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1: Ed Tyson – what my eating disorder patients want you to know

ED Matters Episode 1 – Ed Tyson, M.D.Screen Shot 2014-08-04 at 10.05.12 AM

In this episode, we’re joined by Dr. Ed Tyson who shares information from his eating disorder patients, who tell us through Ed, what they want you to know about eating disorders. This episode provides great insight about eating disorders, from people who are recovering from an eating disorder.

Links –

http://www.eatingdisordersdoc.com/

https://www.edcatalogue.com/pulse/

Full episode transcribed –

Kathy: Hello and welcome to ED Matters. Our guest today is Dr. Ed Tyson. Good morning, Ed.

Ed: Good morning.

Kathy: Delighted to have you. Ed has been trained in family practice medicine and adolescent medicine, and he has been treating eating disorders for over 20 years. He’s in private practice in Austin, Texas. He’s a member of the Academy of Eating Disorders Advisory Board and the Medicare Standards Committee, and the co-author of the AED’s Medical Guide for Eating Disorders. He considers himself an advocate for those who have eating disorders and teaches medical students, nursing students and undergraduates and graduate students about eating disorders at the University of Texas. Ed also presents at professional meetings whenever he can. We are thrilled that Ed has agreed to address at the topic of what his eating disorder patients tell him that he thinks we should know. By way of background, the reason I thought Ed would be excellent for this particular topic is because I feel he has a wonderful combination of warmth, knowledge and relational style. So welcome, Ed, and off we go.

Ed: Alright. Thank you very much for that. That’s very nice.

Kathy: My pleasure. Before I ask you our launching question, can you just tell us what the age of your patients is?

Ed: Sure. I see all ages, male and female. Youngest patient so far is six. My oldest right now is 68. So literally, six to 60 or beyond.

Kathy: Yes. Okay. Good to know. I understand that when it came to this particular idea of the podcast, you actually ask your patients for feedback on the topic and I’m quite curious. Can you fill us in?

Ed: Yes. I actually run a group and I mentioned the interview and I said I thought it would be better to ask you, meaning asking them what they thought people should know. And they were all like, “Wow, that is really interesting. I want to think about it.” And that was Monday night. So last night, I started getting a flood of emails from my patients who all had something important to say about it. And they surprisingly had many different perspectives that they brought up. And I actually was surprised by the variety. I thought some of them would say the same thing over and over again. But that really wasn’t the case.

Kathy: Mhmm. And I think that speaks to how we all recognize what very unique complex and very special individuals our eating disorder patients are.

Ed: Exactly. That’s one of the things I always like to talk about. And a couple of them mentioned as well is that I tell patients when they come in and family members, and then when I teach on it, I call eating disorders the curse of the blessed. The people who get eating disorders in my experience, it’s almost universal, have all been gifted and talented in at least academics, athletics and creative expression, plus they’re very hardworking. They are intuitive and they are extremely emphatic. Probably the most emphatic people you’ll ever encounter. And I tell them, “It’s like God said, ‘I’m going to give you this, this, this, this, this, and this, but there’s one thing you’re going to have work on to claw your way through and it can make everything else feel like you completely de-skilled.'” And so one of the things I want people to know is the very best and brightest of the people who get this and that’s one of the other reasons from a societal perspective other than just wanting people to not suffer, is that the best and brightest of our community are people who have eating disorders and we want them to get well so they can contribute.

Kathy: Well said. Can you share some of the comments?

Ed: Sure. One of them said, “You really don’t understand it. It’s a lot more complicated than a paragraph you read in high school health or on the CNN article about the emaciated anorexic girl. Eating disorders are mental illness that affects every aspect of life.” She went on to say, “They are the result of not the cause of pain. They are the result of excessive untreated anxiety, perfectionism, pressures, loss of control, self-hatred, low self-esteem, depression, rejection, and every person in the society that sends the message “you are not good enough.” No one sets out to have an eating disorder. It is a slow fade of distancing yourself from the world and yourself until you don’t feel anything anymore. Eating disorders are the visible expression of inward pain.”

Kathy: I was going to say it’s very moving. As I hear you read that, I’m actually having an emotional reaction too.

Ed: Right.

Kathy: Yeah.

Ed: So am I. This is somebody who when she first came in was clueless about it and scared. Hardly knew what anything she wanted about herself. Hard to separate herself from anything. And here she’s articulating her feelings and thoughts like that. It’s incredible.

Kathy: Yes.

