EPISODE SUMMARY
Dr. Blueweiss speaks with Nafiz Cekirge, a father in central New Jersey who speaks candidly about the impact that anorexia has had on his oldest daughter and on the family. There are a lot of unknowns to do with eating disorders and Nafiz helps us to understand the complexity of anorexia and the importance of listening to your instincts if you suspect your child is struggling.
You are welcome to share the wisdom from this episode. Please be sure to credit: “Ep. 13, Anorexia: A Father's Perspective", Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
Mentioned in this Episode
TREATMENTS & TREATMENT PROGRAMS
Family-Based Treatment
A type of therapy which involves all family members in treatment of the individual with the disorder. Currently considered the gold standard approach for addressing anorexia nervosa. Views food as medicine, and places responsibility for all meal decisions, shopping, and preparation with caretaker in early phases of this modality.
https://www.feast-ed.org/what-is-family-based-treatment/
FAMILY THERAPIST
Amy Begel
ADOLESCENT MEDICINE EATING DISORDER SPECIALIST
Dr. Jennifer Northridge
https://doctors.hackensackmeridianhealth.org/provider/Jennifer+L.+Northridge/1317171
TREATMENT FACILITIES MENTIONED IN THIS EPISODE
Princeton Center for Eating Disorders at Penn Medicine
https://www.princetonhcs.org/care-services/center-for-eating-disorders-care
Hidden River, Chester NJ
https://hiddenriverhealing.com
LEVELS OF CARE
Inpatient: patient acutely ill, and requires medical stabilization.
Residential: highly structured live-in environment for medically stable patients; offers 24X7 support.
Partial Hospitalization (PHP): a step-down treatment-based day program; offers recovery-based therapies and support along with opportunities to practice recovery outside of program.
Intensive Outpatient (IOP): flexible treatment program; assumes patient is able to participate in school, work, and so on. Treatment team (therapist, nutritionist) providing regular support.
[00:00:00] Carole Blueweiss: Welcome to Wisdom Shared, where parents are the experts and connections inspire change. I am your host, Carole Blueweiss. And today I have as my special guest Nafiz Cekirge, a father of three, a husband, lawyer, and advocate for the eating disorder unit at Penn Medicine Princeton. Three years ago, his eldest daughter, at age 11, was diagnosed with anorexia nervosa, an eating disorder.
[00:00:35] According to the scientific literature, eating disorders, anorexia being just one of them, are a serious psychiatric disease with a mortality rate higher than all other mental health disorders. Anorexia is complex, multifaceted, and very difficult to treat. Its prevalence among adolescents is on the rise.
[00:00:57] In fact, the title of an article published recently in The New York Times read Eating Disorders in Teens Have Exploded During the Pandemic. Please note, the advice provided on this podcast does not constitute or serve as a substitute for professional psychological treatment, therapy, or other types of professional advice or intervention.
[00:01:21] If you have concerns about your child's well-being, consult a physician or mental health professional. If you are looking for additional resources, you can check out the show notes on Wisdom Shared. Now, let's listen to my conversation with Nafiz.
[00:01:37] So Nafiz, nice to have you here on Wisdom Shared. Thanks for agreeing to be interviewed.
[00:01:44] Nafiz Cekirge: Of course. My pleasure. I'm happy to chat.
[00:01:47] Carole Blueweiss: A lot of people ask me, you know, how I find my guests and I usually find them in very different ways. And in your case,
[00:01:56] Nafiz Cekirge: One of my very, very close friends called me and said, I've got a very good friend Susan and her granddaughter, I believe, has been struggling very severely with anorexia. And given my recent experience with it, would you wanna talk to Susan? And I said, sure. And Susan and I chatted and one thing led to another, and then Susan put us in touch.
[00:02:18] Carole Blueweiss: I know that it's very difficult to share these kind of personal experiences, and I really appreciate that you're here to do that and to help other families and even healthcare workers and teachers understand this disease a little bit more. Tell us who is your family and a little bit about who you are.
