Spouses, partners, parents of loved ones with eating disorders--I need you to keep reading. Really.

You may have no idea how they're suffering. Your wife, or mother, or partner or son. It's about shame. And fear. That's why they can't tell you. That's why it's so hard for her to ask for help. I'm not placing blame, but I'm asking you to start to listen like you never have before. Because it's hard for those living with anorexia, bulimia and binge eating disorder to say what needs to be said.

Don't be fooled by his size or his weight. People with eating disorders come in all sizes. And don't be fooled by how well she had been doing. Slips happen. That's normal. But recovery requires acknowledgement that things are amiss, and that support is available. Right there. In person. Not just virtually through this blog, or a virtual support group or a friend across the world.

Yes, they need to know that you are there for them, unconditionally. Even if you really don't understand. Even though you wish they'd just 'get over it'. Struggling with an eating disorder is something they simply did not choose.

She may not discuss it with you, seeming as if all is well. And he may deny that he's restricting or over exercising. Besides. It's so much easier to see what we'd like to see.

So if you suspect that there's something not quite right, please start a discussion. And use open ended questions, ones that can't be dead-ended with a simple yes or no response.

You just might have your blinders on to
what's really going on--right before your eyes.

Do you know how trapped she's feeling?
Like there's no way out of her misery?

Sometimes we're a bit too close to the situation to
see the whole picture.

All about the numbers.

If you share my frustration please share this post with those that need to see it.

Dear Insurance Company,

I wish you could see what I see. I wish you could know how much work it requires to motivate an adult living with an eating disorder to trust enough to agree to enter a program.

Everything is against their entering treatment—taking time off from work if their job will even allow it, getting coverage for their kids, telling people they know when their eating disorder is often their own secret, and enduring the shame of acknowledging that they are actually struggling with this disease—the shame of feeling that they ought to be over this by now. And the shame that comes with not fitting into society’s skewed perspective of what someone with an eating disorder looks like—because even those of normal weight and BMI can live silently with an eating disorder.

Image what it’s like to then have your patient dumped from program. Sound harsh? Well that’s how it feels, both to them and to us as their providers. A mere 2 weeks in a residential program (following years living with their disorder) and they’re required to step down, told they don’t need to stay there any longer, that it will no longer be covered.  And the patient? She is not happy at all. That very reluctant patient is finally finding her voice and stating loud and clear that she desperately needs to remain there. Her ED thoughts are so loud that the controlled environment of resi is the only thing that is resulting in the positive outcomes observed at program. So she is discharged because she has done well.

The premature move to partial day program, PHP sets her up for failure. And because her behaviors return, she is again discharged. Yes, now released because she’s not doing well enough, without a plan to move her to the more appropriate higher level of care. Can you see the absurdity?

Some numbers matter

We certainly do need to look at numbers—but not necessarily the ones that insurers like you are assessing. Weight may tell less than most other measures. Believe it or not, a weight may be completely in the normal BMI range (or even high) and an individual may be struggling with an eating disorder.  This is anything but rare, I’ll tell you. And weight may change little as eating increases significantly as metabolic rate increases in patients with anorexia. Patterns of restrictive eating followed by binging and even purging may have little impact on weight, or may support weight gain. So focusing on this number is truly misdirected.

These numbers matter

How about the EDE-Q score which assesses eating behaviors and disordered thoughts? It’s a quantitative test to measure change in recovery. Pulse, particularly lying, sitting and standing—that’s a number worth assessing. And self- reported number of skipped meals? Or frequency of purges? Or binges? Or number of hours or compulsive exercise? And of course there’s caloric intake relative to need. These are numbers that may tell you something about a patient. These numbers are worth counting.

I realize there are not unlimited funds for care. But perhaps listening to the professionals who can really assess their eating disorder patients—aside from relying on simple weight and BMI—might save you more money in the long run. You’ll collect no premiums from our patients who lose their eating disorder battle.

Don't wait for an earthquake to shake you into action.

I was talking to a guy from San Francisco this week, and the subject turned to earthquakes. This long-time SF resident and survivor of the big quake of 1989 offered some very practical advice for me to share with my son, a San Francisco newbie, fortunately naïve about the seriousness of going through an earthquake. His focus was not on what to do during the crisis—although that advice is critical as well—but rather what to do before hand. How to be prepared for this challenging situation, because being prepared, as he put it, is the surest way to increase survival.

