(upbeat music) - Welcome back to "Family Health Matters".

I'm Shelley Irwin.

With me today, Dr. Anna Flores, clinical liaison at Sanford Behavioral Health, Kathy Robinson, parent, and Gail Hall, executive director of Michigan Eating Disorder Alliance.

Three experts in the field to discuss a very important topic.

Tell us about you, Gail Hall, and how you are involved in this topic.

- Well, I'm now retired from clinical work, but I am still involved with the nonprofit Michigan Eating Disorders Alliance.

We do advocacy work and try to decrease stigma for people who are suffering as well as raise awareness.

- Good, tell me a little bit about Lucy, Kathy.

- Well, Lucy's story begins as much as like 25 years ago.

She's 36 years old now, and I hope that I'm feeling as in that timeframe, so much has changed, which makes me very happy, and much of that is awareness.

And so I hope that this will help raise awareness to the problem.

- And I bet Lucy's watching, correct?

- Yes, I did get Lucy's permission to do this.

We're very open about it, but yet I wanted to, you know, honor her and ask her blessing to do it.

- Of course.

- Thank you.

- She's with me.

- Yes, Dr. Flores, tell us about you.

- I'm a clinical liaison with Sanford Behavioral Health.

Sanford works with substance use disorders and eating disorders across the full continuum of care to connect people to the care that they so desperately need and to reduce stigma and raise awareness.

- Let me begin with a question, what is an eating disorder?

I'll start with you, Dr. Flores.

- An eating disorder, not to sound like a dictionary, it really is a disruptive pattern of feeding and eating that makes somebody, in my opinion, they lose the ability to be an active and full participant in their life.

So the disordered behaviors with which they have with food and their relationship with food and body is so over valued to them in a maladaptive way that it no longer allows them to function within their life in maybe the ways that they would like to or should.

- [Shelley] Gail, expand on that.

- Well, it's a serious mental health disorder, we can't forget that.

Sometimes when we talk about it, people think it's just a frivolous thing or it's something people decide to do and then they can decide to stop, which is completely not true.

And of course, one of the most worrisome things about eating disorders is that they have the highest mortality rate of any psychiatric illness.

I just read that if you're between 15 and 24 and you have an eating disorder, you're 10 times more likely to die than your peers.

That's serious.

- Yes.

What was the first sign that you knew Lucy might be having some symptoms of this?

- You know, I think part of an eating disorder is the secretiveness of it, or the hiding, so it was many years before we knew, many years.

But now looking back, we know that it started as early as in fourth grade when she had started having an unhealthy body image.

And these ladies did such a good job of defining an eating disorder, but one very succinct definition that I have carried with me through all of these years is it's an unhealthy relationship with food.

So the first signs were medical issues that were not really medical issues at all, but we ran, well, they were medical issues, but they were brought on by her eating patterns or eating habits.

But no one suggested or thought this might be an eating problem or a mental health problem.

And we went to the best doctors everywhere in Chicago and Ann Arbor and here and it wasn't until one doctor finally said, sat down in front of her and said, "Lucy, what's wrong?"

And then she just came out with the whole baggage of 10, 15 years of holding this.

But in retrospect, we look at her having restrictive eating patterns where, because of these ailments, she was not able to eat gluten, she was not able to eat fats, she was not able to eat, at different periods of time.

So she didn't eat those and then it started to impact her social life because she had lots of friends, but maybe she wouldn't go out for pizza, or if she did go out for pizza, she couldn't eat anything because she had all these- - Call everything forward.

- All these medical issues.

So that was all in retrospect though.

And, you know, 15 years later when we finally became aware of her real issue, it was quite a shock, quite a shock.

- Dr. Flores, is this story new or familiar to you?

- Oh, I mean, patients saying I have been seeing doctors for a very long time and doctors going down wild goose chases.

You know, trying to figure out what is the cause of all of these?

And I'm sure you've, yeah.

- Yes.

- You've lived that experience, right?

What is the cause of all of these ailments?

And to put it plainly, I mean, malnutrition affects the entire body and anybody who's suffering from an eating disorder, regardless of the behaviors they're engaging in, whether it's restriction, binging, purging, or other compensatory behaviors, are affected by malnutrition on a biological level and so those effects are going to show up as dysfunction in any organ system, right?

Take your pick, I mean, maybe one week, it's the gastrointestinal system.

The next week, it's brain fog or headaches or dizziness, or, you know, it's a cardiovascular issue.

And again, just to raise awareness of the fact that eating disorders affect the whole body.

