Life in recovery

Episode 6: Life in recovery 

Sam:

Recovery from an eating disorder is possible.

This is the Butterfly: Let’s Talk podcast from your friends at Butterfly, Australia’s national voice for body image and eating disorders. I’m Sam, and in this episode, we’re looking at recovery with some practical tips from people who have actually done it themselves. But first, what does recovery even mean?

Mia:

Not using eating disorder behaviours to cope, that’s really how it’s loosely defined, I suppose.

Sam:

We don’t fully understand all the causes of eating disorders just yet. From a biological point of view, certain genes which affect food intake, appetite, metabolism, mood, and reward pleasure responses could play a part. We also know that certain personality traits could make people more vulnerable, things like perfectionism, neuroticism, and low self-esteem. So short of genetic engineering or a personality transplant, do we really have any chance of recovery? The answer is yes. But don’t look at me. I’m still on the journey to recovery myself. We’ve lined up a few people who have gotten there, and they’re more than happy to tell you how.

Sam:

In episode five, we spoke to Rupert, the town planner from Sydney.

Rupert:

First of all, you’ve just got to want to get better.

Sam:

Astrid lived with various eating disorders for more than 30 years.

Astrid:

There were times that I actually thought that I did want this. I did want to be well. And in hindsight, I look back and go, “No, you didn’t.”

Sam:

And Mia, who found recovery and now coaches sufferers to help them find their own path.

Mia:

We go food shopping. We go clothes shopping, especially when it comes to buying new jeans. “Please,” I tell all my clients, “don’t buy jeans without me for the first time in recovery.”

Sam:

On average, the data tells us recovery can take between one and six years, but for 25% of cases, it’s a far longer-term battle.

Mia:

I recovered from an eating disorder. Seven years ago is when I went into recovery, and I really had no awareness about eating disorders, the recovery process, treatment, nothing. So I started recording my experience through treatment and putting it up on YouTube.

Sam:

Mia talks about the lessons she learned through her recovery on her various social media platforms. We’ll put out details for those at the end of the show.

Mia:

What a waste of time and life and happiness and joy and love and opportunity and adventure and everything it is to fall into the trap of believing that you are going to be happy if you’re smaller, or that you’re going to feel more in control or more confident in yourself if you follow any kind of disordered rules, whether they’re eating disorder rules, or diet culture rules, this idea that you can’t start your life or pursue your passions or be happy or deserve love until you are fitting in this little box. I cannot express to you how distant I feel from that belief system and how much I know it’s not true. It’s like uncovering a conspiracy.

Sam:

Every person we spoke to in this episode tells us that the first step to recovery is wanting to get better, but it’s not always that simple.

Rupert:

You’ve got to want to do it for… whether it be for yourself or for the people you love. As much as I hated my parents at the time, they were definitely one reason why I wanted to get better.

Astrid:

It took me forever. I had my eating disorder for about 30 years. So when there were times that I actually thought that I did want this, I did want to be well, and in hindsight, I look back and go, “No, you didn’t because you were just fooling yourself that you actually had the intention there.” To want to get well is the key. That is the turning point, and you can’t pick when that’s going to happen for somebody. That’s where it becomes very individualised. But for me, there were several turning points in the progression of wellness, so to speak. The final one was really probably having my child and knowing that if something happened to me from this illness, that was the legacy I was leaving him.

Amelia:

It doesn’t necessarily work in a linear process. So, one day someone might be feeling very motivated towards recovery and be in action mode and reaching out and wanting that guidance. And then the next day the eating disorder might just become so strong and so difficult to deal with that that motivation goes down.

Sam:

We’ve spoken to Amelia before on the podcast. She’s from Butterfly’s National Helpline.

Amelia:

You know that when somebody is in a restrictive cycle, they’re not receiving the nutritional values they need to be able to function throughout the day. We know that obsession and thoughts about food and about the eating disorder can increase quite a lot, and it can become quite overwhelming. And so what can happen is that somebody can become very, very unwell and cognitively not be at the point where they’re even able to consider recovery or getting well, or even getting support.

Sam:

For someone who’s stuck in a downward spiral, recovery seems like a pretty big task, but our friends who have successfully recovered tell us that’s not the best way to look at it. They say to just look at the step in front of you without worrying about how many stairs there are to climb.

Mia:

I really just want you looking at the week ahead. Say for instance, somebody is delaying breakfast, they’re pushing off breakfast for hours in the morning, and we really want to get people eating more consistently and regularly. We might initially set a flexible goal to say, “Three to five mornings this week, let’s try to eat within 30 to 60 minutes of waking up.”

