While it may be broadly understood that effective knowledge, diagnostics, treatment and resources for eating disorders are lacking, I think that until certain parts of this system are conceptually overhauled we will continue to only see change and improvements happen slowly, and on the fringe rather than in the mainstream treatment model. In order to understand how to treat eating disorders, treatment needs to understand what eating disorders are — and what they are not. This post lays out why I believe a revised understanding as to what sort of mental illnesses eating disorders are would help treatment providers better understand why things like peer support and Family-Based-Treatment are as important as those of us on the receiving end know they are.
This post is not going to go into the underlying anxiety base that OCD theoretically sits astride. While I do have lots of thoughts and opinions around what this anxiety is rooted in (surprise, surprise!) I’ll get into that in another post. Apparently as a result of the internet humans now only have a reading attention span of 500 words before they have to check Facebook or Tweet something. I’m trying to keep my blog posts to less then 8 Facebook breaks long each.
As always I welcome your thoughts and questions on this topic.
A mon avis, Anorexia — and all restrictive eating disorders but let’s keep this simple today — should be on the Obsessive Compulsive Spectrum Disorder (OCSD) list. It is not the emotionally-repressed hysteria, parent-caused trauma, or supermodel-wannabe illness that it has for so long been treated as. Anorexia is a mental illness. Even though this point seems to have been accepted by all (I hope), Anorexia treatment still operates as if the illness is choice-based. Anorexia is not choice based, and it is not logic based either — well not in the traditional sense. There is some logic there if one looks at the behaviors and thought process from an OCD lens. Not only that, treatment protocols such as FBT and guided peer support make a lot more sense when you come at AN from an OCD point of view.
For example, when you understand that Anorexia is energy flow based OCD — specifically energy deficit generated and geared OCD occurring in people genetically predisposed to having it — it may suddenly make sense to you why I am adamant that any person recovering from Anorexia (regardless of severity) has to abstain from all exercise. It will make sense to you when I explain that weight restoration is crucial, but that even more important is finding and eliminating all obsessive thoughts and behaviors while weight restoration is in progress. It might also make sense to you when I explain that for a person in recovery from Anorexia it is not healthy for them to eat “healthily” because when they do, they are reinforcing the Anorexia’s OCD rules around food.
As mentioned, there are a growing number of people who see eating disorders as being OCSDs and this is great. But is has yet to filter into treatment recommendations to the degree I believe it should.
Recovery means finding and eliminating all Anorexia behaviors — even the hidden ones!
In order to fully recover from Anorexia, we have to stop the obsessive behaviors associated with our own flavour of the illness. For me there were many. Far too many for me to write here. The most obvious where the foods I was not “allowed” to eat, the order and rigidity in which I did eat, the obsessive and compulsive and downright ludicrous amount of exercise I did, and the fact that I would and could not sit down during daylight hours.
Those were the obvious ones.
The less obvious ones are neither food nor exercise related. They would lie in things like “last Tuesday at 10am you walked up to the bathroom to empty the bin so you have to do it this Tuesday at 10am.” Or “every time you put fuel in the car you have to fill up, then walk inside and walk to the bathroom not because you need to go but because you did this once a couple years ago and it felt good because it was a little extra walking and now you have done it every time since.” Or, “whenever you come back home even if you don’t need to you have to walk upstairs and put your bag in your bedroom just because it is the furthest room away from the front door in the house.”
Which reminds me of the annoying task of finding uni digs. In the first year I was allocated digs on the 4th floor. Due to my Anorexia energy-deficit-maintaining OCD, this meant every year I had to find a room on the 4th floor. Unfortunately for my eating disorder, I couldn’t find a 4th floor room in the second year, instead I was stuck in a house with only two floors and even worse my allocated bedroom was on the first floor. There were bedrooms on the second floor, but those had been allocated to other flatmates, who thought it a little odd when they caught me walking up the stairs that I had no reason to be walking up — which I sneakily did every day. I had to. I had to walk up the stairs and back because I had to “make up” for the fact that my bedroom was on no longer on the 4th floor and the only way to do this would be to walk up and down the stairs at least four times a day. Which is what I had to do for the entire rest of my time at uni.
My obsession with movement filtered into everything. When waitressing I would choose to work the section farthest away from the kitchen so I had farther to walk every time I had to take an order in. If had to go somewhere in the car (which was the only time I was allowed to sit down, but not without high levels of anxiety) then I would park in the parking space farthest away from the meter so that I would get to walk a couple steps more.
