[Trigger warning: if you have an active eating disorder or are in recovery from one, please pause to reflect and determine if you feel able to tolerate a discussion about treatment from a clinician’s point of view, as well as one reference to a specific number of calories.]
This interview with Bekah Mack has been edited for length and clarity.
RO: How did you start working in the eating disorder field?
BM: I knew that I wanted to work in mental health forever—well, for a long time, but it was kind of affirmed in school. There’s such a need for it and there are so few jobs available in [mental health], which is especially astounding given the fact that that’s where we started.
That said, I started my journey looking for any sort of mental health type things that I could get involved in, and I found out that [Johns] Hopkins has a residency program, and then ended up being offered a full-time job there instead of the residency, and the two services that I would be covering would be eating disorders and young adults with affective disorders.
Both are pretty difficult niches, so I was initially a little bit overwhelmed to say the least, but I liked the fact that it’s definitely an area where we have the opportunity to make a difference and make an impact in those people’s lives, and really give to them and they have a lot to give back to us.
So, while I’ve always found eating disorders interesting from the little I knew about them, I can’t say that I necessarily started by looking for a job treating them, and I didn’t really have a very firm grasp as to the depth and complexity of them until I started working here.
RO: Had eating disorders been covered at all in your grad program, or when you say, “the little I knew,” was that from life experience?
BM: A little of both. I have several friends who have struggled with eating disorders, and I was also aware of the stereotype versions of it just based on TV shows and movies and those sorts of portrayals; the “oh, they’re just afraid of food or have a bad relationship with food” idea that’s still unfortunately the stereotype.
My perspective and understanding is so different now, and when I hear people talk about this desire to find that one causal item that led them to end up with an eating disorder I just think, “It’s not about that; it’s so much more complex and akin to an addiction than it is to a fear that came from one event.”
“It’s not about [causal items]; it’s so much more complex and akin to an addiction than it is to a fear that came from one event.”
As far as grad school, we didn’t cover a whole lot. We had a biopsychosocial class that was really like the core foundation of my psych background, and then everything else mental health was [woven] into the program. My professors always said, “we really do have a really heavily based mental health program,” [but] we didn’t really talk a lot specifically about eating disorders other than kind of glazing over it as a DSM diagnosis and watching a couple videos from The Doctor or Doctor Phil or something.
RO: With that limited exposure, what was it like to start working at Hopkins?
BM: I was really blessed to have a mentor, who actually still works at Hopkins, who helped train me for it, and I spent probably a month and a half at least, if not two months, of getting to follow her around and get a better understanding of the culture, and then taking over bits and pieces with her there to support me if needed.
I’m very comfortable with the job now, but initially it was very overwhelming because — I don’t know if you’re familiar with Hopkins’ program at all — it’s very, very intense and a different culture — exemplified in the fact that we have a rule book that’s like 10 pages long. [The eating disorder program is] very structured in order to be able to address everybody’s needs.
RO: Would you mind telling me more about the program and how it’s structured?
BM: I work specifically in the inpatient [IP] unit, and then we have a PHP [partial hospitalization program], and then I occasionally take outpatients. But the inpatient unit is a locked psychiatric ward that’s shared with the adult affective disorder patients and the young adult affective disorder patients, which has pros and cons.
People who are significantly depressed may binge or restrict unintentionally without it actually being eating disorder behavior, which can have a complicated effect on the milieu, but it can also be good because patients are engaging and having the opportunity to socialize with people who are struggling with an illness that isn’t theirs. On top of that many people with eating disorders often have comorbidities of depression, bipolar, anxiety, so there’s a lot of good things that I see coming from those groups being together.
The biggest goal of having people inpatient is to do two things — the first is to break the cycle of the eating disorder behaviors, whatever they might be. Typically we see individuals struggling with various forms of bulimia, all forms of anorexia, and occasionally binge eating disorder. But because the people coming to the IP unit are going to be those who are more chronically ill and more acutely ill; most of them come with an anorexic diagnosis because they need to be medically stabilized before they can go through the refeeding process.
BM: One of the interesting things about eating disorders is that oftentimes individuals with them kind of want their support systems to give up on them, because they’re exhausted and just kind of want to call it quits and be done, especially if they’re struggling with anxiety and/or depression.
