When recovery isn’t linear: Hope for your longstanding eating disorder

Yvie: [00:00:00] This podcast is recorded and produced on the land of the Wurundjeri Woi-wurrung people of the Kulin nation. We pay our respects to their elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander people who may be listening.

Welcome back to another episode of Let’s Talk a podcast from Butterfly Foundation. I’m your host, Yvie Jones, and today we’re diving into the realities of living with. And managing a longstanding eating disorder. So many of us live in that space between acute illness and full recovery. We wanted to know what that means for our lives.

We’ll be joined by Mallary to Tenore Tarpley, author of Slip Life in the Middle of Eating Disorder Recovery, who shares her own lived experience with a long-term eating disorder and her ongoing recovery full of slips and setbacks. We will also hear from [00:01:00] Dr Jennifer Gaudiani, an expert in treating complex eating disorders.

Dr Gaudiani, otherwise known as Dr G, is the author of Sick Enough, a Guide to the Medical Complications of Eating Disorders and shares how clinicians can create a sense of unified purpose with their clients in order to support long-term health and wellbeing. Recovery isn’t about perfection. It’s about progress, patience, and self-compassion.

Now, Mallary, let’s start with your story. Please tell us about your eating disorder, how you believe it may have started, and how long you’ve lived with the condition.

Mallary: Sure. So my eating disorder started when I was an adolescent. So my mother was sick with metastatic breast cancer for about three years, and we always held on to hope that she would be fine.

And even when she was sick and he metastasized, she continued to tell us that she was a soldier in a battle and she was going [00:02:00] to be a okay. So that was the narrative I held onto. And so when she passed away, I was not okay, but I pretended to be. So I ended up going to school the day after she passed away.

I read the eulogy at her funeral without crying, and I was praised for being strong and resilient. But behind that happy facade, I was this young girl who was at a loss of what to do, and I found that the more time passed, the farther away I felt from my mother. At the same time, I was taking a health class in the seventh grade and we were learning about quote unquote good foods and bad foods, and we were getting weighed in front of the class, and I was beginning to learn that my body could change depending on what I put into it.

And so I had conjured up this idea as a 12-year-old that maybe if I stayed the same size I was when my mom was alive, I could somehow be closer to her, which is a very complicated thought for a 12-year-old to [00:03:00] have. But I believed that at the time. And so I started to restrict my food intake, not as a way to be skinny, but really as a way to be small and safe.

And so in some ways. Food restriction became this warped form of time travel, and for a time it did make me closer to my mom, or it made me feel like I was closer to her because I ended up in the hospital, which is where I always remember my mom being. She was so often hospitalized when she was sick, but ultimately, the disorder left me feeling more out of control than ever and farther away from my mother than ever.

I spent several of my teenage years in and out of treatment, um, was hospitalized multiple times and in residential treatment for about a year and a half, and then ended up leaving and was really wanting to achieve full recovery. But this was the late nineties, early two thousands, and. It was never really described to me or defined.

I didn’t know what full recovery was, nor did I know about the possibility of relapse. [00:04:00] And so I maintained what I thought was full recovery for about two years, but then ended up, uh, relapsing in college and fell into this vicious cycle of binge eating and restricting my food intake and didn’t know what was happening.

Didn’t know that this is common. When people are sort of in the earlier stages of eating disorder recovery, and so very much felt like I was failing at anorexia and at recovery, and it wasn’t until later on in my late twenties when I began to actually get out of this cycle and really give myself more grace in my recovery, I began to not see it so much as a perfectionistic ideal.

But more is this ongoing work in progress, and so that’s where I see myself today. I am far better than I ever imagined I would be, but I say that I’m in recovery because I still do grapple with the imprints of my disorder. I still slip sometimes, and I live in what I call the middle place, which is this name I’ve given to this liminal gray space between [00:05:00] acute sickness and full recovery.

So I every day am trying to make choices and service of recovery.

Yvie: You’re speaking of today, you’ve described recovery as messy, non-linear, and full of nuance. How do you understand recovery today compared with when you first began your journey?

Mallary: When I first began my journey, I had developed a lot of coping mechanisms in residential treatment for kind of moving away.

Some of the pernicious eating disorder behaviors, but I found that when I left treatment, I really was intent on being the poster child for full recovery. And I thought that I had to really be perfect at it. I was petrified of making one wrong move because I thought, well, if I make a mistake, um, if I somehow falter, I’m going to fail and I’m going to end up back in treatment.

