The difference between you and me.

“How presumptuous”, you must be thinking, “to group all of your readers into one lump sum, overgeneralizing between us and you.”

Well, unless you are a member of my exclusive club, the one-in-750-in-the-US-living-with-Multiple Sclerosis, then I think you'll agree. As I'm sitting here awaiting the chemotherapy treatment to infuse into my veins, I'm painfully aware that I live with a chronic disease, a potentially debilitating one at that. But for now, I'm fortunately unaffected by this progressive neurological condition. 

Perhaps, like you, I'm on borrowed time. Borrowed time? Yes, because neither of us can predict just when the impact our conditions will hit us the worst. Or when the damage from our situation will lead to a fatal consequence.

A depressing shift in perspective from me? Not really. In fact, my intent is to show you just how fortunate you are. And to demonstrate that change is, in fact, in your hands.

I live with a healthy dose of denial. (Ok, so we really may not be all too different from each other.) That said, my denial allows me not to dwell on the ‘what ifs’. What if my condition progresses? What if a symptom hits me suddenly, like temporary blindness or double vision, my presenting symptom? And what if I become unable to work? Or walk? Or cycle and hike? Or leaves me unable to be present and functional? 

In spite of my denial, which I find quite beneficial, I am not denying my need for treatment. The stats are quite unimpressive—treatments don't cure MS, just like meds don't cure an eating disorder. But they might prevent my situation from progressing. Or they might not. MS is an unpredictable disease. And boy do I dislike uncertainty. But doing nothing ensures that nothing good can happen. 

Hmm, maybe I ought to change the title of this post to read "What you and I have in common"?

But here's where we differ. Besides the fact that you might be living with an eating disorder—bulimia, anorexia, binge eating disorder—or you might feel ruled by your rules (compelling you to deny yourself enough food or the pleasure of food)—the differences between us are vast.

Here's the biggest: You can do something to reverse your eating disorder or your disordered eating. You can use the tools of CBT or DBT or FBT to move you along. You can potentially utilize your resources—your friends, your family, a higher level of care, if needed. No, it won't be easy and it's not a quick fix. But these are strategies that can turn your condition around.

You can decide it's time to move on, to prevent your rules from ruling you, and eat enough to nourish your brain to soften those unhealthy voices. You can remove the triggers which result in purging and learn to move on after a slip from less than perfect eating and disordered behavior.

There's evidence that people recover, fully recover, from bulimia, binge eating disorder and anorexia, and that normal eating is a real possibility. Yes, you can take an active role in reversing your condition and prevent your eating disorder or disordered eating from robbing you of the life you so deserve.

I have no such option. Sure, I can choose to focus on the positives from living with such a condition as MS, but let's be real. Living constantly aware that any part of my brain or nerve pathway can be damaged and stop working is hardly something to see the positives in. 

In fairness, living with MS has had its benefits. It has made me much more sensitive to the fact that many individuals who look just fine—and act fine, even—may be harboring a condition that zaps them of their energy and steals their ability to life a full life. Living with MS reminds me that I can never look at someone and assume that they are just fine, when they may be living with a disability like MS or an eating disorder or disordered thoughts. Or depression. Or OCD…

Like those of you living with an eating disorder, we share a genetic predisposition to have the diseases we have—and we are not to blame! And our conditions might have been triggered by something in the environment. Stressing about it may only worsen our fate—high stress and anxiety—while not the cause of either of our conditions—may be obstacles to recovery and wellbeing. 

Based on statistics, I'd have mentally checked out of treatment, believing that chronic disability was my fate. But it's not. Not for me and not for you. 

You can live with some denial to get you through the days, but you still need to take your medicine—your food, your nourishment. And we need to put one food in front of the other and follow the recommendations of those in the know—our treatment team members—for without that commitment we fulfill a self-fulfilling prophecy that recovery can't happen. A positive outlook, and the belief that we can beat the statistics is essential to moving forward and making the most of what we’ve been dealt.

Personally, I cannot simply eat or take a medication to cure my MS. But you can certainly do just that. You can help your brain function fully, by eating enough, all the while improving your quality of life.

You can shift your thinking and ultimately your actions, and make change happen. I am at the mercy of MS research to be successful and find a cure for Multiple Sclerosis.

Neither of us is at fault for our conditions. But you are at fault if you take a back-seat approach to management of your eating disorder. Passively showing up for appointments fails to support recovery and well-being. Yet acting to change your course makes all the difference.