But there’s research that’s shown that people who have therapists/friends/family who keep on doing the dance with them for 10, 15, 20 years, still have a high rate of recovery. It’s just a question of whether you’re going to stick it out and do the dance with them for that long.
RO: By “do the dance” do you mean to stick around even when they’re telling you they don’t want you to?
BM: Right, so when they come in for help, we take the approach of “we want to help you get better even though you’ve left five times before [against medical advice],” and even though we know that we’ll probably see you again next year or the year after that.
For one of my current clients, this is actually my second time treating her but probably her fifth or sixth time coming to Hopkins. And each time she comes, a little bit more of her is ready and willing to change, so it’s especially crucial for us to say, you know, we don’t care how many times you’ve left and come back, because you’re willing to give it a shot again and we want to be there with you supporting you in trying to get back to those meaningful things in your life, actually find your identity in something else, to be that person you want to be, to have a real quality of life.
And seeing someone go back and forth like that can be really difficult and frustrating as both a practitioner and just as a person engaging with someone struggling with an eating disorder to that degree. We have to come and engage with them in a compassionate, empathetic, caring, client-centered manner without being like “dude, I know you’re going to leave early, I know you’re going to fall back on bad patterns.”
“Sticking with it is part of the reason why OT is another important advocate here.”
What things can we brainstorm through to overcome the barriers that led to relapse last time, or what things do we notice during our motivational interviewing that have improved or changed? I mean, even when someone is readmitted there is always something different from where we ended last time.
For example, this woman that I’ve been talking about: last time it wasn’t until her last week or two prior to leaving against medical advice that she was finally having real conversations with me about how to set herself up for success, and now this time within her just being here a couple days she’s like, “you know I’m so tired of the relationship I have with food, I’m so tired of the fact that it’s controlling my life and relationships, and that I don’t have an identity and I don’t even know who I am, I want to be able to leave here and not be so obsessed with food, I want to be able to leave here and actually be able to do the things I like and become a person again.”
Yes, it’s quite possible and even likely that within a week or so her eating disorder is going to be really pushing back against that mindset, but the fact that we started off on that note is a hugely significant improvement.
RO: Everything you just said is so encouraging to hear because that’s what the whole process is about: finding a little bit more of the self each time. It’s the eating disorder that is the motivation to leave AMA, not their “true” motivation, so sticking with them and saying “this part of the real you, I see that it’s here and I won’t forget, and when you come back that’s where we can start” is absolutely crucial.
I’m curious about what your role is specifically in the program at Hopkins; so few eating disorder treatment programs have OTs on staff so there doesn’t seem to be a standard role for us yet.
BM: In essence there are opportunities in all aspects of OT to provide interventions for this population, because the eating disorder can affect literally every aspect of their life.
So in the inpatient setting I meet with my patients once a week individually to work on the specific goals that we establish when I first evaluate them, and then we have a weekday group. The group includes a variety of things; ultimately I pick the topic based on what I feel the group’s needs are.
For example, one of my favorite groups for both of my populations addresses roles. We address the different roles they have, how each role has been impacted by their illness, and what they want that role to look like in the future. Then we brainstorm through the barriers of how do we actually make that happen. Because in treatment there can be an awful lot of talking about what’s wrong, and less frequently there’s problem solving as to how do we actually start tangibly fixing some of those things.
Another of my favorites is doing case studies with the patients where we have a made-up person who has stereotypical behaviors, which always ends up resulting in an interesting conversation. We usually have at least one person who is offended by the fact that we would even write a case study that’s so stereotypical, so that ends up being an interesting conversation because they’re like “I hate that you wrote down all these things that people just assume that people with eating disorders have”, and you’re like “well remember this isn’t about you this is about so-and-so, why do you feel like it’s impacting you to that level?”
And that usually opens up a lot of good group discussion as well because then you’ll have someone speak up and say, “Well, I know you said this is stereotypical but when I read this, this is me, this person is me.”
And from there we start to address questions like what environmental factors are continuing that disordered habit? What are practical coping strategies and changes that we can do to the environment to modify it in a way that’s going to be more supportive of recovery? What are things that we can start changing in that person’s routine while they’re in inpatient and in a safe but different environment, to carry over for when they go home?