And that was a really terrifying place. To be sort of living in these extremes of thinking that either I was fully recovered or I was going [00:06:00] to mess it up somehow and end up acutely sick again. And I’d wish that I’d known that there was a space in between. It was not talked about in treatment, and it was not really present in any of the books that I had read, which at the time were mostly written from the perspective of people who were fully recovered.

And there was this lack of a married image where I didn’t see my own story reflected in those narratives. And so now I think about the fact that slips can actually be opportunities for growth and they don’t have to be grounds for failure. And years ago, every time I would slip, I would end up sliding.

And so I was always sort of caught in this slipping and sliding and not sure how to get back up. And so now I think about my recovery as really being an effort and continuing to make progress and to continue to make choices in service of more recovery with the hope that day by day, more recovery will continue to lead to a fuller expression of it.

[00:07:00] So I very much embrace this idea that you can be better, but not all better, and within that you can still live a full life.

Yvie: Amazing. I couldn’t agree more. I’m going to bring Dr Gaudiani in now. I’ve got a question for you. You’ve treated many people with chronic or long-term eating disorders. Uh, what are some of the key medical and emotional challenges that come with these longer duration illnesses?

Dr Gaudiani: Yeah. First of all, Mallary, I just love listening to you speak. You express your story and your insight so beautifully, both in the written word and the spoken, so I honor you. Yeah. I’ve had the great privilege of taking care of lots of patients with longstanding eating disorders through my career.

You know, I’m an internist who specializes in eating disorder. So the things that I help folks work on are usually the medical impediments to making progress. That there’s a desire to take that little baby step in a direction that [00:08:00] is congruent with somebody’s unique goals and values, but then they find something physical blocks them.

Digestive complexity or hormonal issues, for instance, sometimes it’s. Psychiatric issues that have been made secondary, because everyone gets very fussy when someone says anorexia nervosa. And then they say, well, we couldn’t possibly treat other things at the same time because you have to fix the anorexia first.

And I get that perspective. I’ve said those incorrect words myself before, but what I’ve learned 17 years into the field is that. Sometimes major depressive disorder or PTSD or OCD get in the way too much to make the eating disorder progress. And so you’ve gotta turn towards those and use curiosity, creativity, a really strong sense of [00:09:00] unified purpose with the patient to say, Hey, what’s most in your way right now? How can I help you ease that barrier?

Yvie: Chronic eating disorders, Dr Gaudiani can involve significant medical complications. And you know, we were just talking then, but what are some of the key issues you watch for and how do you support patients to stabilize physically while addressing their emotional wellbeing?

Dr Gaudiani: So, you know, first I wanna tip my hat to the newer nomenclature of longstanding eating disorders, and this emerges from the lived experience community. Saying chronic has a feel about it that doesn’t have a lot of wiggle room and severe and enduring, which has been used in the literature as well. A number of patients say, yeah, I’m enduring, but I don’t know, am I severe?

And it sort of plays into the whole, am I sick enough element of it. And I think it also. Makes invisible those who [00:10:00] might not be in the worst moment of their eating disorder, and yet they deserve our attention and our compassion, our interest, our dedication. So I really love long standing as a neutral timeline descriptor, and I think that I love to approach patients’ barriers at a couple of different levels.

The first one being that my partners and I always start by asking. What are your goals and values? And so often those who have longstanding eating disorders find that their practitioner will be quite assumptive. I know what’s wrong with you. I know what must have gone on in the past. I know where you are right now.

I know what’s getting in the way. And the truth is every human is so unique and the goals that people have. Vary as widely as fingerprints vary. You know, each person really knows best what they want. So [00:11:00] even when we start there and somebody might say, gosh, I’m in my late fifties, and what I’d really like to do is be well enough to support my daughter through her pregnancy, or I’d really like to be able to get back to the sport that I used to enjoy and they’ve not had an opportunity.

What do I want? And to be able to name that and then to be asked, great. What’s in your way of that? Because again, even if I ask goals and values, if I’ve not asked them what’s in their way, I’m gonna make an incorrect series of assumptions. So the very fact of asking first and delving into that feels important.

And then. With regards to medical complications, I might be diagnosing somebody newly with mast cell activation syndrome, which is an increasingly recognized allergic ish symptom that can make one feel allergic. [00:12:00] Even when eating food. I might find out that the amount of bloating and nausea and constipation is so much in the way that they have a hard time making the next step nutritionally.

