Maya Zaid 00:00 Welcome to Audio Inquiry with Maya and Sam, where we delve into the important issues often overlooked in society. I'm Maya Zaid Sam Dubiner 00:07 and I'm Sam Dubiner. On this episode of Audio Inquiry, we're shining a light on a topic that's rarely discussed: eating disorders in boys. This podcast episode discusses sensitive topics related to eating disorders, including disordered eating behaviors, body image issues, and mental health challenges. Listener discretion is advised, as content may be triggering for individuals currently struggling with or in recovery from eating disorders. If you or someone you know is experiencing difficulties with eating habits or body image, please seek support from a qualified healthcare professional or contact a helpline for assistance. This episode aims to raise awareness and foster understanding about the complexities of eating disorders but may evoke strong emotions or memories for some listeners. Erin 00:58 He was 10, I kind of knew something was wrong. I thought I knew what it was - I was partially right. He went away to camp for three weeks, which was kind of the standard, went with his brother, he came back and we went on a family vacation. And that was the week that I knew that something was extremely wrong. Maya Zaid 01:17 You've just heard the voice of Erin, a single mother of two boys from Toronto, Ontario. She's chosen to use a pseudonym along with her youngest son, Liam, who has been suffering from anorexia nervosa for almost a decade. Erin 01:30 I would say he was about 10 years old, when I started to see it, and it was kind of just refusing snacks, snacks are for babies, I want to be healthy, you know, this kind of thing. I have a bit of a family history of relatively mild eating disorders. So I thought I knew what it was. I didn't push it too hard. But fairly quickly, it became evident that this was going to be something way more serious. So then, he was referred to Sick Kids Hospital in terms of outpatient, persistent at that for probably a year and a half. Then he did a what they call a day hospital program at North York General, that's like a Monday to Friday, eight to five type of thing, helped quite a bit. But I still didn't have the background knowledge to sustain that recovery. Maya Zaid 02:23 I remember in our conversation, Sam, when we were talking to Erin, and we were having discussion about why she was reluctant to go through with the day hospital program. And she told us that she doesn't drive. So she commutes and the commute is really long. So it took her some time to be sold that that was what was needed. And Liam was too young for the one at Sick Kids. So that was the only option they had at the time. She works as well. So she's trying to take care of Liam and also, you know, take care of her at the same time. And also, of course, have a job. Erin 03:02 So, after maybe a year, maybe ninth grade he got extremely sick again, kind of did the same process. But, the day hospital after a few days was clear to me it was not going to be a good fit, so then he went to residential program at Ontario Shores, could talk for hours about that - guess you could say it helped a little. He was discharged from there, still without the background knowledge to sustain it. Had to go around again, by the second discharge I knew I had to do this by myself. So, I sort of started looking online and discovered a huge international network of families, and there's definitely some professionals attached to it as well. Then, i did probably did two and a half years of FBT. So that's family-based treatment, essentially trying to recreate treatment at home. But there were a lot of challenges that made him an outlier. Maya Zaid 04:14 One of them being you think that he started at 10? Erin 04:17 Sure, yep. Because it's they don't often diagnose someone that young quickly enough. So that was one part of it. And because he's a boy, they're also not necessarily looking for it. I would say the biggest one is that he was born a large baby, was always at the top of the growth charts. And there's apalling little recognition in the Ontario medical system that weight needs to be restored to the individuals healthy see weight not some kind of average. So because they didn't see that and I didn't know it, he was never fully weight restored. Sam Dubiner 05:00 Erin was talking about FBT. So again, family based treatment as a way to try to address the situation with Liam. And I know that like the Journal of eating disorders, they said that the recovery rates of FBT are between 30 to 40%, right. But if you search up FBT, and you go look at online forums like Reddit, you're seeing a lot of people who are saying that FBT has failed them right there. Some people are calling it family based trauma. Maya Zaid 05:31 I think what you're trying to say, here are some of the a really kind of makes us wonder where the healthcare system is at, trying to put this responsibility on parents to try to recreate treatment at home, as Erin says, you know, especially for a parent that doesn't know exactly what they're doing, and they're not really knowledgeable or doesn't have the resources and is going through this for the very, very