Episode 35
[00:00:00] Welcome to The Be About Being Better podcast, where we help people make evidence based sustainable. Small changes for their health that compounded the huge shifts towards a better, more vibrant life. I'm your host Abbie Stasior, a health and life coach, future registered dietician, a master's graduate from Columbia University, and a certified intuitive eating counselor.
And I believe that we can't make lasting or meaningful change single handedly. So I'm so happy that you're here so that together you can see that a diet free, sustainable lifestyle is possible, and you can leverage that to live a better life. And remember my disclaimer, This podcast is meant to give you general information.
And it's not meant to substitute or replace medical advice, a diagnosis or serve as treatment.
Abbie: Hello. Hello. Welcome back to the Be About Being Better podcast y'all. We got a big episode today. We got a heavy episode today. So I wanna start with some trigger warnings. This episode will mention eating disorders. There's a brief mention of suicide. We talk about mortality and, but this is a really important episode to, to listen to, um, and, and, and stay with me here even, and even with these trigger warnings.
Because this is an episode, even before I started the Be About Being Better podcast, I knew that I was going to bring these guests on. I was going to bring on Linda and Jack Maser, so I. Completed my master's degree at Columbia and we had to take an eating disorder class. And as part of our curriculum, we read Linda and Jack's book called Emily, the story of a girl in her family, hijacked by anorexia.
And I was so inspired by their story when they came to guest speak to us. It was really emotional. To hear from two parents that their daughter passed away from, from an eating disorder. It was so impactful to me. They are just such great people. They did everything they could. The system truly failed them time and time again.
Um, I, I knew from that moment I was going to have them on his guests at some point for the podcast. And y'all, today is the day, uh, this interview is, Absolutely amazing. After everything that Linda and Jack have been through and what they have witnessed, they just have the best attitudes. They just want to help people.
They wanna resource you, they wanna provide you with community. They wanna tell their story. They want Emily's story to be amplified so that it happens to less and less people. You'll hear some pretty, pretty wild statistics in. This episode and one that really surprised me that I forgot about, I've heard this before, but to be reminded of it, every 52 seconds someone dies of an eating disorder.
And I think we've, it's confusing to us what, from an eating disorder? Yeah, from an eating disorder. People don't realize the seriousness of eating disorders sometimes, and I think people downplay it and there's a lot of misconceptions. So in this episode we dive into some, what are some of those misconceptions?
What, what are some of the warning signs? What can you do? What are the different levels of care? And why do we struggle with access to these different levels of care to help people? Why are people dying of anorexia? So that's what this episode dives into. And please check out the show notes, buy their book as we dive into some things, but we didn't wanna give the whole story away and their book dives into way more detail about their daughter Emily's story and everything that they've endured.
So thank you for listening. Thank you for sharing this episode. I think out of all the episodes that we've ever done, And honestly probably will do. This is probably the one of the most important episodes that we could record, and I just appreciate you all sharing this episode, getting the word out, because whether you have an eating disorder had in recovery, you know, somebody that we gotta get the word out so that more people can learn from Emily, Linda, and Jack's story.
And that they can be connected with these, with these resources. This couple, they're doing really good work and more people need to be educated on eating disorders. So thank you so much for listening. Thank you for sharing it. It really means a lot to me. Let's dive in.
Abbie: All right, y'all. Hello. Hello. I am so excited to welcome Linda and Jack Maser. Thank you both so much for being with me today.
Jack: Well, thank you for asking us to be on and we're honored to be here.
Linda: Absolutely.
Abbie: Yeah. I mean, we were talking about this podcast interview even last summer when I was a teaching assistant at Columbia. So thank you both so much for agreeing to that and, and being so patient. I, I didn't even have my podcast started then, but I was like, I already know I'm gonna want y'all as a guest whenever we start the podcast and, and start bringing guests on. So I really, really appreciate it. um, well, would you, you both mind just kind of telling us a little bit about yourself, where you're living now, and, and what's going on? Just give us a little bit of an introduction to y'all.
Linda: We started out as just a regular family living in Pennfield, New York.
Jack: Still still living in Pennfield, uh, still in the same house. It's changed a lot, but we're in the house we've been in for 44 years, three years. But it's changed a lot, But we're, we're still here.
Linda: And Jack tell
Jack: Oh. I'm a pharmacist by trade. Semi-retired, mostly retired by now, just working a couple days a week. But, you know, since 1976 I started as a pharmacist and it's been a good career. been a good career.Yeah. Mm-hmm.
Linda: And, uh, yeah, I'm a, Small business owner and, uh, reiki master. And, uh, we were blessed with two beautiful, wonderful children. The first one was Emily, and then, um,almost three years later came Matthew. And, uh, life went along as we thought that it would. And , sadly, um, things began to happen that we would've never imagined. Just a, you know, regular. Family, good family, lots of love. And, uh, our daughter developed anorexia and it changed everything.
