In praise of the buffer (thoughts on weight ranges)

So the point of a weight range is to identify a healthy weight. Now I have issues with making it a range and not just setting a minimum because why do we set a maximum healthy weight anyways? And is the difference between a minimum and maximum healthy weight really only five or ten pounds because that seems like awfully narrow. If we are at the top of our range are we somehow in danger of weighing too much? But for the moment lets just talk about how we set the number at the bottom end of the range. See I hear people talk about struggling at the bottom of their (or their loved one’s range). Or having been at a healthy weight but losing two lbs and struggling.

PSA alert: If you are two pounds or even five pounds away from a decent into the rabbit hole, you are NOT at a healthy weight. Or maybe I should say it is not a SAFE weight. Just like if you are standing right next to an actual cliff. Sure you are safe at the moment and might stay safe if you stand absolutely still and maybe even if you walk very slowly. But what if you want to run or jump or dance? What if someone bumps into you? What if there is a strong gust of wind or a heavy rain and the cliff erodes a little bit? Most people would agree that standing right next to the cliff is not actually a very good idea. Likewise, being at a weight that is one wobble away from the edge of your eating disorder is NOT safe. A safe weight is being five lbs above five lbs from the edge of the abyss.

 

Cause here’s the thing. There is no way you are going to go through life without any of that shit happening. You will have to navigate periods of high stress. You will deal with physical illness and injury. And you will lose weight at some point. That is a given whether it be intentional or unintentional, because of a physical stress or an emotional one. And you will need to have enough mental clarity be able to recognize that you are falling and do what it takes to get back to safety.

I have absolutely no doubt in my mind that the single most important factor in avoiding relapse for me has been the buffer I have between my minimum acceptable weight and the weight at which my brain turns to mush. In the past six year I have made two long distance moves to cities where I knew no one other than my partner, worked in high stress jobs, gone back to school, planned a wedding, had a very difficult pregnancy, and survived the first year of motherhood. I have dealt with fluctuations in the intensity of my bipolar symptoms. I have the stomach flu multiple times. I have supported friends and family through their own struggles and difficulties. Hell, in just the last two months I have dealt with (1) having bed bugs in my apartment (2) my car breaking down (3) the loss of a very beloved pet (4) visits with in-laws and my parents (5) my own physical illness and chronic pain issues (6) my toddler being sick for about a month straight (7) applying to and starting graduate school and (8) navigating health insurance issues and finding a new psychiatrist. And that doesn’t include supporting my husband through the stress of his PhD program and, oh yeah, the fact that the our country is going to hell.

And I have struggled. And I have lost some weight. But I have not relapsed and I am in a healthy enough place mentally that I can ask for support and get back to where I need to be. Because even at the bottom of my range I have a buffer against insanity. I know that I am unlikely to be able to pull myself back up if I hit 1XY lbs. And it is a given for me that I will slip at times. So I don’t let myself sit at 1XY + 5. I know I need to be at 1XY +10 so that when I do slip it is down a gentle slope that I can climb back up and not right off a fucking cliff.

And yeah I don’t like it. I am more comfortable with my body at 1XY +5. By society’s standards I “look better” at 1XY +5. But you know what else is more comfortable and looks better? Not fucking around on the edge of a potentially deadly illness.

 

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Its not about the wanting

I’ve been observing a conversation between parents online about how to cope with adult sufferers of eating disorders and various co-morbid conditions – about how to keep pushing for recovery when you are the only one fighting and about when to lovingly detach for your own survival.

Let me perfectly clear: I am not judging these parents. I completely understand where they are coming from, why they feel the way they do, and I offer them and their families my most sincere compassion. Moreover I think it is an incredibly important discussion to be having and one that too often gets swept under the rug because it is sad and uncomfortable and scary. No one deserves to have their reality swept under the rug because it is not a story others want to hear. The truth about eating disorders and mental illness in general is that even the very best treatments we have will not work for everyone. We can throw everything we have at these illnesses and some people will stay sick and some people will die and we need to able to talk about this.

