Recovery from an eating disorder is still possible. Even after all these years.

Against all odds

She's not someone you'd expect to recovery. Decades living with an eating disorder, endless barriers to jump over.  But seeing the progress that my patient (I'll refer to as) Amy has made should provide hope to anyone who has long given up. Yes, recovery is possible. Not easy. Not quick. But possible. Please read through the end and share your thoughts with "Amy". 

In the last 50+ years, I cannot remember a time in which I was satisfied (even slightly) with my body.  As a matter of fact, I view it as disgusting and embarrassing.  Even at my sickest state, I was convinced I was the fattest one in the room.   In this point of my recovery, I deem it important to reflect on how far I’ve come.  Below is my life’s journey thus far.

It is uncertain to me why I have suffered from Eating Disorders for most of my life.   However, in my past, could lay the meaning for all of this.  My mom had EDs always.  My ED could be attributed to nature vs. nurture.  In other words, it was perhaps either a learned behavior or maybe it was genetically passed down to me.   It seemed important to my Mom that I should watch what I eat.  She was always suggesting that I should not have seconds at meals.  I remember my Dad taking us for ice cream when we were kids.  My mom would always get a diet soda so it seemed appropriate to me to follow her lead. When I was 8 years old I experienced a terrible trauma.  Even all these years later, I cannot reveal the details of this trauma.   All of these childhood memories are what, I believe, set the course for this ever-lasting emotional rollercoaster that is my life.

As I was preparing to graduate from high school, my ED became quite severe.  I was passing out on a daily basis.  My pediatrician told me that I was being “ridiculous”; I did not need to lose any weight and to just “eat more”.  It was at this time that I realized that if I ate just enough, it would not raise suspicions. It was also in my teen years that I started to self-harm.  I did this to the point of being certain it would kill me.  I didn’t care.  These behaviors even led into my adult life.

At the age of 23, I was married and eventually had 3 kids.  During this time, my behaviors somewhat subsided until my husband began drinking heavily.  This not only effected him, but it also effected me and our children.  What at first seemed like a “silver lining” was actually the calm before the storm.  I became engrossed in my ED once again.  All my behaviors emerged all at once.  I was unable to sit with my family at the kitchen table during dinners.  I would make my own “safe” foods and eat at the counter while doing chores while I ate.  Even as an adult, I was still following my Mom’s lead.

After 20+ years of marriage I finally somehow found the strength to separate from my husband.  As I began trying to pay our bills, it quickly became apparent that there was no money left in our joint accounts.  I had to begin again.  This stress increased the frequency of my ED behaviors.  I became quite sick again.  I refused to admit it.  My foggy brain kept me from the reality of my life.  Even when close friends and family claimed I needed help, I thought they were just trying to make me fat.  Kathy, my therapist, challenged me to attend an intake interview at an ED treatment center.  She even called them for me.  I went in order to prove my point – I do not need help!

Getting help--no quick fix

What I thought would be one hour out of my day, turned out to be four years of my life.  Since that day, I have been in residential 3 times, and PHP and IOP too many times to count.  After each stay, I felt like a failure.  I’m not sure if I felt this way because I couldn’t be cured from my ED or because I was letting my treatment team talk me into eating. Insurance was not a great help.  They would only approve 2 weeks max in resi for my first 2 stays. I would be discharged from residential and immediately make excuses for using just 1 or 2 behaviors.  “That’s better than all of them”, I would assure myself.  My outpatient treatment team were instrumental in convincing my insurance company to extend my treatment in my last resi stay to 6 weeks.  Upon discharge, I thought I was cured.  I felt great for a few weeks before the ED got into my head again.  I relapsed.

I overcame that relapse thanks to the support of my RD, Lori and the rest of my treatment team.  She could see through the ED lies.  She knew I was relapsing even before I did.  Yet I've turned it and I’ve had many accomplishments in the last few months:

I dug myself out of financial debt.

I eat my meal plan consistently

I’ve attempted to move away from “safe” foods.

I haven’t used ED behaviors in 3 weeks.

I’ve enrolled myself into a 16-week DBT group.

These are all accomplishments that I would not have believed possible even 3 months ago.  I will strive to add to this list within the next 3 months.  I feel more peace and contentment in my life now than I have ever before.