Abbie: Yeah. Yeah. And, um, I know that audience heard, you know, a little bit about your story in the introduction, um, and. I definitely encourage y'all, and I'll be be repeating this throughout our whole interview, we, you gotta get the book, you gotta get all the details. We'll be giving you a little, you know, highlights and snippets, um, throughout this interview today. But really all of of the details of what has unfolded with the Masers is is in their book. So definitely encourage that. But the first question that I wanna ask y'all, because everything seemed. And kind of, you know, normal family, normal upbringing.What do you think were some of the driving factors that led into Emily's Eating Disorder?
Linda: if you wanna go all the way back when, when she was really little, she had trouble sleeping. Okay. And she had some separation anxiety when she was away from me. Yeah. But I worked at home. So that was understandable. And we talk to the pediatrician about it and you know, your first time parents and you're out, you know, concerned about everything. Oh, she's fine. You work at home. She's just attached to you but that was, I mean, a lot of kids go through that, but, you know, she got into school and turned
Jack: she flourished in middle school and in high school.
Linda: And she really, actually it started in elementary school though really? With her, her and her friend Kelly. Yeah. Just really, she loved school. She loved achieving. Um, but I think that anxiety that she had early on, I think it was always in there and I think she just masked it. Okay it wasn't obvious at all, just that, you know, she was happy, she was social. She was bright. We didn't really worry about Emily. She was, she was great.
Jack: I always tell people that when Emily was 14,I, you know, and, um, I said, well, we don't have to worry about Emily. She's, she's got it all together. She's like a little Linda. And, uh, she was wise and beyond her years and, um, she had a great
Linda: sense of humor. Like her dad,
Jack: When we do talks now, we show a video of, of Emily as a baby and growing up and into high school, high school, college and and beyond. And she was always smiling, always laughing, always happy. you know, and, um, just, that's who she was. She was somebody that, uh, her friends would come to, to, uh, ask for advice or tell their troubles to. And she was she was great listener and a great advisor to them. So, you know, she, she was, she wasn't diagnosed until she was 25 with, with anorexia. So she was diagnosed late. Was it going on before that, you know, during high school and everything, nothing that we saw, you know, nothing different.
Linda: Well, she developed a GI issue in high school and
Abbie: yeah, that was, I, because I know she was having some reflux, but then she was gonna have a surgery. But yeah. Do you mind just kind of explaining that and how you think the GI issues related to her
Linda: Right. So when she was in high school, she played soccer and then she decided that she would run track in between, you know, to kind of stay, stay in shape. stay in shape, stay. She was always a healthy, normal weight. She was strong athletic, Uh, musical a lot of other things too. Um, but when she started to do the track, she came to me and said, you know, ma, I, I get this burning feeling in my throat and food starts to come up sometimes. Just little bits, just little bit, just little bits of food. So, uh, we took her to the pediatrician and then he recommended that we go see a gastroenterologist. What we did is we. And he told us that it was not at all unusual for people who run to develop gerd. So he gave her medication, which she took, which helped a little bit. But she, from that point on she had to think about eating. Okay. If she drank too much water, uh, things would come back up again. Ice cream came back up almost immediately, uh, after dinner. If we went for a. Um, sometimes she would just have a, a mouthful of food that would come up that she would just have to spit out. So we were, I mean, we knew about eating disorders. We weren't experts on eating disorders, but we knew the things to look for. But if she ate smaller, more frequent meals, she did better. Mm-hmm. And the medicine helped the burning and, but she did have a little cup by her, her bedroom sometimes that when she was doing her homework, if something came up, she just, yeah, she wasn't hiding anything. She wasn't hiding anything. you know, It was just, and it was just a little cup and sometimes, and we were, I thought we were pretty astute, so I don't really think that anything was going on then, but I think it was the beginning because. She had to think about food. It wasn't normal, uh, that she could just eat like everybody else and then, you know, not have ramifications from it.
Jack: So, well then there was the anxiety of that too, Going to college and stuff and eating with other people and you know Worrying about that, that reflux.
Abbie: I gonna have a reaction Am I not? Yeah, Absolut.
Jack: know, Reflux. go have to have a cup every time I, you know, go to eat or, you know, in her, so that, you know, that may have changed The amount of food that she ate at that point. And again, you can never tell by somebody's weight what's going on, but she was still, you know, a normal healthy looking and healthy weight person. So,
Abbie: yeah. Absolutely. Are there other, um, cause I know weight is a huge thing that people, even in larger bodies, that they could have anorexia, and people wouldn't know Um, as. You now, I mean, I know in the beginning you weren't experts on eating disorders, but I really see both of you now as, as really experts and advocates for eating disorders. Now what, um, what are some of the other misconceptions that come to mind for eating disorders?
Linda: that they're a choice. Uh, that's a huge
Abbie: That that is a huge one.
