003 - What to Tell Family and Friends About Your Loved One's Eating Disorder

Episode 003 - What to Tell Family and Friends About Your Loved One's Eating Disorder

A conversation with Jenni Gaines and Laura Cohen from FEAST

FULL TRANSCRIPT

Host: Welcome to The Other Side of the Plate, brought to you by FEAST—Families Empowered and Supporting Treatment of Eating Disorders… Together we'll share personal insights, connect you with professionals, and point you toward helpful resources. And as we say at FEAST: We're here because we've been there.

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Jenni:

Hi everyone. We are excited today to bring you a topic that both Laura and I have navigated on our daughter's eating disorder journeys, and it's something that everyone who has a loved one who's been diagnosed with an eating disorder will have to face. And that topic is what to tell family and friends.

When your loved one is diagnosed with an eating disorder, whether it's your child or another loved one, and when the diagnosis comes, it feels like your world's been turned upside down and the people that you would normally turn to for support—your friends and family—since they don't know a whole lot about eating disorders, and you're maybe thinking about how do I protect my loved one in case there's any stigma involved? It makes getting their support a little bit more complicated. And so we're hoping today through this podcast that we can bring you some information and share our lived experience and make this a little bit easier for you because almost everything with eating disorders, there aren't really clear answers, and it's something you have to figure out for yourself, different for every family, and different for every individual.

Today we'll talk about the pros and cons of sharing your child or your loved one's diagnosis with friends and family or others. We're going to talk about how to decide who to tell and what to say in those situations, and then also how much do you consider your child's perspective on this if they don't want anyone to know? How do you manage that? Setting boundaries and asking for support. Another really important thing when it comes to telling family and friends about the diagnosis, and then we're going to share some personal experiences and some lessons that we learned along the way.

Laura:

Thanks Jenni, so much for getting us started. So we want to talk about, and in practice I did this so much—who to tell, who not to tell. These conversations always came up. And some of the big questions that I want you all to start thinking about is, thinking about your loved one's eating disorder. Do you want to keep it private to protect your child from—and I put heavy air quotes around—stigma? Who needs to know this and who should know about your child's diagnosis? How much information is too much information, and it's really important that we stress that there's no easy answers. Every family is going to navigate this decision differently. I could speak to a hundred families and everybody does it a little bit differently, and it's definitely a topic that comes up all the time. So I'm hoping that we can really help give you all some support so we could talk about the pros and cons of sharing the diagnosis.

I think the biggest pro is you will be on an island if you don't have support around you. Eating disorder treatment, recovery, the whole journey is very isolating, especially not only to the person suffering, but to the family. So one of the pros of sharing and being public, and we can talk about who you should share this with, is to really give some emotional support to you and your family. I've worked with caregivers that have told nobody. Sometimes I'm the only one that's supporting them, and that's really challenging.

Also just the practicality of it. It's helping with meals, childcare, transportation. It's having another set of hands and that's so important when you're in the trenches and there's just no time for anything and no one can help you if they don't know what's going on. Also, one of my biggest things is educating others in really trying to reduce the stigma. What I would say over and over again, often daily in practice was if your loved one had cancer or—I don't like to use the cancer diagnosis, but it usually is one that people can relate to a little bit better—or any other life threatening illness, would you not share that with people? Chances are that, you know, someone whose loved one has had cancer, again, I'm using cancer. I hope that's not triggering to anybody or any life altering illness and you'll see a meal train and you'll see the whole community come together. They'll put a 5K, so many different things. And with eating disorders, people like to keep that a secret. And there's truly no difference between the two. So really talking about reducing that stigma is so important.

But what are the cons? Well, let's be real. We talked about the stigma, but there still is that risk of someone judging and having stigma. I'd like to say that there won't be, and that's a reality. But I wouldn't tell someone not to share because of that. I think education is what comes with that. It also makes it easier for the next person to be able to share. It's also risking judgment. People are judgmental. There's nothing we can do about that. Again, education and experience helps with that. And then there are a lot of people there just going to give you unhelpful comments and we can talk about that a little bit too.