What I do find striking (and upsetting if I’m being honest) is the way in which this discussion is being framed around words like “wanting, “willing”, and “non-compliant.” Its not about the wanting. Or the willing. Its about the strength of the illness. No one – and I mean absolutely no one – wants to live in the hell of an eating disorder or other psychiatric illness. Being too scared to change, not believing that change is possible, or believing that the process of change will destroy you – none of these things are equal to desiring the status quo. You are not waiting for your loved one to want recovery enough to overcome the illnesses. You are waiting for the illness to loosen its grip just enough for your loved one to access the part of them that already wants recovery. And sometimes refeeding and weight restoration accomplishes that. Sometimes it takes meds and therapy too. And sometimes we don’t have the tools to make that happen for a particular person.

I don’t always love the analogy of ED as an abusive partner but in this instance I think it is a helpful comparison. People stay in abusive relationships for lots of reasons even when they have people offering to help them leave. But no one wants to be abused and I think (hope) that we all recognize that. It hard to keep that in mind with ED and other mental illnesses because the sufferer is the only one who can see and hear their abuser. But that does not make it less real.

So even in discussions of chronicity and hopelessness and frustration and the need to detach from the sufferer I think it would benefit us all to remember that its really really really not about the wanting.

Learning to fly

When I was in treatment we did a lot of motivation building exercises. We talked about why we wanted to recover. We made a lot of lists – lists of all the good things about recovery and all the bad things about being sick, all the things we would be able to do when we were healthy, all the things ED had taken away from us, all the ways our illness hurt our loved ones, all the things ED made us lie about. Lots and lots of lists. We wrote out what a day in our life looked like now and how it would be different in recovery. Then we made action plans targeting each behavior we wanted to change, like really detailed contingency plans of how to access support and work through urges and implement coping strategies.

And I was really fucking good at those lists and plans. Like gold-star, top of the class, teacher’s pet kind of good. And yet I wasn’t recovering. In fact I was getting more and more sick. This disconnect seemed to really mystify the professionals. I said I wanted to get better. I acknowledged that being sick sucked. I knew what I needed to do. So what gives? Was I lying when I wrote pages and pages about how much I wanted to be recovered? Was I just bullshitting my way through treatment? Filling in the blanks in the action plan worksheets all the while counting down the minutes till I would go home and binge and purge and starve?

Well sort of. But its a bit more complicated than that in a way that I couldn’t articulate at the time. I was talking to someone recently who was frustrated that their loved one could say all the right things but wasn’t acting in a recovery-oriented way. I used this metaphor to try to explain it to them.

Imagine someone asking you if you wanted to be able to fly. You’d probably say yes right? Imagine them asking you to make a list of all the things that would be totally amazingly life-changing and awesome about being able to fly and all the things that suck about having to walk instead. Actually imagine you can’t even walk – imagine you can only crawl around and then compare that to flying. I bet you can come up with a lot of reasons why you would like to stop crawling and fly instead. Now imagine writing a plan about how you are going to learn to fly. Maybe it looks something like this:

1. find a flying school and sign up for classes.
2. attend flying classes
3. practice flying every day
4. read about how to fly
5. visualize yourself being able to fly
6. remind yourself how awesome life will be when you can fly – write out a list and carry it around with you so you have it when you are tempted to stop trying to fly
7. ask friends and family to support you in learning to fly, to remind you to practice and cheer you on when make progress and encourage you when its hard.

Ok so now you are going to do all of those things right? You are going to devote time and effort everyday to learning to fly. Right? Because it would be SO AWESOME. Because YOU DESERVE TO BE ABLE TO FLY. Right?

Wrong. You aren’t going to do that because its not going to work. You are never ever going to be able to fly no matter how long your lists are or how detailed your plan is. Its just not going to happen. The lists and plans are a purely academic exercise – interesting to think about maybe but not rooted in reality.