Linda: That, that men don't get eating disorders because they certainly do. Maybe not quite as frequently and sometimes for different reasons, but it's just not unusual for people to develop an eating disorder when they have depression, when they have an illness, Uh, something where they lose weight and there's just a certain amount of the population that are more predisposed because of their personality traits as, you know, people who are more perfectionistic. Kind of driven. Uh, and that describes a lot of athletes too, right? so so I guess people don't realize that, that there's no. Eating disorders don't discriminate. They, they could happen to anybody in any social class, any sexual orientation, social economic, socioeconomic,
Jack: And it's a big, it's a big problem in, in the military, um, you know, with men and yeah, men and women in the military, It's becoming a, a bigger problem. And you think, you know how everybody that goes in the military has to get in this shape. They have to, you know, Muscular and, and, and get into shape. And I think then there's a that tipping point where it goes over the edge where it becomes, um, not just getting into shape and staying in shape, but it becomes, uh, obsessive and it can tip into an eating disorder. And it happens very, very frequently and more frequently now than ever before. there was always the thought that, you know, parents were to blame too, you know, and that's, that's, been, that's been de-mythed And, um, they're, they're finding that there's a lot of genetics involved. They're doing a lot of studies on genetics. You know, um, it's the bio psychosocial, but there's now genetics that, uh, come into play.So,
Abbie: Yeah, definitely. and you two did absolutely everything that you could for Emily and to try and help her on her journey, and you were met with so much resistance. It's like every time, you know, I took a step forward. the five inches bag, the healthcare system was not helping y'all out. Um, could you speak to, not to give too much away from the book, but could you speak to some of the pivotal moments in, in Emily's journey, um, and, and how you dealt with that?
Linda: I, I will go on to say that Emily. had surgery for her reflux when she was in college. And it got much better and It was something we pushed for her to see, um, a thoracic surgeon and the gastroenterologist but we were worried about esophagus and, um, yeah, yeah. Just so it was something that she had done and she felt much better. So at that point, I think we.
Linda: I'm sorry. It was her body. She was 21 or 22 years old, so she made the decision. We just wanted her to know the options that were out there, and she was very glad she did. Afterwards she said it just felt so good to eat like a normal person again. Uh, but then things changed. Yeah.
Jack: Well, you know, I mean,as a parent and your child is sick, you take 'em to a doctor and you think the doctor will know what to do to help your child, whatever the illness is. I mean, you do that from the time they're a baby, right through. So, um, it was just so eye-opening to us. We were so naive that we didn't realize that the doctors are, are, most clinicians don't get any training in medical school or nursing school or anything about eating disorders. Um, I think there's only 10% of the schools in the country that offer any classes at all in it, and it's just, it's minimal, you know, it's just a, a couple hours or something. So, so we u you know, the system was there, it was the only system we had to, to use and, just never understood how As time went on and as her symptoms got worse than her well, that they never understood how to get to the root of the problem. You know, they kept just treating and stabilizing her, but never,ever trying to get to the root of the problem. The mental, you know, the mental.
Linda: It turned into a full fledged eating disorder.Emily was in an accelerated pharmacy program and she was in a long distance relationship at that time too. And I think the stress of that,I think that was a tipping point for her. Yeah. So just before she graduated from, uh,pharmacy school, they had an accelerated program which is why we noticed that she had lost weight. So she wasn't really living with us before. She was, you know, at school. But she came home, but she, and she was a little bit thinner, but by Christmas she had lost a lot of weight and we were concerned. And her, um, her boyfriend, who her fiance at the time was very concerned. too.
Linda: And so eventually after a few years, she reached out for help.He.
Jack: But prior to that,she was, she was seeing her PCP who was right, who was very, very supportive, ,you know, not schooled and eating disorders, but very supportive and, and,uh,she was seeing a, a therapist too.But, um, when she was 29, she realized that,you know, this was getting worse. It was taking over her life, and she wasn't able to keep working and she knew that this was gonna get worse,So she searched a lot of treatment centers throughout the United States And went away and her treatment told everybodyshe was sick. She had anorexia, but she was going to go away and get better.
both 35: Mm-hmm.
Jack: And after being at the treatment center for five days after gaining less than two pounds,the insurance company said she wasn't sick enough to stay for treatment. that, The Tipping point. She was angry.
Linda: She was, she ended up being there for 10 days because the, the treatment center
Jack: tried to fight to keep her there. Right. You know, tried to keep fight with
Abbie: Right, because just because you gain a couple pounds doesn't mean that
Linda: But basically they told her,
Abbie: to the insurance company.
Linda: Cause They told her she wasn't sick enough. So can you imagine you're a medical professional yourself.She's a doctor of. And she told everyone, her friend and her colleagues, I'm taking a leave of absence. I have anorexia nervosa and I have to do this.Ihave to take care of myself. So they tell her she's not sick enough. The insurance company doesn't cover it, there was an outpatient there at that time. That was all that was here. They wouldn't cover thateither.So she was riddled with shame, anxiety, embarrassment.
