Sleep: A Strange (or Not-So-Strange) Enemy

I’ve gone through large portions of my life being chronically sleep-deprived for one reason or another. In the early years of my eating disorder, I didn’t like sleeping because it felt like a waste of time that could be spent doing anything else that burned more calories. I would pace around my room for hours every night forcing myself to stay awake until the last possible moment, when I could no longer keep my eyes open. Once I started binge/purging, I was often kept up by that. I would be so tired but also so hungry that the urges were impossible to ignore. Nine times out of ten, I would choose b/ping over sleep. Some nights I would get less than an hour of sleep before having to leave for class or work the next morning. I struggled to stay awake during these daytime activities and sometimes crashed as soon as I got home, which then just led to an even later start to my nighttime b/ping. It was a vicious cycle.

 

When I first started writing this blog, I remembered my sleep issues all occurring in the presence of my eating disorder. Then I recalled a funny conversation I had with some family members several months ago that made me realize I was actually weird about sleep even before my ED officially began. My mom and my aunt were talking about taking long family car trips and my mom said, “My kids usually slept most of the way, except Rebecca- I don’t think I ever saw her asleep in the car. I guess she just never got tired!” This sparked memories of those long 10+ hour car rides we used to take to visit family out of state and I replied, “It wasn’t that I never got tired, it was that I always forced myself to stay awake in the car. I was miserable!” I saw sleeping as a sign of weakness. At 5, 6, 7 years old. What a weirdo. No one ever told me sleeping was bad or anything; I came to that conclusion all on my own.

 

When I first got into therapy, a lot of professionals tried to insinuate that my parents held me to unattainable standards or even that they put strict limitations on what I could eat, do, say, etc. But, that wasn’t really true. My parents held me to very reasonable standards and were not at all restrictive about how I lived my life, what food I could eat, etc. No one ever told me I was only allowed to sleep X hours a night or that I couldn’t eat X type of food. All those rules came entirely from my own strange brain. And not only that, but once I imposed those rules and had people take notice of my weird behavior, I thought it was absolutely essential to uphold that version of myself. Once I became known as the kid who didn’t sleep in the car, I had to be extra careful about never to allowing myself to fall asleep in the car. Once people knew me as the kid who never ate in front of people, I couldn’t let that version of myself die either. It made no rational sense but it was the way I lived most of my life.

 

One of the first things I noticed about inpatient facilities for eating disorders was how obsessed they were with sleep. Upon my first admission, I was immediately put on medication to help me sleep, before I was even asked if I had trouble sleeping. If a nurse noticed me still awake during one of their routine checks during the night (usually every 10-15 minutes), they would ask what was wrong and if I needed more meds to sleep. Apparently anyone who took longer than 15-20 minutes to fall asleep at night had severe insomnia!

 

I never liked taking meds for sleep because they always left me extremely sleepy in the mornings. I would struggle to stay awake in groups and sometimes even meals. As if meals weren’t hard enough, I had to continuously pinch myself to stay awake. When I would ask to be taken off the meds or when I refused to take them, it would go down in my chart and I’d be labeled a “difficult patient,” all because I didn’t want to fall asleep in my cereal.

 

This was a theme throughout most of the inpatient and residential facilities I passed through over the years. Many places had doctors prescribe patients powerful antipsychotics as sleep aids. I remember the first time I was handed Seroquel; I was so confused. I knew my meds, and I knew that Seroquel was an antipsychotic. Why was I being given an antipsychotic when I displayed no psychotic symptoms? I quickly learned this was becoming the new trend in the mental health world– prescribing antipsychotics for their “off-label” uses, many of which included drowsiness. Seroquel, Risperdal, Geodon, Zyprexa– I’ve been on them all that some point, mostly for the sole purpose of helping me sleep, even when I never asked for help in the first place. Speaking of Zyprexa, it is also commonly prescribed to anorexics to “help them gain weight,” as weight gain is a common side effect of the drug. Because, you know, that is totally the answer– give someone who is already terrified of gaining weight a drug with a known side effect of weight gain. That will totally work! They won’t suspect a thing! That one is wrong and ineffective on so many levels, but doctors still use it.

