Alisha's Story

Note: this transcript has been edited for clarity, grammar, and flow.

Jo: Just take a moment, breathe in through your nose, a deep, calming breath; and then exhale out through your mouth, long and slow. Keep going, deep and slow.

You're here listening because you care.

You're here because you want to know more.

You're here because you are strong enough.

You're listening to the Strong Enough podcast from Eating Disorders Families Australia.

Self-care is vital. Use this short meditation at the start of each podcast to take a moment for yourself. Keep those calming breaths going as you listen to this episode, which is sponsored by the generosity of people facing similar challenges.

Jo: Welcome to Strong Enough, I'm your host, Jo Stone. When there's a diagnosis of an eating disorder in a family, it often impacts more than just one person.

The rest of the family, particularly siblings, can feel the wide-reaching ripples of change, worry, isolation and even anger. It's a whole other layer of suffering that comes with unique challenges. This is why Eating Disorders Families Australia actually runs separate support groups for siblings, allowing them to ask questions in a safe space with moderators who have lived experience.

But what can you do as a carer to support your other children or family members when a loved one is diagnosed?

It's a matter of understanding that the aggression or the abuse you're copping from your loved one is the eating disorder coming out. It's not your loved one.

Our guest today, Alisha Mah, is one of EDFA's counsellors working in the Fill The Gap program, which offers free online sessions for carers. She has so much valuable professional advice, drawn from her own experience as the sibling of someone with an eating disorder. She has a lot to say about the importance of family traditions and routines, how to deal with birthdays and special occasions, and managing family members who don't understand.

Alisha also has some ideas about how brothers and sisters can continue to connect and even deepen their bonds.

It's important to discuss these issues openly so that our other kids have a space where they feel comfortable talking and asking questions. They can then feel more involved in the recovery journey.

I started by asking Alisha how old she was when her sister was diagnosed with an eating disorder, and how it changed her family life.

Alisha: I was about 21 years old when my sister was diagnosed with an eating disorder. I'm not sure if she was formally diagnosed at that time or if it happened beforehand, but I was 21 when she shared with me that she was suffering from an eating disorder.

Like everyone's experience, mine was unique. We were living together, just the two of us, in a little apartment, so I found myself as her primary carer.

The rest of our family didn't actually know. The way it changed my family life looked very different compared to many other stories and experiences. It changed our dynamic quite significantly, and the emotions I felt at home were very different compared to before she disclosed to me.

Jo: It obviously changed your dynamic. You weren't just a sibling, you were also a carer. What was the hardest part of those roles for you?

Alisha: I think the hardest part was managing the emotions that came with it: the concern, the fear, and also the confusion and frustration. Being 21 years old, I was still navigating my own life, so throwing an eating disorder into the mix, especially with my sister, who was my best friend, suffering ... it was a lot to manage and navigate at the time.

Jo: Now you've got your professional role at EDFA as a counsellor. Knowing the skillset you have now, what do you wish you'd been told about eating disorders back then?

Alisha: I wish I'd been told more about how it was affecting my loved one; how it affected my sister; how it was like a full-time job for the person who has an eating disorder. Because I definitely lacked compassion and empathy. There was just so much confusion about what an eating disorder was and why it had attached itself to my sister.

It was confusing to navigate as a young person, especially without direction from anyone else.

Jo: So there weren't resources like the EDFA resources we have now?

Alisha: No. Even when she went to the GP, there was no diagnosis. There wasn't much focus on her eating disorder. It was more just mental health and, "Yes, you're underweight, so just eat more." It wasn't very helpful in terms of getting her onto the recovery journey.

Jo: One of the things you hear is that you need to 'continue to be a sibling'. What do you think that actually means, given your experience?

Alisha: Continuing to be a sibling can mean really different things for everyone in this situation. Because at the end of the day, you're still a sibling, but that role has changed significantly since an eating disorder manifested within your sibling. So, when we hear people say "continue to be a sibling," for me it meant focusing on the connection I had with my sister.

It meant making sure we weren't always focused on the eating disorder. We still shared things that normal siblings would share. She would share things about the relationship she was in, or I'd share things about my studies at the time. We would joke around sometimes. That happened less. But those little things and shared experiences were different compared to, say, how she would have spoken to my parents, for example.

Jo: There's a lot of concern around what siblings need to do to help their brother or sister. Is it their job to fix them, or is it their role to continue being a sibling and close friend?

Alisha: Everyone in the family probably feels like they want to fix it, or they have the ability to fix it. But we know that's not possible. The important thing is the connection they have with their sibling, whatever that looks like.

We can gain knowledge on how to be the best support person, but at the end of the day, hopefully their sibling has a care team including medical support, psychological support, and nutritional support. Siblings should focus on providing emotional connection and emotional support.