There’s a whole panoply of medical things that we treat that I see routinely, but it just always starts with the patient.
Yvie: This makes sense, especially if you understand a person’s goals and even barriers to recovery, you may have a better sense of how to support them through times of relapse. Mallary, you’ve spoken about the idea of slips, which is also the name of your book, being a part of recovery. What does that mean and why is it important to normalize slips and move away from the all or nothing view?

Mallary: Yeah, so I titled my book Slip because I wanted to really try to remove the stigma and shame that often surrounds this word. So initially it felt very bold. And I remember at one point I had interviewed a clinician who said, I would [00:13:00] not title the book slip because it has a really negative connotation in our field.

And I said, well, that’s precisely the point, right? I want to try to remove. That negative connotation and to show that slips are a normal part of the recovery process and it’s actually a sign of recovery when you can admit that you’ve slipped for so long. I didn’t admit that, and I kept my slips really shrouded in secrecy.

And we know that secrets can keep us sick and stuck and for a long time I was stuck because I didn’t feel like I should be slipping. I thought, I’ve spent so many years in treatment, I should be beyond that. Right. And so now as a woman in the middle place, I really try to speak truth to the slips, and I try to talk about in the book and just in conversations with people about the reality that slips happen and not always just in the initial aftermath of treatment, right? Or not just in the midst of treatment, but they [00:14:00] can happen in an ongoing capacity. And so when you think about that very word slip, it suggests some sort of forward momentum, right? Because you can’t slip if you’re standing still. And as a writer, I always like learning about the etymology of words, and the word slip actually comes from the middle English word slip in, which means to move forward softly.

And I love this idea that often in recovery. We are moving forward softly, right? And so a lot of times when we’re moving forward softly and we’re making choices that are in service of recovery, we are going to slip because it’s hard, right? Recovery is not easy. And so I always say that. When you slip, rather than being secretive about it or staying silent, think about why did this slip happen? Who can I talk to and how can I get back up now, not next week once I pass my deadlines, not next month, but how do I try to get back up now? And so that has been [00:15:00] a motto for me, just in my own recovery. And I’m trying to help other people to really give themselves grace when they have these moments of slippage.

Yvie: Dr Gaudiani. Many people with longstanding illness have been through treatment multiple times. How can clinicians help rebuild trust and hope for those who feel they may have failed recovery? And how does your approach differ from traditional hospital or program-based treatment?

Dr Gaudiani: I really like to say that patients don’t fail recovery.

Recovery fails them, and that. The human themselves in the wholeness and complexity and deliciousness of their soul and heart and mind are also not the same as the eating disorder, that they are interwoven. But there are key differences. And so the first thing to say is that higher level of care programming can be incredibly valuable, lifesaving life changing.

It can [00:16:00] also for some. Be really difficult. It can be quite traumatic. It can reduce autonomy and a sense of control over one’s destiny in ways that big picture are worse than not going in the first place. However, when an expert outpatient team says. You have been trying so hard and we love you so much, but we’re not enough for you right now. Please go and get a bit safer elsewhere and then come out to us. We’ll be waiting with open arms that must be listened to, even if you know treatment doesn’t feel so great and, and you’re not excited or you’re even quite dreading it. I wanna make sure that people hear me say it can really be the lynchpin. Um, all that said, treatment fails to meet the needs of many different types of patients amongst them, those who are neurodiverse. [00:17:00] And you know, treatment might accuse someone whose leg jitters all the time or who paces around as quote unquote trying to burn calories to lose weight, when in fact they’ve got  ADHD or they’re autistic. This is a way of stemming through rhythmic moving, it often fails to care for people who have less measurable illness. I care for a lot of individuals that have very complex chronic digestive issues as well as masks, cell and POTS and hypermobile, and a number of other ones that really commonly co-occur with eating disorders, but which due to a lack of knowledge base residential eating disorder programs might be like, well, we’re not familiar with this set of medications, so we’re just gonna stop them while you’re here and you know, then the patient feels worse. And then they’re called a problem patient for talking about their somatic suffering. Or they’re even [00:18:00] told that they’re trying to seek attention through claiming physical ailments that they don’t have.

All of these responses are incredibly alienating. They are really gaslighting and. What’s interesting is that the field for years has talked about how those with eating disorders may have a difficult time naming their emotion, naming the feeling they have in their body. But what strikes me over the past few years especially, is that if those in power, the gp, the the therapist, the dietician have said, what you are claiming you feel isn’t real.