[00:02:38] Nafiz Cekirge: Sure. I am a lawyer in New Jersey with my wife and my three children. I have two daughters and a son. We have pretty typical existence around here. The kids are happy and healthy and in school and had friends and did activities, and then all of a sudden we were hit by this freight train called anorexia. And it's towards the end of 2019, my older daughter, she was 11 at the time, currently is 13, and my middle who's also a girl is 11, and my son, my youngest, is eight.
[00:03:17] Carole Blueweiss: Tell us a little bit about when you started to notice that something was off.
[00:03:22] Nafiz Cekirge: My oldest came back from sleepaway camp in Maine. It was around August of 2019, and we noticed that she lost quite a bit of weight, but that wasn't really that unusual because kids are so active at camp that we'd seen that before.
[00:03:43] But what we did notice was she developed a lot of rules and rigidity around eating. I can only eat blueberries for breakfast. I can only have, you know, chicken at three o'clock for lunch. And we weren't happy about the rules and the restrictions and having somebody so young so focused on food and calorie intake. But we figured, all right, it's something maybe she's going through, but it got significantly and progressively worse.
[00:04:21] So the rigidity got even more rigid and the restriction got to a point where it was unsustainable. I mean, it was like a pack of blueberries a day towards the end. To answer your question, it really started around September of 2019 and really hit rock bottom, I would say, in December of 2019. So over a two and a half to three month period.
[00:04:47] Carole Blueweiss: She was 11 years old you said?
[00:04:49] Nafiz Cekirge: She was 11 years old, yeah.
[00:04:52] Carole Blueweiss: Is there anything that you can remember that you felt could have happened that initiated it or? And I know it's very, very complex. Go where you want to go with this.
[00:05:04] Nafiz Cekirge: It was interesting because in retrospect there were things that were very related to eating that we didn't associate with an eating disorder. For instance, when I said that we started noticing the restrictions and the rigidity in September of 2019, but for about a year or two before that, she would bake. And when I say bake, I mean bake obsessively to the point where, you know, she'd sometimes start at noon and bake nonstop till one, two in the morning.
[00:05:40] Sometimes, she would wanna start baking at 10 or 11 at night, and it was a girl on a mission. There was no way you could stop it. And it was very complex things. It wasn't just a sandwich or a grilled cheese. I mean, we're talking cakes with fondant and I didn't even know what that was until she started baking.
[00:06:02] French pastries. Just really, really, really complex stuff. And in retrospect now, there was a sort of an OCD and a manicness to the baking and the hours that she was spending on it and when she was starting and baking through the night at that age. But in retrospect now, it seems that it was a very, the beginnings of an unhealthy relationship with cooking and eating and food.
[00:06:30] But back then it was wow, this girl is really passionate at eight about baking and she wants to be a pastry chef, you know? Yeah.
[00:06:39] Carole Blueweiss: Sure. At eight or 11?
[00:06:42] Nafiz Cekirge: Eating disorder, I would say we started really noticing it at 11, but she was baking at eight, nine. She was baking for many, many years at a very young age before that, but she wasn't really restricting her eating at that point. There was always this ever presence of food in the form of baking or something in her life.
[00:07:06] Carole Blueweiss: And did you or your wife have an interest in baking that, you know how it, how her interest came about or was that something just unique to her?
[00:07:16] Nafiz Cekirge: She was always, and always has been, you know, kind of eccentric and quirky and does her own thing. And I thought it was kind of cool. You know, she's eight and she's baking these complex French pastries, you know, and maybe this is her calling in life.
[00:07:31] Carole Blueweiss: Right. So she's baking starting at eight, and then at 11 you were starting to notice something that wasn't quite normal with food.
[00:07:39] Nafiz Cekirge: Yeah. It was unmistakable, I mean, very rigid, a lot of rules, a lot of restriction, and there was no breaking the rules. I mean, there was nothing that we could do. She is pretty strong willed as it is, but it was, we couldn't negotiate her into eating. We couldn't threaten her into eating. There was just absolutely no way we could get her to eat outside of her rules and restrictions. And those rules and restrictions kept getting more and more drastic as time went on.
