Sunday, May 19, 2013

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.


  1. I would like to respectfully disagree with the point you are trying to make in this post. I think you are saying that people with ED’s have a choice in their recovery, while people with physical ailments don’t. I can understand and agree with your view that people with ED’s make choices everyday that affect recovery, however it is far more complicated than that. While I know that my daily choices affect my recovery, it is not as simple as just deciding to eat or workout less or hate myself a little less today. I am shocked by your use of the word “simply” in regards to the choices ED sufferers make. (“Personally, I cannot simply eat or take a medication to cure my MS. But you can certainly do just that.”)

    After living with distorted eating for the past 13 years and anorexia for the past 5 years, I can assure you that no choice I make is “simple” and I fight everyday to continue on my path to recovery. I also take offense when you say, “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.” I cannot imagine anyone who works with ED patients using the word “fault” in regards to eating disorders. When I slip and fall prey to an eating disorder behavior, it is not my “fault.” It is because I have a serious, life-threatening mental illness.

    I do make choices everyday in order to stay on my path of recovery, however, those choices are not basic “What should I have for breakfast?” choices. Every choice I make is difficult and at times painful. I didn’t choose to have anorexia and I cannot simply choose to be done with it. Every choice I make is deliberate and thought out, with the pros and cons weighed out. I have an amazing therapist who has helped me to understand myself better and to value myself enough to want to get better.

    Your post makes ED’s seem like a life choice that you can just wake up one day and decide to be done with. (“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.”) ED’s go way beyond choosing to eat.

    As a regular reader of your blog, I was disappointed to read this post. I understand that you have a disease with no cure and that must be very difficult. But as a woman with anorexia, I also have a disease with no cure. There are no quick fixes and no magic remedies. Someday, I may have fewer symptoms/behaviors than I do today. But there is no treatment or pill that has proven to be successful.

    1. Your point is well taken--nothing about recovery from an eating disorder is simple, and the last thing I intended was to minimize the struggle of individuals living with eating disorders. I also was not suggesting that simply deciding to recover results in recovery.

      But as you point out throughout your response, there are many points where choice is involved in recovery. From my experience, one can choose to come for treatment or not. One can accept that they need more support and utilize resources such as a higher level of care--or not. One can believe that because the statistics suggest that after living with an eating disorder for more than a decade that it's not worth fighting.

      You've apparently made many choices in favor of recovery--no doubt, none of them easy. For many living with eating disorders, there's a belief that they can't alter their course, that recovery is not even an option.

      I intended this post so that readers with that perspective might think otherwise.
      Thank you for sharing your sentiments.

  2. This was a tad hard to read, hard to read without feeling bad, but also an important message - it's one I tell people almost every day: Recovery from an eating disorder is simple. it's not easy. Simple is NOT the same as easy. But it is simple. To not have an eating disorder, you have to "simply" not do eating disorder things. Not saying that's easy, and not saying you can do it without support and resources, but that is how you recover in the most basic of terms.

  3. As a patient of yours and a consistent blog follower I must admit that I struggled with this post probably more than any of your others. Not for the same reasons as Amy mentioned in her response – although those will likely come up, too, but for other reasons that left me feeling uncomfortable, sad, and even guilty. Your intention by this post was clear to me, perhaps because, unlike Amy, I know you and I know that you are not minimizing eating disorders. I know you understand that there is real pain beneath the symptoms. Symptoms that mask themselves as having to do with food and weight and body image. Yes, all of those things are real, but in my opinion they are the tip of the iceberg with the more serious, life altering garbage buried beneath the waterline.

    This post evoked interesting feelings. It reminded me of being a child and seeing my mom sick. This is not something any child wants to see, as, of course, the mom should be invincible! Not exactly the same, but in some way this window into your life and your health struggles feels similar. Maybe I feel sad knowing you have to go through this health condition. Maybe I hold you to a standard that makes you immune to troubles (I wish it were true!). Maybe I feel guilty for the knowledge that, no matter how it is sliced, there is NOTHING you can do about your condition.