I’m not sure how a patient learns to put a proper label and wording to those experiences. And I think not only does it separate them from themselves, it separates them from those who are supposed to be there to help the the clinicians, because they [00:19:00] innately know at this really wise level, I think you are wrong, and I’m right. Here’s this power dynamic where I’m being told I’m wrong, and you’re right. And what do I even trust anymore? You know? So I think that, that those are, are pieces of treatment beyond just the frustrating, arbitrary rules and the rules that might be quite necessary for one patient, but that aren’t for another, and yet one has to apply, uh, similar rules across an entire milieu. I mean, those are just sort of the basic level. This is really challenging. We’re talking sort of the, the deeper rooted challenges. So, you know, I’m an outpatient physician and people under my care live in their homes and live their lives. And it was quite interesting coming from a hospital-based program where I controlled everything to go to pure outpatient for the last nine years where I control nothing.
And it is a matter of [00:20:00] really having that relational connection. That sense the patient has, that I profoundly respect them, that I see the best of who they are, and I hold with respect and compassion the places where they struggle, and that when I make a recommendation, they know it’s their body and they’ll choose it or not. My job isn’t to choose it for them. It’s to make sure that I’ve outlined what I think the benefits and I think the risks could be. And then they choose what it is they want to go forward with. It’s in that metaphorical and narrative and respect based experience that people can start to say, oh, this is really scary, but. I think I’m ready to take three steps in this direction.

Yvie: So what does progress look like then for someone who’s lived with an eating disorder for years, sometimes decades, and how do you celebrate or measure those smaller steps forward?

Dr Gaudiani: I [00:21:00] really try to stay right alongside my patient through the process. And while I am an internist who does love a measurable, I think that really what we try to do is measure. In movement towards what the patient wants for themselves. That sounds really difficult to grasp, but that’s actually what matters. They say, you know, I was able to sit at the dinner table with my family tonight, and I ate the same thing they ate. I knew I didn’t eat quite enough, but I didn’t have my own separate meal and I wasn’t walking around the kitchen the entire time that they were eating. And we say. Oh my gosh, that sounds really important. I also have to be careful though, because I have a huge amount of health privilege. I’ve not had an eating disorder before and I’m in a position of power and I’m a very enthusiastic person. So before I sort of set up a little cheerleader dance, when someone tells me something [00:22:00] that seems positive, I try to slow down and say, what did that feel like for you? I’m not their therapist, but they might’ve said it was torture. I hated it even though I knew it was the right thing to do. And so I wanna try not to impose my emotional response on them. And I’ve done it wrong before. I very memorably celebrated when a patient had an improvement in a chronic medical condition. It happened to be her diabetes and she said, Dr Gaudiani, I really appreciate your enthusiasm here, but, and she was so brave. I was so grateful. She said this. I worry that if my diabetes gets worse again, I’ll have failed you and disappointed you when you respond that way.
And I thought, oh, thank you. That’s so helpful. So before I can cheer them on necessarily, I’ve gotta [00:23:00] go slowly and recognize that I may be coming from a health list perspective where I have certain things that I think are good and they think are good, but. It may be more complex than that.

Yvie: You are meeting them where they are. Thank you so much for, um, telling us also about, I guess a failure of yours in, in your profession. Mallary, in slip, your book, you included a range of lived experience perspectives beyond your own. Why was it important for you to bring in those other voices?

Mallary: So I really wanted this to be a book that included a diversity of perspectives. I did not want this to just be a book that detailed my story alone, and part of the reason for that is because I do fit the stereotype of who struggles with an eating disorder and that I am live in a smaller body. I identify as. Female. I’m middle to upper class, and so I didn’t want to perpetuate stereotypes by only including my narrative. So I ended up interviewing over [00:24:00] 700 people with lived experience from 44 states and 37 countries, and all of these. Folks had different types of eating disorders, and so I ended up interviewing 175 of these survey respondents and clinicians and researchers. Dr Gaudiani uh, was one of the clinicians who I interviewed because I love her work, and so I wanted to bring together the latest research. The latest developments and treatment and these lived experience narratives together with my story really as the through line. Although I’m the main character, I’m bringing in all these other individuals and voices to really create what I hope is a well-rounded and nuance. Perspective on eating disorders and recovery. And I brought in a lot of voices from people who do find themselves in this middle place because I think traditionally their voices have been left out of literature and left out of conversations around eating disorders. So it was important for me to help them to feel [00:25:00] seen and heard, and also to really dispel some harmful misconceptions around who does and doesn’t struggle with eating disorders. I include just a wide range of people with all different types of lived experience. And that for me was really eye-opening because in some ways I naively thought I was an expert on eating disorders, having lived through one. And I began to do these interviews and realized how much I didn’t know. Um, there’s so much research that I hadn’t discovered and in the book, I really wanna make that research accessible to people who may not otherwise come across it. So that was important to me just in terms of making sure that this book had the biggest impact possible.

