In this podcast I talk about my personal highlights from the ICED conference presentation that I was part this year with Rebecka Peeples, Rachel Millner and Therese Waterhaus.
Rebecka Peebles, MD, is an Adolescent Medicine Specialist and Co-director of the Eating Disorder Assessment and Treatment Program at Children’s Hospital of Philadelphia.
Dr. Peebles is an assistant professor in the Division of Adolescent Medicine at The Children’s Hospital of Philadelphia and the University of Pennsylvania School of Medicine.
Prior to joining CHOP, she was an instructor at Stanford University School of Medicine’s Division of Adolescent Medicine, Department of Pediatrics, and was primarily involved with the Eating Disorders Program and the Center for Healthy Weight at the Lucile Packard Children’s Hospital.
Dr. Peebles’ research interests focus on the health outcomes of disordered eating in adolescents of diverse weight ranges, and how the Internet can be used as a vector to both help and harm young people as they try to approach a healthy weight. Her most recent work has been funded by the American Heart Association.
Dr. Millner is a licensed psychologist in the state of Pennsylvania. She graduated from the California School of Professional Psychology (now Alliant International University) in San Diego and completed an APA (American Psychological Association) approved internship at the University of Buffalo.
Dr. Millner completed her post-doctoral training at the University of Pennsylvania in Philadelphia, PA.
Dr. Millner is a member of the American Psychological Association, the Pennsylvania Psychological Association, the Philadelphia Society of Clinical Psychologists and the Lower Bucks Chamber of Commerce.
In addition to her private practice, Dr. Millner has taught at the University of Pennsylvania and is currently teaching at Gwynedd Mercy College.
Dr. Millner’s website: http://www.rachelmillner.com/aboutus.php
Therese has been a Registered Dietitian for nearly 30 years, she completed her doctoral degree in nutrition biochemistry, studying vitamin D and bone metabolism. She has been in private practice for over 9 years and has been involved in the eating disorder community for over 15 years. Her goal is to bring to the local community the most recent information about eating disorders.
Therese’s website: http://www.willamettenutritionsource.com/
Hello there and welcome to this weeks podcast. This week I’m going to talk again about adult treatment that involves families and I know I harp on about this a lot but it’s a discussion topic that I think is very important to me and it seems to be quite relevant to a lot of people that I work with. Because I work with adults that are in recovery.
I recently did a presentation on this at the ICED conference which is run by AED it was at Chicago this year and I was presenting along side the wonderful Rebecka Peebles, Rachel Milner who you’ve heard on this podcast a number of times and Therese Waterhaus who has also been on this podcast a number times. So I’ve actually was going to today run you though that and just the key points that we made in this presentation. It was an hours presentation so we’re not going to go through all of that but I just want to take you though what I think are the key points here.
So our presentation was titled ‘Why Go it Alone? How Family Based Treatment of Young Adults with Anorexia is Possible and Productive in Reaching Full Recovery’ and we actually started the presentation with a 5 minute audio clip which I’m going to play at the end of this. But that 5 minute audio was, some of the voices you’ve heard before on this podcast, you’ve heard Simon’s Cat before, talking about how she went home in her 30s to be with her parents and there’s also some new voices on there which you may not have heard before. But this 5 minute audio is just clips, one minute clips of different people talking about their experience of being an adult and working with families. To help them get to where they needed to be in their recovery so it’s kind of cool.
Now Rebecka Peebles who if you don’t who Rebecka Peebles is, she is a clinician and she is just absolutely, she is one of those fabulous people. She’s a doctor and she works with people with eating disorders and she was talking about how families from a clinicians point of view, how families can be a part of the process, even if they are an adult.
One the things that she spoke about that I really liked was she brought up this idea that I think is sort of out there that when somebody is an adult, when they are past the age of 18 it’s not developmentally appropriate for their parents or family to help them in recovery. I’ve heard this plenty of times, I’ve heard this from a therapist of one of my clients a couple of years ago who’s parents were thank goodness very involved in her recovery and my clients own words were my parents have kept me alive despite the fact she was 30. A new therapist whom I was asked to talk to, the first thing she asked me was did I think it was appropriate that this persons parents were still involved and I said yes, absolutely they have kept her alive and she would tell you that herself.
It just shows that there is this feeling out there that it’s not developmentally appropriate for somebody’s parents to be involved in their recovery and what Rebecka really brought to light was that it is developmentally normal at any age for a person who is ill to lean on their family members for support and have family members help work them towards health. I think there is just such an important point, families can be dysfunctional, that’s absolutely true. Families can be much less than perfect but I think unfortunately those sort of circumstances or fortunately those sort of circumstances are a minority and for the vast majority of people although we might argue with our families or they might not be perfect, they are people who love us and people who want to help us.