[00:08:13] Carole Blueweiss: Did she lose a ton of weight that you started to be concerned in that respect, or were you just already concerned because the eating was just so odd?
[00:08:21] Nafiz Cekirge: We were more concerned really with the psychological and mental relationship to food. But the byproduct of that, because of all the restriction, was she did lose a ton of weight. She had some room to lose, so it wasn't concerning until the very end in terms of physical appearance. But she lost so much weight in such a short period of time. And this is one of the big dangers with anorexia is that when you're not getting enough nutrition, your body starts essentially cannibalizing itself.
[00:08:54] So her heart shrank by three standard deviations, and that's when it starts getting really dangerous with anorexia. Because when there's no calories for the body to consume, it starts essentially cannibalizing its own organs. That was a concern. She started having very, very low blood pressure. Lost about, I would say 50 pounds in a two-and-a-half month period. And at that point, we knew that it was really, really serious.
[00:09:26] Carole Blueweiss: How did you and your wife come together to figure out what are you going to do?
[00:09:32] Nafiz Cekirge: It wasn't something that we knew much of. You know, in popular culture, it's known as a teenage girl's disease. A lot of people are like, oh yeah, every girl goes through that. But maybe that's true to some extent. But when it's a serious, medically diagnosed anorexic case, it's unmistakable, and it's so much more than just not eating. And so we knew that she needed some medical treatment, both medical and psychiatric and psychological treatment. So Dr. Northridge at Hackensack University Medical Center, she's a leading expert on anorexia and adolescent medicine.
[00:10:10] We went to her and she essentially built a team with a therapist and a psychiatrist. But we really weren't even able to start that because she was just in such bad shape towards the end that she had to just be admitted to an inpatient program at Penn Princeton, which is one of very few facilities in the US that takes kids under the age of 13.
[00:10:35] Carole Blueweiss: And how was your daughter at this time? Like I could see you parents being worried and concerned and trying to get her the help. It sounds like you were right on it, but what about her? Did she feel like there was a problem at all?
[00:10:49] Nafiz Cekirge: Yes, she definitely felt like there was a problem. So let me back up. Things were getting progressively worse and we got her team together and then we went on winter break to Florida to visit her grandparents. I've noticed this as a pattern with my daughter. Every time there's a change in setting, she gets really bad in terms of eating. Florida was where she hit rock bottom, I mean eating virtually nothing.
[00:11:16] And at that point, she turned to me and said...well, I actually said to her, don't worry, we're gonna get you some help for this. And she looked at me and said, I'd really like that, but I didn't know there was help for this kind of stuff. So she definitely knew there was a problem. One of the scariest things of all of this is you really don't know how related cognition and nutrition are until you witness something like this.
[00:11:42] Towards the end, I mean, her caloric intake was so low that she was basically completely out of it, just very expressionless, kind of looked really depressed, but wasn't really communicative. She started hallucinating. She was hallucinating food particles in the air, so she was walking around with a scarf around her mouth because she didn't want them flying into her mouth.
[00:12:07] She thought there were dust particles in the air that were calories, and essentially her cognition just stopped also. That's when it gets very frightening too because then you start wondering what's going on here. When she was admitted at Penn, they couldn't really even do any meaningful therapy with her until they got her cognition back to where it should be.
[00:12:36] Carole Blueweiss: And I assume they were feeding her intravenously.
[00:12:38] Nafiz Cekirge: Yeah, that's another good point you bring. We were about to take her to what's called a partial hospitalization program, which is essentially you go in at nine in the morning and leave at five. But the morning we were supposed to go, she passed out in the shower and they rushed her to the hospital in an ambulance. Her blood pressure was really low. She was in bad shape.
[00:12:58] But even so...this just goes to show how irrational this disease is. If most people have an experience like that because they're not eating, you'd think they'd eat. She was still not eating in the hospital. Eventually, when she got to Penn about 10 days later, because we had to wait for a bed to open up, they put her on a feeding tube, which she was on for a month, which is, I think, the maximum they can leave it in without having to take it out and put it back in. So, yes, that's how they were feeding her.
