So, I was talking with a previous therapist today and inquiring about maybe working with her again.  She told me that she was now using a new kind of therapy — CBT-E.  It sounded familiar to me, but all I could recall off the top of my head was that it was one of those time-limited therapist… where you had 20 sessions or something.  I would have googled it right then, but I was in the car and couldn’t.

Anyway, she explained to me that it was THE new treatment in eating disorders… and it was more successful than any treatment ever has been in the past, with over a 70% success rate.  The number of sessions you get is determined by your BMI.  If you are EDNOS, then you have 20 sessions, but if you are a “more complex case and meet anorexia criteria,” then you get 40.

Let’s pause right here to look at that last comment, which equates case complexity with weight.  There has been so much research as of late that indicates that many individuals with EDNOS are just as sick as those with an anorexia / bulimia / binge eating diagnosis.

This makes me angry for a few reasons:

1. Case complexity really has nothing to do with weight.  Maybe there’s some correlation, but that’s it.
2. It invalidates the legitimacy (and seriousness) of EDNOS… and there’s already enough drama surrounding that diagnosis.
3. How much more clearly could you communicate that you only deserve help when your weight is really low?

I feel like everyone I know struggles with at least one of these issues, and they all lead into the “I’m not sick enough” mindset:

1. “My case isn’t serious enough to warrant treatment.”
2. “Only real anorexics deserve help.”
3. “Other people have real reasons to have eating disorders… I’m just making mine up.”
4. “Once I cross over that 85%, I don’t have an eating disorder anymore.”
5. “Anorexia is taken more seriously than other eating disorders.”

All of these misconceptions keep so many people from getting help, and it just makes me angry that my old therapist would change therapeutic orientations to something that supports this.

Anyway, I digress… because this is actually a semi-funny story.  So, as she talked about it, I became more and more skeptical of the entire approach, and agreed to go home and google it before making any decisions.

First, in case you don’t know what “body checking” is, there’s a great description at Eating Disorder Hope:

The truth is, everyone checks their body on occasion; perhaps it’s taking note of how clothes fit or grabbing a quick peek at the reflection in a store window. However, those with eating disorders repeatedly check their bodies in ways that are unusual. In fact, for these people, body and weight checking becomes second nature. Often individuals with eating disorders don’t even realize they’re doing it. Typically, they check to feel for fatness, bones and any physical change in their body. And the problem is, this checking rarely results in anything positive. These are not people who glance in the mirror and think, “I really look good today.” On the contrary, due to low self-esteem and negative body issues, they will undoubtedly say to themselves, “I am fat,” or “This sweater makes me look huge.”

For me (and a lot of other girls that I know), a kind of body checking that I do is to try on clothing over and over (and over and over) again…. every morning. Seriously, getting dressed in the morning can take an hour — just to choose clothing! Nothing seems to fit right, or look right, or coordinate how I want it to, etc etc. It’s frustrating.

Something that I have “challenged” myself to in the past is choosing my clothing the night before. This works pretty well for me — get up, put on said clothing, and move on with my life.

There are several advantages to this:

1. Sleeping in an additional 45 minutes (yes, 45!).
2. Not tearing my closet apart (saves me 20 minutes in the afternoon, putting it back together).
3. Not driving my dogs crazy as they sit there patiently, begging to go outside to go to the bathroom.
4. Maybe slightly better body image… just because I can’t try on every pair of jeans and decide that two of them are soooooo much tighter than they were yesterday (and I know this for sure, since I a) tried on every pair of jeans yesterday and b) am so objective).

As with everything, there are disadvantages:

1. Previously unaccounted-for changes in weather (don’t even get me started on the inaccuracy of weather forecasting…).
2. Having to be organized / motivated the previous night (often unlikely).
3. The risk of still trying everything in my closet on… just doing it at night, rather than in the morning (fortunately, I’m usually tired at night and don’t care as much).
4. Hating what I picked out.
5. Making poor clothing decisions the previous night (“wait, did I really just pair khaki pants with boots?”)
6. Feeling uncomfortable in my clothing (and therefore skin) all day

Anyway, I have now come up with a new level to this challenge — getting dressed in the DARK.