Ed: She also went on to say it doesn’t end when you start eating normally “again”. Eating disorder became my best friend–” As she calls that  “ED became my best friend and I still struggle with letting him go.” When you have an eating disorder, you can solve any problem by just not eating, binging or some other behavior. It doesn’t make sense logically but when you have an eating disorder, you’re in a reality where the only thing you are measured on is how perfect you were the day according to ED. “Did you eat this amount of calories? Did you weigh this? Did you log your food into my fitness bowl?” If you met his rules, then everything would be alright. They are ineffective if unhealthy coping mechanism. And again, treating eating disorder behaviors is only the beginning. You have to work on the anxiety, the self-loathing and the criticism of yourself for much longer. It is hard work. This is the hardest thing I have ever done. You will never be the same after recovery. You will be so much stronger and happier than you ever thought you could be. And she’s actually studying for finals and she said, “I’m studying for finals but I had to write this.”

Kathy: Wow.

Ed: You can tell she has a lot of passion about it.

Kathy: Absolutely. And such wonderful insight.

Ed: Oh, yeah.

Kathy: Yeah. Do you have another you’d like to share?

Ed: Yes. Another one said, she said, “People with eating disorders have an overwhelming act of empathy and struggle to not care-take everyone they need.” And we talk a lot in group about care-taking. That when you have so much empathy, it is hard sometimes to separate your pain or your needs from someone else’s. But it can be very easy for you to lose that and then you don’t know what your needs and your wants are and you feel guilty if you’re not taking care of everybody else and you subjugate to that your own needs. And therefore, you lose who you are.

Kathy: M-mm.

Ed: She said recovery is so hard because it is going against everything your brain has told you for so long. She said recovery feels like dragging yourself a thousand miles through a broken glass while your left leg is caught in a bear trap.

Kathy: And still doing it.

Ed: Yeah. And you’re still doing it though.

Kathy: M-mm.

Ed: That’s why I consider treatment of eating disorders be an heroic thing and I compliment them on this. The other person said the hardest thing that she’s ever done–I’ve had people who are physicians say it was harder than residency in medical school. I’ve had people in law school or who are attorneys who said the same thing. Athletes who are very accomplished say this is much harder than anything they’ve ever done.

Kathy: Right. Yeah.

Ed: So people need to know that it is not easy to recover. I used the analogy once an avalanche has gotten going, a, it’s hard to stop, and b, the clean up takes a long time. And that’s really what happens.

Kathy: That’s a great metaphor. I appreciate you sharing it. Thank you. Yes.

Ed: You’re welcome. She also said eating disorders are so much more than only eating salads or overexercising. It permeates into every single aspect of someone’s life and the lives of those around them. Also, she said people with eating disorders are not shallow. This is not a vain illness. It’s not because they’re just focused on wanting to be pretty. No, it’s the only way they know to integrate with the world and how to manage overwhelming feelings.

Kathy: Yes.

Ed: She said also remember you don’t have to be emaciated to have serious health problems from your eating disorder. She said also it is a self-preservation driven coping mechanism. The colloquial use of binge and purge ala Netflix binge is actually quite annoying and stressful. It does not give due to what it’s really like to be somebody who binges and purges. Brain chemistry affects who gets an eating disorder and who doesn’t, which I think is important. We know that genetics, biological issues, all that can help contribute, and she wanted that to be known that it is not because of vanity and all these other superficial things. There’s a combination of things that lead to it. But once it gets going, it’s engaged. It is very difficult to extract oneself from it.

Kathy: When you first met her, would you have imagined–Like to me, as I hear what she’s shared with you, these were her declarations. And they are very, very healthy. They are very, very sound. Did she have a voice like that?

Ed: No. First time I saw her as I recall, I told her she had to go into treatment immediately to save her life. And she was clueless. And I remember she came back to group after she’d been at treatment and came back on the past. She attended a group and she talked about how she told her mother and her father. Her family knew all of these secrets that she’d been carrying around because eating disorders are a lot about secrets. And another member who commented here at the group at that time and not going to treatment and said, “I can’t imagine myself ever telling my parents this stuff.” Well, guess what?

Kathy: M-mm.

Ed: She went to treatment. She asked to go to treatment. And guess what? Her mother knows all this stuff and they talked about it. In fact, yesterday I saw them both together in an appointment and had a very open discussion. And to see the growth that occurs over time, it’s watching a transformation.

Kathy: Right. And you use the word passion and the self. The passion of the self that she’s sharing with you, with our audience, etc etc is wonderful.

Ed: And because they were willing to write this, they want other people to hear this.

Kathy: Yeah.

Ed: And they become advocates and emphatic concern people for those who are suffering like they did.

Kathy: Yes.

Ed: They can’t ignore that anymore. If they see it going on, they can’t ignore it. It’s like this radar you can’t turn off and they pick up on it. It’s like, “Oh, what do I do?”

Kathy: Right.

Ed: They’re caught between the care-taking and the boundary setting for themselves and trying to figure out how can I help without being intrusive and controlling.

Kathy: And being strong.

Ed: And being strong.