[00:13:30] Carole Blueweiss: That's just hard to understand, right? I mean that-
[00:13:34] Nafiz Cekirge: It's very hard to understand. I wouldn't wish it on my worst enemy. But it's really not something you can really fathom unless you've seen it. I mean, you see a complete breakdown of mental and physical health at one time, both together.
[00:13:54] Carole Blueweiss: What kind of advice do you have for parents that are going through this?
[00:14:00] Nafiz Cekirge: That's a very good question. One thing I would say is, and I don't mean to gender stereotype, but from the people that I've seen, I see fathers minimize and deny this condition more than mothers. I mean, that's just my anecdotal experience. I don't have any statistics to back it up. But oftentimes, it's a battle between the parents where one parent thinks there's a serious problem and other parent thinks it's just a teenage girl going through what teenage girls go through.
[00:14:40] I would say it's an incredibly serious problem. It's far more deep-seated than somebody saying something hurtful or insulting in school. It's extremely complex and it's something that needs constant monitoring and attention. My advice would be is if you see a problem and, as a parent feels like it's a problem, then it's probably a problem. And you should get intervention right away because, like I said, once it gets past that point where the cognition's affected, it gets really hard to bring it back.
[00:15:23] Carole Blueweiss: How long did it take for her to come back to her normal cognition?
[00:15:28] Nafiz Cekirge: I would say a good three months.
[00:15:31] Carole Blueweiss: Wow.
[00:15:32] Nafiz Cekirge: Yeah, it's a long process.
[00:15:36] Carole Blueweiss: So I never really would've thought of that. Like you think of the physical, the weight. There's a psychological component, but still it's all about the weight.
[00:15:43] Nafiz Cekirge: Yeah. I mean, of course they're so interrelated, but with the weight, at least, you know, at Penn I knew that they had her on a feeding tube. So it wasn't the ideal way to get sustenance, but she was getting the necessary calories for the day to not be in danger. So, but for me, the far scarier and more perplexing aspect of it was the psychological aspect.
[00:16:14] Because, you know, when your child is hallucinating food particles and just exhibiting behavior like that, you think, is this, you know, early schizophrenia, is this psychosis? I mean, there's so many things that go through your mind and it's just a, it's a very scary place to be because it's not a situation where if you slap a cast on a broken bone and it heals.
[00:16:41] And another thing I would say is a lot of people suffering from anorexia have, you know, what they call comorbidity, like OCD and, you know, mood disorders. And so it makes anorexia an incredibly complex disease to handle because nothing is really in a vacuum. They all kind of bleed into one another.
[00:17:05] So part of the healing process is getting nutrition back into the body to stabilize that and then work on the psychological aspects. And oftentimes, you need a medication as well. And the doctors she had worked tirelessly to get the right medication when they're like adjusting by a milligram here, a milligram there. I mean, it's very, very, very difficult to watch. The results are not immediate. Requires a lot of patience, and it's definitely not a straight lineup.
[00:17:43] I mean, it's two steps forward, in some cases six steps back, and another two steps forward. It's something that just takes a really long time to stabilize when you've kind of hit rock bottom like that.
[00:17:56] Carole Blueweiss: The medications when they were trying to find the right balance, was that all inpatient or does that continue as an outpatient?
[00:18:04] Nafiz Cekirge: It definitely continues, at least in my daughter's case. Again, I went just anecdotally from having visited her every day when she was at Penn. I would say 90, if not 100 percent of the kids had some sort of other condition, mostly OCD.
[00:18:25] Carole Blueweiss: And would you say your daughter had OCD?
[00:18:27] Nafiz Cekirge: Yeah, most definitely. Most definitely. And those were things that I think she concealed from us, and when she went into treatment and therapy, the floodgate opened and it made a lot of sense to me because I have a little bit of OCD. My father certainly was undiagnosed because it was the 1940s and 50s in Turkey. He certainly has OCD characteristics, so it wasn't surprising to me at all.
[00:18:58] Carole Blueweiss: Tell us what happens after the hospitalization. What happened with your daughter?