My husband and I are staying at my parents’ house for the holidays, and I get up hours before him (thanks to having a puppy who is soooooo excited to see everyone at 7am).  I’m an over-packer, so my suitcase is really heavy and awkward, and there is no way I am dragging it across the hall to the bathroom to go through every item of clothing and choose my outfit.  So, I’ve been getting dressed in the dark…. which has proved to be… interesting.  Luckily mismatched socks are in right now, huh?  As frustrating as this is every morning, it has saved me from re-re-re-re-re-revaluating what to wear.

Way to find the silver lining in an inconvenient situation… right?

What does the eating disorder steal from your holidays?

1. Time spent with friends and family
2. Holiday spirit
3. The world outside of treatment
4. Holiday food
5. Almost a whole season of the year that’s different from any other time

I spent this last week dealing with insurance company issues, treatment plans, meal plans, body-checking, self-loathing, lists of coping skills, CBT worksheets, scheduling issues, etc. I fit some Christmas music and shopping in there somewhere… You know, wherever I could fit it in between the eating disorder stuff.

The eating disorder has no season (although I would consider Christmas break and summer vacation to be “treatment season” since it’s a more convenient time to squeeze in some therapy). Maybe you struggle more in the summer because of summer clothing or in the winter because of depression and school stress… But in general, when you’re struggling with an eating disorder, ’tis always the season.

You are always missing out on things when you are consumed with the ED or depression or addiction, or whatever you struggle with… But there is something about the holidays that feels particularly depressing. The whole world (or so it seems) is celebrating and preparing and doing their holiday stuff, and you are in the same place you were last month… And the month before… And the month before that. It’s as if the month if December as no significance.

I kind of want to curse at mall traffic, and wonder why they still even manufacture awful Christmas sweaters, and put up lights on my house. And I’m not saying is isn’t all possible while being in treatment or in the midst of the disorder… I’m just saying that the spirit isn’t there. You’re still living in the ED world. Maybe you’re functioning in the real world, but all the spirit, love, hope, chaos, hurt, and whatever the holidays bring — it’s being stolen from you.

Not to be depressing or anything…. Just a thought

“If you tell the truth, you don’t need to remember anything.”

– Mark Twain

“I don’t ask why patients lie, I just assume they all do.”
“It’s a basic truth of the human condition that everybody lies. The only variable is about what.”
“I’ve found that when you want to know the truth about someone that someone is probably the last person you should ask.”

– Gregory House

So, while everyone lies sometimes, people struggling with an eating disorder (or addiction, or probably other mental disorders) lie more. It’s the nature of the disorder — you lie to others and you lie to yourself.

Mark Twain’s quote made me think about my own truth, though. Sometimes I think that I lie to myself so much, that I don’t even remember whether or not it’s the truth. Or maybe it’s that I can’t identify what is or isn’t true? And, as odd as that sounds, I think that’s kind of the goal of avoidance — isn’t it? To pretend and ignore things that you don’t want in your reality. You convince yourself that you don’t care, that it didn’t matter, and that it didn’t really happen.

In therapy, you run into that lying combination (to yourself and to others). It’s confusing enough when you’re just lying to yourself… but when you’re really into your disorder and your lying to professionals, to, it just gets MESSY. For the sake of this post (because I am sure I can think of more), let’s say there are four types of lying:

Lying to yourself:

1. Rationalizing with myself to the point where I’ve convinced myself it’s not actually true.
2. Not being able to gauge or recognize whether or not something is significant.

Lying to others:

1. Omitting information
2. “Real lying” (as I like to call it).

Lying to myself:
By the time I get to my therapy session, I really do feel “fine.” Maybe I had the worst weekend ever, but come Tuesday I’m thinking “oh, it was okay, and that was so two days ago.” Sometimes I don’t even remember significant events until my therapist brings them up. I can say (and pretty much believe) that eating went pretty well, until she asks something specific… like “how about that dinner you were really nervous about on Friday?” Oh, yeah……. THAT dinner…. forgot about that one.