Jo: What are some ideas you might suggest to help keep up that sibling connection?

Alisha: Realistically, sometimes it won't be possible to maintain the sibling connection constantly. But when it is possible, if your sibling is having a better day, it's good to connect by watching movies together or doing things that are less stressful, avoiding activities involving food. Also, be guided by your loved one. If they just want to sit and read, sit down next to them and read a book too.

If they want to play a card game, great, play a card game together. Or if it's just sitting and gossiping about friends or family and engaging in usual sibling chat, that's great too. It's very much about being guided by what's comfortable and how your loved one wants to be supported.

Jo: So, hobbies, taking up interests similar to theirs, encouraging them?

Alisha: Yes, and trying to do the things you would have done before the eating disorder came into play.

Jo: Relationships can get very strained, particularly with siblings. There's this idea that the eating disorder should be thought of as separate from the person; that a loved one's behaviour is a symptom of the eating disorder, not a part of their normal character.

Jo: Can you explain that a little more from your experience as an EDFA counsellor? How can we tell the difference? What should parents say to siblings about this, and how should they explain it?

Alisha: The way we can tell the difference, which is something I often explore with my clients, is reflecting on what your loved one was like before the eating disorder came about. If they were calm, more loving, or didn't use certain language they're using right now, we can separate who we knew they were from how they're presenting currently. When we identify those different characteristics, we can say, "Okay, at mealtimes, my loved one is really heightened. They're showing a lot of aggression and stress. We understand that's the eating disorder coming out because before the eating disorder, mealtimes were calm, joyful, happy, and full of connection."

That's a good way to explain it to siblings and other family members about how we can tell the difference.

Jo: I would imagine that you could look at someone and say, "Well, they're really angry and upset all the time," but in fact, they're probably at war with themselves inside. So recognising that and giving them grace...

Alisha: Yeah, definitely. It's understanding that what they're going through is - it is hell. It's a full-time job for them to keep it up, to keep feeling like they're in control and like they're okay. Explaining that to siblings can be really helpful in increasing their empathy and understanding of what their sibling is going through.

Jo: With your experience at EDFA counselling families and clients, what would you say to someone who's trying to balance looking after the rest of the family, their parental duties, and the usual busyness that comes with caring, being a mum or a parent? What advice do you give about finding that balance?

Alisha: Finding the balance - it's almost impossible.

Jo: Yeah, I suppose that's actually good advice to recognise that it can be impossible.

Alisha: Yeah, and I think that's the reality of it, that it can very much be impossible. So take time to reflect, and work with your strengths. Whether that's if you're in a team with another parent or working with the medical care team, work with your strengths, and get support everywhere and anywhere you can. Share your challenges with other people because it's a way of externalising, instead of internalising, your challenges.

Jo: We spoke in an earlier podcast to a mum, Leah, in our second episode. She was saying outsourcing responsibilities was really helpful. Having a list, writing down all the things people could do when someone calls and says, "Let me know what I can do," you can look at the list and say, "Well, I actually need this kid's school books picked up," or "I've got something at the post office," or "I need the lawn mowed." Outsourcing certainly seems to help everyone.

Alisha: Yeah, definitely. And the person you're talking to for support doesn't need to fully understand what's going on. What you can communicate is how they can support you. Whether that's picking up mail from the post office, or dropping over a meal here and there. It's whatever is helpful for you in your situation.

Jo: What about making new traditions and upholding old traditions, or creating new routines like that Saturday morning coffee with other family members? Why should we be doing that?

Alisha: It's really important to recognise that even though an eating disorder has impacted the family, we still need to live. When we do activities like old traditions or create new traditions, it creates space away from the eating disorder. It gives the eating disorder less space to be.

It's taking back that time the eating disorder has taken from the family. It's important to still create memories and experience feelings of connection with family members. For example, at mealtimes, if your loved one needs to be on their device or watching TV, which isn't your usual routine, that's okay. If you're a team of parents, one parent can sit with the person who has the eating disorder, while the other parent sits with the rest of the family. That way, you're maintaining your routines and connection, while still supporting the loved one.

Jo: Sometimes there's a lot of guilt around continuing life when you have a family member who's so sick, especially your brother or sister. You're separated from the eating disorder - it's not you that's impacted, but you feel guilty. Is it right to feel guilty?

Alisha: Yeah, I think guilt is a very normal and natural reaction to that situation. What I often encourage clients to think about is: what's the guilt telling you? The guilt often tells you that you naturally care. You care that you have the ability to go out and do things, while your loved one is at home, not well. That's okay. It's not about getting rid of guilt, it's about recognising it, acknowledging it, and understanding what it's telling you, while continuing to do the other things in your life.