Kathy: And being strong at the same time. Yeah.

Ed: When I see patients coming in and they’re scared to death and they all are at the prospect, one of the things I do is medical care. So I do a very thorough medical assessment. I point out all the things that they can’t deny or going on. And that adds to their fear. And I say what’s going to happen is while you can’t imagine what’s going to happen, you are not going to be what you’re afraid you’re going to be. And I used the expression at some point usually later in their treatment that my favorite Chinese saying is what a caterpillars calls death, a wise man calls butterfly.

Kathy: M-mm.

Ed: And these are great examples of that.

Kathy: Yes. Please continue.

Ed: Okay. From the one I was just telling you about, the one who told her mother and who was in yesterday, she said stress the importance of the four F’s. Now talk about the fat, food, figure, and fitness. And I say to patients it’s never about fat, food, figure, and fitness. It’s always about feelings. And then I also said but it is about the food and eating and all that. You do have to do that.

Kathy: Right.

Ed: You can’t just be an insightful anorexic. You have to actually be somebody who goes through the work. And that eating disorders go far beyond these things that they usually stem from much deeper emotional issues. She said also that eating disorders are not to be judged based on the size or the weight of a person. You don’t have to be stick and bones to have an eating disorder, and this can be very important when validating someone’s need for treatment.

Kathy: Yeah.

Ed: And she added stress that there’s not enough financial support from insurance companies that becomes a huge financial burden on families and the sufferers. And she also said that stress the importance of residential treatment. And she knows that without that kind of intensity, the 24/7 being surrounded by people who “speak” eating disorder and having that chance to really be free to do the exploration they need to do doesn’t think she would be anywhere near where she is today. And she said especially residential centers that will fight the insurance companies when they inappropriately terminate coverage.

Kathy: Yes.

Ed: Another, by the way, had sent in a comment and said basically the same thing there. And also she said stress the importance of groups to support people with eating disorders but also their family and friends.

Kathy: I would love to hear more about maybe with some of the parents or family members who have shared with you as well.

Ed: They all come in and they all say they feel horribly guilty. Any decent parent will. They all start thinking what? How come I didn’t know this before? I should have done more. I should have brought him in earlier. They all have this guilt.

Kathy: M-mm.

Ed: And I tell them that’s the way it is. Just everybody comes in blindsided. And what’s important now is how do you support your family member, your son or daughter with this and how do you support yourself through it.

Kathy: Right.

Ed: So groups. Support groups for parents. Or what I do is I say I have this group of parents who are willing to talk to you anytime by phone, in person, text or email. And some parents don’t, but most of them want to connect. And it’s a big relief to hear, “Okay. So what I’m going through is okay. What do I do when my daughter calls from treatment center and says oh–”

Kathy: Got to go.

Ed: I don’t need to be here anymore. I’m fine. I’m eating now. It’ll be okay. I can go home now.

Kathy: Yes.

Ed: How do I do that? They need all of that. And they need support for when they’ve run into the really entrenched eating disorder, somebody who’s very resistant to treatment and all that. Parents need a lot of support to be able to say no to the eating disorder.

Kathy: Right.

Ed: They also say remember the best way to look at it is it’s the eating disorder we don’t like and we love our daughter. And we want to emphasize those two distinctions.

Kathy: Yes.

Ed: That we hate the eating disorder. We love our daughter or son who has an eating disorder.

Kathy: M-mm. Yeah.

Ed: Finances are always a big issue for families.

Kathy: Sure.

Ed: Very few people have the funds to just do whatever treatment they may require.

Kathy: Right. The one patient did speak to insurance and getting to a place that will battle insurance. And I know that even youngsters, I’m talking about 11-year-old’s, are concerned about the finances that their family is going to have to put out. Could you share some things on that?

Ed: Well, first of all remember we’re dealing with extremely emphatic individuals. Even 10-, 11-year-old’s get the sense that mom and dad are struggling with something. They feel guilty for having an eating disorder. And I’ll ask them. I said, “Did you ask for an eating disorder?” No. “Do you want an eating disorder?” No. “Would you want anybody to get it?” No. And I said, “You did not ask for it. It’s no different than if you have breast cancer or something. It’s something that happens. Your parents when they decided to have children, you don’t have any guarantees or any box that says or there’s a warning sign here. You just take what you get. And if you hang in there, this will be one of the best things you can go through in the long run.”

Kathy: M-mm. And to help them sort of navigate that very challenging territory of I feel so bad for everyone else and I feel bad for my parents, the finances, etc. Because I don’t think people don’t teach that lesson. That’s a tough one, yeah.