first time. Of course, there's going to be challenges, but putting that treatment at home and allowing that parent to just figure it out by themselves. She feels alone already enough. And it's like, like, this is not the right way to go about this. You can't put a parent who's going through this for the very first time to do it alone. It's not going to end well. Sam Dubiner 06:18 yeah, exactly. And also the methods that we each parent vary so differently, right. So people's experiences coming out of FBT will be drastically different per person. Maya Zaid 06:30 Erin and Liam are put on what she calls an "excruciating" five to six week waiting list for Sick Kids Hospital. So what can be done to address this issue? Sam Dubiner 06:39 Well, we actually spoke to Emily Donohue, who works at an Eating Disorder Center. Emily Donohue 06:44 So I am a community engagement facilitator and a direct client support worker at the National Eating Disorder Information Center. And so I get to support people from across the country who are affected directly or indirectly by eating disorders, whether they're struggling with those things themselves, or their loved one a friend, a family member, a colleague, we get to speak to folks from all walks of life. Sam Dubiner 07:06 But, despite her cheery attitude, Emily is aware of the gaps within the healthcare system regarding eating diosrders. Emily Donohue 07:14 We know that over the COVID-19 pandemic, and even into now, four years later, we've seen an explosive increase in the amount of folks presenting to hospital based settings with eating disorders. And we know that there are extensive waitlists both hearing it, you know, in reports and from the news, but also people who are living it day to day saying they've been on a waitlist for six months for eight months. And there's sort of no end in sight, to when they'll actually be able to get the care or support that we need. So it's quite a frightening state that we're in with this high demand and this high need for care for folks. And our health care system just isn't equipped at its current state, to handle it and to get people through and get people into treatment through our hospital system. Maya Zaid 08:04 With a skyrocket of eating disorder admissions, Erin also found there to be gaps in the healthcare sector of what it means to be a boy and have an eating disorder. Erin 08:14 I think I think another reason he's an outlier is being male. And the truth is that males growth patterns are different than females. Yeah, a lot of a lot of the most of the research I would say has been done around sort of adolescent girls, females. Yeah. So all humans gain weight, they're not they don't reach their adult weight until sometime in their 20s. I feel like people don't grasp this, some doctors don't grasp this. There's no way that if you're 17, you need to keep gaining weight, everyone regardless of body size. So when they tell you, you know, your teenager's weight restored, it gives the impression that that's a fine wait for them to remain at. And it's not going to be. Maya Zaid 08:54 How are professionals going to be able to give these younger boys treatment if all the research is just on adolescent girls and older, right? Erin 09:03 Boys grow later and faster. So like if you're saying that the goal here is to what they'll typically say, in outpatient therapy, or whatever, is you're supposed to gain one to two kilograms per week. If that's the goal for a 17 year old girl. How is that? How does that not need to be higher for 15 year old boy, anyone who's raised boys or been around boys like knows that there's this kind of thing when they're a teenager, they'll eat people out of house and home, right? That is necessary. So trying to replicate that as the parent providing FBT and FBT puts parents entirely in charge of all food choices, right? So you're going to choose without the kids input, what they eat, you're going to put it on the plate, you're going to require that they complete every bite. Maya Zaid 09:47 And to make things worse, doctors aren't even getting the training they need to actually help people. Emily Donohue 09:52 Doctors actually only receive around four hours of training on eating disorders and their entire medical training throughout medical school. And so aside from that I mean, if you're a mental health provider, oftentimes there is no specialized training for eating disorders unless you seek it out for yourself. And so that combined from the medical and the allied help, sort of side of things, we see that people don't feel like they have the resources to handle these concerns. Sam Dubiner 10:15 Yeah, I was shocked by the amount of hours that these doctors are actually receiving during training. Maya Zaid 10:21 Me too. It really needs to be fixed, I feel, especially with the amount of inadequate knowledge that there is going around, and even the resources that are going around there, it's still inadequate, I feel, we really need to really need to up it, for sure. Emily Donohue 10:44 I think, a large misconception that we see broadly in our society, as well as in healthcare as who's affected by eating disorders, I think, largely in our media, we have this idea of