Linda: She threw herself right back into work and literally worked herself to the bone and we were powerless. Anything we offered to try to get her to do this, she just went into, she was really depressed and,and, and mortified that this had happened. She threw herself back into work. That was a very pivotal moment. and she worked for six months until she couldn't work anymore. And, you know, after that it was very, um, up and down.She did. Well enough to go back to work here and there cuz she was wonderful about following up with her therapist and her physician. Yeah.
Jack: I think about adults like Emily and there's, there's so many, you know, that's why we call it the,the nonprofit,the Emilyconnection cuz you're an Emily, you're an Emily connection.Everybody we've met, youknow, is an Emily connectionand, and these adults are, have gone through high school and graduated in college and graduated and had a job. And, uh, been successful and maybe got married, had a family, and then this disease just takes all that away. And the,the, the shame of that is, you know, while all your friends are moving on through their life,you just disconnect from them. And that's what she did. And it's. Some of the friends disconnected from her too, so it's just,um Well, and she
Linda: never got the appropriate level of care. No. Until, until it was, it was too late. Too late. Mm-hmm.
Abbie: And that's so hard to, to declare, hi, this is what I have to be really honest and transparent with the people in your life. I need to take a step away to take care of myself. I think it's so hard for people to, number one, say hi. I have anorexia nervosa to say I have this diagnosis and.to to. Be aware of that and then say, I need help. It's so hard for people to accept help and to take the action steps to do that. So it's like, wow.Like she really was taking ownership
Linda: And we were.
Abbie: just spatter back out. It's ugh.
both 35: I
Linda: I know, and we were so proud of her for doing that.And And what happened after that? Um,you know, after that initial time when she went away, The ups and downs are absolutely unbelievable.
Jack: Yeah, you absolutely, have, you have to read the book because, you know, we, we said,you know, I remember one day standing in the hospital and, and saying, looking at Linda, and I said, people wouldn't believe this.
Jack: We tried so hard. Ifthis was a movie, people wouldn't believe it. but Emily wanted her story told. That's why we wrote the book. It was because she told a friend of hers that she wanted her story told. So sh that might.help somebody else. It might help change the system.And sono one would suffer like she did.So that was the impetus to write the book. It took us three and a half years to get it out, to write it and get it out there. Um, there were Tears. But there were just a lot of laughs too. And the good memories. Good memories. And you know, looking at the pictures and the, the book has some of Emily's writings in it, you know, we'd hope that, Hope that she would recover and write a book herself.But she's got some writings in the book herself from her. Oh, she was
Linda: amazingwriting. She wasn't, she was good at everything. Yeah. But you know, we look back and there's always things that you look back at and say,I wish I'd have done something different. And I said, There's a million things I would do just the same in dozens of different ways. I don't know if it would've had a different outcome,but we learned so much along the way,um, and have learned so much since from people like Emily who are wonderful people. And the thing is, is that these are all,everybody who I've met, they've that we've met, they're wonderful, compassionate,bright, drivenpeople. And the disease just robs them of their sense of self. And it's so hard for people to understand when things happen to the brain. There's so much more stigma when somebody has a mental illness.And what's interesting to me is there's a lot of people who've read the book,who've struggled with other types of mental illness,who said how much the book has helped them. And there've been a lot of people who said that the book was pivotal for. Continuing to work on their recovery. Soit's, it's doing more than we ever imagined it would do. And It's very hard for us to have the story out there too, because there's people who are not gonna understand.Yeah. There's people who judge it, who will judge and judge us and judge us, but it's okay. I mean, it's for the greater good,you know, ifit can save one person or shift one person's thinking so that they have the drive to get better. The thing that I,I would say that we've learned along the way is that, so we start a nonprofit called the Emily Connection, and there was the last thing we did, the, the, first thing we did was we put all our energy into the book.Um, the second thing we did,we, we started a podcast called Once Shattered Picking Up the Pieces, and it's about eating disorders and all health mental illness issues because they're so, co-occurring so many times.And then we started the Emily connection just last year to provide the support we wish was here for Emily And we wish was here for us,
Jack: it's for adults suffering and, and then the families for the caregivers of the adults that are suffering. Cuz you know, one of the saddest things I've heard in some of our groups is that, and this is from both the adults that are suffering and their parents have said,you know, I wish I had cancer. If I had cancer,people would understand You know? I'd be empathetic and, you know, I get the treatment that I was supposed to
Linda: get, and one, one youngman says if I had a, a relapse, people would understand if the cancer kind of come back. Yeah. And then there's another young man that said,
Abbie: and that it wasn't your fault.
Linda: Right. Exactly.
Abbie: blame the patient for the eating disorder, but it's not a choice. And I, I love that. You know, the title of the book has hijacked. in it Because it's, You have no control and you truly are hijacked. And people don't understand that. Yeah.