Lying to others:
While lying to yourself creates plenty of chaos around determining what’s actually true, lying to others makes it 100 times more complicated. You can probably sense my personal definition of “lying” just by my distinction between “omitting information” and “real lying.” So, let’s say in that same therapy session, I failed to mention that I kind of quit taking my medication (and by “kind of,” I mean I did). It didn’t come up in the conversation, and she’s not my psychiatrist, so….. It’s easy to rationalize. And, as for “real lying” — well, I probably don’t even have to come up with an example of that one.

You can see how managing this information becomes increasingly difficult with each session. You’re struggling to determine if you really did have a bad day last week and to remember if you admitted to acting on symptoms in your previous session. It just doesn’t work well.

Personally, it’s much harder for me to stop lying to myself than it is to be truthful with others (and that’s including all the “positive” reasons that I do lie to them — wanting to protect them, not wanting to be a burden, decreasing worry, etc). With myself, determining the “truth” is this multi-step process. I have to determine whether or not I’m upset… then identify what is upsetting me and whether or not I do actually care about it. From there, I have to decide whether or not I’m going to acknowledge (let alone ADMIT to my therapist) that whatever event didn’t feel or go okay. It’s such a… process.

Summary:
If I had planned a takeaway message from this post, it would be this:

Something new is happening in eating disorders. The voice of eating disorder patients is less stereotyped, more empowered, and less victimized. Why? I attribute the changes to two separate but interacting elements: the cross-pollination of the Internet, and the shifting narratives of the treatment community.

Before the Internet, our exposure to literature about eating disorders was limited to the few books that happened to be on the bookstore shelves that year and the occasional magazine article. Now we can search for information in a deluge of competing sources and even talk back to them: commenting and quoting and blogging and even interacting with the writers. Treatment providers are also being exposed to and seeking out a new variety of both professional and anecdotal sources.

I think that Laura is on to something here, but I wonder — has the voice of ED patients changed, or is there now a forum (that didn’t previously exist) for more empowered discussion?

When I started GreyThinking, I felt there was a big gap between professionals, patients, research, and personal experiences.  My personal blog had gone from “here’s what’s going on in my life” to “I think the narrow definition of anorexia in the DSM encourages people with EDs to maintain a certain level of sickness.”  Not only did I feel that I had a unique perspective, but I was also frustrated with the lack of commentary surrounding mental illness.  Where were the other research-addicts that wanted to rant about journal articles that were true/untrue to their own experience?

It’s amazing how much has changed in the last few years.  Now I can pose a question on twitter, and have a myriad of people answer me: professionals, sufferers, family members, friends, etc.  As both a blogger and a patient, I think that the interconnection is awesome.

I hadn’t thought too much about the change in treatment landscape for professionals, though (well, minus my own paranoia that my therapist would stumble upon GT…).  I wonder if this interconnectedness helps them understand better or provides them more insight that they can use to treat their own patients.  Personally, the exposure to different blogs and treatment modalities has hugely impacted my perspective of the illness and the usefulness of treatment (if you read back a couple of years ago, you’ll notice that I am MUCH more bitter… although also much funnier, which makes those posts more amusing to read…).

Something I’ve always found to be frustrating with any kind of group treatment, is that the people who are doing really well discharge.  I know, that’s the goal, right?  To get better and not be in treatment?  However, there’s something unfortunate about removing inspiring and motivating people from the group setting.  I think that you need more exposure to people who are doing well and who have insight into the whole struggle.  I’m sure that Laura could speak to that same need for families and other loved ones (connection with those who have been there and made it through).

I’m not sure if the voice of ED patients in general is changing, but I know that there is a lot more access to those who are doing well.

