How’s life when your sibling has an eating disorder?

Jessica Coffey  00:09

I had it in my head for a long time that, like I was the key to her recovery. And if I could just find the right words to say to her in the right situation that I could turn it all around and she would overnight, be better.

Ranjani Utpala  00:25

The role of the sibling really is the support system. This is one of the toughest things that their sibling is going through.

Adam van den Bok  00:31

I could tell the change, I could tell there was something wrong. And I think it was not up until she was actually put into a facility that I realised that this is, hey, this is really serious.

Ranjani Utpala  00:42

Guilt sort of comes in, you know, siblings can experience a lot of guilt. “How can I be asking for my needs to be met?”

Adam van den Bok  00:49

Being worried about her heart stopping was definitely the scariest part of it.

Sam Ikin  00:55

We’ve talked a lot about how eating disorders have a devastating impact. And not just on the person suffering the condition. There’s a flow on effect for almost everyone in their network. And one of the most profound impacts tends to be on siblings. This is Butterfly: Let’s Talk from your national voice for body image issues and eating disorders, Butterfly. I’m Sam Ikin and thanks for being here again. When a sibling is experiencing an eating disorder, particularly when everyone’s still living under the same roof, they can feel an increased level of family stress and conflict. And they often have feelings of guilt, loss, sacrifice, and even isolation. They tend to have heightened awareness of eating disorder behaviours, and they often have an overwhelming sense of responsibility for their sibling.

Ranjani Utpala  01:41

We all know eating disorders do impact the whole family. This is an insidious illness that enters into the family and affects each person in a different way. My name is Ranjani Utpala. I’m the clinical director of the Butterfly Foundation, and I’m a clinical psychologist as well. And one of those very important part of the family that can sometimes not receive enough focus, both clinically and in research are, of course, the siblings. The impact that living with a sibling with an eating disorder can be quite significant on the sibling who is not affected by the eating disorder themselves.

Sam Ikin  02:21

Eating disorders are serious mental health issues. But they can also have severe physical outcomes, including death. Parents tend to drop everything and do all they can to help the sick child. This, of course, has a huge flow on effect for other children in the family.

Ranjani Utpala  02:38

Whenever there is a child that is sick, whenever there is a massive impact on the family, of course, it makes sense that parents will try and focus their energies and their resources on the person who is struggling at that point in time. You know, in the case of eating disorders, of course, it’s a life-threatening illness. So it makes sense that parents will throw everything they can at trying to address that. Sometimes the siblings can get a little bit lost.

Sam Ikin  03:04

It’s inevitable that lots of attention is going to be focused on the family member who’s suffering, which can leave their siblings feeling isolated and alone, which can severely impact their mental health.

Ranjani Utpala  03:15

And there’s a variety of reasons why their own social activities might be impacted, Sam. You know, it could be something as logistically driven as parents are busy with sibling appointments or not driving, they’re more able to coordinate their activities and as much as they used to be able to. But also, the other part of it is there is so much stigma still about eating disorders, that it’s reasonable a sibling may not want to go to a social occasion where others will ask them, hey, what’s happening with your brother, your sister, you know, what is it that they’re struggling with? And so they don’t want to go along because they don’t want those uncomfortable what can feel like uncomfortable questions.

Sam Ikin  03:56

Siblings play a big role in the recovery process, but it’s not necessarily a caring role. Our next guest experienced the pressure and sense of responsibility that siblings often feel firsthand.

Jessica Coffey  04:08

Prior to their eating disorders, we had always had an exceptionally close relationship. My name is Jessica Coffey, and I am 29 years old. I have two younger sisters who are five and six years younger than me who have both had very extreme eating disorders requiring a lot of hospitalisation and intervention. The three of us were always together. Always mucking around, we were very much a little threesome. And I’m really ashamed of the way that I behaved towards my sisters during their eating disorders. I think I was 16 at the time my first sister was diagnosed and I didn’t really understand a lot of what it meant and I behaved very poorly to them and blamed them for destroying our family and dramatic teenage things it’s taken a very long time to rebuild our relationships.