Linda: what is the statistic about women from
Jack: 15 to, oh, ages15 to 24? it's the highest rate of any.
Linda: Illness three times higher than any other cause of illness for women,For women, 15 to 20 to24. And people don't take it seriously. So, you know, you present with an eating disorder and you don't get treatment right away. You Came in with a tumor, uh,they pay pretty close attention to you no matter what insurance you had, right? Yeah. Uh, and people who lose the ability to work end up on Medicaid and, and then that's another whole nightmare. And I know that things are a little bit better than they are. When things began with Emily,but we still have a long, long way to go. And I'mso proud of you, Abby,for sharing a little bit about your journey and for specializing in eating disorders.I think that professionals in the field who are open about their own journey are so powerful. I so believe in that, and I so believe in the power of peer support and social connection because If anybody is gonna get well,it's not gonna be somebody who's isolated,uh, alone in their room for weeks and months and years at a time.It's gonna be people who are, have other people who believe in them, and therapists believe in them, and a dietitian that believes in them. And I, I think. It takes a village, and I've heard that. Only 10%of people with substance use issues get eating disorder treatment.And I've heard it's pretty close to the same statistic.I thinkI've heard from 10 to 20%of people with eating disorders only get formal treatment. Right. So we have to do better. We have to do better as a community. as a society. Um, and, and for our medical professionals just to be better trained So that they can handle, and just like anything Jeff always says, you know, the sooner that you are diagnosed, the better the chance that you're gonna get through this and be okay.And recovery is possible. And that's why we're doing Everything we're doing, because we don't want anybody else to go through what Emily went
both 35: Mm-hmm. Or
Linda: Or any family either. Do you
Jack: know the statistic that I, that Itell when we're speaking at a, a, school or, or even with, you know, friends and families that, you know, every 52 minutes somebody's dying is a direct result of an pain disorder.So that's, Just,an, you know, it's, it's a statistic. We always have a hard time with that word, but that's a person out there, that's a life out there. That's another family that's suffering the loss of a loved one. So, um, we just, we have to do so much better and, and wehave.to get the insurance companies on board.You know, they're the, they're the driving force of healthcare in this country and we've gotta get them on board.for better treatment, um, for eating.
Abbie: Yeah, a hundred percent. Do y'all mind just going through and explaining the different types of eating disorder treatment and maybe how to get better access to those, or any changes you would like to see with insurance or the healthcare system to have better access to those?
Jack: So you know, there's hospitalization.That's, you know, if somebody needs to be stabilized, that's where they go. And there's coverage for that. Emily's insurance paid for it over and over and over again. That revolving door of the emergency department and some hospital admissions that was, that was covered.after that, there's residential treatment, that's the, the next step down Residential. And There are many, many, many, many throughout the country of residential treatment centers.Wonderful people that are there to help, uh, the patient. But the insurance company gives limited coverage to those, if any,if any.And,Um, it costs up to anywhere from 30 to $50,000 a month for residential treatment. which is pretty much out of the realm of any normal family,any family, or any person being able to, to afford that. but then there's, uh, partial hospitalization where they go to a facility. We have a place in town here called the healing Connection that is a partial hospital, where they go there and they have meals and support throughout the day.Then they go back home to their families. And then there's intensive outpatient, which Ialways thought was, should be a bone. I know it's confusing because it says intensive outpatient, you know? It should be.but, but, that's when they're, they're
both 35: Stabilized
Jack: and, and they're more, normalized with their eating and don't need that, that daily.support For, for treatment. So a lot of that is covered,
Linda: uh, sometimes limited. Sometimes if you have the
Jack: right insurance, if you have the right insurance. You know, that the eating disorders were,were added to the Mental Health Parody Act from 2008, which didn't have eating disorders in it, but the and Wesson Act in 2016 right before Obama left office in 2016 was added to the Mental Health Parity Act To include eating disorders that had to be treated just like any other mental illness. So everybody thought that's great, but it hasn't really made that much of a difference cuz uh, the insurance companies again,
Jack: All.right. All right. Nobody oversees them or, or takes them to task thing,
Linda: You know? So most insurance companies do not pay for residential care. Right.Uh, and maybe not everybody needs residential care to begin with. Okay. But They need to be properly assessed and they need Therapy and they need a dietician.Dieticians aren't even mandatory for people with eating disorders. Why don't you speak to that?