Families stick together and families help each other through the tough times and so who else should be there helping you when you are ill, if it’s not your family? So it’s entirely appropriate no matter what age you are that if your family want to help and if they are able to help and if it’s a good thing for you and them that they help, of course it should be. So that was I think my favourite thing that Rebecka brought up.
She talked a lot about the sort of more clinician side of thing and skill sets for FBT and she talked about when parents shouldn’t be involved and there definitely are cases like that. Which might be the side of people who’ve had abuse in early childhood and of course you’re not going to involve someone’s family in that sort of circumstances. She also tackled this notion that somehow, this is not just a notion, that somehow parents are automatically told to butt out and it’s thought of that it’s not OK for anybody apart from paid providers or peers, it’s not OK for family to be apart of this which I absolutely disagree with. I think that family can be a very important part of recovery if they are there and if they are able to help.
Then we had the wonderful Rachel Milner and Rachel has been on the podcast as I said a couple of times. We usually talk about Health At Every Size type things. I will link to her in the show notes of this episode but one thing that was really interesting that Rachel brought up was the difference between marketing for treatment programs for adolescents and adults. In the adolescents programs they are marketing to parents, they are putting in their marketing things like, as a parent or family member you play an important role in a successful treatment outcomes and then we move on to the marketing for adult programs and it’s more along the lines of, these sessions can allow for honest discussions about family rifts and stuff like that and it’s so different right? When we are talking about adolescents we’re marketing to the parents so we’ve got to sell to them that they can be involved and that they’re important part of and then as soon as somebody’s over the age of 18, oh we’re not marketing to the parents any more so we don’t have to market to them we can just tell them all that they shouldn’t be working with their families and xyz. That maybe really subtle but I think it’s definitely there and Rachel really talked about it doesn’t have to be all or nothing thinking.
We can foster as she put it, independent and include family’s. It’s not that if you are using your family’s for support, you don’t have a brain, you don’t have a mouth and you don’t have anything to do with your recovery, you are completely at the mercy of family. No it doesn’t have to be that way. It should be this big team effort. If you are an adult. You are the one that should be building this team of how and who are these people who are going to help me recover. It doesn’t have to be this sort of black and white. It doesn’t have to look like anything black or white at all.
Then Rachel also told some of her personal story as did I and I think that most of you have probably already heard that or read about it one thing that I spoke about ass being really important to me is that yes I did recovery without any treatment, without any family help and if I could go back and do it again, I certainly would not do that. If I could go back and do recovery again I would absolutely 100% without a doubt would walk straight into my parents house and ask them to refeed me and honestly it was my pride that stopped me from doing that. Pride and pigheadedness. And of course fear, I was scared and I know that the way that I recovered was slightly different it has enabled me to learn a lot and has enabled me to share a lot of information but that’s still not what I would do if I could do it again.
I think that that’s very important for people to understand that this whole notion of recovering on your own is better is complete crap. Why would that be better? Recovering with support as much support as possible, the correct kind of support, effective support that makes you feel like maybe I’m not going absolutely crazy. That’s has got to be better. The other part of it for me is that anorexia turned me into a complete nightmare and I was just pretty awful actually to my family and I’ve kind of like forgiven myself for all of these things and I know it was because my body and my brain was absolutely starving and that makes one quite irritable but my family have never being anything but loving and wonderful towards me and one of my biggest regrets is not allowing my mum to refeed me because she of all the people in the world deserved to see that happen.
And yes, in the refeeding process I sat there and ate entire chocolate cakes and tones and tones of food and I really wish right now that she had been there to see that and I think it would have been really cathartic for her as well to see that sort of things. Just I think it would have been wonderful for her after 12 years of trying to get me to eat more for her to actually have been part of the process of refeeding and eating more and I was too proud and stubborn and all that. I didn’t let it happen and I absolutely regret that. I think it would have been healing for the whole family to be part of the whole process for me. And if I could go back and do that again, I absolutely would.
I also spoke about working with adults, the with part is really important, you can’t work AT adults when you are helping them recover. It’s just that actually, you are helping someone recover. It’s not about you sitting there and telling them what to do because they’re and adult, they don’t have to, they can walk out. Its about working with someone and whatever that looks like and I think that again it doesn’t have to be this kind of, oh you’re either, if you’re working with someone you’re totally allowing their eating disorder to run riot and allowing them to restrict, no lets give people respect.
When an adult wants to recover, they want to recover. They are trying. They want to do it and so it is this process of working with them as a team and for those people who think that type of person doesn’t exist, I’ve worked with hundreds of them at this point, people who want to recover they just need support and help in doing that. So that’s not about saying you shut up and sit down, I’m going to tell you what to do. That’s actually working with that person to say, of all your life experiences so far, what do you know about your eating disorder? What have you learnt about past treatment attempts? What have you learnt about past when things haven’t gone so well? What can we learn about that because the person who knows most about an adult with an eating disorder IS the adult with the eating disorder. They have lived through years of it, they know where it trips them up. They know what things in the past have actually been successful and helped them move forward in recovery and they know where things fell apart and what they should have had in place in order to not all it to full apart.