Sam Ikin  05:05

So take me through what life was like when you were living at home with two sisters who both had eating disorders.

Jessica Coffey  05:11

Well, my first sibling was diagnosed when I was 16. And then my other sibling would have been 10. So that was Nikki, Nikki and myself were very close while Laura was sick, because I suppose we had this shared experience of not really understanding what was going on with her. I feel like our household became quite volatile, there was always a lot of tension, it constantly felt like walking on eggshells. I think my poor parents were obviously overwhelmed and not really sure, particularly in the beginning, what the right steps forward were. And it was sort of like overnight, our entire family dynamic became about Laura, her eating disorder and meals, which had previously been, you know, a time that we all came together and sat down and talked about our day and laughed and joked around and now they were quiet and terse and inevitably, always ended in tears.

Sam Ikin  06:16

Sometimes in therapy, the focus tends to be towards the child parent relationships, while sibling relationships are not given all that much attention. Family based therapy, or FBT is the preferred treatment approach for young people with eating disorders. And it brings the whole family into the treatment plan. During FBT, families and clinicians are more likely to be aware of any risk factors facing the siblings, and they can spot signs of distress really early. Researchers tell us that the risk factors for a sibling with an eating disorder are elevated. So the family based treatment model is really valuable for both the person with the eating disorder and their siblings.

Jessica Coffey  06:54

Rather early on in Laura’s treatment, we started family-based therapy. So all five of us would pile into the tiny room and excruciatingly talk about all of our feelings for an hour. And as much as I hated that, at the time, I do feel like it was really an integral part of sort of our family healing.

Ranjani Utpala  07:16

I think that health care providers absolutely have a critical role in supporting the family. You know, family based therapy is about the family. It’s not just about the person with the eating disorder and the parents, it’s about the entire family network. Often to be able to support the entire family, including siblings, for clinicians this means that we might need to see the sibling separately, we might need to have separated sessions and so forth, which again, is not something that both from a financial cost barrier perspective, but also for other reasons might not be something that healthcare providers are necessarily able to do. So we have a role? Absolutely, we have a role. Each situation, each service will have to figure out how they make that work and how they are able to operationalise that I suppose.

Sam Ikin  08:05

So now we know that it’s vital that siblings are included in the family treatment approaches. But can siblings also be carers? Ranjani believes they can, but unlikely in the traditional sense, because sometimes sibling’s job should just be to be the sibling.

Ranjani Utpala  08:22

It really depends on how we’re defining the word carer, I suppose. Siblings are an integral part as is the rest of the family in supporting the person with the eating disorder. Now, the role of the sibling within that, while the parents are the ones who take over the refeeding, they’re responsible for all of the food elements of it, the role of the sibling really is the support system.

Jessica Coffey  08:45

I sort of took a carer role upon myself, which was not productive for me or her, and I think probably led to more conflict between us. And I mean, the second time around when my second sister had an eating disorder, I learned from that initial one, and I could be a sibling to her and a friend. But I couldn’t be a carer. When I tried, when I would accidentally slip into that role is when our relationship would deteriorate.

Adam van den Bok  09:21

My name’s Adam. I have one sibling, my sister. And going back to quite a few years ago, eating disorders became a big part of our lives when my sister suffered and went into this world that we really had no idea about. When it all began and just hearing bit by bit from my parents that we were entering this kind of world, it wasn’t that I didn’t take anything seriously at the beginning, but I had no understanding of what was to come. And it was not until she was actually put into a facility I realised that this is, hey, this is really serious, and then going to visit her there and really getting the gravity of what it’s like in a place like that. And knowing that yeah, this is not just a phase, this is someone who was very, very sick.

Sam Ikin  10:14

What was the hardest thing? I think you said you were, you’re worried that she, you know that, of course, the worst could happen that she might not make it. But what was the hardest thing for you during this period.