The following session, we look at the goal. How did it go? What went well? What didn’t go so well? And then we take the balance of that, and we apply it to our new goal this week. So it’s really incremental. It’s really evidence-based. It’s making people look at what’s actually happening versus what’s our anxiety afraid will happen, and then building that confidence over time as the brain is obviously rewiring and taking stock of that evidence. And yeah, those little incremental things that we work on move us towards those bigger, longer term goals.

Sam:

I can really see the benefit in having your little goals, rather than just looking at this massive mountain that you have to climb.

Mia:

And that is the struggle. With eating disorder recovery a lot of people come from a very, very perfectionistic temperament. So they will take the perfectionism that has really fuelled their eating disorder beliefs and behaviours to recovery, which is so antithetical to what the spirit of recovery is, which is yes, of course, we’re going to mess up. We’re going to slip up. We have to, in order to learn and make change. If you do it perfectly, there’s no room for learning. And if you’re not learning, then you’re not really changing. So it’s a really humbling experience for lifelong perfectionists to go, “Oh, wow, this hasn’t been working. This perfectionistic belief system doesn’t work, and I’ve of got to surrender to the idea that in order for me to get to the outcomes I want to get to. It’s a prerequisite. I have to be imperfect at this.” So yeah, that can be hard to get people to come to terms with but it’s very liberating when they do.

Sam:

It’s also easy to feel lonely or isolated when we’re working on recovery so experts tell us that having a reliable, unconditional support network around us can give us that little edge that we need to succeed.

Astrid:

That’s the strongest and the worst part of it, the isolation. The eating disorder thrives on the isolation and the longer it goes, the more isolated you become and the more damage it’s doing to your psyche. So that questioning of what is wrong with me, the longer you had the eating disorder, the more that becomes entrenched in how you’re seeing yourself. So yes, isolation was absolutely the biggest part. So even when I was connected in relationships and I’ve got a close, loving family, but that eating disorder was like a wall between us.

Sam:

Another thing people in recovery learn to address is this common issue of feeling safe in their disorder. For example, someone could acknowledge that it’s causing profound, emotional suffering, and they know that it could lead to severe physical consequences, but the idea of getting well just seems so overwhelming.

Rupert:

It’s easy for things to snowball and things just to happen out of habit. It’s like a lot of things in life. It’s almost like we’re a mouse on a treadmill just running around in circles, and we do things out of habit without actually stopping and stepping back and thinking about what we’re actually about to do. I think in life there’s a big difference between pleasure and happiness. Pleasure is this immediate reward but it might not bring you happiness in the future.

Astrid:

Because it is safe. It’s safe, it’s comfortable, it’s certain, it’s predictable, and it just gets integrated into your life. So yeah, resistance to change is huge, and you might not even realize it. I didn’t. Again, going back to the different levels of change, I thought I had changed. There were some things now I can look back and go, “No, I wasn’t willing to give those up at that point.” If you can think of it as a scale, the benefits of the eating disorder need to decrease, and the benefits to healing and recovery need to be weighed the other way before you start to really make that change. It’s almost that point where they’re both at the same level and something tips the recovery above the eating disorder, and that’s where you start to see real change.

Mia:

I felt like my coping mechanism, which it isn’t… If it was a coping mechanism, we’d be coping. But I felt like that was being taken as I was trying to also unravel all of this stuff that was scary and traumatic to go back and look at. And I just wanted something to keep me held together. And it was just realizing over time that not only had it not kept me held together, it had contributed to my depression in a major way. It worsened everything. It never fixed anything. It never made it better. It never gave me real solutions, and it just contributed to my decline. But that is a very normal thing to feel, to feel grief for your eating disorder, to feel like you are missing a companion or someone or something that protected you.

Sam:

We’ve talked a lot so far about how we need to want to get better before we can get there. But what if you don’t just yet? Or what if you’re not sure?

Amelia:

Not necessarily demonizing the eating disorder, understanding that certain behaviours and thoughts might be present as a way that that person has coped. It’s developed as, potentially, maladaptive behavioural traits for that person, but in some way it might be working for them or serving them. But understanding that they may, at the time of reaching out, have gotten to a point where it’s no longer serving them in the way that it has before, and they’re looking for things to be different. We often talk about the idea of what it takes to put the eating disorder out of a job. So again, not demonizing it and not necessarily telling people exactly what they need to do, but just being there to listen and support, and then hopefully guide them to a point where they might be open to receiving some more information.