Recovery is a bit like that. Only harder and scarier and more painful. Sure if I could have snapped my fingers or clicked my heels and all of a sudden been RECOVERED I totally would have. But I didn’t believe, not with a single fiber of my being, that it was actually possible. So I wrote the lists and I made the plans and it was all a lovely fantasy. But no fucking way was I going to go throw myself off a cliff hour after hour, day after day, with no safety net in the hopes that eventually I would stop crashing into the ground and be able to fly. I couldn’t understand why everyone thought I should be doing that. It didn’t make any sense.

I’ve written before about how important caregiver and clinician confidence (real or faked) in recovery is – how they have to be able to hold the hope for the sufferer until the sufferer can hold it themselves. Keep showing that hope and confidence but don’t expect them to believe you. Know that what you are asking them to do feels impossible and painful and stupid and pointless. Know that you are taking them up to the top of that cliff and throwing them off and that your promises that one day they will be able to fly sound hollow and insane.

I know how hard it is to believe in recovery when you are sick or in the trenches fighting alongside a loved one and I’m pretty sure there is nothing I can say that will change that. But I’ll be damned if I’m not going to keep trying because I can fly now and its pretty fucking cool.

 

Point of no return

There’s something I want you to know: It is not too late. You are not too broken. There is no point of no return.

I did some pretty “bad” things when I was sick. Gross things. Embarrassing things. Dangerous things. Things that hurt other people. Things that went against my values. Things that I had sworn I would never ever do. And I remember feeling every time my behaviors escalated, that it was one more nail in my coffin, one more strike against me, and that eventually I was going to have done so many “bad” things that I would be a lost cause, that I would have gone too far and there would be no returning to the land of the living. I was sure that there was no way to pick up all the pieces I had shattered into and reassemble them into anything that resembled a real person.

I want you to know that I was wrong. I am here. I am living a real, full, happy life. I was not too broken, too bad, too fucked up. I was not un-fixable. And neither are you. I was pretty far gone and I came back. And you can too. As long as you are alive, recovery is possible.

Likewise, if you are in the beginning of your recovery journey, I want you to know that no matter how hard it is, I promise you, it does not mean that you are not on the right path. Recovery will at times be harder than you can imagine. And you will think that this is not what recovery is supposed to look like. Your illness will tell you that this amount of struggle is not normal, that it means you will fail at recovery and that you might as well just give up now. That is a lie. No amount of struggle is indicative of the fact that you cannot recover.

This is a message for family members and care givers too: your loved one is not beyond help. No matter how many interventions have “failed” in the past. No matter how long they’ve been sick and no matter what their behaviors are, they are not too sick to get better. Your confidence in this fact is a perhaps the most important thing you can give them. Show your loved one that you absolutely believe that they will get better. Lie if you need to. Tell them you have a plan b, c, and d in case plan a doesn’t work. Even if you don’t. Tell them you will never give up. Even if sometimes you want to. Tell them that other people in their situation have recovered. Even if you’re not sure. Please know that you’re loved one needs to believe that you believe this. Even when you don’t. And do not give up on yourself. Nothing that has happened in the past means that you cannot become an active part of your loved one’s recovery. No matter how many times you feel you have failed them, it is not too late to get it right. Be honest. Tell them that you know you got it wrong in the past, that you didn’t understand their illness, that you got bad advice from professionals. Tell them that you know more now and that things are going to be different. Tell them that you are not giving up, that you will never give up.

There is no point of no return.

2013 Year in Review and 2014 Goals

2013 was a hard year guys. It had some great moments and some pretty shitty ones and all in all I’m not sad to see it go. My dog had cancer (super shitty although he is ok now), we got married (awesome but super stressful), I struggled through three more quarters of school (really rough but at least I am closer to being done), my husband decided to make a major career change and apply to graduate school in a new field (we feel good about this but it is stressful and means we don’t know where we will be next year), and I dealt with several episodes of depression and severe anxiety and some lapses into restriction (super shitty although I am doing well now).

2014 is going to be a big year too. I (knock on wood) will graduate college and we will most likely be leaving Seattle. Other than finishing school, my only real goals for 2014 are to keep moving forward with recovery by dealing with some lingering issues in therapy and being more honest with my husband when I am struggling. It would be great if I started blogging again, got more exercise, and went back to volunteering at the animal shelter but I’m not putting too much pressure on myself about those things.