Adam van den Bok  10:24

I think one of the hardest things was just being at a complete loss as to what support to offer, or just feeling like I wasn’t doing enough and seeing that the person that I knew was sort of slipping away, you know, seeing it happen, and just being frustrated with myself that I wasn’t making anything better, because I didn’t know how, and that I know that being there was it should be enough. And then the hardest part was definitely going to see her in the actual cardiac ward, the hospital, and knowing all of a sudden this has got to the point where I could lose this person.

Jessica Coffey  10:57

The most difficult part was I felt like I’d lost my sister and my parents. Like, it just felt like it was me and the other sister, and Laura and Mum and Dad were in their own situation. And it’s very selfish, possibly to think that I felt like we’d been forgotten on the side.

Sam Ikin  11:18

Jessica and Adam have very different experiences. But there are some common threads emerging. I asked them both what sort of things helped and what didn’t.

Jessica Coffey  11:27

When we would almost, like ignore the eating disorder, and just behave as we usually would, and do things that we normally would and wouldn’t reference it or, you know, skirt about it and just go on, like normal and treat her as I normally would [Sam: So just be her sister?] Yes. Which is harder, is easier said than done. But that was what helped her and I think ultimately, that was what helped me in my perception of her.

Adam van den Bok  12:06

I think overall, what I was able to offer there especially going and visiting her in a sort of grim sort of environment was that I would come in and kind of just treat our relationship that we had as normal and not be pitying or not kind of treading on eggshells and be you know, “Woe is you,” and that sort of thing kind of just come in with my usual energy and, and kind of be an anchor to the life that she had? Or has, if that makes sense. Like, you know, to come in and make jokes and, and have a laugh and not be like, do you need this? Do you need that like, just keep things as safe and usual as possible.

Sam Ikin  12:47

I think that makes a lot of sense. So while everyone or everyone else was all worried and treating her specially and everything, she still had that, you know, that solid relationship that was exactly the way it was before with you, that must have been refreshing.

Adam van den Bok  13:01

Yeah, I think it was important because I always saw it as you know, for her to be in that state. If everyone around, her friends and family, are being so careful and gentle. She’s going to forget the reality of the world she lives in and just feel like a sick person.

Sam Ikin  13:15

How is she now?

Adam van den Bok  13:16

She’s really good. Now she’s got a really great management, she knows how to manage those fears and can identify when, when those nasty thoughts are coming in.

Sam Ikin  13:26

So the message we’re getting here is that siblings really should just be allowed to be siblings. But they do have a deeper role than that. Ranjani says that siblings are best placed to detect when parents are starting to lose a bit of steam.

Ranjani Utpala  13:40

Now this is a lot of pressure that can be put on younger siblings to be able to pick up when parents are losing steam or understandably, you know, sometimes getting angry or if the meal isn’t going well, if they’re being really hard on the person with the eating disorder. Really, that’s where the sibling can be an advocate both at home and in therapy, you know, coming in and saying, “Oh, Mum and Dad, that meal really didn’t go in line with what, you know, Ranjani was saying you need to be doing.

There was a lot of anger in the room,” or something like that. Now, that’s a really hard place to put siblings so we as clinicians, have a responsibility to make sure that the young person that we are asking to help has all of the tools and the skills to help. We know from the research that eating disorders thrive in isolation. They really drive such a significant wedge in relationships. And it’s so important then, for siblings to be able to find ways to connect that are important to both or to multiple if there’s more than one sibling involved. Find those meaningful points of connection. Be just siblings, and sometimes that’s about turning up and holding your hand or being there and sometimes, there’s also got to be room to be able to express disappointment, anger, whatever that might be. So it’s not that, you know, we’re expecting the siblings to be cheerleaders at all times. But really, it’s about being able to continue to have those relationships. Because it’s important, especially when we’re talking about adolescence, it’s such an important time of developing those relationships that are going to last you the rest of your life. And so, if we can bring that meaningful connection in the face of this terrible and dangerous illness that the family is facing, then that could potentially go pretty long way.

Sam Ikin  15:39

So we’re starting to get a pretty good idea of where siblings fit in the whole process here. But I still have one more guest we need to bring into the conversation.