The energy-deficit OCD was in everything from the way that I used to make a cup of tea (ritualistic walking around the kitchen) to the way I emptied the dishwasher (one item at a time to ensure the most ground covered) to they way I would vacuum the house (start in one room upstairs, then walk the hoover downstairs to the room farthest away and do that one, then back upstairs for second upstairs room, then back downstairs blah blah blah.)
Now, in case you are wondering if I have a co-morbid OCD element to my person. I don’t. I do not have OCD when recovered from Anorexia and I did not have OCD before Anorexia either. The most wonderful thing about that fact is that I now live a very OCD-free life. All of this was generated by my eating disorder.
And I say “all of this” but I haven’t touched the surface in explaining a fraction of it. My entire waking day was consumed by ritual and compulsion. This was one of the reasons I was so stressed all the time — I had so much to do! The smallest interruption would spark off a cascading shitstorm of anxiety and a race against time to get all my rituals done by the end of the day. Because one never gets to simply “not do something” — I would do it all even if it meant I was up at 3am in the morning.
I know that plenty of people with Anorexia have pre-eating disorder OCD and other anxiety disorders. I want to make the point that not all of us have co-morbid OCD though.
People with restrictive eating disorders are Individuals, and it shows in our behaviors
When you consider eating disorders as on the OCD spectrum, the classification of the eating disorder becomes less important in terms of how it is treated. Anorexia, or Bulimia or EDNOS … whatever … . The same deal applies: Find and eliminate the energy-deficit OCD behaviors specific to the individual in addition to weight restoring and supporting for any co-morbid disorders.
Rituals, compulsions, and outright weird shit
Whilst classifications of restrictive eating disorders vary, most of us have OCD-like rituals around all or some of the following: buying food; preparing food; arranging food storage; arranging food on the plate; order of eating food; manner of eating food; timing of eating food; rate of eating food; number of bites to take; caloric value of any given meal or snack; amount of food consumed in a 24 hour period; amount of exercise done in a 24 hour period; quality or type of food eaten. I could go on. I could also get a lot more detailed. Additionally, most of these rules and rituals play into one another so at any given time one might have to be satisfying a number of different rules.
Additionally, most of us also have our other, specialized, individualistic rituals and routines that it takes a trained eye to spot. As with other types of OCD, these rituals can become so extensive that they interfere with everything else in our lives. The OCD rituals become like weeds infesting a flowerbed. As we grow older with the illness they increase until we find every waking hour is consumed by ritual.
We all differ in this illness, but we do all have rituals and compulsions. They often start with some logic or reason attached to them (especially true of the larger and more obvious food and exercise ones) but after years they just become things that one has to do without even remembering why. Most of us do get them but we don’t talk about them as it is frankly often pretty unbelievable and there is of course the shame element.
Those of us who have had the illness and not reached a point of full recovery for years and years pick up new OCD behaviors along the way. We are less able to drop them, but sometimes we are able to substitute them out for other ones. On a good sprint these other ones are less harmful to us. On a bad sprint they are more harmful.
Now, the reason that we submit to the demands of the rituals, even when they fill an entire day every day, is because it marginally reduces anxiety to do so. Or at least it did at one point. Not doing so, even the thought of not doing so, creates overwhelming anxiety and stress. It is not enough to simply tell someone to stop and leave them hanging. They need consistent and effective support and positive reinforcement to help them push though the anxiety that is created by disobedience to the rituals and compulsions.
When I say support, I am not necessarily talking about high-brow, high-cost therapy — especially if the individual in need is on board and motivated with recovery. Often peer support, family support, and compassion in a space where we can talk about our stress without fear of judgement is enough to help us get through it. Sometimes we just need someone to hold a space for us and tell us we are going to be okay. Sometimes the very action of voicing the anxiety aloud and receiving positive reinforcement against it is greatly effective. Sometimes we need medication.
It is possible (and happens more often than not in treatment the way it is now) that a person is put on a weight restoration process that allows them to weight restore while still conforming to the Anorexia OCD and rule sets. When this happens the Anorexia is kept active in that person’s brain because it is OCD based not just weight based. When you do that, you are only focusing on the weight component not the OCD component and that means that individual will end up in a larger body with a very active eating disorder in their brain. This means as soon as they are out of treatment they revert back.
