How to access treatment without breaking the bank: Part I

There is a common misconception that you either need to have loads of cash or a phenomenal insurance plan in order to afford treatment. Sure, having one or both of the above certainly expands your options, but there are several less expensive ways to get treatment that many people never consider. As laid out in my Recklessly Residential blog, fancy $1,500/day treatment is not always the best option anyway. In this two-part blog series I will cover two main areas– treatment in exchange for participation in research (which is often free or even offered with a financial incentive), and support groups (both therapist-led and group member-led, as well as some online resources).

Ok, first up– treatment and research!

To start, there are many clinical drug trials and short-term psychotherapy studies offered. Many of these studies will offer a small monetary reward for participation or will at least cover any associated costs (i.e., transportation to and from study site). You can easily find open studies related to nearly any condition by searching the ClinicalTrials.gov site. However, there are fewer studies that offer actual long-term treatment.

One of the most well-known and reputable places that offers free treatment to those who qualify for one of its studies is the New York State Psychiatric Institute (often abbreviated “NYPSI”), which is part of Columbia University Medical Center in New York City. This is where I was referred in 2008 when I was desperate for treatment but had recently lost my insurance. There are always studies going on through NYSPI (not just eating disorder studies), so it’s all a matter of whether you qualify for any of their current or upcoming studies. If you’re specifically looking for inpatient eating disorder treatment, your best bet would be to contact the Eating Disorders Research Unit  directly. Sometimes they will post short blurbs about their current studies on their website, but I’ve been told that list is not always complete or up-to-date, so your best bet is to call. They will take you through a quick screening process to see if you’re likely to qualify for any studies. If you are, they’ll set up a more extensive phone assessment.

Usually qualification for a study will be based on meeting the current DSM criteria for a particular eating disorder diagnosis, because most studies are specific to anorexia, bulimia, binge eating disorder, etc. In 2008 this meant strict weight requirements for the anorexia studies, but seeing as the DSM-5 removed explicit weight standards for anorexia, I imagine it is now quite different. All studies will require that you are medically stable (if you’re not, they’ll first treat you at the adjacent medical hospital). A lot of studies will also require that you are “psychologically stable” with no active psychosis or suicidal ideation. And finally, many will also require that you be off all psychotropic medications (for the duration of the study).

I want to offer my list of observations that made my experience at NYSPI unique to that of treatment that wasn’t obtained “free in exchange for participation in research.” Now, just a disclaimer– I actually had a quite a negative experience at NYSPI. At once I may have even deemed it “traumatic.” This is related to a lot of things, but probably mostly due to the way they handled food, goal weights, and weight gain. At the time I was at my lowest adult weight and therefore had quite a lot of weight to gain. The “goal weight” they set for me was higher than I had ever experienced, and the rate of weight gain was also faster than I ever experienced (more about this below). This combined with other factors led me to relapse very shortly after discharging. That said, I know this is not the case for everyone. In fact, several people who were inpatient with me in 2008 did quite well and are still doing quite well. Different things work for different people. And even considering how “unsuccessful” my experience was, I would still recommend NYSPI over many of the fancy residential centers I’ve been to– hands down. At least with NYSPI you know they’re not just out for your money. 😉 And if you are truly without other options, it can be a (literal) lifesaver.

Okay, onto my list. These are things I observed during my three months at NYSPI that I found to be unique due to the research aspect– things that may impact the treatment experience. I could probably write a multi-volume book about my time at NYSPI, but I tried to keep this list relevant to the topic of this blog. Keep in mind this was 7.5 years ago (wow!), but I’m sure much of it still applies today:

  • Anyone who came in on the anorexia protocol was prescribed the exact same meal plan that was increased at the same intervals until you reached your goal weight (what they called your “90% IBW” although it was based on a wonky chart, so… yeah). There was absolutely no individualizing weights based on body type/weight history, etc.
  • Because they did not deviate from the standardized rate of meal plan increases, if you were someone who naturally gained at a faster pace, there was no adjusting to slow down the process. So while the “expected weight gain” was 2.25 lbs/wk, many people gained much faster.
  • I found pros and cons to things with food/weight being so standardized. As already mentioned, the very fast pace of weight gain (for me) was not helpful. I also found it somewhat off-putting that people were so open about discussing weights and numbers, which was different from most places I had been. This may have been partly due to the fact that we were required to see our weights each weigh-in (also different from many places that do blind-weights), and the fact that many “privileges” were tied directly to certain weight % milestones (i.e., walks at 75%, passes at 85%). It wasn’t uncommon to hear other patients say things like, “My weight was up/down __ lbs this morning!” even during meals. Yes, meals. For anyone familiar with ED treatment, you know this is often strictly forbidden and for good reason. On the flip side, one pro to everyone eating the same meal plan (calorically) was that it eliminated the inevitable food comparison BS that often happens in treatment.
  • I sometimes felt like a lab rat. I think I was part of six or seven different studies during my time at NYSPI. There were a couple big studies that hinged on me completing the program because they required “post measures” to be taken once I was weight restored. Then there were smaller studies that required maybe a couple hours or half-day participation, and then there were numerous surveys and interviews that took place throughout my stay. The pros were that being the research nerd that I was (even then), I found most of this to be quite interesting and enjoyable. I got to lay in MRI machines and rate pictures of faces and food, I got to talk endlessly to researchers about myself knowing it was (hopefully) all for a greater good. The cons were that at times it was overwhelming. Sometimes I just wanted to chill in my room and not have to think or talk about the same old crap. Sometimes I just wasn’t in the mood to answer endless repetitive questions like “How many times in the past two weeks have you been dissatisfied with your weight or shape?”
  • While all the research was technically voluntary, it sometimes didn’t feel that way. I remember there was one particular study I really really didn’t want to participate in, for good reason. Even my psychiatrist (who was not a part of the research team) agreed that it would be best if I did not participate. However, the Principal Investigator did not want to take my “no” for an answer. I mean, she eventually did, but not without several consecutive days of meeting with me, pleading for me to sign the consent form despite me telling her I was uncomfortable. In general, I felt a strong loyalty to the research I was participating in. I took it very seriously and felt good knowing I was “contributing to science!” However, this may have backfired. The only reason I stayed for as long as I did (three months, until the completion of the pre/post studies) was because I would have felt way too bad being a “study drop-out” and having wasted the researchers time had I left early. The treatment was NOT helping me though, and I’d say by the second week I had already made up my mind that I had no choice but to lose all the weight I gained as soon as I left. These feelings intensified the longer I was there, and by the last couple weeks I truly felt as if I was losing my mind. I had been pushed past my point of tolerance and all of my free time was spent planning how I was going to “fix” things (i.e., lose all that #^$%&*! weight ASAP). Not surprisingly, I fell harder and faster upon discharge from NYPSI than I had after any other treatment stay. This led to a lot of regret about all that wasted time and wondering what may have been different had I been more honest during my stay instead of trying so hard to “people please” the researchers.
  • Finally, as mentioned, I had to stop all psychotropic medications. At the time I think I was only taking one major antidepressant but I can see how this could be a bigger deal for people on more medications. I should note that they did offer to let me stay for several weeks (still free of charge) after the conclusion of the ED studies to get back on my old meds or try out new meds while still safe in a hospital setting. I thought that was nice, but of course the thought of staying any longer than I absolutely had to to fulfill my commitment to the research was beyond what I could handle.

Based on the experiences mentioned above, I also offer the following opinion about who may benefit most from this kind of treatment (note: This is only my opinion, which may not mean much. Please take it with a big fat grain of salt!):

    • Individuals with atypical eating disorders who may not experience the usual body image disturbances or fears of weight gain
    • Individuals who have not been to many other treatment centers
    • Research nerds (haha! But seriously, it was the one aspect that appealed to me, so if you’re a Research Nerd and ALSO fit the above two characteristics, this may be the perfect fit!)