Ed: Yeah. And I tell parents most of that needs to be kept among themselves because you can’t shut off the empathy, the radar that they’ve got. So just tell them over and over, “We are the grownups here, we’re the parents.” Even if it’s a grownup child, you say, “We’re the parents. This is our job. We’re taking care of this. We’ll let you know if there’s something that we need.”

Kathy: Yeah.

Ed: And deal with it from there. And then parents should–This is another thing. They should seek advice on how to manage insurance and financial issues about this.

Kathy: M-mm. Yeah.

Ed: And there are resources out there. But they need to do that.

Kathy: I’m thinking our listeners would enjoy or appreciate learning from another quote. Can you share one?

Ed: Yes. This is a young woman whose family is Lebanese. And she said, “Eating disorders are not first world problems. It is not just the typical white girl complaining about her weight.” And she also said, “I wish people understood that disordered eating can begin as simply as killing calories. So it’s a very easy trap to fall into.” Comments about weight and all that can be what sets it off. “I wish people understood that eating disorder is one of the trickiest addictions to kick because you can’t just stop eating like you can stop smoking or drinking.” Another important thing that distinguishes eating disorders from–What other people tend to say they’re like other addictions.

Kathy: Right. She’s a brave person.

Ed: Yes. Very brave.

Kathy: Thank you. I’m wondering if there’s a message of hope that one of your patients shared with you. Because I think that’s something that comes through as I sit across from you that you believe recovery.

Ed: Oh, yes.

Kathy: And I’m sure that your patients pick that up.

Ed: And what they said last night, most of them are not talking about that but they have mentioned it many times before.

Kathy: Good. M-mm.

Ed: And I almost always see this in people who are “no,” and have turned the corner and are not really going back to their eating disorder.

Kathy: M-mm.

Ed: It’s when they say, “The eating disorder is the best thing that ever happened to me. I would not be where I am now if I had not had an eating disorder. It is what got me to go into treatment to look at myself, to re-orient my life and so on.” It’s like what people say in AA who are recovering. Alcoholics will say, “It saved my life and made all the difference. It’s the best thing I’ve ever felt. They helped me direct my life where it needs to be.”

Kathy: Right. And I think there’s sort of this comprehensive use of the word, “It saved my life.” Like life is not just the physical being. It’s all those other components.

Ed: Yeah. I say eating the food and stuff is where the battle takes place but it’s not what the war is about. And yes, they have to overcome the issues of eating and being weighed and body weight and so on, which they can do if they dig in and I tell them you dig in. All you have to do is just keep one claw. It’s all you do. Just one claw in. That’s all. If you hang in there, you will get through this.

Kathy: M-mm.

Ed: But it’s all that other work.

Kathy: Yeah.

Ed: Once you start the eating–What I tell patients, “That’s when you’re going to emotionally feel more pain.” And they all eventually agreed that it’s the hardest if they can’t use their eating disorder behaviors. Then the other stuff comes out.

Kathy: M-mm.

Ed: I will actually have patients–I take them through a little thought process where I say, “Okay. I want you to imagine that there is–” Say, whatever food. But I usually say something like a burger with cheese on it, fries and milkshake. And you have to eat it and you cannot use any of your eating disorder behaviors at all. What would you experience? And I’ve had patients start crying just at the thought of that.

Kathy: Right.

Ed: And I say, “Okay. What are you feeling?” And I get out the feeling, well all say, “What are the emotions you’ve got? And they’ll start naming shame, guilt, anger, rage, frustration. All these things. And they’ll write them all down. I said, “Let me go through this again.” So I’ll name all these feelings they quoted. I said do you think a sandwich caused that? Or do you think this is stuff that’s been there and you use the food so you wouldn’t have to feel it?

Kathy: Yeah.

Ed: And that’s when they start to realize wow, this is where most of the work ultimately has to go.

Kathy: Right. It’s a great question though to share. Do you have any closing thoughts that you would like to share whether it’s from your patients or from you?

Ed: I think it is a pleasure for clinicians to work with people with eating disorders because they are the most incredible people you’ll meet and have hope. And if you hang in there with them and share the ride with them, they will be eternally grateful and you will be realizing you’re in this for all the right reasons.

Kathy: And so of course I’m not going to let us end because I love what you just said about sharing the ride with them. Would you just elaborate, just a bit, on that because I think that really is significant.

Ed: Well, they need to feel like somebody is there with them who emotionally is holding their hand if nothing else and saying, “You’re going to get through this. You’re going to get through this. It’s hard right now, but I also know eating disorders don’t occur in wimps and you’ve got the strength and the capacity to get through this. And we’re with you, you can do it.” And anybody would be appreciative of that.

Kathy: I want to thank you so so much Dr. Tyson. Your compassion, your caring and your knowledge certainly shines through. And I am delighted to have been able to spend this time with you.

Ed: It’s been a pleasure. Thank you.

Kathy: You’re welcome.

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