Yvie: I just have one last question for both of you. First for you, Dr Gaudiani, finally, what gives you hope in your work with people who have a longstanding eating disorder?

Dr Gaudiani: Oh, my patients give me hope every single day. That is an easy answer. You know, I’ve been doing this so long now, and what I love about [00:26:00] outpatient is that. Having been an English major in college and really loving a story, loving a narrative, I see my patients through all of the ups and downs of their lives, and I just get to be with them and bear witness know it alongside them. And so when they are in the darkest of the dark times. We’re together through that and they are, you know, surrounded by other clinicians, hopefully who are, who are wonderful and loved ones. But then when things turn and they do, we get to really celebrate what that looks like as they move back towards what they want. So it is the constant ever present witnessing. Of slips and then moving forward, that allows [00:27:00] me to know that forward progress is possible. You know, I think that if we got accustomed to everybody, slowly but surely walking a straight line from illness to wellness, we wouldn’t nearly as much appreciate the immense amount of work that goes into it.
The barriers that had to be surmounted. The life opportunities that you didn’t expect, but that make all the difference. All of a sudden the number of patients who’ve said, gosh, my sister just got pregnant, and suddenly everything’s kind of different for me. Or I realize I really wanna get this advanced degree, and the idea of going back to school feels really exciting.
Or for those who don’t have that opportunity, it might just be. I really wanna see that next episode of that movie come out because I really love that series. Like there are these little moments of these little bubbles of light that lead people on through the darkness [00:28:00] and. I’ve seen it so many times that it always gives me hope.

Yvie: Thank you, and Mallary, for you, the one with the lived experience in this interview. I’d like to end with you. Eating disorders still often misunderstood from your perspective. What do you wish the public and even health professionals understood better?

Mallary: Yeah, so I wish that they understood that eating disorders don’t discriminate. They affect people of all different ages and races and ethnicities and body types, and they’re not just a choice. I mean, no one wakes up one morning and says I’m going to have an eating disorder. Um, and similarly, recovery is a choice in some ways, but it’s so much more complicated than that one can choose Recovery. And yet that doesn’t mean that they’re all of a sudden going to be better. And so what’s really important is to recognize that someone is not failing and someone hasn’t necessarily given up on recovery if they’re [00:29:00] in the middle place. Um, so often. We just stigmatize this place rather than celebrating it. And rather than sort of helping people through this space, often it’s referred to as quasi or pseudo recovery. And I think those terms can be really toxic because they can make people feel as though they are somehow faking their recovery. That their recovery is not real. And so there are some terms that we’ve used in the field for many years that haven’t necessarily served people with lived experience as well as they could, and in some cases they may actually be causing more harm than good. So part of what I love about writing and about just being a writer is. That I can help to expand the language that we use to talk about recovery. And I really believe that we can do a great service to people with lived experience if we can think about just being more [00:30:00] inclusive in terms of how we talk about eating disorders. And the middle place does offer up this more inclusive language. It doesn’t have to be that. Right? We may develop our own words for describing where we’re at in our recovery, and the more expansive we can be in terms of the language we use to talk about recovery and the nuance that we bring to those conversations, the more we can open up new avenues for storytelling around recovery.

Yvie: Thank you both so much. That was just incredible.

A huge thank you to Dr Gaudiani and Mallary Tenore Tarpley for sharing their personal and professional experience with us today. If you are concerned about an eating disorder for yourself or someone you care about, please reach out to the Butterfly National Helpline at 1 800334673. That’s one 800 Ed. Hope for a free, confidential conversation with one of our specialist [00:31:00] counselors. Alternatively, you can chat online by visiting butterfly.org au and following the prompts at the top of the page. To find out more about today’s episode, check out the helpful links in the show notes. And on the Butterfly website, just head to butterfly.org au slash podcast and click through to this episode.

You can find links to both Dr Gaudiani’s and Mallary’s books in the show notes. Let’s Talk is produced for The Butterfly Foundation by Yvie Jones. Sam Blacker from the Podcast Butler, with the support of the Waratah Education Foundation. Our executive producer is Camilla Becket, with support from Melissa Wilton and Kate Mulray.