Finally, I just want to point out that UNC’s ANGI Study is in its final months of recruitment. This is not a treatment study, but a blood-draw study that you can do from any location in the US or other eligible countries (Sweden, Australia, Denmark). They’re looking for anyone who has ever had a diagnosis of anorexia AND healthy controls! So it’s very easy to qualify! I did it several months ago and it was super easy. I didn’t even have to leave my apartment; someone came to my apartment to draw my blood (ok, kinda weird, but convenient!) and then sent it off themselves. This is the largest genetics study of anorexia and it is ending soon, so feel free to pass this info along to anyone who may be interested.

Aaaaannnddd… stay tuned for Part II to be posted in the next week! 🙂

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“The Perfect Plan” that doesn’t exist

Last week in our monthly department meeting at work we did this cute team engagement exercise called “What’s on your Plate?” At first I thought it was going to be a literal “What’s on your plate? What did you eat today?? Full nutritional breakdown, please!” and my anxiety surged a little, haha. But no, it was not that. Thank god. We were given three minutes to write down (with dry erase markers on real ceramic plates!) everything that was metaphorically “on our plate.” This could include job duties, personal/family responsibilities, or anything really. We then went around and shared some of the things on our lists– responding to emails, attending meetings, preparing presentations, taking care of children or pets, cooking, cleaning, driving, volunteering, etc. We were then asked to identify the things we wished we could spend less time on, along with the things we wished we could devote more time to. Not surprisingly most of us said we would love to spend less time on the tedious and mundane tasks (e.g., meetings, laundry) and more time on the things we find personally fulfilling (e.g., spending time with family/friends, doing truly meaningful work). I was thinking about this activity later in the day and how it could apply to my eating disorder, or any disorder/habit(s) one may wish to spend less time on.

Even though my life is a million times better than it was at the height of my eating disorder, the ED still interferes more often than I’d like. My life in “recovery” (said in quotes because I still don’t really know how to label it) is a series of ups and downs. Thankfully the “downs” are usually nowhere near comparable to the “downs” I experienced when deep in my eating disorder. And the “ups” can be pretty wonderful. Sometimes I’ll have a period of days or even a full week where I feel truly happy, like not just “content” or “not depressed” but really happy. Usually these periods coincide with times when I’m doing quite well with my eating disorder and its “interference” is on the relative low side. Naturally though, life is not always this nice. I also go through periods where the eating disorder is very loud, intrusive, and downright exasperating. Not surprisingly, my mood tends to be lower during these times as well. (What came first? The eating disorder or the chronic depression and anxiety? Coming soon to a blog near you. Uh… this one.)

One of the “downsides” to getting better from a mental illness is that once you get a taste for what “better” is like, the inevitable lower, darker periods can feel even shittier than you remembered (even when those times are not nearly as low/dark as they were in the worst of the illness). Now that I know what I’m capable of and how good things can be, I get extremely frustrated when things are not up to that standard. I also get scared of things continuing to get worse and ending up at rock bottom again. Hello, all-or-nothing thinking! I mistakenly believe things have to either be completely awesome or absolutely horrible.

I like knowing I’m in control of things so when things start to go awry, I like to tell myself I can fix it all by coming up with the perfect plan. The problem is, these plans are usually way too elaborate to reasonably implement all at once, and I have the false idea that I can only implement certain changes at the start of a new week. This means that if I notice things starting to go awry on a Monday, I know it’s unlikely that I’ll actually change anything until the following Monday, although I will definitely spend the entire week coming up with the “perfect plan.” I wish I could be less vague.