They're very deadly, they're very dangerous.

And unfortunately, this story is all too common.

- Hmm, Gail, bring us back to bottom line.

Who in today's world, who's at risk for this nowadays?

Are we still worried about our fourth graders?

- Oh, for sure.

But I think the thing we have to bear in mind is this is not an illness that's just for young white females.

We have to look more carefully sometimes to see the folks in the underprivileged populations or the BIPOC populations or the LBGTQ populations, but they are all at risk for eating disorders.

Women in their 50s.

Really, it's almost easier to name who might not be affected by this.

But almost always the struggles start very young and the sooner it's recognized, and the sooner that individual comes to adequate treatment, the better are their chances of long-term recovery.

- Hence, back to you, yeah.

- Boys.

- [Kathy] I was just gonna say and boys.

Boys and men.

- Absolutely, many boys.

- I was actually shocked to see that, you know, when we started into recovery and groups and, oh my goodness, these are young boys, yeah.

- And again, we've somewhat discussed it, but true signs and symptoms that one perhaps needs help, Dr. Flores?

- A big one that we see is unexplained medical issues, which you touched on, right?

Just a lot of things seem to be not right, this child or this adult or this man, woman, whoever it might be, is unwell, and we can't seem to figure out why.

- And it's not only weight loss, even if that's involved, right?

- Exactly.

So weight loss may or may not be involved, but interestingly enough, less than 6% of sufferers actually present as medically underweight.

So that stereotype of, again, Gail brought up the thin white woman, right, is very outdated and is actually not representative of the majority, right, 90 plus percent of sufferers of eating disorders.

And so one that I think flies under the radar, right?

We see maybe changes in weight, hiding of body, choosing not to engage with foods or social situations like they used to.

You mentioned maybe she didn't even go out to pizza with friends, right?

Things like this, but we also see maybe unexplained medical conditions, also unexplained changes within the home dynamic.

Not just within the family unit, but actually within the house.

So unexplained plumbing issues or somebody, you know, isolating in their room, you know, things like that.

- Kathy, what was the breaking point if I can even say that?

What was the ask for help or the "you need help"?

- Well, you know, someone earlier had mentioned trauma.

My family went through a very traumatic experience where I almost lost my life.

I had a ruptured brain aneurysm, and I'm still here to tell the story.

- Thank you.

- But Lucy was alone with me when this happened, and called all of her sisters per directed to the hospital, this was in Chicago.

And they had told the girls, I have three daughters and my husband, that I would not last the night.

So she stayed the night and came home, and our refrigerator was full of good things that the neighbors had stepped in to help us, you know, I mean, and on the counter there were cookies.

And she says that she saw all that, and she had not binged prior to this, it was restrictive and maybe anorexia, and up to this point, no one knew either.

But she goes back to tell the story that she ate it all and purged and she said it was such a release, a release of her emotions about what was going on with me.

And it was something she could control, that's another thing, is that she was able to control, while she couldn't control, oh, and add to that my family was moving from Chicago to Grand Rapids in the midst of all this.

So when I was in neuro ICU, the moving truck came and packed and moved us here.

It was a predetermined move, preplanned move.

But that's really when it really started, but still, we didn't know.

- You know, I think we have to say though, this is all retroactive.

Lucy did not realize at the time- - No, no.

- She was engaging in that behavior.

- No, no, no.

- She was even using it to release her emotions.

- No, exactly.

- That's understood much later, often as a byproduct of therapy where you go back in time and sort of help establish how did this happen.

- Absolutely.

- And yet, isn't the process of, what is it binge and then purge?

- Binge and purge.

- Isn't purging, I've done something wrong, so I need to, I mean, what- - Well, I think individuals who binge and purge regularly often don't like the behavior, and therefore they're more likely to seek treatment.

Someone who's into the restricting really believes that the way they see the world is right and everybody else is wrong so they often have to be brought to treatment by someone.

- [Shelley] And what about body image, looking in the mirror and thinking that I weigh more than I do?

- Body dysmorphia and a distorted relationship with your perception of yourself is a core part of almost all eating disorders.

And that just, again, to speak to what Gail said, is something that has to be worked through in the recovery process with the help that someone deserves to have.

I think something that's important to note with the story that you so vulnerably shared is that people who are suffering from eating disorders, it is not a choice, right?

And Gail mentioned, you know, you're not necessarily choosing to use this behavior and have an eating disorder, but you are trying to meet a need to survive.