Mia:

We know that people with eating disorders have very, very poor distress tolerance, and that’s why we end up turning to the eating disorder. So yeah, it’s really being able to find effective ways to manage our emotions. And it’s not necessarily the case that everyone’s going to work towards recovery. It’s really down to the individual of what you believe is possible for you, or what you think is your end goal. And I just ask people to keep their mind open to it, the possibility of no thoughts, no urges, and certainly no behaviours, and to not using eating disorder behaviours to cope. That’s really how it’s loosely defined, I suppose.

I do believe that certain areas of treatment and certain approaches we need to apply at the right time. It does require in part taking ownership of your process and realizing that yes, you can have all the support and all the resources in the world, but there is an element of just do it in recovery.

Sam:

There are plenty of barriers that can stop someone from beginning their journey to recovery, things like the shame caused by the stigma that still surrounds mental health and eating disorders, low mental health literacy, the fear of change, the cost of the treatment, or the accessibility of the treatment, which is particularly a problem for people who live in regional and remote areas. And where possible, experts recommend a multi-pronged approach. After spending 30 years trying to find recovery herself, Astrid now works as a peer support worker with Centrecare, trying to help others find recovery themselves.

Astrid:

Do you have a good GP that you trust? Let’s get you along to a group, if you’re interested. Start off coming to see me. You add then the nutritional side of things because you’ve got to look at all of it, physical, mental… for some people it’s even spiritual, and I would argue there’s a lot of that spiritual element to it. Social, that people have become very isolated through their eating disorders so they might not even say that they have a support network. So putting that in place… Identify who’s been there for you so far. Who do you trust?

Amelia:

Having supports at different stages at various points in their recovery journey is really important, even if somebody isn’t in a space where there might be what we call pre-contemplatives—they’re not necessarily in that kind of action, really strong recovery mode to be able to call and talk to somebody or have someone there that can support them and make sure that they’re feeling okay.

Sam:

And there’s one very important member of this team that everybody needs that we haven’t mentioned yet.

Astrid:

Find out who will be your hero. Everybody needs that hero that’s willing to go, “You know what? I don’t care if she or he screams until they’re blue in the face, I am not abandoning them. I will stand by them.”

Sam:

And the hero is a real person who you know who will be there with you, not like Russell Crowe.

Astrid:

He could stand by you. He’s not a bad guy, I don’t think.

Sam:

I’m sure he would if you asked him but he might not have time. He’d be busy.

Astrid:

That’s right. And look, you’re hearing from people… I also speak to people that don’t have family, and they don’t even have friends but they do have a dog that they love. They have a club that they walk into once a fortnight.

Sam:

And not everybody has access to a movie star, or finding that hero can sometimes be quite difficult. But if you need help assembling that team, the best place to start is the Butterfly National Helpline. The details for that coming up later in the show.

Sam:

Astrid also encourages people to look outside the traditional roles that make up a recovery team.

Astrid:

I spent many years just going, “I’m still not quite there. I don’t know what it is. I’ll know it when I see it.” So acupuncture, psychotherapy, what a lot of people might see as alternative, but it just expanded it. It was just expanding the learning to take it from my head to my heart to my body, then really understanding that eating disorder pattern or memory is still in my body

Sam:

A minute ago, Astrid mentioned the role of the hero. While we’re talking about heroes, we need to bring up the role of carers. Whether the carer fits the role of hero or not, they are a hero nonetheless. The role of the carer is one of the most important in any eating disorder recovery, and we’re not just talking about parents in this case. It can be a partner, a family member, a friend, or a sibling.

Mia:

The role of carers is extraordinary. It’s an extraordinarily challenging experience for carers. I think it’s important to preface that with those of you who are going through it and have people there to support you, this is a team effort. This is collaborative in a lot of ways. That doesn’t mean that support is absolutely essential. There are people who recover really doing it more on their own. That is absolutely possible. Nobody’s exempt from the process, but carers and supporters can be extraordinarily significant.

Sam:

Another key ingredient that most people we’ve spoken to on the podcast agree on is hope. You’ve got to have hope. You’ve got to truly believe that you can recover and that there’s a better quality of life waiting for you.

Rupert:

You need to focus on things outside of the eating disorder and outside of your body and outside of food in general, and just focus on other hobbies or other great things in life, whether that be travel, whether that be… You might be into ballet dancing. You might be into art. You might be into music, whatever it is. There’s so many great things in life that this eating disorder has stopped me from doing.