Happy new year everyone!

 

The Double-Edged Sword of Stigma-Reduction

I am taking an abnormal psychology class this quarter and its pretty terrible which makes me angry and frustrated and sad (and we haven’t even gotten to eating disorders yet!). A large portion of the curriculum seems to be dedicated to reducing stigma around mental illness. Which is great (although not really what I think an abnormal psych class should focus on). Its the way the professor is going about it that is getting me all stabby. Like many other mental illness awareness/stigma-reduction campaigns the focal point seems to be the idea that mental illness is not that different from normal emotional experiences  and therefore that people who suffer from mental illness are just like everyone else and that everyone can understand what having a mental illness is like.

JUST NO.

Mental illness is not just an extreme version of normal emotion and behavior. Yes, sometimes the outwardly visible symptoms of a mental illness can appear as exaggerated versions of normal behaviors but the emotional experience of the sufferer cannot be understood in those terms. Eating disorders may look like extreme dieting behavior but let me assure you having an eating disorder IS NOT in any way like the experience of dieting. You cannot take the experience of a non-eating disordered person who diets and has “normal” body image issues and multiply it by any order of magnitude and get the experience of an eating disorder. Depression is not just feeling extra sad. Anxiety disorders are not just feeling extra worried. I believe this holds true for all mental illnesses.

Now the issues of whether people with mental illnesses are just like everyone else and can lead completely normal and successful lives is a little more nuanced. I absolutely believe that with good treatment most people can go into remission from their mental illness. I like to think that I am living proof of that. My life looks – and for the most part is – very normal. And yet for many years I was completely unable to function in any way that resembled normality – unable to hold down a job, stay in school, have relationships, feed myself properly, at times unable to even get out of bed and get dressed. And for some people with mental illness, their lives may never get back to normal. When we harp on and on about the idea that people with mental illness can be totally “normal”, what are we implying about the mentally ill people who can’t? That if they just tried harder they could overcome their illness! and be normal!? To me it just reeks of victim-blaming. Because, honestly, the difference between me and the homeless, schizophrenic man on the street corner is not that big. My parents were willing and able to pay for airplane tickets home from South America and pay rent on apartments when I couldn’t. They did a lot of things wrong but they never told me I couldn’t come home. That’s all. That is the difference. There are moments I think back on when, without that financial support, without a home to come back to when I had nowhere else to go, I would have ended up on the streets, on drugs, psychotically depressed, doing god knows what. The people for whom that becomes the reality do not deserve to be thrown under the bus in the name of making the general public feel more comfortable with mental illness. These people do not deserve to have the burden of the stigma thrown entirely on their shoulders for the benefit of those of us lucky enough to come out the other side and be able to pass as “normal”.

So, no, I do not believe that people who have not experienced mental illness can truly understand what it is like. For some reason that is not entirely clear to me, this seems to be a belief that offends a lot of people. I am not saying they have never experienced anything painful or hard. I am not saying that they cannot learn about mental illness and effectively support people who do suffer. I am not saying that they cannot become wonderful, compassionate clinicians. I am not saying that loving someone with a mental illness is not a challenging and painful experience in and of itself. What I am saying is that YOU DO NOT KNOW WHAT IT IS LIKE. And that’s ok.

We do not talk about other illnesses in this way. People do not claim to understand what it is like to have cancer because something bad happened to them once. We do not conceptualize cancer as a really really exaggerated version of the flu. We do not think that our ability to treat people with physical illnesses with compassion is tied to our ability to relate to their experience. Treating physical illness or supporting someone who is ill does not require us to KNOW exactly what they are going through. We need to stop doing this with mental illness. We need to encourage an educated and compassionate view of mental illness that is not relient upon this idea that its “not that different”.

Success!