Imagine that while sitting and discussing such matters my mind moved to you, my dear readers. No, there’s no need to worry about earthquakes for most of you. Rather, the subject of preparedness as a means to ensure survival and minimize damage struck me as most fitting—whether you struggle with an eating disorder or living free of diet rules.

Have a plan, he said. In San Francisco that might mean knowing which are the secure places to hover—the solid doorways and tables to stay under. But before it strikes, he emphasized that it’s critical to have an action plan: to keep cash on hand—because you never know when you’ll need it and ATM machines simply don’t work in these situations. Have a plan for communicating with those you’re close with—because electric doorbells to apartment buildings will fail and telephone lines other than landlines will fail. A transistor radio helps you connect with the world—to reality check what’s going on outside of your own limited space. You’ll need light of course—so batteries and flashlights need to be stashed to access easily.  And of course a supply of non-perishable food as well as water. Decision-making when undernourished will surely be compromised.

Time to come out of hiding and ask for what you need.

You can guess where I’m going with this. Yes, the analogy applies to you who are metaphorically on no greater solid ground. Communication is key to survival, and planning for opening these channels is critical. Can you tell your partner you’re struggling? Can you ask for help shopping and cooking to ensure your health and nourishment? Can you simply say “I need a place to eat dinner tonight?” Can you ask them to keep the pastries off the counter when you are trying to avoid impulse eating? Can you ask for a referral to a therapist or a behaviorally oriented dietician?

Where’s your transistor radio, so to speak, your exposure to the world outside of your own thoughts? Admittedly the cultural media may not be the most fitting reality check for sane thoughts, for diet-free messages, unfortunately. What I mean is that you need exposure outside of your own disorder thoughts—someone that can ground you when you are limited inside your own space. Were you really happier when you were so much thinner? Did staying on that crazy diet truly improve your quality of life? Your mental health? Or are you using magical thinking like the way we recall old boyfriends/relationships, fantasizing about how awesome it all was--when really it was nothing of the sort? Do you think you’ll restrict just for now and then be able to simply normalize your eating? Think again!

Do you have a grounding place to run to—your doctor, therapist, dietician, perhaps even a higher level of care—if your foundation is shaking? Do you have ready to eat food for when resources are tough to come by? A reserve for when, due to all the stress, your ability to organize and think through what’s best to eat may be impaired?

Where will your light come from when the power goes out? Do you recharge with talk therapy, or maybe yoga or meditation? Do you get spiritual support or guidance from wise friends or loved ones?

You may get no warning before the quake, before the shake up to your healthy behaviors and thoughts. So have a plan. Be prepared.

What steps will you take? Please share—we can all use to hear some ideas!

Read more about slips and relapses:

http://dropitandeat.blogspot.com/2011/08/so-you-really-think-i-can-keep-this-up.html

http://dropitandeat.blogspot.com/2011/08/hope-or-despair-only-you-can-decide-but.html

http://dropitandeat.blogspot.com/2011/11/quick-fix-for-your-struggle-with-eating.html

http://dropitandeat.blogspot.com/2010/12/new-years-resolutions.html

It's your mom's fault? Words and genes: what we can do about eating disorders

It's all your mother's fault.

Really, it's about lack of approval from your dad.

If you're a boy or a man, it must mean you're gay.

If you aren't underweight you certainly don't have anorexia.

As long as you're eating healthy foods, you're okay.

It's simply a choice.

Once you've had it, you'll never truly recover.
It's all about appearance and weight.
You have to be ready to recover.

True statements? Not at all. These commonly held misbeliefs about eating disorders do only harm. They minimize the complexity of eating disorders and the struggle of those suffering with anorexia, bulimia, and binge eating disorder. 

They prejudice everyone from those living with an eating disorder, to providers treating those they may or may not know have eating disorders. 

They lay guilt on parents who may be among the best supports for their kids in recovery, as evidenced by the FBT model. 

They stereotype people based on weight--as if BMI alone determines severity of eating disorders! My normal weight patients who subsist on 400 calories surely know better. As do those of my disordered obese patients who have struggled with size discrimination for most of their lives and are no less free of obsessive thoughts, patterns of severe food restriction and symptoms of starvation. Yes, weight, size and appearance mislead.

And if we wait until someone is "ready" to recover, it just might be too late. Yet just these past weeks I've heard that this was the guidance conveyed by a therapist 'treating' a patient with an eating disorder--"you've got to wait until you're ready" they were foolishly advised; no, undernourished people don't tend to make the wisest and healthiest decisions. That's right up there with the wisdom of the cardiologists who recently minimized the very serious risk of severely restricting intake; suggesting no need for worry because Sara was not actively purging (simply overexercising and restricting) or that Dan's low heart rate must just be a result of being an athlete (a starved one, that is, with a low metabolic rate).