Rose  15:48

My name is Rose, I am 26, turning 27. I’m a university student who also works full time at the moment. And I also identify as a sibling carer. Over the last 11 years that my sister has been a long-term sufferer a long term experiencer of an eating disorder, I have found that, in total, my entire experience has been an insightful one into how severe mental health can be.

Sam Ikin  16:15

And so what’s your role been like in terms of taking care of a sibling?

Rose  16:20

I feel that over the 11 years that I have been caring for her, it includes a number of different things. For example, at the beginning, I would say a lot of that was being very involved with my parents to find her the right support because there’s the disconnect culturally and understanding mental health. But then furthermore, as the years went on, my role changed into becoming more informal emotional support in the household. I feel sibling-carers are not trained, nor are they considered professionals. So I want to highlight that sibling-carers are more along the lines of informal networks of support in the home. I think, during the course, and the ongoing nature of her illnesses as well, my sister’s illness, I think that there are times where I was involved to a certain degree, there are times I stepped back. And there’s that nature of having to gauge with each experience that comes along of how much you can take on and how much you have capacity for to be there for a loved one.

Sam Ikin  17:34

Now, Rose has raised a really important point here, when someone in your family is struggling with an eating disorder, It’s easy to get consumed in their needs. But it’s equally important to make sure that you’re looking after yourself.

Ranjani Utpala  17:45

Yeah, I mean, that’s so very important, isn’t it, you know, in, we always sort of go back to that put your own mask on first before you can help others. And it’s so important that the sibling while they’re able to be there for the other, understand what their own needs are as well at that point in time. So self-care, and self-compassion, to me are so very important. But this is where it’s also, you know, some of that onus is on the clinician and the treating team to be able to help find those meaningful points with Mum and Dad as well. Even if it’s just us going out for coffee or a hot chocolate, depending on the age, whatever it is that they love doing, let’s play a game of UNO together. So having their own support people, you know, ensuring that there are ways in which they can continue to do the things that they love doing. I think those are really important things.

Rose  18:40

I have felt in in my role as a sibling, I can be silenced in the home. And that’s me saying it honestly, I that’s why I’m participating in this podcast because I don’t feel that there is enough talk around how siblings do need support. So when you change the dialogue as well to parents, and what I’m trying to say is that they shouldn’t neglect their other children. But that’s also casting a lens that parents may not have capacity for everything during times of turmoil. My advice for parents is to approach the caring role holistically by utilising all forms of support that are available including informal forms of support, such as friends, the community, and formal forms of support. But I think siblings really need to be included in that dialogue. Siblings also need to be involved because you can’t shield them from that when it’s in the family home. A very common experience, especially with family members who have a loved one diagnosed with an eating disorder is for there to be extra vulnerabilities around other family members or other siblings to then develop eating disorder habits or behaviours. And so with that research, it does show that it is important to have those check ins with siblings to involve them in the dialogue of what’s going on, but also to see how they’re functioning in their role as carers as well, to increase their capacity to make them feel better equipped to give them coping strategies and skills to be better, effective at home.

Sam Ikin  20:14

Another unhelpful emotion that almost always raises its head for siblings is guilt. Guilt and shame can be extremely damaging.

Ranjani Utpala  20:22

So I do think that it’s so important for siblings to learn the skills to be able to keep guilt at bay. Guilt is such an unhelpful thing. We know from the research that siblings sometimes can blame themselves for the eating disorder. “Was it something I did? I used to tease my sibling about such and such, and was it the teasing that did it?” So there can be guilt about whether they contributed in some way to the development, but then there can also be guilt about asking for something for themselves during this really difficult period in the family’s history. So I do think that that’s a really important one.

Sam Ikin  21:04

One of the main goals for this show is to give you hope. And the best way to do that is to introduce you to people who’ve been where you are, and come out the other side, to let you hear their story, the way that they want to tell it. So this is the time of the show, when I’m just going to ask the guests for their advice.