So that is what working with somebody is all about. And I think that if you are an adult in recovery and you feel that you are not being worked with that’s where you’ve got to kind of work out, OK I’m the adult here, I’m the person in recovery, I’m the person whose life I’m trying to get fully recovered so I have one. It’s all about you actually. It’s all about putting together the support that you want and if you do decide, OK well actually the support that I want are the people who know me and love me, then that’s exactly what you should do.
And that is what Therese Waterhause who was the 4th member of our presentation, she really went on to talk about some case studies, she told a story about refeeding her daughter and then how that changed as she was an adult. One point that Therese made that I thought was really wonderful, was that parents can be helpful in reminding their adult children were like before their illness and that’s super to me because one thing that I used to use to guide me, when I was trying to work out what the right decision was, what would I eat right now if I wasn’t making an anorexia based choice? Because I knew myself as a 16 year old, I was 17 with the onset of anorexia, I was able to ask myself what would the old me have eaten? It sure as hell wasn’t quinoa. And sure as well would have been a cheeseburger.
So that really helped me even as an adult, me being able to remember what I was like before I had anorexia really helped guide me when I just didn’t even know any more what I wanted. And I think that for many people, they are much younger than I was when there eating disorder starts. Most peoples starts in their early teens and so you might not remember what you were like, or what your food preferences were like or that you used to just spend all day Sunday in your bedroom on your bed, chatting to friends on the phone. You might not remember that about yourself, rather than going out to the gym or going running or doing the things that you do when you have anorexia. So having people there who knew you before, who can remind you who you used to be, can be very helpful. When you’re trying to make those decisions and you’re trying to figure what does the real me want.
Anyway, those were my favourite parts from our presentation. Look I am fully aware that not all of you listening to this are able to use your family for support. I’m fully aware that for not everybody listening it’s going to be appropriate. Or even safe and I’m really aware that for many of you, it’s just not going to be logistically possible, it might be geographical reasons, you might be across the other side of the world, you might have family members who are no longer with you, there are lots of reasons why you may not be able to use family support but here is where you get to kind of like take that word family and you get to turn it to mean whatever it means to you.
Family means the people closest to you. I know that most of us define the word as who are closest to you as in relatives, genetics, but it really just means the people who are closest to you. I was too proud to use my actual genetic family for support but in many ways I did use friends for support most of the time, they were quite unsuspecting. I used friend as meal support, who didn’t even know they were being used as meal support, for example things like the first time I went to eat pizza in recovery and I knew that unless I had someone there sort of making me do it, I wouldn’t do it so I called a friend and said lets go and get pizza tonight and he said yes because he would always eat pizza and he came over with pizza and I was locked in.
And that’s what I knew I needed to do, to make myself accountable by locking myself in. So there are some ways that I used support even though that support didn’t know they were support but even better, is if you are sitting here and you’re listening and thinking OK well I have to do this really difficult thing. I have to recover from an eating disorder, which is very hard. It’s not rocket science, it’s a process of eating more food and going against all of the rules that you have an rewiring your brain, but it’s just scary isn’t it? And so if you’re sitting here thinking this is what I’ve got to do and there’s no choice this is what I have to do if I want to fully recover. Then also have a think about, well maybe I can’t use my direct family but what can I use? There’s always an answer and you’re a smart person, I know that you are, I know that you can figure this out.
It’s a process of just working well what do I need to make myself successful, to ensure that I am successful in this process. What do I know about myself to know what I need? What do I know about my eating disorder and know where it trips me up and know what to put in place to pre-empt that and make sure it doesn’t happen. So then working out what you need and then from there, working out how you can fill that need and that might mean professional help just the best help that you can get in your circumstance.
But it also might be that you’re going to use peers and family. And the good thing about family is if you do have family that can help you and if you do have family that are willing to help you and you do have family that you are willing to be helped by, that’s not going cost you a heap of cash. It’s often more accessible than a lot of expensive support is. And that’s also one of the most important things as recovery as an adult that’s different from a child that you might have life circumstances that mean you can’t just drop everything and go off to a treatment centre, you might have people who depend on you. If you’re a parent for example, so sometimes life throws things at us which means that we can’t do what the recommended ideal path is supposed to be. It doesn’t exist and you’ve got to think about how you can make it happen, because you can make it happen.
The good thing about family support is that it’s not going to cost you an arm and a leg and often if you have close family that’s going to be even better. But like I said, if you don’t have close family that doesn’t mean that you can’t use the support of friends and other people and even peer, even online support I think a lot of time as peer support as one big family support system for people who get it and people who want to help one another get better.