Study findings:

• Pregnancy rates after 6 months of trying to get pregnancy were lower in women with anoreixa or bulimia
• Women with EDs were more likely to need fertility treatment
• The rate of unplanned pregnancies was HIGHER in those with a history of anorexia

While it took me a few minutes to rationalize how unplanned pregnancies could be MORE common in those with an ED history, I did eventually come up with a few theories:

1. Amenorrhea is deceptive – while lots of people think that you CAN’T get pregnant if you’re not getting your period, it’s just not true.  It happens.  I’d guess this is the largest contributing factor to the higher rate (the article says “underestimating their chances of conceiving,” but they’re probably one in the same).
2. Periods are undesirable — meaning, when you don’t have a period, opting to go on birth control and get one seems… ludicrous?  I know people feel very differently on this subject, but I’m just saying, amenorrhea can be kind of convenient.
3. Sexual abuse history — many women with EDs have some kind of trauma history, and there is a lot of research out there suggesting that women who suffered sexual abuse have an increased risk of early and/or unplanned pregnancy.
4. Invincibility — you know how you’re told all those risks of having an ED, like heart attack, osteoporosis, esophageal tear (not to mention DEATH), and you think “yeah, whatever?”  I think that could definitely apply to the “it’s not going to happen to me” mentality of unplanned pregnancy.
5. Self-care deficit – maybe it’s not “it won’t happen to me,” so much as “I don’t care.”  When you don’t have a lot of respect for your body (or, you WANT to hurt yourself), there isn’t a lot of motivation TO use protection.
6. Birth control effectiveness — some antidepressants reduce the effectiveness of birth control, and I’d venture to say that more than half of people with EDs are on some kind of medication for a mood disorder.  Also… while I’m probably grasping at straws here, I’d also bet that purging is not great for effectiveness when on the pill, either.

If there’s one thing that you take away from this post, I hope it’s this: You can get pregnant even if you don’t get your period.  Really. 

There was a post on Lifehack the other day called, “3 Reasons Why Shame is Your Friend.”  I saw that headline and of course HAD to read it. It turns out it’s the third in a series, after “Why Fear is Your Friend”  and “Why Sadness is Your Friend.” How many times have we talked about these things in therapy… as negative influences?

Personally, they’re all pretty interconnected for me. I’m all about avoiding everything (seriously), and a lot of that is probably fear-based. I’m afraid of screwing up, I’m afraid of being attention-seeking, I’m afraid of being too needy, etc. And, a lot of those fears probably stem from shame. I’m ashamed that I’m not good enough, I’m ashamed that I want attention, and I’m ashamed that I ask for too much.

Now, throw in sadness, and you have a whole cycle. Shame –> Fear –> Sadness –> Fear –> Shame. Avoiding everything does not lead to happiness, that’s for sure. When you act on all those fears (meaning: don’t try things new things you could screw up, don’t develop relationships where you might need something, don’t allow others to care for you because you don’t want to demand “too much” attention), you feel depressed! I end up lonely, bored, and pretty hopeless.

So, how does Lifehack argue that all of these negative emotions are “Your Friend” ?

• Fear
  • Guides you towards what’s important for you
  • Motivates you to take action
  • Gives you a rush
• Sadness
  • Shows you what you care about
  • Helps you to appreciate what you have
  • Requires you to be authentic
• Shame
  • Shows you what you believe about yourself and what your vulnerabilities are
  • Deflates your ego
  • is actually a back-handed compliment

Read: they’re all red flags. I guess you could make that argument for every feeling, and that’s why you’re not supposed to label them as “good” or “bad.” Take the point about shame indicating your vulnerabilities, for example:

Now, when someone calls me ugly, I feel a flush of shame, because when I was a kid, I felt ugly, and part of me still feels that way sometimes, so that indicates that I am still carrying around that belief about myself, buried in my subconscious. When someone insults you and you get upset, part of you believes the insult might be true, that’s insight into what you believe about yourself, and it indicates what you might want to work on as personal growth.

Maybe if I just thought “hey, that triggered some negative belief about myself that I’m still carrying around from my childhood” whenever I screwed something up, shame wouldn’t feel so awful. But, that seems to require a lot of faith that whatever negative belief isn’t actually true.