And that is one of the underlying things that regardless of the behavior or the process or the pattern, anybody suffering from this condition is experiencing, is I'm having a need that needs to be met to survive and these are ways to cope or to manage, right?

You mentioned to manage that trauma of what was going on in her life using this behaviors and engaging in this way.

- That's all she could do, she was 15 at the time.

- Was the only way that she knew to cope and survive in that situation.

And that speaks to, again, this idea that nobody chooses to have an eating disorder.

I think we get caught up in the idea that it's, you know, vanity or to be thin or, you know, to whatever.

And maybe that's a part of it, right?

The body image and the distortion.

But on top of it, it really truly is an attempt to figure out how to exist in such a challenging world with so many obstacles.

- Yes, so treatment, let's jump here.

I'll start with you Gail, and obviously bring Lucy's story back into play.

What's the first line of treatment here?

- Well, oftentimes we tell people to seek a medical assessment, but unfortunately doctors aren't always really adept at recognizing this either.

So if you start to suspect this is an eating disorder, I would go online and research and find places that specialize in this disorder that really understand it.

Typically, we start with outpatient treatment, which is the least intensive way to intervene.

And I can't stress enough that it's really critical, not only that the individual's in therapy, but also that they're getting direction from a dietician or someone else who will directly address those behaviors.

Because until the behaviors begin to stabilize and the malnutrition gets better, it's really hard to think clearly and therefore to use therapy.

If this behavior continues and accelerates, then we start to talk about higher levels of care in order to be able to protect them from the medical consequences that are going to happen.

- Yes, how was Lucy treated?

- I just wanted to piggyback on something Gail said about specialized eating disorders treatment.

And at the time, Sanford House was not here.

So we, and this period of time from when she finally broke down to a doctor and told us, and then she was immediately hospitalized at University of Michigan because she was in such a medical state by that time, the whole treatment process, like in and out of retreatment centers, went about 10 years.

Gail was her therapist here, and she was hospitalized locally, oh, at least a half a dozen times, up in Ann Arbor once and other states and across the country where we were just seeking help.

And finally there was one place that seemed to do the trick, but Gail used to call it the slippery slope.

She'd come out and be, you know, with lots of guidance, a dietician and directions, but can you do this on your own?

And she always reverted to her former behaviors until finally, and now she's been good, but I don't think it's something you ever totally recover from maybe.

And I mean, she's well, she's very well, she's so well and I'm so proud of her.

But you know, I don't think it's to be taken lightly that it's something that could happen again.

- [Shelley] Which means could there be a trigger?

- Oh, absolutely, absolutely.

The other thing we haven't addressed and one of the benefits of being at the end of your career is you can look back and say, well, we didn't know that 30 years ago.

We didn't understand the strong genetic link 30 years ago.

We really believe now that there is a brain type that makes an individual ripe for this disorder and then the events begin to stack up, the restrictive eating and the trauma and the GI troubles.

It's like a perfect storm, and then the eating disorder unfolds, and once it's unfolded, it's really hard to get it back under control.

So I can't stress enough, it's really important to seek intervention early.

- So if you talk prevention, first of all, grade our social media and that culture, Dr. Flores, with either enhancing this or not.

- It depends on how, with anything in life, right?

It just depends on how you engage in it.

Social media can be a tool, but any tool can be used in a useful way or in a destructive way, right?

You can build a bookcase with a screwdriver, you can destroy a bookcase with a screwdriver.

So that's how I view social media and kind of all the facets of life, right?

How are you engaging with them to support the life that you want to live?

So social media, wellness culture, diet culture, fitness culture, all of these things, that is where they live, right, and thrive.

And sometimes they're obvious, right?

You can go on a #fitspo account and you know kind of what you're getting into.

But sometimes they're not as obvious and they're more insidious, right?

These messages about societal beauty ideals that we have in America here and other cultures in the world, those are more insidious.

And you might be on a recipe blog learning about how to, you know, roast carrots and suddenly there's, you know, talk about healthy food and healthy eating and having healthy, thin body.

So I think it's really just how you slice it.

Big red flags are, you know, pro eating disorder websites and social media sites, they do exist.

And another, I think green flag, right, for recovery are pro recovery websites and social media sites that are clearly marked that are very helpful.

- Gail- - I didn't even know those things- - And back to actually, well, lemme go back to you, Kathy.

Three daughters, may I ask if the other two had any?

- No, no.

- And is this common or do we know?

- You know, no.

- Because of the genetic link, it is fairly common for it to be kind of run in families, but it doesn't necessarily mean that anyone who has an eating disorder will have a sibling who has an eating disorder.