    Some would argue there is nothing they can do about their eating disorder either. But I think there IS a big difference. Not for one minute do I believe that I could wake up tomorrow morning and decide that because its a Tuesday morning in May it is the perfect day to be all done with ED, to stop restricting, stop exercising, stop measuring (food and body), stop obsessing, ruminating and checking, stop purging, stop considering and talking myself out of laxative use to 'cope' with discomfort of food in my system, stop looking online at weight loss secrets...I could go on but I think my point is clear. I can't decide that (and I know you are not suggesting otherwise). If I could I would, and so would anyone else who suffers with this disease. HOWEVER, I can, as you stated, take steps along the way that either move me toward disease or toward recovery. I picture a road post sign, one side points toward “Sickness” the other “Recovery”. Its the proverbial fork in the road. And it sucks. And I know you know that. And, your situation sucks, too. But it doesnt have a road sign because you dont get the choices. And that makes me sad. As Amy stated, it is not up to me to have an eating disorder, but, as you stated, it is up to me to decide whether I want to fight it or lay down and let it walk across me, and being trampled on hurts. Yes, there are times that my ambivalence gets the best of me – just as there are times that ed does too. But I try to not let that be the case. A friend once said to me, about her alcoholic family member – 'he didnt choose to be an alcoholic, but after being sober for many months, he did choose to pick up that drink'. I dont know, it's tricky. It's disease winning the fight -and I dont know that we can ALWAYS win.

    I am glad that you are clear in your post that you feel neither of us is at fault for our disease. And I agree that passivity will not lead to change. Unfortunately, passivity is 'easier'. We (people with eating disorders) have to work so hard to manage a primitive life function – over and over and over – and again tomorrow. To eat should be easy, a 'no brainer', but for me it is not. And, with that in mind I will remind myself as often as possible that being sick from restricting, exercising, purging, etc is not the life I dreamed of, does not make me feel good and results in a murky life at best. I try to let that push me forward, along with the clear message from you and the rest of my team that people do get better. I have been dealing with this for a long time, too long, and I do, at times, feel hopeless. Today I have hope – so I will go with that.
    And, thanks for sharing your personal story with us.

  4. I know you're a straight shooter & this post isn't laden with guilt the way my eating disorder voice would have me believe. But none the less this post was scary hard to read.
    I really can see, now that I'm well enough, that my choices directly affect my health. But it's so guilt-inducing hearing this. Especially when the counter message is that you don't have that same choice.

    Again, factual, but so hard to hear.

    I wonder, however, how much of this post came from a place of your frustration that day; a sense that you were feeling trapped but really wanted to hammer home to us that we were not? "Why can't I make them see how lucky they are to have a choice whether to recover or not?" And as much as that might be reality, I never once felt lucky. Not when I was sick. And not while I was screaming at every damn mouthful of food. I never found the "hey, at least it's not cancer" approach worked well with me. that I'm better I can see your point. I do count myself lucky to be in recovery. I do count myself lucky to be surrounded by my beautiful children.

    So, is this post tough love or guilt? I know you well enough to know its the former. And I trust you over my ed voice any day.

  5. I received a few comments to me directly—not on the blog—that similarly differentiated between their reaction now that they’re in a healthier place—vs how they would’ve heard this post at a previous time.

    Yes, I've been frustrated-but truly not with my medical situation. I do consider myself remarkably fortunate. I have absolutely nothing to complain about—other than a lost day for infusions periodically.

    But I certainly struggle when I believe someone capable of change, of complete recovery, for whom taking the steps toward recovery is admittedly challenging--and they either don't believe it is in their hands to change or the obstacles to change seem insurmountable to them. They still need to move forward--to use their resources and to have the appropriate level of care to support recovery.

    Yup,readers, you are appropriately sensing my frustration--because choice is a factor in recovery, at some points along the road.

  6. So what do you do when you are frustrated? Do you tell your patient? I ask that because I suspect that when you are frustrated with their lack of action they likely are as well. In this recovery process I go through significant ups and downs. I often feel very frustrated with my progress or my lack of progress; or even my progress in one area and my slip in another. It is all so complex and I think even those with eating disorders THINK it SHOULD be easier, should be simple. Its just not.
    I honestly can only imagine how frustrating it can be to work with this population. I'm sure it matters quite a bit that you believe that your patient(s) can change - but how does your belief in them translate to their own belief in themselves?

    1. Truly, I find more work with eating disordered patients more rewarding than frustrating--most days of the week, that is!
      I suspect they are well aware of when I am frustrated--which I think is a good thing--but perhaps my patients/readers can share their thoughts anonymously as to how belief in them or lack of belief in them has impacted recovery!

  7. Wow, this was a tough article for me to read, but one I learnt a lot from and really helped me put things into perspective. I totally understand everyones sentiments in the comments, but for me it was an article that needed to be done. Thank you.