In terms of food, I eat basically the same foods everyday. Now I’m sure some of the Recovery Warriors out there would have plenty to say about this, because true recovery is supposed to be all about variety, mindfulness, intuitive eating, and all that good stuff people like Oprah write books about. To those mighty Recovery Warriors I would say, “I’m glad that works for you. It doesn’t for me. At least not now. Have a nice day.” The way I eat generally works for me. As much as I would love to be free from calorie counting altogether, that is not realistic for me right now, so it’s much easier only having to do that once when I first decide on a daily combination of foods. It also frees me from having to make on-the-spot decisions about what to eat each day, which has never been an easy thing for me. So yeah, it works. Sometimes though, I may decide I don’t like a particular food anymore, or something is discontinued, or a certain food starts to cause issues for me. A food may be perfectly safe and fine for years and then all of a sudden it starts triggering certain behaviors. WHY? I don’t know; I wish I did. Therefore what was once the perfectly safe and effective food plan is suddenly… not, and I feel the need to change it. It always starts out as a simple “Ok, I just need to get rid of [specific food] and replace it with something else.” I start brainstorming calorically equivalent foods and sure enough I become overwhelmed. Nothing seems like the right choice. Then I realize it’s not even feasible to change just that one food. If I’m going to change [specific food #1] I must also change [specific food #2] because [insert reason that seems illogical to most people but is completely logical to me]. Then I decide that while I’m at it, I might as well play around with the times I eat too, because maybe eating a tad earlier or later would make all the difference. I become very ambitious and start thinking about all the little changes I could make that may result in happier, less stressful days/weeks. Before I know it I’m drafting a whole new “daily plan” that includes not just specifics about what/when I eat but also a very precise schedule of new wake-up times, mandatory yoga, walking, exercise, cleaning routines, etc.

At first I’m thrilled; the new plan seems absolutely perfect and flawless and I don’t see how it could ever fail. I almost always start these new plans on a Monday, so the whole weekend is devoted to setting things up and preparing for success. Monday is usually a very exciting day and sometimes even Tuesday, Wednesday, Thursday… but more often than not I start to get very overwhelmed and impatient with myself, because rarely does it all come together exactly how I planned. I may decide that the new “perfect food” that took me a whole week to decide on is not actually the perfect food. Maybe this food causes the same problems as the food I just switched it out for. Or maybe it causes different problems. Why do I even bother? Cutting out food altogether would be easier. I may collapse on my bed after work and end up missing a night of yoga. Why am I so lazy? I may not get through my whole cleaning list on a particular day. Why am I so gross? This all puts me in a (surprise!) bad mood. I may resort to my eating disorder, which may temporarily lift my mood, but eventually it just makes everything a whole lot worse.

I know I’m not alone in these struggles. Many people with eating disorders also struggle with obsessive compulsive disorder, but the kind of obsessive thinking and planning described above often affects even those of us without a formal OCD diagnosis. It’s the nature of the eating disorder. I was talking to my friend about this the other day. She was like, “Hey, at least we bother to make plans. That’s more than a lot of people can say!” And that’s true– our intentions are always good, and our plans are always well thought out (sometimes maybe too well thought out). We’re not blindly going through the motions of our lives hoping for stuff to change. Maybe we just want it all a little too soon, all at once.

It should come as no surprise at this point that I rarely think residential treatment is the answer, but even I will admit that one of its major advantages is that it allows (or rather, forces) you to make big changes all at once. You don’t have to worry about what to eat, when to eat, or what to do all day because that’s all decided for you. The problem here is you eventually have to go back to your outside life, the same environment that got you into the big mess in the first place. All the “major changes” you made while in treatment are likely to be a million times more difficult to maintain outside the bubble of treatment.

So what now? Life seems kind of impossible. Can we all just retire to some tropical island with our cats and watch Netflix all day?

At the end of the “What’s on your plate?” exercise, we were asked to imagine what it would be like to change just 1% of whatever we wished we could change. How would that look? If your long commute to work is making you irritable, you could try taking a different route or leaving slightly earlier or later. That may or may not solve the problem, but at least you’re thinking of ways to deal with the issue. As explained above, it’s often difficult for people with eating disorders to make even small changes without feeling the need to change a million other things, and when those changes don’t “work” it’s easy to become super frustrated and even give up. For this reason, the “just change 1%” thing may be a little too simplistic. Instead maybe we can focus on accepting less than perfect results when we do attempt to make changes, as well as being realistic about the power of one tiny change. In other words, the world probably won’t end if I miss one day of yoga, and switching out [Food A] for [Food B that is almost identical to Food A] probably won’t be the long-lost answer to my eating disorder. I don’t see myself discontinuing my ambitious plan-making any time soon, but maybe I’ll eventually realize that the “perfect plan” doesn’t exist and I’ll be okay with that.