I would like to announce to the entire world (or, you know, the two people who read this blog) that I successfully bought a swimsuit. Not only did I buy one but I think I will be willing to wear it in public and I actually kinda sorta even think I look cute in it. Guys, I haven’t worn a swimsuit in six years and an attempt to buy one last year ended in an epic meltdown. So this is kind of a big deal. My body dysmorphia still gets the better of me at times (ahem, wedding dress fitting) but I am fighting back and am finally making some progress. I’m kind of awesome. Just sayin’.

Also, stay tuned for a series of blog posts on communicating about eating disorders.

2012 Year in Review and Goals for 2013

Last year I made an ambitious list of new year’s resolutions. Let’s see how I did shall we?

1. Go to bed earlier. Didn’t do such a great job with that. Definitely something to keep working on.

2. Apply to school (and get in). Success! I applied to University of Washington and started full time this summer. I have completed two quarters. Its been a bit of a bumpy ride but I guess that was to be expected.

3. Drink less beer. I wasn’t drinking a lot to begin with but I do think I’ve cut down a bit. I’m actually not sure why I made this resolution last year?

4. Watch less bad tv. Hmm total fail. I will watch pretty much anything (except reality shows).

5. Read more novels. See more live music. Go to the movies more often. I have been reading a lot more but completely failed on the other two.

6. Cook a wider variety of foods. Nope. Laziness continues to win out on this front.

7. Tell my boyfriend (J) I love him more often. I actually think I’ve gotten a little better at this. I still don’t initiate ‘I love you’s’ very often but I do feel more comfortable saying it.

8. Keep the apartment tidier. Ha! If anything this has gotten worse.

9. Make some friends. I wouldn’t say I’ve made a lot of close friends in the past year but I have widened my network of people I am friendly with. I joined a new soccer team, met people through volunteer work, and even occasionally talk to a classmate.

10. Do a better job of keeping in touch with my friends who are far away. Yeah I suck at this. I saw my Boston friends in September but haven’t really talked to many of them since. I did get to see a friend in NYC who I hadn’t seen in six years and another friend in DC who I hadn’t seen in 13 years.

11. Start volunteering at the Seattle Animal Shelter. Check. Took a couple of false starts (new social situations make me pretty anxious) but I did it and its been really fun and rewarding.

12. Find a way to practice my Spanish before it completely disappears. Nope. I think it has officially disappeared from my brain.

So basically I sucked at following through on last year’s resolutions. Still I would say 2012 was a success over all. Starting school again was really hard and fall semester was a bit of a disaster but I didn’t give up and I didn’t freak out too much over my less than perfect grades. I went to the second annual FEAST conference in DC and had a wonderful time. Oh! And I got engaged this summer and bought a beautiful wedding dress without too much body anxiety and had a mostly good visit with my fiance’s family over Christmas.

The other resolution I made for 2012 was to be more proactive about tackling my body dysmorphia. In general my recovery is very solid. No major lapses into restricting in 2012 although I still hear my ED voice fairly often. Most of the time it is just background noise that I can ignore with any difficulty. Sometimes its a bit louder but not overwhelming. No cutting or purging either although I sometimes still feel those urges too. Judging how I am doing with my body dysmorphia is tough because it changes wildly from day to day. I bought a lot of new more adult looking clothing for school and I think that was helpful for my body image. Wearing tighter jeans and closer fitting tops was really really hard but forced me to look at and deal with my body in a way that I had been avoiding. And sometimes I actually thought I looked ok. And then other times my body dysmorphia still rears its ugly head and makes my life pretty difficult. Just a couple of days ago I saw some photos of myself from the holidays and promptly disolved into a hysterical mess and decided I should never be allowed to leave the house looking so disgusting. Sigh.

So goals for 2013:

1. Keep on pushing through the anxiety related to school. Be better about actually going to class and keeping up with the work but cut myself some slack when the anxiety is overwhelming.

2. Survive wedding planning and get married!

3. Keep working on my body dysmorphia. Resist the urge to return to wearing baggy jeans and my boyfriends t-shirts. Start going to yoga which I find helpful in feeling grounded in my body. Keep playing soccer and jogging and appreciate how good it feels to be strong and healthy. Be patient with myself when I am struggling.

4. Clean the damn house.