Often people have a misunderstanding of what eating disorders really are. And there always is your child has a right to their privacy and telling people can invade their privacy. I would argue that in a lot of cases that it's again, the pros and the cons, what's going to outweigh each other. So that's a little bit of our pros and cons. And I know Jenni was going to get into a little bit about how we handle things.

Jenni:

Yeah. Thank you Laura. Just highlighting when you're talking about pros and cons, just how hard it is to really figure out how to go about doing this. There's not a right or wrong way. And so again, on this journey, it's a matter of just kind of deciding what are your values? What's most important to you? How can you manage this in a way that is the most beneficial to you and your family? And we can share, you and I, Laura, can share kind of some of our experience and hopefully it will illustrate some examples of how different it can be.

What I think of first, you said meal train. I am a very private person. My friends who know me really well know if anyone is in the hospital in my family, or I'm going through anything, do not do a meal train for me. Okay? I know what not to do. I don't know. I just have a thing about it, it just feels really personal to me and so this is something that I chose to tell people who very much wanted to help me. I said, here's something you can do and here's something that I would prefer that you not do. And so I think that's what we have to do. People don't know about eating disorders. They don't understand them. They don't know if it's okay to talk about it or not. And so we, even though we are going through all this stress, we have to step in and kind of tell them what we need and what we want.

And I chose during my daughter's eating disorder to tell my main friend group that I wasn't going to be involved and I wasn't going to be doing anything for a little while. And all I told them was, my daughter's been diagnosed with an eating disorder and I am focusing on her recovery. I'll let you know when I'm coming back. That was what worked for me. That was a personal choice. And they honored that and someone else might want their friends to come in closer during that time. So it just depends on you.

Extended family can be a challenge too, because at least in my extended family, I so much wanted to lean on them, but I also almost felt I needed to protect them from what I was going through. And they also didn't know much about eating disorders, and so I didn't want to open up the chance that maybe a lot of wrong things would be said. And so for that first holiday season, we chose to stay home and not go traditionally we do to my mom and dad's house for the holidays. And that was just for a way to take care of myself and that's what I needed at that time. And so we're considering our loved one here, but we're also considering ourselves. Self-care comes up a lot around eating disorders and you can have a broad interpretation of what that means. For me, it meant not making it more stressful than it already was.

And there's sometimes necessity in telling. You may be looking at who cares about my daughter the most? Who do I trust the most? But there were a couple of key people in my daughter's world that I felt needed to know and I had the way the costs and benefits of, is it better to tell them or not tell them? And the specific example I'm going to use is my daughter's artistic director for her ballet company. She was already scheduled to be in some performances and so I needed to share with her that she wasn't going to be able to perform in those. And I did not know how long she was going to be out. And again, I gave a minimal amount of information there.

Also during this time, if people know, they may say some unhelpful things. Even the most well-intentioned and loving people will step into it and say the wrong things. Their very first one that I heard was from a very close family member saying, you know, what do you mean she has anorexia? She's too smart to let that happen. That was hard. That was hard to hear. And it was shocking. And I realized I'm still getting educated about eating disorders. I'm learning that they're not a choice, that they're not anyone's fault, that they're genetic. So I can't expect other people to understand eating disorders. So I learned to just let those roll off at me, and not take it personally and not—those are just some of my lived experiences.

Laura:

Yeah, I had a lot of those. Thanks for sharing that, Jenni. I had a lot of similar things right from the get go. I said to my daughter, there's nothing to be ashamed of. Who do we want to tell? I prefaced it that. And right away it was her gymnastics coach and her best friend and at the time, and I reached right out to her gymnastics coach and her friend, who I was good friends with the mom. And I always made it that there's no stigma here that if you share it will be more helpful. So we were always very open about her diagnosis and my daughter actually became very open about it. You know, once she was in a little bit better of her place, she very much has become an advocate and has always posted her story on social media. She's done talks, a podcast, a whole bunch of stuff, but that's how we cued it up at the beginning.