How do we start making those practical small changes in order to make it more successful and easier for them to transition into the day hospital, where they’re going to have the opportunity to start getting time off and actually practice the things they’ve been working so hard to learn to implement while in inpatient?
RO: Is that focus on roles and transitions seen by the other professions on the team as an OT specialty?
BM: It’s hard to say for sure, but I feel like it’s something where they do recognize OT’s unique role.
In addition to those groups, something that I’ve begun regularly implementing since I’ve been working there is weekly meal prep groups. They have to plan the meal, and then we work together to prepare it, and so with that it gives them a lot of opportunities to begin figuring out, how do I do this without falling into the rigidity of the eating disorder?
We work on helping the clients learn how to estimate portions; the average person without an eating disorder wouldn’t measure out every piece of food – you would just plop what you wanted on your plate, eat what you wanted, and you would get enough nutrients without having to be obsessive about it. So to give patients real life practice of planning and eating meals in a healthy way, we do those OT groups weekly in inpatient and daily in the day hospital. And in day hospital they also go grocery shopping with OT, where they have to meal plan for the entire week.
Doing those OT sessions not only gives them the simulation of working through any anxiety and behaviors that may have occurred at the grocery store, but also getting real-life practice so we can address the questions, so how do I make this work, what was hard, what can I do to adapt this situation to make it more recovery based for me in the future, how do I work through this to be supportive?
And then we do all the meal prep, so they get practice doing breakfast, lunch, and dinner; we go and do a restaurant outing so they can have the opportunity to figure out how in the world do I utilize this recovery system when I’m not making my own food and I’m going out with people?
Nursing will also sometimes do take-out meals with them, but I would say that as far as the full meal-prep process, that is completely left to be done with OT, and our attendings definitely recognize that as a role that we play, along with figuring out meal planning supports for people when they go on days off.
RO: Are the experiential sessions like grocery shopping and cooking primarily used as a time to practice coping skills and distress tolerance, or do you also process feelings and associations that come up during those activities?
BM: All of the above. So I think of it a lot as using the PEOP [Person-Environment-Occupational Performance] model because of the fact that, you’ve talked and talked and talked about how “I couldn’t go grocery shopping before” or “I haven’t been in a kitchen in six months,” and so now we’re saying, essentially, okay, we’re going to go do this and we’re going to do it together, and it’s going to be supportive and you’re going to have your peers there supporting you too.
So let’s go into the kitchen and you guys have to work together to collaborate to figure out what we’re going to eat because that’s how making meals at home sometimes works too you know, like what does everyone want for dinner? Okay, how do we make this work?
And life-wise that’s giving them the opportunity to actually “do” and engage in the process, and to talk about “hey this is really difficult for me, I’m struggling, I need help,” or they don’t ask for help and everything goes to shit and you’re like “okay, so how do we work through this to be supportive next time.”
Like, I have a patient currently who has severe anorexia with binge/purge behaviors as well, so she attempted to do two different meal activities with us but could not manage her behaviors to not binge on the cookie dough and desserts when we were making things, to the point where it was not helpful for her to come to the sessions. We had to have a chat with her and be like, “you know, you’re not going to be able to come to this next one because of the fact that it’s not supportive for us to put you in that environment. We need to work with you to build up some more coping skills before putting you back there because it’s unfair to you to be setting you up for failure.”
Then two weeks later she was able to do the full meal prep, and the amount of effort that it took then for her to be able to manage her behavior was definitely still high, but she was able to get through it with just redirections without engaging in any significantly inappropriate behaviors. It wasn’t perfect, but there was definitely an improvement, and part of that comes from the motivation of you know, “I have a choice when we’re doing meal prep, I get to have a say in what we’re having rather than whatever comes up on the tray.”
RO: That leads to one of the issues I talked about in the first article; from my understanding, some people in residential settings aren’t yet ready for the kind of experiential interventions you just described, but those interventions become harder and harder to access as a person moves down the levels of care. In your experience, have you found that to be true with your clients?
BM: Yes, it is. Ultimately that’s why we structured our program to be as multidisciplinary and supportive as possible, the idea being that patients get to do the majority of refeeding and stopping the cycle of behaviors while inpatient, while they have 24/7 support, and then as they’re able to be medically stable, then we start gradually stepping them down to lower levels of care with less supervision.