Jessica Coffey  21:22

Go to therapy. Talk to people, talk to your friends, talk to professionals. Like everything I felt, at the time, I sure was wrong, because I felt so angry. And so convinced that it was my fault, it was Laura’s fault. Like there was someone to blame, there was something that could be done, that would turn it around immediately. And turns out everything I was feeling was really normal and seems to be a very typical experience of a sibling of someone with an eating disorder. And speaking about it with friends and professionals and other siblings of people with eating disorders that I found on like through the Butterfly Foundation, was extremely beneficial. At a certain point in time, I think you have to realise that your own happiness can’t be dependent on your sibling’s recovery. I couldn’t make them and the eating disorder my whole world anymore. I had to have things outside that or else I was going to drown in it. So, to other siblings, I would say, live your own life. Don’t let the eating disorder be your life as well. It’s already taken enough from your sibling.

Adam van den Bok  22:43

From my position and for the family as well, it really made a shift of the comfortability of talking about mental health in my family. And it’s definitely changed that sort of dynamic and relationship where it’s just so openly talked about now. If I could go back, I would have wanted to be in the loop a lot more. I would’ve wanted to be included and, you know, when I went and visited, to be able to talk to someone about what’s going on and get both sides of the story, rather than, you know, just being told. I look back and I don’t really necessarily think of anything that was a massive benefit to her being in there. But I think that might just also come from, I only heard it from her. So I saw it is quite a grim and quite clinical rehab centre that I didn’t necessarily want her to be in because she was just telling me how bad it was. But I also didn’t get the opportunity to go in there and talk to someone and understand a little bit more about what was going on there and what activities they were doing and whether there’s positivity and little wins in there.

Rose  23:43

I feel that being able to be there for my sister in such a personalised way has shaped my communication skills, my interpersonal skills and being able to relate to people as well, on a much more vulnerable level. I think when I overcame the hurdles of the ups and downs of my own family life, I was able to then look at it far more objectively in a way and see that mental health affects people when I may not know what’s going on for them, when they might not even know what’s really going on for them. And I was able to connect with people saying yes, I do have a firsthand experience with mental health.

Sam Ikin  24:27

And finally, we’re going to go back to Ranjani, who’s playing a key role in helping expand eating disorder treatment to incorporate the family, the carers, the guardians, and of course, the siblings.

Ranjani Utpala  24:38

We really need to start to think of ways within the sector, within the system, about how we’re going to support families, and that includes siblings, in being able to support their loved one as they’re going through eating disorders. These are serious illnesses as we know they can be life threatening, and when serious illnesses are present is completely reasonable that parents are focusing their efforts and their resources on saving the life, essentially, of their child. And at the same time, it’s so very important to ensure that everyone who is in the family system is engaged in therapy, in supporting the young person with the eating disorder, but also really thinking about whether they need their own support as well.

Rose  25:25

I understand from firsthand experience, how debilitating it can also be in your own life to have to manage and function around, caring for a loved one, while also trying to find yourself in this world and navigate it in a way that where you feel like you fit. It can be all encompassing. And I really hope that from this podcast, we can shine more of a light through the Butterfly Foundation to have a more targeted approach for siblings.

Sam Ikin  26:01

And I think that’s a pretty good note to end on right there. I’d like to thank Rose, Jessica and Adam for being so open and baring their souls for us. And, of course, Butterfly’s Clinical Director Ranjani Utpala for sharing her expertise. If you think you need some support with an eating disorder or body image support, the Butterfly Helpline is there for you. It’s 1800 334 673. Or, if like me, you remember letters better than you remember numbers. It’s 1800 ED HOPE. If you prefer to chat online, you can do that also at butterfly.org.au. That website is the place to go to find all sorts of resources and information about eating disorders. Pretty much anything that you’re looking for, they will have thought of. That website again butterfly.org.au.  Butterfly: Let’s Talk is an Ikin Media production for Butterfly Foundation. It’s produced by Camilla Becket with lived experience support from Kate Mulray. The host is Sam Ikin, that’s yours truly. My production assistant is Bronwyn Lisson. Editing and sound engineering is done by our sound magician Brendan Lenahan. And to find out more about us good ikinmedia.au I’m Sam Ikin. Thank you so much for your company.