With all of that being said, extended family is really challenging, comments that should never come out. I had to train them. Even with the best training. Five years later, comments still come out. I do think that the older generation is challenging. Our, you know, I'm in my fifties, so my parents generation is the grandparents generation is challenging. They say things they don't understand. My father-in-law will be oh, is she over that thing yet? They call it that thing. The diet talk that has to be shut down to protect my kid, my mother, saying that she wishes she could lose weight. Not helpful. Definitely had to cut a lot of friends and family out of some conversations and put a lot of boundaries around what they're allowed to talk about. It was hard. It was really hard and it would do anything to protect her during recovery because our kids are recovering into a really challenging diet culture world. So there's a lot of protection.

But it also is really helpful. Her gymnastics coach needed to know. She needed to know what was going on. Her school needed to know, because she couldn't get her assignments done on time and there was a reason why and that added stress, applying to colleges did they need to know. So we always kept it very open so there was no stigma around. And I think in the end that helped. And we also had to protect certain privacy and certain situations. It was not helpful. So yeah, so again, what may work for us may not work for you, and that's okay. Every parent has to make decisions based on their own child, their priorities, and their own needs. And we can get into some of that.

Jenni:

Yeah. Laura, I love the way you described that you kind of put it out in the open and that you didn't look at it as if it had any stigma, and I think that's really brave. I feel it's a little bit scary when you're starting to share this diagnosis because you don't know what people's reaction is going to be. I decided early on that I didn't want stigma attached. My daughter was similar to you. She was fine with people knowing that she had an illness, and what the illness was. And I think figuring out the balance between the shame and the secrecy and the stigma versus the protection and the privacy that you were talking about, that's kind of what we're figuring out here. And as you said earlier, it's going to be different for every individual and every family.

Sometimes practical suggestions can help. These are some just suggestions if you want to try them as you're navigating this, the very first thing is to learn as much as you can about eating disorders, because then you'll have facts to share with people and you'll feel more confident sharing them. I found the more I learned about eating disorders, the more I could choose which parts of what I knew to share with people, and it was different for each person that I was sharing it with. FEAST 30 days is amazing for this. It is 30 email lessons, one lesson a day in your inbox, and you will learn about all of the most important topics about eating disorders. And you can share that link with others, any family members or friends who you think want to learn about eating disorders. And then they'll start to understand there's even a day that talks about talking with friends and family and it's day 21. If you want to go straight to that lesson, once you register for FEAST 30 days.

Another thing that you can do is to actually decide how do I want people to help me? What kind of support do I need right now? Even write a list. Write a list of what would be helpful to you, is getting help with meals helpful? Do you have younger kids that you could use some childcare for when you're taking your child to their pediatric appointments or to see their other providers? Could someone run some errands for you? Pick up groceries. Could you join me once a week to go have coffee so that I can have some time away from the eating disorder or maybe just someone to talk to? Just making a list of that, and being aware of what would really help you.

Then also just decide what isn't helpful for you and make that clear also. An example here is telling people I will not going to entertain any talk about diets, weights, exercise, eating, you know, issues, anything. I still do that five years later, I still do that. They don't remember. Even though you've told them before.

Laura:

Exactly. That's I mean, it's so embedded in our culture and our society today. It's almost normalized to the point where it's expected to be in the conversation. So I mean, it's not our responsibility to educate people, but it's our choice if we want to try to help them out with that. And if that's going to be unhelpful to us, I think it's perfectly fine to set that boundary and say, we're not going to talk about that around me or around my family, around my child.

Jenni:

I know with people who have sent emails ahead to wherever they're going, to whoever they're going to see to give them the do's and don'ts. These are the things that are good and these are the things that are not good to please don't do these things. I did that verbally with my family the next holiday season, and I still, you know, there were still some people who just didn't get it. Who still said the wrong things, by then my daughter was able to manage it, but it's always worth a try letting people know what you need and what's not helpful.