When I start working with someone I start them off with not only the food part, but also listing all the weird shit they do (OCD behaviors) and devising a plan to help them stop all of it. All of it. This is vital. As so many of us have OCD around food intake numbers, it is also vital that we are not given a low number of calories a day in a meal plan! The OCD will grab that and chew on it for years. Nope, high minimum intake with a focus on not counting intake at all in terms of calories or even macronutrients (as we’ll obsess about this too).
DSM and all that jazz
I’m not the only one that thinks this. Since the late 1930s researchers have speculated on the links between eating disorders and OCD. There are the obvious points that there are higher rates of OCD in people with eating disorders (11- 69% depending on the study) but that’s to be expected because as I noted earlier, even those of us with no OCD tendencies pre eating disorder onset present with OCD behaviors when we are sick.
In 1983 researchers Yarura-Tobia and Neziroglu suggested that eating disorders should be considered part of the OCD spectrum.
I rather like the simplicity of the conclusion of this study exploring that hypothesis that eating disorders are a phenomenological variant of obsessive-compulsive disorder: “To better understand the genetic components of eating disorders, these disorders should be considered as part of the obsessive-compulsive spectrum of disorders”
More recently the DSM5 revision saw OCD moved out of the anxiety disorder classification and into a separate category of obsessive-compulsive-related disorders (OCRDs).
I’m going to leave all that there for now, because I am most interested in looking at what this means for treatment and support for people with eating disorders rather than what it means for the DSM5 … (or 6). But I am excited to see what will happen in there moving forward.
Recognizing Anorexia on the OCD spectrum is helpful for treatment
The reason it is so important to me that treatment providers begin to see Anorexia as an OCD problem is that when we treat it like an OCD problem we address the mental aspect in the manner that is best suited to a full recovery. You don’t help a person with contamination OCD by giving them more soap. You don’t help a person with Anorexia by telling them to eat a healthy and balanced diet. We already freak out about thinking about this stuff. I have laid in bed awake for years worrying about the macronutrient balance of a salad. You help us by helping us break the rules.
You do not help a person recover from OCD by giving them more rules, yet this is exactly what most dietitians and other treatment professionals are doing right now. Today somewhere in a dietician’s office a person with Anorexia is being told to make sure that they eat a balanced diet. Somewhere else, another person with Anorexia is watching a slight frown from their dietician when they ask if It is okay to eat ice cream multiple times a day. I know it is happening because I frequently get emails from confused individuals in recovery who know that they are plagued by rules already and desperately want someone to tell them that they can stop — not give them more rules to follow, and not judge them for breaking the rules either.
Implications
When you understand that Anorexia and other eating disorders are on the OCD spectrum and relating to energy deficit, you understand why the key to treatment is, a) addressing the energy deficit with food and rest and, b) eliminating all compulsive behaviors regardless of how logical, justifiable and seemingly “harmless” they are.
For example, a person without Anorexia, walking a short distance to the store rather than taking the car would be seen as logical, justifiable, sensible, harmless to self, and morally applaudable. For a person with Anorexia, walking a short distance to the store may be a hidden energy deficit OCD driven action and is therefore harmful to self because it strengthens the eating disorder.
When I work with someone in coaching, I take a food-first approach, but it is also highly important that I help the person discover where the behaviors lie — even and especially those that seem harmless.
The most effective method in treating OCD is a form of cognitive-behavioral therapy known as exposure and response prevention (ERP) which basically means slow and controlled exposure to the things that the OCD kicks off about. We don’t have that sort of time with someone in recovery from Anorexia. It will always be a lot more urgent than that allows for.
A slow and controlled exposure we may not be able to achieve completely as one has to eat, however, we can slowly introduce fear foods etc when a baseline food intake has been established. We can also help people stop the unhelpful compulsions and thought patterns. All this happens to an extent in Anorexia treatment, but the problem lies in the continuing execution of the support.
When a person with contamination OCD is exposed to germs, they start with tolerating exposure to things low on the “scary list” and work up to higher levels — such as touching a toilet bowl. We do this in Anorexia recovery with fear foods and higher calorie items. What doesn’t happen in OCD exposure treatment, is that the patient gets worked up to the level of touching the toilet bowl, only to have the therapist turn around and say to them: “hold on now, actually that was too much germs, you went too far, you should go wash your hands now because that’s disgusting of you!”
Ludicrous as that sounds, this is what happens all the time in Anorexia treatment. People start actually eating, but as they begin to put on weight the attitude of the treatment team changes from “go for it” to “whoa, aren’t you eating a bit much?”