Abbie: is so wild to me. Yeah,it's so wild. Um, and one thing that we're taught, I'm in my, you know, dietetic internship right now And one thing they're really harping on us is motivational interviewing and working.With the patient or the client to develop goals. And when I had my eating disorders in my inpatient eating disorder, uh, rotation recently, there's none of that. And when you're impatient, like it's just you need to eat food or like you will pass away. Like we are just at such a critical point and we need to be telling you what to do.So it's, it's a hard balance when, when they're that at that point.And I think.possibly in more of an outpatient setting, there is an opportunity to even build more rapport with that patient and have, and actually do more counseling, make it more collaborative, and not focus so much on getting your body physically back to a baseline and like, we just need to have you eat food, But also how do we help you change? Like your mind and your relationship with food heal that food anxiety heals are things that are going to help to make peace with food and to actually enjoy the experience of eating again. Um, so that there is less of a likelihood to, to relapse. So that's why I became an intuitive eating counselor, and I know that when you're possibly in an inpatient setting or you are very much in the thick of anorexia, you are so out of touch with your hunger cues, you're not able to trust that, but eventually when you start to recover, you do get your hunger cues back, and I think that's when intuitive eating and really working with the client and the patient.On how, you know, how can we build these, you know, goals together.Let's Make your treatment collaborative. I'm not telling you what to do,but we're working together through this.I, I just think that there's such an opportunity for that, and a lot of people are missing it because they're just focusing on how physically can we get you back to a baseline? How can we just get you to eat more calories and gain weight? Obviously the patients are very resistant to that. They have such a fear of that because they're also not treating the mind and they're not empathizing with the patient. So I think that there's a lot of relapses because they're not looking at the patient from that holistic view and helping them to heal that relationship with food.Get to the root of it,
Linda: right, People develop an eating disorder because they can't regulate their emotions, right?And food becomes the perfect coping mechanism for binge eating disorder,which is the most common eating disorder,you know, all the way Right Through to anorexia. There's so many different types of eating disorders.They all manifest in different ways. One size does not fit all. One size treatment doesn't fit all either. Andpeople don't realize what an essential part of the team your dietician is. BecauseI've heard so many people say that the dietician that they worked with was the reason that they got through it.You know, because it's, it is, it's motivational interviewing, it's goals. It's being realistic. Well,okay, that didn't.But let's just see what part of that might have worked a little bit that we can focus on more. And you know,just being openlike that because people need to be heard and understood and they need the compassion
Abbie: Meetings with us might not be covered by insurance. Even like we're at the hospitals, but sometimes we're not with a practice or therapists don't have somebody that they can refer to. So sometimes it's very, unless you have diabetes or like renal disease or renal failure, like those are the two things that for sure insurance will cover a dietician visit with. But everything else is such a gamble
Jack: Well,you know,when I've been looking up a lot of the insurance companies in their hierarchy, there's always a medical director, You know, in charge of whatever the insurance is. And Then they have Cardiology specialists and endocrinologist specialists and different specialists for different disease states, but none of them may have anybody in there who's a specialist for an eating disorder. so the people making these decisions at a one 800 number.have no education or specialization, in eating disorders and, as a pharmacist, medication's important. But we're a pill for every ill society and, Just, give me something and,and you know, it works for hypertension and,and thyroid disease and stuff.But there again, still, there's other changes that have to be.made. If you have hypertension, , with diet and exercise and other things, just throwing a pill down your throat and a glass of water doesn't fix you immediately. we're sitting in on a, a psychology and a psychiatry class in a couple weeks, and we've done thatEvery year, usually virtually since Covid.But I always ask them, you know, somebody in this age of specializations, but somebody specialize.in in eating disorders because it's, it's so much needed. It's, it, it's exploding it, you know, it was there before covid. It was exploding before Covid. And, you know,COVID exacerbated,exacerbated it even more.And, um, so I understand it's hard to deal with these patients, but you can't just fix 'em. There's no drug out there that's been proven to cure eating disorders. You know, they've tried the SSRIs and they don't work. So, um, it's just, you know, somebody said, well, how long does it take to recover from an eating disorder?Some people put a timeframe on it, three to five years, seven years. But there is for.again, it's
Linda: So individual, right? Handsome people may believing in,you know,recovery for their, youknow, for the rest of their lives. Some people may be fullyrecovered.It doesn't matter. The label doesn't matter. As Long As you can live a rich full life and, andbehealthy and, you know, be healthy enough to enjoy life and be productive and.I hate labels. I really hate labels. So, You just work , so you can live your best life,be as healthy as you can to be there, to be present, and to just make the most of, every day
Jack: There's a woman from London who contacted us after she read the book and she contacted us.Let us know that we weren't at fault. You know,There's nothing we could have done. And, but she said, you know, andshe's, she's in her fifties and she's in her own recovery now.Um, but she says that people think that, recovery is running through, , fields and eating ice cream, and it's, not a straight line.And, everybody doesn't become, doctor or a lawyer, but she's in her own recovery working with her dog in her apartment with a circle of friends
Linda: that, and she's very proud that she has a normal bmi and she should
Jack: be. And she should be. Yeah.