 

There is nothing inherently wrong with using medication to treat (actual) insomnia. The problem I had with these facilities’ obsession with sleep was that they did what this article referred to as “medicalizing sleep.” Sure, there are countless physiological processes that occur during sleep, many of which have been studied in depth. However, the overall concept of sleep itself is impossible to measure. We’re also constantly being fed mixed messages about sleep. We’re repeatedly being told how important a good night’s sleep is, how adults require a solid X hours of sleep per night while children and the elderly need X (it’s always changing). Entire clinics are devoted to helping people learn to “sleep smarter” and doctors are handing out medication for sleep like it’s candy, including powerful antipsychotics. On the flip side, we set multiple alarms to make sure we wake up at the same ungodly hour each morning, and some professions have people working 60 and 70 hours a week. How do we reconcile these two mindsets? We’re being told that the quantity and quality of our sleep has critical implications, and yet we’re being expected to endorse lifestyles that make getting sufficient sleep impossible.

 

The idea of sleep being a sign of weakness was probably not completely invented by my own strange brain. My parents did not instill this into me, but modern society might have. When we run into people we haven’t seen in a while and they ask how we are, chances are both sides will say something like “I’ve been so busy!” It’s good to be seen as busy. It makes us feel productive and useful and sometimes it can even be a source of competition. We’ve all probably been a part of many “who’s the busiest?” conversations, either at work or amongst family or friends. “I am so busy this week. I have to do x, y, and z, all while managing Project A.” Then someone chimes in, “Is that all? That’s nothing compared to my week. I have to do a, b, c, and d on top of managing Project x, y, and z.” And so goes the game of one-upping; everyone wants to be seen as the busiest. Bonus points for mentioning how much sleep you’ve sacrificed.

 

There are countless parallels that can be drawn between sleep and eating. I know I’m not the only person with an eating disorder to have these warped ideas about sleep. I like to think that the distorted thoughts and behaviors I have (or had) around sleep developed much like my distorted thoughts and behaviors around food did. No one single person drilled these ideas into me, nor did society force them upon me. It was likely a combination of my innate personality traits interacting with the messages I received and interpreted (in my own way) from society. I’m lucky to have, over time, cultivated a progressively less black-and-white view of these things. Sleep is not all bad or a sign of weakness, and neither is food. I can admit to liking both now, which seems like such a silly thing to even point out. Sleep and eating are both basic human needs, and yet for so long I could not allow myself to admit to liking either one. Well shit, the secret’s out. I do love sleep. And food. Never believe an anorexic who says she/he dislikes food. Everyone likes food, and I’d even venture to say that most people who develop anorexia (or any eating disorder) probably “like food” even more than the average person. Otherwise, there would really be no disorder… but that’s a topic for another blog. 😉
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Recklessly Residential: The Truth Behind that Picturesque Website

Since Monday, this article has been floating around the interwebz causing much buzz in the eating disorder world. It’s hardly news to most of us; similar articles have been popping up for the past year or so. Since the early 2000s, the number of residential treatment centers devoted to treating eating disorders has increased from 22 to more than 75. These days it’s pretty easy for those affected to find a specialized center within reasonable travel distance. Actually getting into these places is much trickier, however, as insurance companies are far less likely to offer coverage for residential treatment versus more traditional inpatient or hospital-based treatment. If you’re wondering what the difference is between a “residential” and an “inpatient” center, the answer is, it varies greatly. Inpatient facilities are generally shorter-term programs aimed at medical and psychiatric stabilization, whereas residential centers cater to longer-term treatment and usually incorporate more therapy and “real-world” practice. Or so they say. I have found that sometimes the distinction between inpatient and residential is quite subtle– either in “residential” centers that offer little more than your typical inpatient unit or in “inpatient” units that operate more like longer term residential centers.

Why is this even important? Well, because over the years inpatient programs have gotten a pretty bad name, whereas residential centers are often hailed as the mecca of recovery. “If only I could afford to go to [insert name of popular residential center], then I could finally get better.” Or (yes, this really happens), “Please donate to my GoFundMe account to help me go to [insert name of most expensive residential center]. My doctors told me I need to go here and only here in order to get better.”