I can think of multiple people who – and you kind of expect this to happen– are doing really well and then they get a day off, and something goes wrong. I mean, there’s countless things that can happen – skipping meals, over exercising, purging, etc. – but we set up supports so that way it’s not just this “oh crap, I just got a day off and I just completely bombed it.” And that’s really why the step down is just so crucial, because without transitional care like that, you don’t have the opportunity to say “okay, I floundered, let’s get back on board, can you please help me figure out what to do next time differently, to make this a little bit less of a disaster of an experience?”
“That’s why it’s so important, too, for people to have those opportunities to simulate things, to try and have the opportunity to fail before they’re out of treatment, because otherwise how in the world do we expect them to fully carry over those things, and how do we actually know if they’re able to implement the skills that they’ve learned?”
But ultimately, I guess the answer to your question is [that] it really depends on the patient, and if they aren’t ready to do those real-life OT sessions that the day hospital really highlights when they’re discharged, then they probably shouldn’t have been discharged. Or they should have been discharged with a plan to follow up pretty closely with OT in order to be able to do those tasks in a successful, supportive manner.
RO: In your current workload do you run a mix of individual and group sessions?
BM: I guess it depends on how you look at it. With my two services, I have between 12-14 patients at a time. I theoretically see all of them in a group five days a week, but then I also see all of them at least one time individually. So I’m doing quite a bit of both group and individual therapy.
RO: For the individual sessions, do you mind telling me a little bit more about the goals you work on and how those sessions differ from the group work?
BM: The typical goals that I usually come up with are the basic health and illness management goals: being able to identify triggers to eating disorder behavior, anxiety, and/or depression. I separate all those out, identifying the warning signs for each, and identifying appropriate coping strategies.
Then the next step that I take with that is actually implementing those strategies. It’s one thing if you can list them, but you have to be able to be in a situation – which once again goes back to the PEOP and how having those simulation opportunities – where you can demonstrate them or at least trial them and see if they do or don’t work.
So, at first when I started here I thought it was kind of an odd thing for OTs to be doing – identifying triggers and warning signs and coping strategies – but that’s so foundational to not only your understanding of the patient, but also insight into the patient’s own awareness. It’s really hard to expect someone to just change their behavior if they don’t even understand what’s causing the behavior, or what’s triggering it – kind of unfair.
So, that’s usually one of the basic ones, I also work a lot on figuring out how do we improve people’s role performance, how do we specifically include leisure and socialization back into their life, since that’s usually one of the first things to get cut [by the eating disorder]. We do some leisure exploration, I do a lot with making a balanced schedule, to figure out - how do I balance work, play, sleep, self-care, and make sure that I actually allocate time for meal planning, meal prepping, and eating the food.
And then, as I mentioned, I do the meal planning, so we’ll make grocery lists, we’ll practice going to the store, we will make meal plans just practicing diversity, especially if people decide not to or can’t afford to go to day hospital, to at least get some of those things trialed before they leave so they can have a plan when they go home.
I do a lot of different things, but those are some of the main ones. Cognition also comes into play in this work too. I have to do a lot of figuring out “okay, now is this person struggling with x y or z because they have early dementia, or is it because they’ve only been eating 500 calories a day for the last 2 months?”
RO: Earlier you mentioned the issue of motivation, and I agree that it is so crucial for OTs to address in our work because, even in recently published textbooks, I have read descriptions that lump true motivation and eating disorder motivation together when they’re not at all the same, so our lens of trying to figure out what actions and choices and reported beliefs are coming from a symptom vs. their true values and motivation is so important. I’ve been really encouraged to hear you describe the program at Johns Hopkins and the way they embrace that approach.
BM: Exactly. If you look at the OTPF, it outlines everything we do in mental health and especially in eating disorders; [in order to treat eating disorders effectively] you have to look at values and beliefs, you have to look at the habits and the routines and the rituals, you have to look at the ADLs, IADLs, you need to look at socialization and relationships, you need to look at tons of activity analysis and real-life participation, you need to grade activities so that they can actually be supportive, you need to look at whether we’re in maintenance, and how do we either keep it going or facilitate things to promote recovery further. And that’s why OT is the perfect avenue for this work.