Sam:

Another source of hope is hearing stories from people who have been there and done it and beaten it, people who are in recovery.

Astrid:

That’s the benefit of the lived experience person, somebody who is properly recovered as well I might add, to be able to say there’s hope because it’s the hope that you lose the most of that this will ever change. I can remember years of never imagining a time where I wouldn’t be craving sugar, where I wouldn’t have those voices in my head. And I don’t literally mean voices, but anybody who’s been there knows what that is, that character in your head. I couldn’t imagine it. And so the few lines in the sand that made a difference for me, included people that said, “You can do this. And I know exactly what you’re talking about.”

Mia:

Looking forward to what is life going to be like after this thing? So I think once you give people that hope and that perspective, that starts to give them a mention and especially talking to someone with lived experience where I can say to them, “Oh, no, I get it. I get that you feel safer where you are. And I get that the future is the unknown.” But I’ve been in this space for seven years, and I have met zero respondents who have answered my question of, do you regret being recovered, with “Yes.” Not a single person in seven years has ever said, “Oh, this recovery thing is a real scam. I think I’m going to go back to my eating disorder.”

Sam:

How do you define recovery? Is it the fact that I haven’t relapsed for a few months? What does it mean?

Mia:

Well, I subscribe to the treatment philosophy that we can be fully recovered. So I would consider myself fully recovered for the last few years, which is an absence of behaviours, an absence of urges, an absence of thoughts. Do I still have bad body image days? 100%. I’m a human being. We can’t expect people with our eating disorder histories to not have bad body image days. But the way that I respond to my bad body image, my anxiety, my stress, isn’t linked to these old eating disorder patterns, because I’ve worked through those anxieties and those fears, and I’ve built up this toolkit of effective help-seeking skills, like reaching out to people. That’s a big skill. Being able to find effective treatment and resources, that’s a big skill. Being able to engage with healthy dialogue with myself, that’s an incredibly important one. Being able to distract myself to know that I can sit in those uncomfortable feelings and that nothing bad is going to happen, certainly not on the scale of me using an eating disorder behaviour. That’s going to hurt me far more than sitting in the emotion, letting it pass, distracting myself, talking to people about it, and letting it pass.

Sam:

To hear more from Mia or go to @whatmiadidnext. It’s all one word on Twitter and on Instagram or What Mia Did Next on YouTube. Now, just to recap on what we’ve learned about recovery so far. Firstly, you have to be invested. You have to want to recover. Then we heard we have to accept that it’s not all going to go to plan. A relapse isn’t a failure. It’s just part of the process. Take one step at a time. Look at the small goal that’s in front of you that you can achieve today rather than being focused all the time on the lofty goal of recovery. Reach out for support. Find that support network that works for you, and it doesn’t have to be the same as anyone else’s. Remain hopeful. Listen to the people who’ve been there before and believe that it’s possible for you. And the last one for the episode, be kind to yourself.

Astrid:

I think the ultimate thing of recovery with an eating disorder is that full acceptance of ourselves. That’s warts and all. And the warts might be a relapse, but I’m still on the path of recovery, and I’m still great just as I am. Eating disorders are very good at saying it’s black or it’s white. So you did that behaviour. Therefore, you’re back where you started. And that’s why it can take so long and be such a struggle to come out of it.

Sam:

For more recovery tips and resources, head to the Butterfly website, Butterfly.org.au, and click on the resources tab on the top left-hand side, and you’ll find plenty of additional information. You’ll also find a bulimia and binge eating self-help series, which I highly recommended. And you can find stories of recovery in the Butterfly blog, which you can also find at the top of the website. The number to call for the Butterfly National Helpline is 1 800 33 4363. That’s 1 800 ED HOPE. You can talk to a counsellor every day of the week from 8:00 AM to midnight Australian eastern standard time. They can provide free, confidential, nonjudgmental advice, or just have a chat. If you’d prefer to chat online, Butterfly can help you there. Go to the website Butterfly.org.au, or you can email support@butterfly.org.au.

Sam:

The Butterfly podcast is an Ikin Media production for the Butterfly Foundation. It’s written, produced, edited and hosted by me, Sam, with the assistance of Camilla Becket and Belinda Kerslake. The theme music is from Cody Martin with additional music from Breakmaster Cylinder. Thanks in this episode to Amelia, Astrid, Rupert and of course, Mia. And if you know of someone who you think might get some value out of this podcast, please share it with them. It’s available wherever you get podcasts.