Yes, there is work to be done.

Eating disorders need science, not stigma

Here's yet another brilliant idea from Cate Sangster (the first I'm familiar with is her suggestion for an eating disorder recovery cookbook, which we created to great acclaim--food to eat). This time, in recovery, Cate puts her social media savvy and creative thinking to great use with this ice bucket alternative to help us get answers about eating disorders. Like Cate, I support Dr. Cynthia Bulik's move to create a genetic database to better understand eating disorders, and the organization, Charlotte's Helix which was created to help make it happen. In the US, check out this link to ANGI to donate. Please check out the resources on this site as well, to arm you with correct information about eating disorders.

"Learn From Genes, Not Jeans, About Eating Disorders."

I have followed Cate's lead with my educating arm (pic on right), and encourage you all to do the same--and to donate $20 to Charlotte's Helix or ANGI or other worthy eating disorder organizations. Share your pics  on Twitter, Pinterest and Facebook, too! 

Do you ASPIRE to recover from your eating disorder?

Is your eating disorder your own little secret? Do you hesitate to confide in others, fearing they just wouldn't get it? Do you wish you had support from someone knowledgable about the struggle to recover, yet safe to share with?

Introducing the desperately needed ASPIRE, created by Cate Sangster, who knows a lot about these struggles, as you'll read. We connected through this blog as she embarked on her journey to recover, created a book together and are now dear friends. So read on and then visit ASPIRE!

"Ask someone off the street about eating disorders and they’ll probably tell you about skinny young girls with too much vanity and not enough substance to their lives. But those of us in the know, understand that the true landscape of eating disorders looks very different to this. 

Firstly we understand that eating disorders are not a lifestyle choice. They are not about vanity or attention seeking, but rather they are a severe mental illness that cannot be cured by guilt and ridicule. 

Secondly eating disorders are not just about anorexia. Bulimia and BED are far more prevalent and equally as devastating to the sufferer, both in terms of mental and physical health. 

And thirdly, we also recognise that this is not an illness that strikes only young girls. Increasingly it is being seen in older women as well as men. However little exists in the way of exclusive treatment centres or support networks for older adults.

ASPIRE, or Adults Supporting Peers In Recovery from Eating Disorders is group I started recently to fill the gap I felt existed for adults with an eating disorder. During my own recovery from anorexia I found that one of the places I felt most at home was on the FEAST facebook page, and Laura’s Soap Box (the FEAST founder’s personal blog) as the people on these sites were not only adults, but also parents like me. However these sites were set up to support carers – the parents of young ED sufferers – so was not really my place. As much as I enjoy Laura’s perspective on things, as well as the information shared by the parents, it is not set up to support sufferers.

This is where ASPIRE fits. Adults need information and support – we are often in the treacherous position of being in charge of our own recovery, as well as, in some cases, needing to raise a family at the same time. We have unique problems, but also unique skills and insights that we can use to help each other through the minefield of recovery. Being in charge of our own recovery means we have to make the decision to attend appointments, make and eat appropriate meals, take medication, hold down jobs, pay bills etc, all while our eating disorder is in control of our minds. Not impossible, but very difficult, especially when you are not accountable to anyone but yourself (and your eating disorder).

So where can you find ASPIRE?

-        blog – adult recovery tips and answers to questions from readers

-        facebookgroup - *new* a space for members to ask questions, reach out for support and provide advice to other adults sufferers

-        twitter – random thoughts on recovery, RTs from other ED tweeters and respected researchers, as well as inspirational quotes to get you through the week

-        pinterest – boards for recovery motivation

How can ASPIRE help me?

•        providing you with information about recent ED research
•        providing you with motivational advice and information
•       providing you with support  - talk to other adults in recovery, ask questions about the things that are on your mind
•        and you can provide others with support when you are in a good place – helping others gives great purpose to our lives. We have a wealth of experience we can use to help others just starting out on the recovery journey.

-          

The value of ASPIRE will increase with every member that joins. The more members we have to support each other and provide advice on the myriad of complicated situations that arise during recovery, the better!! Start by visiting the blog to find out more.

Look forward to meeting you soon."

Cate

http://aspire-network.blogspot.com.au/2014/02/welcome-to-aspire.html

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”