Jo: So it's okay to feel guilty and to keep going?

Alisha: Yes, yeah.

Jo: Let's talk about dealing with family occasions, especially birthday dinners. Should the family not go, or should someone miss out and stay at home with the loved one? How do you advise people to deal with that disappointment when you miss out?

Alisha: It's going to be very different for every family, as everyone's situation is different. It’s about what feels right for your family. For one family, it might be okay to bring everyone, including the person with an eating disorder, if the family is supportive and that loved one feels comfortable. But if it's a distant relative or family friend's event, maybe the family decides not to go, or only some family members go.

Managing disappointment involves recognising within yourself: "Yes, this is hard right now, and it’s disappointing we can’t go, but it doesn't mean next year we won't be able to." It's just missing out for now. Until this passes, that's what we manage as a family.

Jo: Would it be picking your battles too? For example, if we go to a birthday dinner and I know we'll argue about what they'll eat, should I just let them skip that meal, enjoy the experience, and deal with the potential argument later?

Alisha: That's hard to answer, as it'll differ for everyone. If it's about picking battles, we always want to ensure everyone feels comfortable in any situation.

Jo: Okay. What about advice for parents responding when family members or grandparents say, "Just make them eat!"? It's good to have something practical ready to say.

Alisha: Definitely. I always talk to carers about providing education. Explain an eating disorder as a mental health illness, and share information about what type of eating disorder it is. Direct them to the EDFA website for more reading.

But remember, they don't have to fully understand to provide support, and it's okay if they voice that they don't understand. We can't spend all our time educating others. Our main focus is supporting our loved one. So if someone doesn't understand, you can say, "You don't have to fully understand, but here's how you can support me through this."

Jo: One interesting thing is that someone with an eating disorder often picks a "safe person". Can you explain that? What if the safe person isn't you as the main carer?

Alisha: When we look at how our loved one treats certain family members, they might identify a parent or sibling as a "safe" person. The eating disorder latches onto someone it feels it can easily manifest around, someone who's less strict about food or boundaries. Conversely, it can be aggressive toward family members it sees as threats, as someone who could remove them from the "safe" person.

Jo: So what if they've chosen someone else, but you're the main carer handling appointments and daily care? How do you cope day-to-day?

Alisha: It's understanding the aggression or abuse you're copping is from the eating disorder, not your loved one. It's also about ensuring you're okay, which means reaching out for your own support. The reality is - the safe person isn't always the main carer. Being on the receiving end of the eating disorder’s voice constantly is challenging.

Understand that it's the eating disorder talking, not your loved one. Remember, you're there to support your loved one. Every boundary you set, every appointment you attend, gives the eating disorder less space. You're not battling your loved one—you're battling the eating disorder.

Jo: It's almost like another personality inside someone, isn't it?

Alisha: Definitely. It's strange, but when carers separate them, it's easier to say, "We're not being stern with our loved one, but setting boundaries against the eating disorder."

Jo: Do you have practical tips for families who have just received a diagnosis?

Alisha: A couple of tips would be removing mirrors around the house, especially if body checking is an issue, and removing scales. Weight should be managed at medical appointments.

Another practical tip is holding a family meeting to share the load, discussing openly, "This is challenging; how can we share household responsibilities?"

Jo: So, is it okay for carers to talk openly with their other children about the eating disorder?

Alisha: Definitely. As a sibling, especially younger siblings, if it's not spoken about openly, it becomes hidden, creating unspoken rules. It's important to discuss it openly, so siblings understand it's not a big secret. Even if we try to hide it, it's still going to impact them in a fairly significant way.

Jo: Why is hiding it such a problem?

Alisha: I think it's like the elephant in the room, and it will create that secrecy between siblings, which is something that we don't want to foster. We don't want to encourage that secrecy. We want to encourage their connection and their relationship between each other.

So it's important to discuss it. So then our other kids can also have a space where they can talk about it and they can ask questions. They can feel comfortable being part of, I guess, the recovery journey.

Jo: I think lots of people also worry about how much they should be saying. So do you actually tell those younger siblings in particular, absolutely everything, all the details?

Alisha: Yeah, I think you would liken it to a lot of topics in life where you want to keep it age appropriate. For example, if you're talking to someone quite young, if they're, I don't know, about five, seven years old, maybe liken it to, "Well, your sibling, they're unwell. It's like they have a cold, so they need to go to the doctors, they need to have appointments to make sure that they're well again."

So you just want to make sure that whatever you do share with them, it's age appropriate, and you give them the space to ask questions when and if they feel like they want to.

Jo: Is there some language that you should use with younger siblings in particular? Some of the words that might be different that you would use with younger siblings rather than the older siblings?