I already mentioned FEAST 30 days. Using resources to support you through this is a really great way to manage it. And finding a community that understands if you're not finding that support network with your friends and family that you normally turn to. FEAST is an example of a wonderful community of people who have been through this, who get it, who understand, who have wonderful experiences and insights to share. We have a Facebook group that has thousands of caregivers in it and also in around the dinner table forum and support groups. All of those can be places where you can find support.

Laura:

Yeah, definitely. And one of the biggest things that we will talk about in multiple episodes is boundaries. Boundaries and self-care. Right? So you got to keep your boundaries. It's okay to take a step back from different groups or extended family. I will actually implore some people to do that because it's really challenging at times. You know, I have a small group of women that I'm close with and you know, when we were in the thick of it, and I would talk to someone and I would tell them all these things that were going on that they could never understand in a million years, and they would try to give me advice and it was really frustrating. Because they didn't understand and their advice was really challenging, and I finally had to speak up and say to them, do you know what I need? I need you all to listen and not to give me advice. And that was probably the best advice that I give to people is tell your friends and family that you want them to listen. And you don't want their advice because there's no way that they can understand it. And sometimes even someone is oh, my niece had eating disorder. Let me tell you everything. No, you don't need, it'll just mess with your head a lot, unless it's helpful. It's really okay to set those boundaries.

Boundaries can look different for everybody. Limiting what you share at times and with certain people. Choosing who gets information. I definitely had different people that I would share different things because it all came back to what's helpful for me and what's helpful for my child. And that's really all that mattered. Someone who I knew was going to nitpick and naysay and give me other information, they were not allowed in my circle at that time. Deciding how to respond to unhelpful comments. And that's kind of what I just talked about was I was very much thank you for that information. You know, I've got it. Usually what I would say was, I have a professional team that's helping me and I would say that often to my really close extended family that would give me suggestions. I would say I have a professional team that is helping me right now. Thank you very much. And that was kind of something that I said over and over again.

You can always change your mind as circumstances change, right? As you feel more comfortable, you're in charge of that, you set your own boundaries for it. One thing that I just wanted to bring up and we had talked about before was about shame and stigma. And one thing that I do feel very strongly about is that silence breeds shame. So if you're really trying to, or secrets, secrecy and not silence, secrecy breeds shame. So if you're really, you know, the message at home is we don't talk about that. That just makes the person who has the eating disorder feel so shameful about it, right? So that is one thing I will say.

With that being said, the next thing I do want to make sure that we address is when we talk about culture, you have to acknowledge cultural differences in how mental health and eating disorders as part of mental health is viewed in your identities in your culture. I've worked with numerous families through the years of all different cultures. And some cultures really, they don't talk about mental health. Mental health is something that is, it is shamed. It is secret. It's, I mean, again, we're saying we don't agree with that and we can't change someone's culture. So in that kind of situation, again, it could be that the elder, you know, the grandparent generation or even sometimes your contemporaries, if your culture is that you don't talk about mental health, then you may need to find support elsewhere. You can choose to break that stigma. I'm all for breaking the stigma and you also need to protect yourself. So there are absolutely cultures that I've worked with that you have to respect what their feelings are and how they tend to do things. So in that situation, you want to find, well, where else can you get that support? Right? Maybe you can't get it culturally, you know, from your family or your close friends, or even your environment around you where you live. However, find support groups, just FEAST. You know, find those social networks. It could even be someone in your community. Maybe you find out, oh, they actually do have a support group that's, maybe it's private, but you know, this group of women meets or, you know, families or whatever. So really lean into your team to find that. But yeah, tons of resources online for that.

Friends and family really may struggle to get it, even if you try to explain. I have a family that have medical professionals and they still didn't get it. There was still a lot of things they didn't understand and I had to use that often with them. I have a team of professionals and, you know, we are doing the best thing we can, so it doesn't mean you're doing something wrong if they don't understand. It's just really, we didn't understand anything when we got started. Right. I actually had a professional background. I didn't even understand eating disorders. So I wouldn't expect most people to get it. And that's okay. You're not doing anything wrong.