So next week, well the next couple of weeks actually I’m going to be talking to people about Health At Every Size so we are going to have a couple of Health At Every Size podcasts. If you have any particular questions that you have about that, then send me an email, it’s firstname.lastname@example.org or send me a tweet @love_fat_ Cheers and until next time cheerio.
Oh silly me, I almost forgot here’s the clip that I’ve been promising to play you for the whole podcast.
Here are recovery voices:
Ignore the beginning bit because that’s for the conference.
This audio is to accompany the talk given by Rebecka Peebles, Rachel Milner,Therese Waterhuas and Tabitha Farrar at the AED conference 2018. The conference is titled ‘Why go it Alone? How Family Based Treatment for Young Adults with Anorexia is Possible and Productive in Reaching Full Recovery’.
The following voices that you will hear are of young adults with anorexia in recovery and one voice of a parent of a young adult with anorexia who is in recovery.
The first voice that you will hear is an adult male in recovery from anorexia.
Tabs: Do you think that your parents could have been of more help to you if they had received support and education themselves on an eating disorder?
Male: Oh yes definitely. I think that can go for not just my parents but my friends and my grandparents. And my brother I think if my parents knew exactly what goes on inside my head and had a better understanding of what was happening they probably could have helped me more and that goes for my friends, grandparents, anyone. That goes for anyone who knows me personally.
The second voice that you will hear is an adult female in recovery from anorexia. She is telling the story how at the age of 30 something she went back home to live with her parents for refeeding.
2nd Voice: I just needed more help because I could wake up and say today’s going to be different, go into the grocery store and leave with the same oatmeal and yoghurt. And I can remember when I gotten to wits end and I literally can not do this. I can not do this by myself, I need more help and I was petrified. I didn’t want to go inpatient because I could see myself being one of those cases that was the rotating door. I was petrified of going and restoring weight and just getting kicked out and relapsing all over. I didn’t want that, I wanted I guess I just needed my parents. My partner had been doing everything that they could but they have their own job, they can’t be with me 24/7, we’ve got to make rent, you know? I could easily lie or hide food. I need extra support and I didn’t want it form people I didn’t know. I wanted it from people knew me from before I got sick. They came into therapy with me, my dad would distract me like no other on the way to the nutritionist on the way back from dinners out. They drove me everywhere because I didn’t have a car there we really got to have quality time and it was amazing. It was really really really hard but it needed to happen but I couldn’t have done it without them.
The next voice you will hear is a parent who helped in the refeeding process of her adult child. The question I asked this parent was why did she think that it was both affective and relevant for her and her husband as parents to help their child who was an adult in recovery.
Parent: Well one is that we probably know our child more than anybody else and so because in recovery it’s very easy for the child, well not even just a child, the patient I guess to fall back into eating disorder behaviours we are able to identify when those behaviours are not our child’s norm. So that’s really important, we can identify that and I think every person it’s helpful to have a person that keeps them accountable and so when we are able to identify those things, that’s a whole other topic of how you approach that. But being able to keep them accountable is very helpful to them, not only does it help keep them on track but I think there’s a comfort in that, that there is somebody who is really looking out for them and that they are not doing it alone and that they’re not expected to be doing it alone.
That’s a huge responsibility even as an adult when we put that responsibility on an adult, it’s just comforting to have that person to walk that road with. I think as a parent, it’s a relationship that’s unique to any other relationship that t hey would have even if it’s a friend. And then things like, meal planning and meal preparation and eating with the patient, all those things are really helpful too so they are not feeling like they are managing this on their own. I think knowing what the meal plan is on a daily basis is really helpful for patients so that when they are tempted to restrict or they are tempting to fudge on their meal plan. If you know what the meal planing is and if you’re able to identify by watching them prepare their meal or eat their meal or anything like that, it’s another place of accountability that they can find comfort in. Just helping them stay on track when they are tempted to fall of the track.
The next voice you will hear is the adult daughter of the last speaker that we heard.
I think if the parent or the family or whatever truly wants to help the child and they want to learn and know how they can best do it. I think it’s a game changer I think it’s the absolutely the most effective way for the child recover and not just to recover to get to a point where they’re hitting the numbers you know? Because you can do that in a hospital centre, you can do that through a feeding tube, you can get to the weight, an adequate heart rate, go two months without exercise without having the support system but I think having the support system of your family is what pushes you over the edge and puts you in a place where you are actually trusting and comfortably because you are comfortable hearing someone who you know loves you say, this is not OK, we are going to get through this together, we are going to get to the other side and you kind of see that whole process. It’s just different when it it’s someone that you trust and who loves you even if you hate them in that moment because they are telling you what you don’t want to hear or know. It’s so different to having it be just a therapist, or just a dietitian or just a nurse practitioner who’s trying to get you to go through and do the actual stuff. When it’s a family member.