Or the less overt yet just as judgmental versions of the same: “You ate a lot of chocolate yesterday, do you think that you are comfort eating?” Or, “Well that’s great that you have been eating some cookies, but remember that apples are really good for you too.” Or, “You ate a very large portion of dinner last night, maybe we need to discuss intuitive eating?”
I think that these passive aggressive versions of “whoa you are eating too much” are the ones that irritate me the most. I may have Anorexia but I am not stupid. I know judgement when I hear it.
If a person with contamination OCD did touch the rim of the toilet bowl only to have the therapist who told them to do it in the first place turn on them and chastise them for being dirty we can assume that they would run to the nearest sink and start scrubbing their hands. i.e. they would revert to the OCD behaviour. Reverting to behaviour due to conflicting messages and judgement from others common for people in recovery from Anorexia for that reason.
Oh, another point here is that a person with contamination OCD wouldn’t get branded “resistant” and kicked out of treatment for the odd slip up.
This is why Family Based Treatment and peer support work!
One of the reasons FBT works, is that it treats the behaviors associated with the illness like OCD — i.e. you have to stop them. When you FBT someone you basically prevent them from going the Anorexia behaviors of not eating and pulling weird shit at the table. The reason is works is that it STOPS the eating disorder behaviors and provides the body with nutrients in order to weight restore.
FBT however, does leave out some of the less obvious OCD rituals and it doesn’t overtly address the mental thought rituals. Nonetheless, it does usually result in a lessening of these behaviors as the individual’s brain heals with the nutrition. In addition to the effect of nutrition, an element of brain healing comes with stopping the OCD behaviors in all forms, and this includes the mental ones. While stoping these is easier when a person is weight restored, we cannot assume that weight restoration will make them go away totally as most often the person will improve but not get the whole way fully recovered until all OCD behaviors are eliminated.
As you probably know I am a big fan of peer support for adults, and I think that one of the reasons good recovery focused peer support is so helpful is that it can help an individual when family support is not available. Via text and videocall organized peer support provides that low-cost, high frequency support that can motivate people to stop OCD behaviors as well as provide them with accountability checks. While mobile, text, and online support for eating disorders is relatively new and certainly not a “go to” resource in the eyes of most treatment providers, in the world of OCD treatment, there seems to be a greater amount of action-based online support. Internet based applications such as OCD challenge, LiveOCDFree and BT steps and many more.
The other huge benefit of peer support is this: someone who has been though it often knows the extent of the problem on a much deeper level then someone who has not. For example, I can see energy deficit in everything. I can call people out on things that no normal person would even consider. I know when that extra walk upstairs to brush ones hair was really just energy deficit OCD driven. That is the true advantage of peer support. We have the insider lens. It takes one to know one.
We need to weight restore and eliminate behaviours at the same time
Alarmingly, for some of us, the OCD component doesn’t get 100 percent resolved with weight restoration alone. Hence my insistence that we support full recovery form all angles by working on eliminating energy deficit OCD behaviors right from the start, while refeeding. This means refeeding without food rules. This means refeeding without enforcing a balanced diet or intuitive eating or any other “gold standard” way of eating as such regimes stand to reinforce the eating disorder’s notion that there is a right or wrong way to eat. We need to break the rules when we are weight restoring, not reinforce them! (Please can every dietician on the planet read this)
The less rule governed the better. Anorexia recovery nutrition should be heavily and aggressively reinforced with as much high-calorie food and on the ground support offered as possible. The only rules that need to be in place should be a high caloric minimum and a rule that you have to break all the rules.
TL;DR:
When you tell a person with Anorexia to eat a balanced, healthy, or intuitive eating diet, you may as well be giving someone with contamination OCD a scrubbing brush.
References
Yaryura-Tobias JA, Pinto A Neziroglu F. ‘The integration of primary anorexia nervosa and obsessive-compulsive disorder.” Eating Weight Disorder Journal, 2001; 6 174-180. 4. Murphy R, Nutzinger DO, Paul T, Leplow B.
Kaye WH, Bulik CM, Thornton L, Barbarich N, Masters K, “Comorbidity of anxiety disorders with anorexia and bulimia nervosa.” Am J Psychiatry, 2004; 161 2215-2221. 2. Yaryura-Tobias JA, & Neziroglu F (1983). “Obsessive Compulsive Disorders Pathogenesis Diagnosis and Treatment.” New York Marcel Dekker