Abbie: Yeah, And I think what both of you have just spoken to is the reinforcement of the importance of community. We can't make lasting or meaningful change single-handedly. You need that support system to get you through, to get to recovery and then be able, to sustain
Linda: Yeah, And there's a lot of virtual groups now, which are great,
both 35: because
Linda: some people who would never go to an in-person group will sign up to go to a virtual group.Um, but the in-person groups, uh,are wonderful to, and. And in the-person groups, what speaks to my heart is when I see.The parents connecting with each other and then the adults with eating disorders, just connecting with each other. It's that sense of community. It's like that sense of being able to just share whatever your frustration is and not feel judged.And it's, you know, you talk aboutTreatingpeople mentally, physically, emotionally,and there needs to be a spiritual component too, you know, and,and I Think that's what happens just in these meetings.I mean, and it doesn't have to be any set way. For Some people yoga is very good, but sometimes just that connection itself can be spiritual and, adjust the boost you need and other people that you can reach out to if you're having a bad day.
both 35: And
Linda: you know, we're human by design. We don't do everything perfectly all the time. It's just that self-compassion is so important too.
Jack: Yeah. we were, we started out with these groups and.doing one group for the, the adults and one group for the family a month. Cuz both of us are still working and there's a lot of other things onour plate.
both 35: Mm-hmm.
Jack: But now we've been asked by the, the adult group they'd like to do it weekly,and we just can't do it weekly, but We're gonna, we're gonna try to do it twice a month now. So, so that gives me that gratification that, you know, they're,they're small groups. It's hard to get people to come out, but, Oh. But the people,the people that we have are justSo grateful and, and just so willing to help each other. So,
both 35: um,
Abbie: that's amazing. That's amazing. So you host those virtual groups?
Linda: we do in-person groups. I, yeah,these are in-person.We're doing a limited series of virtual ones. I just finished one, , with Betsy Brenner, who has also written a wonderful book called, um, the Longest Match. rallying to defeat a eating disorder in midlife. She, she's part of our boardtoo, so she's wonderful and her husband form our nonprofit,So that was wonderful too. Uh, and all these Emily connections that we never imagined have come,
both 35: yeah,
Linda: they live in Rhode Island.so, but anyway, we started a five week limited.series virtual group that just ended, and we will be doing that again. And we're gonna, Jack and I are gonna do the same thing for a family member support and just do a limited series, um, you know, for five weeks. And That gives people some flex. Um, if they wanna just focus for a while, cuz a lot of times people attend.A lot of different groups. They need a lot of different support. We can focus on certain things and we will be doing each of these a, a few times a year. The virtual groups,um, and the in-person groups are the ones that are here that we do every month. Uh, so, and we
Jack: and we wanna do outings too, you know, to have activities outside the groups so that it's, you know, um, gives them something to look forward.
Linda: Yeah. So not everything has to always be about eating disorders. It can just be about being people and having fun too.So we're going to the zoo, we're doing a painting thing, we've got other
Jack: things lined that, other things and we're just peer and we don't talk clinically in these group.We're just peer support and it's justeach, uh, each of the person to give each other peer support.
Linda: So, um, but we're gonna have speakers and things sometimes too,for that clinical support That's so important too.
Jack: We Launched the Emily Connection last July, and it's been amazing the amount of support we've gotten from family, friends, and, and, and, again, people we don't know.Um, so it's, it's given us the opportunity to do what we're doing and we'd like to get bigger. And so,
Abbie: yeah, absolutely. How, what's the best way for listeners to get involved in and support you? Cause we have you. Listeners that do have eating disorders or are now in recovery. We also have listeners that have never have, never had that, but they definitely will want to support your cause and, and support your nonprofit.
Linda: So fortunate that we have a blog now too, and there's some great things in, it, relatively new, but we encourage the people in our support groups.Um, to contribute to the blog. And we have one young man who's a journalist who has some incredible, okay, fabulous, fabulous, uh, posts about recovery and,um,and, and his walk.And he's great. So the name of, um, the website is the emily connection.com, and it's spelled www.theemileeconnection.com. The blogs are there and all the information about the
Jack: book, our book, the podcast, everything's on that, on that website. Um,
Linda: and you know what the book has helped us realize is that I think everybody thinks that. This is a problem just here in the States, but the world is small cuz of social media and we have people that have reached out to us from London on Australia, New Zealand. New Zealand, and it's woman, a woman comes Same frustrations that they're going through all different places. And it it because a
Jack: woman from Slovakia that contacted Linda.
Linda: So in addition to still working part-time and doing this,I have a.Email, uh,time that I, I spend with peopleand phone calls. And that all started, you know, not long after Emily passed, people started reaching out to me. And I, that kind of surprised me because, you know, our scenario was the worst scenario. ButI think what happens is that people realize there's, there really isn't anything that they couldn’t tellus that we wouldn't have empathy for and compassion for and understand. and. Tried to learn everything we could along the way with Emily And we've learned even more since and it's so wonderful just to be able to share it and to do it from the heart. It keeps us
Abbie: Yeah, absolutely. Thank you both so much for, for sharing your story, having this courage and to have to repeat your story so many times. I mean, seriously, God bless you both and, and thank you so much cuz you really are creating waves and making a lot of change. Andplanting a lot of seeds, which is important.