I am where I am today because of the changes I decided to make after living with a serious eating disorder for most of my life. I spent much of my youth and young adulthood bouncing in and out of various hospitals, inpatient units, and residential centers trying to get better. Nothing seemed to help. I was no better off after leaving the fancy residential center my parents paid out of pocket for than I was leaving the hospital where I received free treatment in exchange for my participation in research. Talking to other long-time sufferers like me, I find this is often the case. We have long histories of admissions that are now hardly distinguishable from each other, despite how different they seemed at the time. A lot of us do end up getting “better” (not necessarily “recovered”) but we cannot attribute our success to any one program.

I consider my turning point to be around the time of my last inpatient admission three and a half years ago, although it would be false to say that I got better as a result of going there, it was merely the setting for many personal changes I initiated during that time. This place was far from the picture-perfect center you see in the shiny facility brochures (or these days, the websites). There was no equine therapy, lush green landscapes, or private bedrooms with views of the beach. This was a makeshift wing of a psychiatric hospital surrounded by barbed wire fencing. We had to walk outside to get to the middle school style “cafeteria” and then take our food back to the smelly hospital gym to eat (yes, they thought it would be cool to have a bunch of exercise-restricted ED patients eat in a gym). This was no Monte Nido, but it was what my insurance covered at the time. And believe it or not, I had a better experience at this barbed-wire joint than I had at many of the much nicer cushy facilities I stayed at over the years. It was here that I first started to believe I could have a life that consisted of more than my eating disorder.

Let’s compare this to what I consider to be the least helpful (and in many ways, harmful) place I went back in 2006. I’m talking about Mirasol, that beautiful house in Tucson, AZ that should never have been licensed to treat eating disorders. Here are just a few of the atrocities I encountered while there:

  • They prided themselves in employing only staff who had recovered from their own eating disorders or addictions. This can be a good thing, when staff are actually recovered and mature enough to handle working with such a close-to-home population. Many staff were not. I still remember walking into my first group and hearing a man describe his most recent (as in, a couple weeks earlier) very graphic suicide attempt. It was almost like a step-by-step how-to guide. I assumed he was a client, but no– clinical director.
  • There were a variety of alternative “modalities” we were required to participate in. Some were kind of cool and maybe even helpful (like the biofeedback training for anxiety) but most were a colossal waste of time (e.g., tribal drumming group). Some were downright inappropriate or harmful to some. I tried to get out of the required acupuncture and new-age “polarity” because I hate being touched by weird people, especially while in the process of gaining weight and hating my body tenfold. They told me I was “hiding behind my eating disorder.” No… I just don’t need people rubbing me or sticking needles in my face.
  • If you struggled with binge/purging behaviors, they had you keep boxes of your most triggering foods in your bedroom at night (“exposure therapy”). And because they didn’t believe in locking bathrooms, this resulted in the all-too-common awkward group binge/purging sessions. Where was staff? Oh, probably relaxing with Margaritas by the pool (seriously though).
  • They took us to the gym several times a week– all of us, even those of us who were significantly underweight and would have been on bed-rest or at least restricted movement at any other place. The intention was to teach us about “moderate/healthy exercise,” which was a noble goal but absolutely not what occurred. Instead, most of us felt pressure to out-do one another and things got ugly fast. I guess that’s what happens when you take a bunch of eating disordered clients to a gym and leave them unattended for 4 hours. Who would have thought?

No, I wasn’t being held there against my will and I could have left well before I did. Hindsight is 20/20 though and at the time I wanted so badly to believe this stuff could help me. The facility came highly recommended from my outpatient therapist who thought I needed something different from your run-of-the-mill hospital ED unit that hadn’t helped me in the past. She helped get me a 50% “scholarship” but my parents still put down a pretty penny to send me there. And for what? I can’t say I benefitted at all from that place. I mean, I learned what a javelina is and how to make organic peanut butter balls but that’s about it.

People often complain about insurance and how it’s so hard to get coverage for residential treatment. Well, I wonder why? Maybe because the insurance companies see how most of these places do not bring about lasting change, and instead breed revolving door patients. Don’t get me wrong, I’ve had my own battles with insurance and have seen some very sick people denied treatment they desperately needed. The problem I have is when people think these expensive residential centers in particular are the answer, as opposed to the less fancy inpatient hospital-based programs insurance companies are more likely to cover.