Alisha: Yeah, I guess with older siblings, you can get more specific in terms of what an eating disorder is and what the different types of eating disorders are, and also their role in the recovery journey. With younger siblings, you want to keep it quite simple and use words like, "Your sibling is not well right now, and we know that when we're not well, we need to seek medical help." So keep it quite plain and simple so they can sort of make the picture themselves, and then if they need any clarity, they can ask questions.

Jo: So every podcast, we ask our guests to come up with three really important takeaways that they want people listening today to have at the end of our chat. What were your three things that you wanted people to really think about?

Alisha: Yeah, I think keeping up the connection between yourself and the loved one, and that's that emotional connection. That's my first one.

Jo: And we talked about that, making sure that you have some routines, some interesting things, taking up hobbies, spending some time, connecting as a sibling, connecting as a mum, connecting as a dad.

Alisha: Yeah, so keeping up the connection. You're not just a carer, you're also a parent or a sibling or a friend.

Jo: There's another relationship that needs to be nurtured.

Alisha: Yeah, definitely, yeah. The other one would be to try and hold on to hope, because hope is so important for recovery, moving forward and having any sort of movement. Hope can come and go in size.

So sometimes we can be very hopeful, and sometimes we can only hold on to a little bit of hope. But trying to hold on to any sort of amount of hope is definitely going to be helpful in the recovery process and in continuing the recovery process with your loved one.

Jo: Why is that, in the human psyche, hope is so important?

Alisha: Yeah, I guess if we don't have hope, then it doesn't give us a lot of purpose to move forward. It doesn't give us a lot of that emotional drive to move forward. So hope is a huge emotion and something that's shared between a lot of people.

My third tip would definitely be to seek support. And you can definitely do that through the Fill The Gap program at EDFA. We've got some amazing webinars from our educational support program.

We've got our support groups and we've got a bunch of videos that you can find online too that are going to be really helpful.

Jo: And you can find that at edfa.org.au. And I agree, there's just hundreds of hours of webinars there and videos and regular meetings with sibling groups and carer groups. So it's pretty amazing.

So we definitely would recommend that too. There was something else that we did discuss and I think it's really quite important. And I reckon we should add a fourth tip today about self-care.

You mentioned that before about how hard that can be, but how important it is.

Alisha: Yeah, definitely. I think the reality of self-care can look so different for carers. For someone, it may be going to a gym class every morning.

For someone else, self-care can look like taking a deep breath here and there when you can. I think self-care looks very different for carers compared to people who aren't in caring roles. So it's what you can manage and what is realistic for you.

But self-care is so important because the more we can make sure we're okay, the more ability we have to be carers and support our loved one.

Jo: And how's your sister now and your relationship with her as a sibling?

Alisha: Yeah, she's doing really well. She's amazing. She's my best friend still.

And she has a really lovely relationship with food and her body. She's recently engaged. She's going to be getting married soon.

So it's all looking very exciting for her.

Jo: That's wonderful. Well, listen, and thank you so much for your time, Alisha. Tell us a little bit about how people can get in touch with you through your work at EDFA.

Alisha: Yeah, definitely. You can go to the website. So that's edfa.org.au and book in.

Or you can call the phone line on 1300 195 626.

Jo: And EDFA also runs an adult 18+ sibling support group monthly on Zoom. And the links are also in the show notes. Or head to the website edfa.org.au and search for sibling support.

Thank you so much, Alisha.

Alisha: Thanks for your time.

Thanks for listening to Strong Enough, a podcast by Eating Disorders Families Australia, an organisation caring for carers around the country.

Head to our website at edfa.org.au for links to more resources, including webinars, support groups, and the Fill The Gap counselling services.

All the links are below.

And remember: you are Strong Enough.

EDFA acknowledges Aboriginal and Torres Strait Islander people as the Traditional Custodians of the land this podcast was recorded on. We pay our respects to Elders past, present, and future.

Episode notes:

• Visit EDFA's website: edfa.org.au
• Contact EDFA: 1300 195 626
• Join Eating Disorders Families Australia’s Male Carer support group or other groups by clicking here
• Want more information and support resources for supporting someone with an ED?
  • Click here to become an EDFA Member
  • Visit EDFA's resources library
  • Book a free counselling session with EDFA’s Fill The Gap program
• Keen to volunteer or donate to EDFA?
  • Learn about volunteering
  • Make a donation
• To learn about specific types of eating disorders, you can click the links below:
  • Anorexia nervosa (AN)
  • Bulimia nervosa (BN)
  • Binge eating disorder (BED)
  • Avoidant/restrictive food intake disorder (ARFID)
  • Other specified feeding & eating disorders (OSFED)