It's not a one-to-one ratio.

I wanna go back to the social media thing though and I think Anna did a really nice job of saying it can be a tool of recovery, but it's also really dangerous, especially in younger kids who don't have the ability to filter through the material.

And so I would really encourage parents to make sure you're actively involved in what your youngsters are viewing on social media because that certainly is part of the picture.

We have such a diet crazy prone culture that we don't even recognize that as being unhealthy.

- There is a very active component of mindfulness when it comes to social media to have those protective factors with how you engage in it and kids don't- - Kids don't have that.

- Developmentally, it's not appropriate for them to have that sense of mind, so it's an unrealistic expectation.

So as a support or, you know, family member of a kiddo, yeah, you can't stress that enough of taking the role of being the mindful person, not necessarily the police.

- Well, it's difficult for an individual to recover from an eating disorder if other people in the household have- - Disordered- - An unhealthy relationship.

You know, rampant dieting, or they're on Atkins all the time because carbs are bad.

You know, those kind of messages make it very difficult for a young person to hear what we're saying, which is all foods are healthy in moderation.

You can have anything.

There's no good food, there's no bad food.

So when we talk pro recovery households, we wanna support and help the family be aware of those things.

You know, they may unwittingly be participating.

Again, we're such a diet prone culture that a lot of those behaviors don't get a second glance.

- So many people, their eating disorders actually, and I'm not sure if this is your experience with your daughter as well, but they don't get early detection because so many eating disordered behaviors and unhealthy value systems surrounding food and body image are actually put up on a pedestal and exalted within our culture.

So rapid weight loss, right?

Restrictive dieting, I mean, the pursuit of thinness, all of this is messaging that people are getting all the time, whether they like it or not.

And so those internal biases make early detection that much more challenging because a patient may come in and be exhibiting all of the signs and symptoms of an eating disorder, but if the provider's internal biases about weight, health, and their own ideas of food and body image can sometimes cloud the reality of the situation.

And that's no judgment against clinicians, it's just the human condition to have internal biases.

- Hmm, what is the best way for a parent to intervene?

Perhaps all the signs and symptoms are there, and you need to have that talk, Kathy?

- Well, we obviously had that talk in that doctor's office, that when she, you know, just, and I don't know how late that poor doctor was that day, that she took so much time with Lucy that I don't know what kind of order the waiting room was backed up.

But we obviously had the talk then, and I just, it was important for us to say we love her.

We don't blame her.

This is nothing she did wrong.

We'll take care of her, we'll be with her always.

And, you know, I think that's the most important thing.

- And then the next step is to get them to appropriate professional.

- Yes, exactly.

- Because this is not something that's going to resolve or go away on its own.

At least not when it's at that stage, it's not gonna go away on its own.

- And the timeline of care and of treatment, I think is important to emphasize too, because it's different than other conditions, right?

Let's say, eating disorders are a mental illness, but they're also a biologically disease driven process.

And so if you're sick and you take medication, generally in a week or two you feel better.

An eating disorder client might start to get treatment and on the outside maybe look a little bit better because they're renourishing and they're, you know, healing.

But that doesn't mean that they are better.

Sufferers of eating disorders, particularly within the teen and early adult demographic, actually list an eating disorder as a chief complaint for eight or more years.

So the treatment process and the healing process and the recovery process really is a long process.

It's a journey, right?

- It's a journey.

- And it's a lifelong journey, which is why a continuum of care in specialized treatment is so important, right?

Gail mentioned outpatient, but also if somebody needs more intensive treatment, going to residential or intensive outpatient or whatever it might be, is an important part of that journey.

- Absolutely.

- Hmm, and can this start at age 50, as I think was mentioned?

- Absolutely.

- Absolutely, eating disorders don't discriminate.

- Sure, and does it often correlate with alcohol abuse or other... - Especially in the adult population, there's a lot of overlap between substance use disorders and individuals with eating disorders.

It's very common to have those co-occurring along with significant depression and anxiety.

Again, this is a mental health problem.

So it's not just eating behaviors, it's the way the individual thinks and believes and feels their emotions is a very important part of it.

- Yeah, sufferers of eating disorders are five times more likely to struggle with substance use disorder.

So there is this risk multiplier of facing one mental health concern generally puts you at greater risk for others.

So additionally, eating disorder suffers are, I think it's 96 or 98% of them, also have a co-occurring mood or anxiety disorder, right?

And again, five times more likely for substance use.

None of these operate within a vacuum.