So as you move through the day, ask yourself if you are changing what's in your hands to change to move toward recovery. And if you answer no, then it's time to make a plan for moving forward. Not on Monday, nor on January first, but today.

I'm feeling disconnected and groggy right now. The Benadryl pretreatment has hit with a bang. I know no hunger, for now, and my thinking is compromised. My heart rate is slower than usual, and I have little control over much of anything—thank goodness for spellcheck. I'd be at risk if I dared to check out of here and attempt to drive my car or to exercise. I am compromised. Right now, you and I are truly quite similar. But my state is transitive. Yours can go either way, depending upon your actions.

Do not have pity for me, for I am fortunate enough to function 100% and I am living my life to the fullest. Have compassion for yourself, and may this post inspire you to get your butt in gear and turn your situation around.

Do you believe recovery just isn’t possible, at least, not for you?

Lessons from ICED 2013

I see 30-40 individuals suffering from anorexia, bulimia, binge eating disorder and disordered eating each week. Men and women, preteens through age 70+.  So short breaks and vacations are, of course, quite refreshing.

But last week’s Academy for Eating Disorders Conference, the International Conference on Eating Disorders (ICED) offered anything but relaxation.

Stimulating, inspiring, fascinating and hopeful—even these words do little justice to the conference presentations. I became pumped, and felt validated that the progress I see with my patients is not random. I was sparked by the incredible research demonstrating the progress in the understanding of eating disorders and their treatment. It only confirmed my belief that there’s reason for you, too, to know that recovery is possible.

Let me tell you about a session I was most excited about—Lisa Dawson, a PhD candidate’s research presentation entitled Recovery From Chronic Anorexia Nervosa: The Tipping Point for Change. You don’t have long-standing anorexia? Don’t stop reading. The lessons from this psychologist’s research are inspiring for all.

Dawson decided to select those individuals who recovered from anorexia—and I mean truly recovered—because by looking at this population we can figure out what elements are critical for recovery in anyone living with an eating disorder. They had to be free of anorexia for 7+ years, in an objectively normal weight range, and free of eating disorder behaviors. “You mean such people really exist?” you’re thinking? You bet. And she identified the common elements that contributed to their movement toward and their ultimate full recovery, based on extensive interviews with the participants. Here are some key points she identifies:

There are 4 stages to recovery, which individuals move through in one direction, and for differing amounts of time:

1. unready/unable to change
2. the tipping point of change
3. active pursuit of recovery
4. reflection and rehabilitation

In the first stage, people feel like they didn’t know why they were doing what they were doing (wrt ED behaviors) but felt they just couldn’t stop. They internalized the eating disorder and they perceived treatment as unhelpful. They felt misunderstood and lacked insight. In summary, recovery seemed impossible; they didn’t feel like anything they did made a difference for recovery, they had low motivation and had a sense of helplessness and hopelessness.

Over time, they realized that their eating disorder wasn’t helping them. Those who recovered also started to experience feeling understood. They were able to externalize the eating disorder and over time gained insight into their condition. They became more worn out by their eating disorder as well. Motivation increased. They started to feel that they had the power to change their situation, that they could impact their curse.

More value was placed on life outside their eating disorder. They learned skills to help them cope as they let go of their eating disorder behaviors.

Self-discovery, self-acceptance, and learning to love oneself were components of the maintenance stage.

It was a long, and slow process. But it happened.

So here’s an email I received this week from a patient of mine who, in spite of living with anorexia for more than 25 years, is now in recovery. The timing couldn't have been more fitting for this post:

"I've been continuing to do well with food.  I know I was upset at my last apt with life in general, but that did not affect my eating.  To date, I still have not purged or restricted or exercised.   Can you believe it? And... I don't want to forget to tell you so I'll share now, re: exercise...  I have been taking walks after dinner with either one of the girls or my husband or all (not every night, but several) and it didn't dawn on me til yesterday that I can go on these walks and I haven't:

• thought about how many calories I'm burning
• gone at fast pace to burn more calories
• obsessed over having to walk each and every night/same time/same pace/same path 

Instead, I:

• go on a walk if I feel like it
• enjoy whatever pace I seem to be going at, without thoughts of burning calories
• actually enjoy being present with the people I'm walking with!!! 

I do not fret if I can't make a walk.  I do not keep track of how many nights I've walked. I do not feel it's necessary if I've eaten a larger dinner. The obsession is not there!  Where did it go? I don't feel it, all I feel is the happiness that I'm going on a walk with a very loved family member where we can chat and talk and laugh. 