The journey isn't over. But recovery is in site

Even though I reached so many incredible accomplishments, that is only the beginning of the end of my recovery. Today, there a different challenges to face. Being closer to recovery than ever before, I am now terrified of losing my ED.  It’s been my stress control, my safety net, my numbing against my life.  How do I let go of it when I may need it again?  What if I can’t get it back? Even though I know that it is in my best interest to continue to move forward with my recovery, part of me does not want to let go of my ED forever.   My goal going forward will be to use my “wise” mind to conquer these thoughts.  I want to be able to look in the mirror and think, “I am who I am; I’ve done the best I could, given my circumstances, and I am proud of what I’ve accomplished”.  I WILL continue to fight and learn to love myself, whoever that may be, “Against All Odds”

Here's another recovery story you might like:

http://dropitandeat.blogspot.com/2014/03/theres-no-gift-like-recovery-and.html

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.

I Had No Idea! Secrets About Eating Disorders

We can't always tell just by looking at someone 
that something isn't right.

There are no excuses for perpetuating misinformation about eating disorders. No justification exists for minimizing eating disorders based on BMI, for generalizing them by age or gender, or for continuing to blame parents for causing them. While the news media may sensationalize and sometimes distort research, social media can fight back to correct misinformation. So read on, and please share!

Today starts a week devoted to spreading the word about eating disorders with the theme “I had no idea!” Thank you NEDA, the National Eating Disorder Association and promoter of Eating Disorder Awareness Week, for inspiring this post.

Random thoughts come to mind when I consider what this theme means to me—and what it might mean to you.  My beliefs and knowledge about eating disorders have evolved over many years, to which I credit the Academy for Eating Disorder listserve, the FBT researchers and Laura Collins and FEAST, blogs like Carrie Arnold’s  and my many, many awesome patients and colleagues. 

What I’ve learned over the decades

Got your period? This doesn’t minimize your diagnosis of anorexia, if you meet the other criteria. And resuming menses after being without a period does not mean you have fully recovered. No, the work is not yet done.

Obese and anorexic? How can that be? You do not need to be below the BMI chart to meet criteria for anorexia. Really. Unfortunately, you are the ones who most often fall through the cracks. And you are continually subjected to messages that your weight is the issue. I am truly sorry for this. Health care professionals need to be educated! 

Eating disorders are quite common in males, straight and gay. Males get anorexia, and struggle with bulimia and binge eating. Their focus on bulking up their muscle mass may seem like a cultural norm, but may be the sign of an underlying disorder. Check out Roberto Olivardia’s work on men and eating disorders.

Time to look at eating disorders a bit differently.

Over 30 or 40 and struggling with an eating disorder? You are not alone! Eating disorders are not just a teen thing. You can be living with an eating disorder at any age—an eating disorder that never resolved, one that reared it’s head again after previously recovering, or one that developed later in adulthood. Check out Dr. Cynthia Bulik’s work on this population. 

Parents don’t cause eating disorders. And parents shouldn’t be sidelined in the treatment of kids with eating disorders. They play an integral part in recovery, particularly when your poorly nourished brain fights you on eating. Learn more about how families can help from FEAST, from scholarly articles and other from resources.

Barbie didn’t cause your eating disorder. Sure, the media may impact how we see ourselves but eating disorders are much more complicated, involving genetic predisposition, environmental triggers and support for maintaining the disorder. We don’t know exactly what causes eating disorders, but it won’t be long before we understand the genetics. See what research is underway and how you can help the study of eating disorders and genetics.  

People don’t plan to have an eating disorder. It’s not a decision sufferers made. Individuals with anorexia, bulimia and Binge Eating Disorder aren’t simply refusing to change when they maintain their behaviors. Change is complicated—by fear, anxiety, and hard wiring of behaviors. My patient shares some wisdom we can all learn from here. 

It’s not so easy to just do it as this post describes. In spite of my many years of working with clients with eating disorders, I don’t think I fully grasped how many obstacles to change there can be—that is until Cate. Writing Food to Eat and feeling I was living her struggle with her was beyond enlightening; it heightened my sensitivity to things I had taken for granted—the planning to eat, shopping, cooking, and ultimately eating. 

Let's work to not live by diet rules and restriction, 
but to trust what our bodies both need and enjoy.

Recovery is possible, even for those who have lived with an eating disorder for many decades. But it has to start with the belief that change is possible. Connect with a treatment team-a therapist, an eating disorder dietitian and an MD, and reach out to friends and family for support. I now know that it is not too late to.

Want to help others recover? Share this post to increase awareness of eating disorders, and check out this awesome new eating disorder support by Cate. 

Oh, and please tell me what you think! Thanks for reading.