When I first moved to Los Angeles I had a therapist try to convince me that in order to get better I absolutely had to go to Monte Nido (for those not aware, Monte Nido is a residential facility in Malibu that runs about $1,500/day and does not take most insurance). This therapist used to work at Monte Nido and claimed it was the very very best in eating disorder treatment, and even though I had been to 9 different places already (many of which also claimed to be the “very very best”), Monte Nido would be different. Well, seeing as I was a poor unemployed grad student living off of student loans with state health insurance, that wasn’t happening. And you know what? I’m glad it didn’t happen. Even though I struggled pretty damn hard over the next couple years I doubt I would have been any better off had I gone there. Also, that place always strikes me as mildly cult-like and I value my independence.

Just for fun, I took a look at the “Trusted Outcomes” page of the Monte Nido website. This is where they try to tell you how awesome all their former clients are doing. Most residential centers present something like this, and to be honest, Monte Nido’s is far from the worst I’ve seen (in terms of flawed research methods). That said, it’s still pretty bad. A few things that popped out right away:

  • The study they cite is 10-20 years old (data collected from 1996 – 2006). While I have never been to Monte Nido myself, I have heard from numerous sources that it has changed dramatically over the past 5-10 years. What started out as a small intimate center with two sites in the LA area has now expanded to include facilities in five states across the country. Clients who have experienced treatment at both the original site and the newer affiliate sites say there are more differences than similarities. Presenting this data as illustrative of the current treatment they offer is misleading.
  • Anorexic patients were considered to have “good,” “intermediate” or “poor” outcomes based solely on two indicators– weight and return of menses. If a patient was at a BMI of 18 or higher and was menstruating at discharge/follow-up, she was judged to have a “good outcome.” Having just one or the other was considered “intermediate.” So many problems here:
  • A client may have gained weight but held onto or even picked up new symptoms. By these indicators, it would be completely possible for someone to have a “good outcome” while binge/purging multiple times a day, as long as she had a normal BMI and a period when filling out the survey. This client should not be considered a success story; she merely falls into a different diagnostic category.
  • Also by these indicators, it would be possible for someone to have an “intermediate outcome” while still drastically underweight and engaging in multiple behaviors on a daily basis, as long as she was getting a period. While not common, it is possible to still menstruate normally while severely underweight, which is why the DSM-5 removed this as a qualifier for anorexia.
  • And hello, what about men with eating disorders? Hint: they never menstruate, hehe. (Although irrelevant to this particular study because Monte Nido only admits females)
  • They do use some additional outcome measures to assess progress (Eating Disorder Inventory [EDI-2], Beck Depression Inventory [BDI-II], self-reported progress] and while these measures do indicate some significant improvement, it is important to consider who is completing the discharge and follow-up surveys. While there was a 75% completion rate of follow-up surveys, this only included clients who stayed at least 30 days. This weeds out those who dropped out early, most likely due to not finding the program helpful or requiring a higher level of care (e.g., medical hospitalization). Also, with any follow-up survey like this, it is far more common to get participation from those doing well, which does not lend itself to a very representative sample.

There is some good news– In July, The Joint Commission will implement a set of minimum requirements needed for accreditation of residential centers for eating disorders. These requirements include new standards for assessment, treatment planning, family involvement, transitions of care, and outcome measures. This is definitely a step in the right direction.

However, it is still my personal opinion that residential treatment is rarely the answer. I think treatment should always be administered in the least restrictive setting. Inpatient facilities or hospital admissions should be reserved for when there is significant medical or psychiatric instability and/or when behaviors are so rampant they interfere with normal functioning. I can think of several occasions when this kind of treatment definitely benefitted me, either because it legit “saved my life” or because it helped bring my disorder under enough control so I could work on my real issues outside the hospital. This is helpful. These kind of admissions should absolutely be covered. But, 5 month stays at beachside houses where you pay upwards of $1,500/day to draw pretty pictures and do watered down yoga? Maybe not.