Linda: Look who's talking
Jack: Yeah. Right back at you. Yes. Yeah.
Abbie: oh, I love y'all so much. Thank you. As we close out, um, any other, because you've learned so much along the way. Anything, you know else say other like little nuggets of wisdom or pieces of advice that you would have to, people that are struggling with eating disorders, that may be a listener right now, or maybe parents that are, that are struggling with a child that that is suffering from an eating disorder.
Linda: I think language is very important and having the right kind of supports, and I Think the people who are struggling with a disorder, There are often people who are very compassionate and caring with other people, but not so much when themselves selves and they're sensitive, they're easily hurt. So I think it's very important for them to tell people what they need and, and maybe when something didn't set right, something somebody said,a friend, a family member, I think that's a, that's a really important thing. And I, I think certainly the peer support for family members too. Now one size fits all, and it's great to hear different scenarios, different stories, and different things that work for other people, uh, for adults and for their loved ones. For sure.
Jack: I just recently spoke at a high school,and then Linda and I spoke ata, at a college just the other day. And, and I, and then the high school was with the faculty, nurses, coaches, teachers and stuff. and I, always tell people that you. When you see someone who's been happy, engaging with activities socially and everything, then something, all of a sudden they're not the same personI remember Emily In high school, she had a friend who was on the soccer team and stuff, and she noticed that she wasn't happy and she was, had her head down on the desk and she lost a lot of weight. She lost a lot of weight. She wasn't eating lunch. And, and she went to the, the guidance counselor there and, uh, with her concerns about this other person.And, you know, she got help and she is, uh, recovered and now a doctor herein Rochester. So I just tell these people don't be. To, to go up to somewhere and say, Hey, is everything okay? You Know,is there anything you wanna tell me or talk about? Um, because,
Linda: well, and everybody knows
Jack: someone, with everybody, every place we've gone through all our advocacy,all the talks we've done, and and Rochester, Albany, Washington, everybody knows somebody.You know that, that that classat the, at the high school or that talk at the high school with the, the teachers and coaches and stuff. Youknow, we asked. People to raise their hand if they knew somebody with an eating disorder and there was 60 people in the room and there was at least50 hands that went up. You know, it was just everybody knows somebody. And, um, and for the people that,that have eating disorders out there, or any mental illness, please reach out to someone.Please.You're not alone. You're not alone.
Linda: Been through schools, counselors, uh, the lunch ladies, um, teachers,uh,every, they're all everybody. Schools are so busy right now, when people are so taxed, but just pay attention to those food habits and things you see in your students because they spend more time during the school year. It's school then they do at home. Yeah. By the
Jack: time they get home. If, you know, if they go to school at seven in the morning and then they go to school and then they've got activities afterwards and then they get.Seven at night or eight at night. You know, parents, parents haven't seen them all day, you know, dinner time's over and so, yeah. Uh, the, the connection in the schools and likeI said at the college, I said,trauma is very subjective,you know, cuz a lot of people say this is brought down by trauma too.But the trauma of being away from home for the first time and, and leaving your friends behind and not being home.
Jack: you know,mom is making you dinner every day and stuff, and, and so now you'reout on your own and you've gotta learn to eat on your own. Andso if you have a problem with eating, you know it gets even worse when you're out by yourself. And so
Linda: any, any transition in life, anytrans Yeah, it's a transition. Any transition in life can, can be a factor. So nothing to be ashamed of. And if there's any inkling that something might be wrong, you don't wanna live with regrets, so just follow it through and do everything you can and get all the support you can.
Abbie: Mm-hmm.
Linda: and Get a great dietitian
both 35: you both so much.
Abbie: Yes. Oh my gosh. For sure.For sure. Because you need someone that's for those long-term follow ups And to help you with the eating behaviors as well Oh, well thank you both so much. I Am just sending you so much love and I'm so grateful that you've come on the Be About Being Better podcast to share your story. And we're gonna link everything up in the show notes so y'all head to the show notes. We're gonna have the Emily Connect. Website there. We're gonna link up the blog, their podcast,the book for sure. And then, youknow, a couple other things too. So, um, and if anyone wanted to get in touch with you both, what is the best way to do that? If they have, you know, testimony or story or another question for you
Linda: they can do it through the website, um, or they can contact us at linda li n da dot. John dot major is m az urgmail.com or through the website. It's Info, the emilyconnection.com. And again,Emily misspelled E M I L E
Abbie: Amazing. Thank you. And we'll have that linked up in the show notes too.
Jack: Thank you so much. Thank you, Abbie
Thank you. Thank you Yep. Bye-bye. Thank you. Bye.
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