who's affected by eating disorders being this young, thin, white woman. When that's not the case at all, we know that, you know, about 20% of people affected by eating disorders are boys and men, we know that trans, gender nonconforming and members of the LGBTQ plus community are at five times the rate of risk compared to their cisgender and heterosexual counterparts. We know that people with disabilities experience eating disorders at higher rates, people who are neurodivergent experience eating disorders at higher rates. And I think for these folks that don't fit in that narrative, oftentimes, the concerns are dismissed, or they're just missed altogether. Our healthcare providers aren't asking questions, and so I think this calls for a need for more culturally competent care, trauma informed care, as well as gender affirming care, when we're looking at eating disorder spaces, because I think that can help us create this more inclusive lens and this more inclusive approach to care to be able to support people of all identities, because eating disorders are as diverse as the people that they affect, there's no one look, anyone can be affected. Sam Dubiner 12:04 With nowhere to look for help, Liam's situation just continues to get worse. But there still is some hope. Emily Donohue 12:12 What we want to emphasize, I think is that recovery is possible, no matter the challenges that you're facing, and it can feel hard some days, and it can feel like you're lost and confused. And every door that you try and enter sort of doesn't open for you in the way that you had hoped. And we hear that and recovery is possible. And we are always always happy to make those connections for you to sort of foster that hope. So if you know a hospital based program isn't working for you. Something within our hospital system isn't fitting, right. How can we explore those other pathways? How can we foster that hope? Are there support groups? Are there low-barrier resources? Are there peer support? Is there online resources that we can share with you? Because I think we're always happy to help people navigate those pathways when it doesn't feel clear or it feels really messy. I think that's a lot of what we get to do on our helpline. Sam Dubiner 13:13 With the eating disorder helpline offering these resources to those affected, actual changes still need to be implemented into the system with action being taken. But even if all these questions were to be answered, not much would change for families like Erin's. Maya Zaid 13:31 You know, Erin's oldest son now lives with his grandparents actually away from his younger brother Liam. So everyone has become affected from Liam sickness to the point where his brother couldn't even be himself around Liam, and parents who are buried in a crisis mode for years at a time. Liam is living though with his father about a kilometer away from Erin in Toronto. Erin chose to stay in the neighborhood for her son's sake. Erin 13:57 The problem is that he has gotten much much sicker over the past year. So it is very difficult as a parent to see that happen right? I feel a little powerless. Sorry. It's okay. It's okay. I wouldn't put my own personal growth ahead of my child's - but it got so bad that I had to or I wouldn't have been there to help them anyway. So I guess you can call it a positive I mean, I get to sleep now. But - Maya Zaid 14:45 You've had many sleepless nights. Erin 14:46 I don't know I'm still torn as to whether - I don't know what the right answer is, right? You don't get to go back - Maya Zaid 14:52 There is no right answer. Erin 14:53 No, you don't you don't well, best answer then let's say that like you don't get to do it over, right? Right. Um, I am certainly trying to work on sorting out, you know, there's part of me that knows that you have to model that your life is worth living, right? Because you can't kids will tend to do what you do not what you say. So for me to sacrifice myself completely. Would that really? You do have to do that for a period? That is just part of it? Right, like everyone does. But ultimately, I want him to feel that his life is worth it, right? So how is he going to think that? It's like staying married for the kids, right? Eventually, you have to go because you have to show them that they should not settle and stay. You know, so I'm hoping at some level that he can see that I have had to choose to be okay. Try anyway. And maybe he will want to do that. I don't know. Maya Zaid 16:05 You have to try to lead by example. And that's really it. Yep. As a parent especially. Yeah. And he's, he's your youngest. Yes. Yes. Your youngest? Yes. I think the most important thing is that, that there is going to be an end goal and you're hoping for that to happen. Yeah. Erin 16:24 My job is to hold on to hope right, because he can't. Sam Dubiner 16:30 Thank you for joining us today on audio inquiry. I'm Sam. Maya Zaid 16:34 And I'm Maya. And if you are ever in need of any resources regarding eating disorders, we suggest you reach out to the NEDIC Helpline. Sam Dubiner 16:43 At 1-866-NEDIC-20 Toll Free or 416-340-4156, if you're in Toronto. They can be reached at email at nedic@uhn.ca. Transcribed by https://otter.ai