Earlier, I said that “avoiding everything does not lead to happiness.” For me, I don’t think that happiness is even my goal in avoiding unknowns. It’s the belief that taking the risk isn’t worth it. That maybe the hurt of rejection, abandonment, and disappointment is too much to handle.

Clearly my thoughts are all over the place, but my point is really that while fear, shame, and sadness all tell/show you things, it’s what you do with that information that matters. I’m very capable of connecting: relying on other people > being vulnerable > shame that I can’t do it on my own > probably some maladaptive core belief that I’m not enough or that needing help isn’t okay. That’s exactly why I avoid it! Again, this leaves me at the great chasm between knowing and doing.

In case you missed it (like I did), the new season of Celebrity Rehab began a couple of weeks ago. I’m just now catching up, and in the process of trying to watch everything on VH1.com, ran across a blog post about Drew Pinsky and his interview in GQ magazine.

When Vargas-Cooper asks Pinsky if putting troubled, narcissistic people in front of a camera as they endure the recovery process, he justifies that, saying “Here’s the thing: These are unmotivated people who want to be on TV and make money. That’s why they’re there. And in spite of that, they end up getting treatment, feeling good about it, being transformed by it.”

First of all, this is a great response for my husband’s and my “Is Celebrity Rehab helpful or hurtful? Is Dr. Drew just exploiting celebrities for the entertainment factor?” debate. Of course, being the Dr. Drew fan that I am, I believe 100% that he has good intentions, but my husband is a little harder to convince. Anyway, I think it’s a great point about treatment motivation — that you don’t have to be 100% “I want to get better, I want to recover, I know I have a problem, yay health” to actually get help. Same goes for eating disorders, of course.

So, maybe if treatment centers were more attractive for different reasons, we would have ulterior motives to go… and once we were there and engaged in the process would realize that we did need to be there and it was important, etc. etc. I have a few ideas on how they could do this:

1. Pay us to go (not the other way around)
2. Make treatment centers more like resorts (hmm… maybe this is why so many are in California / Florida?)
3. Hire staff as cool as Dr. Drew and Shelley

Then, next, I was thinking about something I heard a therapist say once, about staying in treatment being a way that people can escape life (you know, that idea that has us so fearful of being “too reliant” on treatment?). If you applied Dr. Drew’s philosophy to this, though, couldn’t you argue that maybe you are avoiding some of the responsibilities of life, but you’re getting help and getting better…. and eventually you’ll want to go back to life? That even if your motivation to be in treatment isn’t to get better (but to avoid something else), you’ll make progress in recovery and be better able to handle life with your ED / depression / anxiety / PTSD / whatever under control?

I’m not sure I actually believe this, but it’s something to think about. Also, unfortunately at least in the US, the treatment system doesn’t really allow for extensive ambivalence toward treatment — or for you to stay in treatment for as long as it takes for you to decide you to feel 100% ready to move on.

Common reasons that patients quit treatment (patient perspective):

1. consider “treatment to be inappropriate”
2. sufficient progress
3. not enough freedom
4. group therapy is too difficult
5. worried about work / school consequences

I can’t help but think that some of these tidy explanation are really code for a different (possibly disordered) thought. Here’s my take on what each of these mean:

Consider “treatment to be inappropriate”
Read: “I’m not sick enough”
I wonder if this is completely different from the “I’m not sick enough” idea. It makes sense — during the course of treatment, not only are you (likely) gaining weight, decreasing behaviors, and getting better overall, but you’re also experiencing the admission of new and sicker patients. At some point you start to feel like you don’t belong there.

Sufficient progress
Read: “I’m bored”
Treatment gets boring after awhile, and I think that “I’m ready to discharge” often gets confused with “this is getting old and I want to discharge.” Plus, at some point the initial challenges aren’t challenging anymore. That IS the goal, right? Anyway, when you get tired of treatment, you start thinking “I’m doing well enough to discharge….”