As Gail mentioned, struggling with mental health is real across the spectrum and it can present in multiple, multiple different ways and sometimes in co-occurring.

- So back to prevention with five minutes or so left.

Early detection.

- Yeah, early detection and awareness is important, but I think there are things we can change as a society and this is where I'm choosing to spend my time now.

Some of the advocacy work is about being in touch with legislation on the national level.

There actually is something right now kind of in the House and in Congress called the Kids Online Safety Act, which mandates stronger parental controls and it also has consequences and penalties for the companies that are choosing to put those ads in front of young children.

So I think there are things we can do to try to make our society more safe.

We all have to learn that being thin and losing weight is not the be all and the end all.

You know how many times when you run into someone do you say, "Boy, you look great, you've gained about 10 pounds since I," no, we say, "You look great, you've lost weight."

That kind of common talk- - You want more.

- Really, we have to question and try to stop.

- Yeah.

- Absolutely.

- There's so much work to be done as a society at large, right?

With this parental guidelines for social media and in legislation and all these things, but as individuals as well, being mindful of how we speak about food and body.

I think that what you say about your own body is what you say about all bodies and so what that's inherently meaning is people are absorbing the messages, regardless of whether or not you say it about them or yourself.

- So true.

- People take that in, right?

- So true.

- Somebody saying, "Oh, you're so brave to show your arms," or whatever it is.

"I could never show mine."

They are talking about their own relationship with their body, but there is a ripple effect to the people in that space hearing, wait a minute, do I need to compare, am I enough?

And that has impact on people.

So being mindful of our speech around food and body, pulling out judgmental language such as good or bad or better or worse, and just thinking about how all foods do fit and all bodies are good bodies and all bodies deserve care and love and support is a really, really great way as individuals to be part of that change too, if you're unable to be a part of the more larger systemic change, I think.

- And if there's one thing I could say to parents, I think, and I wish I would've done this better.

(laughing) Hindsight's always 20/20, right?

Be sure that you're valuing your children for the qualities that they have, not what they achieve or what they look like.

You know, we're so geared to those things in our society.

We say, "Oh, you're so cute."

"Oh, you did so well on that test."

What about, "You've been such a good friend and you're so kind and I'm so proud of you for that."

- Yes, Gail Hall, where do we find out more information about your good work?

- Our organization has a website, it's www.mieda.org.

- Kathy, what do you leave us with?

What do you tell the parent that- - You know, I can't let our time together end without saying to the caregiver, the parent, the caregiver, the loved one, the support person, to seek mental health intervention on your own.

- For yourself.

- Because there are feelings of shock and disbelief, but then down to guilt and blame and things like that.

You need your own intervention and you'll be in family therapy too, but just take care of yourself, your own self.

You know, all the exercise and sleep and diet and all that kind of stuff, but seek out a mental health professional of your own to help you grapple with those feelings because- - Eating disorders affect more than the person suffering.

- They're real feelings.

- Absolutely.

- And I did, and I'm glad I did.

But as you can tell, I'm still very emotional when I look, you know, when I think back to those feelings, the feelings I mentioned.

- Are you a grandma?

- I am.

- Okay.

(Kathy laughing) There's your future, as as they say.

Dr. Flores, how do we find out more about your work?

- You can look us up online, sanfordbehavioralhealth.com.

We've got immense resources about the treatment that we offer for eating disorders and substance use and other behavioral health, but also resources for sufferers who maybe are not quite ready to take that leap and to start learning more about the things that they might be struggling with.

They're welcome to call us for a free assessment at any time if there's doubt.

- Leave us with 30 seconds of go get 'em.

- Go get 'em.

(all laughing) - That was five seconds.

I got 45 seconds left.

- I always tell all of my clients that recovery is possible and that I know it to be true.

Oh, I'm getting emotional.

The emotions are here today, we're feeling the feelings.

I know that to be true and I know that everyone deserves that.

Whether someone chooses to accept that in their life and to walk in that path is their choice and I don't have any judgment, but I will hold that candle until the end of time.

For everybody suffering, recovery is possible.

- Yeah, but it will take time.

- It's true.

- I mean, I'm here to say 20 years and that's a long time.

- And that's often the job of the therapist is to try to hold hope and continue to provide motivation 'cause it will be worth it when you get there.

When you're in the midst of the struggle, it can be hard to see.

- Thank you.

We got the black and tan memo today.

(all laughing) Thank you, ladies, for your stories.

- Thank you.

- And your help.

- Thank you very much.

- As always, of course, thank you for watching "Family Health Matters", take care.

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