Jenni:

Exactly. And I think another thing to highlight is that your support networks going into the eating disorder before the diagnosis and then your support network coming out after the diagnosis is probably going to be different. There's a shift that happens there, and that's part of this process of figuring it out. Don't be surprised if some of the people that you were really planning on leaning on through this disappoint you. And also, don't be surprised if completely unexpected people step up in big ways. You might have some champions and some heroes on this journey that you just couldn't foresee at the beginning.

We've already talked about how important it is to find community with those who understand finding a caregiver network, a parent network, turning to FEAST and the peer support community there. Finding support groups. It's not hard to have energy for all of these things, but it's part of taking care of yourself and I'm sure we will have many episodes talking a lot more deeply about self-care, but the secrets and the shame that Laura was talking about and the stigma can really make you feel isolated. And even among your family and friends, you can feel isolated. And so if there's any message that we would really hope to impart today, it's that you're not alone.

Laura:

I want to say one thing, I just wanted to backtrack. You're definitely not alone. We get the question a lot about kids returning to school, especially our younger people in treatment. You've got your 10 to 14 year olds, and they don't want to tell their friends, right? Maybe they're going back to soccer practice, but they don't want to tell anybody on the team that they've just been in the hospital and then they were in residential. And I have this conversation often and what I've learned through practice is that when you don't come out with at least a part of the truth, often what people are talking about and what people are gossiping about is way worse than the truth. They come up with their own stories, and I've seen it time and time again, so having that conversation of actually setting the record straight. Really being honest about it is often way better than what people are talking about. Because often people know if your loved one, you know, has lost a significant amount of weight. If we're talking about that's the situation and they're leaving and they're going to residential and they're on the hospital and they're coming back in a different body, that's a whole other discussion. Right. But people, often, people know, their friends know what's going on? So that honesty back there, if we can help with that, if your team can help you with that, that often that return to school is really important as well as role playing with your child. Well, what are they going to say? Because people are going to ask, people have no boundaries on what they ask. So when people come up to your kid and be: what happened? Where have you been? Or you look different, or all the different scenarios that can come up, giving that, you know, giving those answers that you practice with them before they go again. This may be for the younger kids when they go back to school, what can they say? People who don't want to talk about it give all the details. Sometimes they say, I was in the hospital because I had a heart condition. That's true. That's often why people are in the hospital because their heart was affected. If they're not ready to, you know, give the entire reason, and then to their close friends, they can share that with. But we really want to think about what are your kids going to say? Because people are going to ask. So I just wanted to make sure that we talked about that.

Jenni:

Yeah, such a good point Laura. Thank you for sharing that. There are just so many things that can happen when your child is diagnosed with an eating disorder, unexpected things, from your family and friends, and so thinking about this and planning and knowing what to say and maybe what not to say is a really good exercise. And deciding who to tell and what to tell them how much to tell them is really a personal decision. And it's going to depend on the individual family and how much they are considering the wants of their child with the eating disorder.

Learn as much as you can about eating disorders. I'm just kind of reviewing some of our main points here before we leave. Protect your child's privacy while also protecting your own wellbeing. So finding that balance there. Making sure you are doing what benefits you, your family, and your child the most, not what other people want or need. It's okay to set boundaries and do what you need and pay attention to the very most important things. And remember, keep in mind, no matter how this goes with talking to your family and friends about your loved one's diagnosis, all eating disorders are treatable and full recovery is possible. Trust yourself and take it one step at a time, and you're not alone.

Those were the things that we really wanted to leave you with today. And also a reminder about all of the wonderful resources that FEAST has, FEAST 30 days, and all of our peer support resources.

Thank you so much for being here and for listening, and we hope you'll join us on our next episode. Thank you, listeners.

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