Huh? When did this happen?! Although it may not seem big, it really didn't hit me until yesterday that these walks are not the same walks as in the past. Not one bit. I am totally present and I completely enjoy them. And I continue to eat. Normally. I think I now know what normal is. At least, my normal. And I never, ever thought I would find "normal". And "normal" to me means:

I can eat when I'm hungry, know when I'm full, eat what I want in moderation... and because of this, I have not gained 30 lbs in 5 days as previously thought. I have gained weight.  I am working on accepting the feelings that accompany this. I think I'm in a better place to work on this. Nobody likes to gain weight, that's pretty much reality. But... I'm healthy.   

I put myself, my body, through hell. Can you imagine deliberately depriving your own body of nutrients it needs to stay alive? Can you imagine the destruction throwing up food causes? Or ingesting a plethora of pills to help further the weight loss process? How good is THAT for your body?! Oh my God, I sit and think how the hell am I still alive!!!  This has been going on for decades!  

I am at a really low point - sad, lost, confused, lost, angry, lost...  I feel like everything is out of control in my life.  Where did I turn for all those years to gain control over something when everything else felt so out of control? Ed. But what is happening now? Everything feels so out of control, yet the ONLY thing that feels IN control is my decision to eat well. Isn't this the complete opposite? What is going on here?  

So, the point of this email is to tell you that I have the strength to continue fighting this and I will succeed.  You are not going to see me relapse. Everything about this eating disorder is finally beginning to make sense. I have so much more to share but I'll save that for our next meeting. 

Lori, boy I can't begin to tell you how everything you've taught me is now landing in place and making sense and how in the world do I thank you for that?I was so, so sick.You saved my life.I still have work to do, I'm a work in progress, but slowly I'm regaining inner strength - which is just what I need to move forward. 

Thank you, thank you, thank you..."

I share this, with her permission, because while recovery is challenging, to say the least, it happens. And what I hear from her and from others confirms what Lisa Dawson shared in her study—that belief that you can recover, that change is in your hands, is essential for recovery. And that working with providers who get it and help you feel understood, and provide hope that full recovery is possible, can make all the difference.

Your thoughts?

Eating Disorder Recovery: Reflections from the Boston Bombing

I listened to the President’s speech at the Memorial Service for the victims of the marathon bombings. And by victims, I mean not just those who were at the finish line and had personally witnessed the explosions; not just those who were injured with shrapnel from nails and ‘BBs’, many of whom lost limbs and their ability to work at their trades. But those of us in the Boston area, and those of you living further from the scene who have lost a piece of our hearts through this trauma.

Maybe I spend too much time addressing eating disorders, and in no way do I intend to minimize the trauma experienced by this horrific event by saying this. But I see so many parallels between this Boston tragedy and living with an eating disorder. Are you thinking I'm crazy yet? After endless hours fixed to the news, here’s what I’ve observed:

• Both events try to steal from us our ability to live normal lives, to be carefree and relaxed.
• Both appear to arise out of nowhere, through no action on our part. We are victims of bombings, and we are victims of our eating disorders. Sure, eating disorders can be triggered by a trauma or even a diet, but only in certain people. Neither advertisements nor parents cause eating disorders. We can be at the wrong place at the wrong time, and we can have the unfortunate genetic makeup combined with triggers that set off our eating disorders.
• Both cause harm that leaves its mark on our memory, which permanently sensitizes us. Of course we may fully recover but both events. But having suffered with an eating disorder we may be more sensitive to others who live with this condition, and we may have a heightened awareness of the triggers which set it off.
• It takes a great deal of support from a range of sources to move on following both this bombing tragedy and an eating disorder—medical experts, mental health counselors, dietitians in the case of an eating disorder, and those whose experience with such traumas allows you to trust that recovering is possible.
• Both require you to realize why it's worth pushing to get through—in spite of the difficulty, the depression, the frustrations, the disappointments.

Yes, you can get through this.

If you’re suffering from the continuing uncertainty of this past week’s events—with a terrorist still at large, or you struggle with anorexia, bulimia, or binge eating disorder, be defiant; do not submit to suffering silently or passively. And do not accept that this is simply the way it has to be, that you are simply doomed to live your life a victim of your disorder.

Be determined to take charge—to not allow your eating disorder or acts of terror to steal your precious life from you. Declare that you'll show up in Boston for the next Marathon to run or to root, and that you'll work to get yourself healthy to not be a victim of your eating disorder.