexia with 3 RDs, 2 therapists and a mom/eating disorder advocate—all eating out together. Can you even imagine? From my perspective it was fabulous. How about a round of applause for those recovering, brave enough to endure such a dinner?
• People appeared better in person than they had on the web. No, I’m not speaking of their physical attributes. But in person, their energy and warmth radiated, adding a whole level of beauty that truly got missed on line. Thoughts were shared and clarified without misunderstanding—it sure helps when you have more than 140 characters to explain yourself!

• Two of the diners are bloggers that I had a somewhat rough start with in the virtual world. Carrie and I, as I recall it, had long ago debated the implications of viewing eating disorders through the lens of biology, much as a conference panel debated labeling eating disorders as brain disorders. While Laura helped shake up my thinking on Family Based Treatment, yet supported my perspective about the important role for dietitians, typically omitted from this therapy.

Carrie, Cate and I before dinner.
(We didn't look any different after dinner, though!)

• Conflict leads to learning and change. If we all stuck with our same ways of doing things we would never grow and develop. We would perhaps feel safe, but would truly stifle our potential, our recovery even.
• Cate and I met for the first time, in spite of feeling I have known her forever. We met through this blog and we have inspired each other to change as well. And you’ll soon hear details about our upcoming book!

Dessert shared with another RD

Meaningful messages from the AED meeting

Connection

Connection helps recovery. A family member, treatment provider, friend, an internet-mentor—even one strong connection can make a difference. And involving your partner shows great promise, based on the research by Cynthia Bulik, PhD and Donald Baucom, PhD. So if you haven’t begun to share with your significant other, or no one knows your struggle, perhaps it’s time to change that.

Hope

“You’re the first person who ever told me I can recover”, I’ve been told far too many times. It is unfortunate. Recovery happens (a bumper sticker, perhaps?), but it doesn’t occur passively. It certainly takes work, your hard work, and a great deal of time. And there are slips, which you must prepare yourself for. Because slips happen (ok, another bumper sticker?) I hope those of you outside the states get the reference to a US bumper sticker—Shit Happens—it would be much funnier if you did!

So if your provider tells you that you can’t recover, then it’s time to find a new provider.

Blame

Blame is useless. Your mother didn’t cause your eating disorder, nor did your ex-boyfriend. Sure, environment can play a role in the development of eating disorders (just as perhaps your genetic predisposition and your personality type may have contributed). But it is most ineffective to focus on “why did I get this condition” or to blame yourself asking “what’s wrong with me, why can’t I change?” We all want answers, but the truth is, what we really need are solutions. And blame is clearly an obstacle to getting there.

Eating disorders are serious

I liked Laura (Collins) Lester-Mensch’s suggestion that we refer to eating disorders as treatable brain disorders. Sounds so serious, no? Even a bit scary—and rightfully so. Eating disorders need to be taken seriously. One in 10 people die from their eating disorder. And delaying treatment only makes the challenge greater for recovery. While we don’t know whether the brain is involved from the start of the eating disorder or as a result of the eating disorder, here’s what remains—the brain is involved, and nourishing it aids in recovery of the disordered thoughts, mood changes and of course, the physical consequences. The brain is not static—it is flexible, plastic, and changeable.

Perhaps viewing eating disorders as treatable brain disorders will allow us to have hope, remove the blame, and inspire us to connect with others without shame to support recovery.

As always, I care to hear your thoughts and reactions to these posts.