Lack of freedom
Read: “I’m tired of being treated like I’m five.”
It’s crazy how one day you are in the real world and can do whatever you want, and the next day you can be in treatment and have to ask permission to go to the bathroom. Not only can you go stir-crazy from not being able to leave the treatment facility, but it can be frustrating to feel like you always have a babysitter.

Group therapy is too difficult
Read: “I don’t want to talk about this in group.”
Unless it’s some triggering trauma group, I think the most difficult part of group is the fact that it’s a GROUP — not an individual session. There are things that are too hard to talk about outside of your therapist’s office. Having to try and discuss tough things in a group setting and be okay with that is really hard.

Work / school consequences
Read: “I’m screwing up my real life.”
It’s not easy to leave school or work and put your life on hold to go into treatment — however necessary it may be. And, unfortunately, it doesn’t always work out so well either. Often people do lose their job (I know legally they can’t fire you on medical leave, but you’d be amazed how many ways around this stipulation there are!) or have to withdraw from the semester. You need a life to go back to when you do discharge.

Maybe I’m just less honest than all the patients in the study, but I feel like I’ve used every excuse in the book before, and usually they are not as straight-forward as they seem.

Before proceeding, I should probably define medialization, per Simone Rodder’s article, “Reassessing the concept of a medialization of science: a story from the ‘book of life’“:

“The concept of medialization is used to describe the centrality of the media for the communication in society and processes of an orientation of social systems toward the media.”

She then breaks down the concept of medialization into two aspects:

1. increasing media attention for scientific issues
2. increasing orientation of science towards media

This was interesting to me, since you hear a lot about journalists sensationalizing science to produce an interesting story, but not so much about the scientific community distorting their findings to gain more press. There’s another great article — “The media’s and health scientists’ perceptions of strategies and priorities for nurturing positive scientist-media interaction for communicating health research in Uganda” (link to full pdf) — that further explores this scientist-media-society interaction:

“The most common errors in science journalism include omission of critical information and context, misquoting, simplification or sensationalization of headlines.”

“The mass media (radio, television or newspapers) plays a central role in provision of timely and reliable information to the public, fellow scientists and policy makers. The mass media is ofted cited as a primary source of health information.”

Anyway, given all of this information, my next thought is: so what about the influence of social media? Blogs, facebook, twitter, etc.

I think that social media is creating a new kind of medialization — one where you don’t have that intermediary between researchers and the public. Sure, I retweet news articles all the time, but I can also talk to psychologists, doctors, and researchers directly. Now, I wouldn’t consider twitter “a primary source of health information,” but it is a growing medium for all kinds of information… and I do think it’s going to influence this dance between science, media, and society.

How social media affects medialization:

1. Increased specificity of information — either you search for someone well-versed in exactly what you’re curious about or you ask a specific Dear Abby-ish question. The info can be so highly-personalized.
2. Decreased scientificness (I know that’s not a word) of information – aka: more “professional opinions” — Even if the info is way more relevant and interesting than a journal article, it’s not necessarily scientific.
3. Increased availability and variety of information – with the ability to connect to people directly, you have an unlimited number of sources from which to get information. You’re not relying on CNN to interview Dr. Sanja Gupta… you can ask whoever you want. And hey, maybe it’s a doctor… or maybe it’s a yoga instructor.
4. Information is dynamic and interactive – social media conversations are much more interactive than static news articles. In some instances, you’re mixing a few professional opinions with many non-professional opinions.
5. Scalability and/or reach — when you have a large article in the Times, that particular story is popular because a million people are reading it. However, when you have a trending topic on Twitter, a million people may be tweeting about it but only a dozen are seeing each tweet.

The influence of new social media does eliminate many of the barriers to communication that were outlined in the perceptions of strategies article, such as “lack of knowledge by scientists about how to disseminate research” and “poor working relationship between the health scientists and the media.” However, social media has at least as many problems as traditional media. I’m sure that you can take any of the factors that I’ve listed and identify how they are detrimental. Maybe… the evolution of medialization is just different; not necessarily better or worse.