[00:19:03] Nafiz Cekirge: I'll give you the stages of treatment and then I'll explain what happened with my daughter if that's okay. Generally, there's outpatient treatment, which is essentially your child going to a therapist and/or a psychiatrist probably once a week.
[00:19:18] Much of the current thinking is that the best way to treat anorexia is family-based therapy. If you have traditional treatment of anorexia, it'll typically involve your child having a therapist and a psychiatrist, but it'll also involve a family therapy session. That's the outpatient and if you can just stay with the outpatient, you're pretty lucky.
[00:19:42] Then there's this other level of treatment called partial hospitalization, and that's essentially the child goes in, you know, sometime in the morning, eight or nine in the morning, is there till five at night or six at night, every day. And they do intense therapy there. They have, you know, group therapy sessions, individual therapy. If the child can handle schoolwork, they have a couple hours of school. And you do that for some period of time.
[00:20:09] The next level above that is called residential, where it's not a hospital setting, but it's overnight. There's a psychiatrist on staff and there's a therapist on staff, and there's nutritionists and you're getting really intense therapy daily. You're monitored pretty closely by the nursing staff and the doctors, and if you can, you're going to school.
[00:20:36] And then there's the highest level, which is inpatient hospitalization, which is what my daughter started off with, and that's a hospital setting. That's where they can administer feeding tubes and they monitor your heart and your blood pressure and whatever else they need to. So that's sort of like the most serious. And, of course, a lot of therapy, a lot of psychiatric care, as well.
[00:20:59] And that's the highest level. With my daughter, she was initially, as I said, she was going to do partial hospitalization, but it just got past that really quickly. So she went inpatient at the University of Pennsylvania Medical Center at Princeton, which I have to give a shout-out to. It's one of the best eating disorder units in the country.
[00:21:20] Phenomenal place, and I think one of two that takes kids under 13. So we were very fortunate to be able to get her there. She was there from mid-January to mid-March. For two months. And once there, it's about hitting the weight goal and once she hit her weight goal, she was discharged to a residential facility called Hidden River.
[00:21:44] So she was there from March till June. And in June, she was finally discharged and has continued her outpatient treatment since then. So typically what you'll get is if it's the most, one of the more severe cases, inpatient hospitalization, then residential, and then outpatient finally.
[00:22:07] Carole Blueweiss: What was it like for you when she came home?
[00:22:10] Nafiz Cekirge: It was difficult in the sense that she was in treatment for six months, and yes, she was much better than she was when she got admitted to Penn, obviously. But she still wasn't eating on her own. I mean, we had to supervise every single meal, and if we didn't, she would eat nothing. It was better in the sense that every meal wasn't a knockdown, drag out fight, so we could at least get her to eat what she could in a sort of very workmanlike businesslike fashion. She just did what she had to do and was done with it. Relief that she's eating, but also a lot of disappointment that it's not back to normal, for lack of a better word.
[00:22:58] Carole Blueweiss: How did your other kids respond?
[00:23:01] Nafiz Cekirge: Well, it was tough on them because the last they saw her was basically in an ambulance being rushed to Hackensack Hospital after she passed out. I mean, they clearly knew there was an issue and then they couldn't see her again. Penn had a policy against siblings coming to visit, and then there was Covid. They knew that we would go visit her, my oldest daughter, every day in Princeton, but there were still these question marks. My daughter would sometimes come up to me and say, is my sister still alive? Are you sure she's still alive?
[00:23:34] It was very tough on them. We weren't present at all because we went to visit her every day pretty much. So that's three-hour round trip driving, leave at around five to make visiting hours at seven and come home at around 11. And when we weren't doing that, we were typically in family therapy with her at Penn.
[00:23:58] It was very tough on them. I mean, we were fortunate that my mother lives in the city, so she came to help. It was a combination of anger because they felt neglected and also concern and question marks in their head. You know, if this person's my sister and she's still alive and around, why am I not seeing her? But I think it was a very confusing time for them.
[00:24:24] Carole Blueweiss: And were they able to ever participate in any kind of therapy or family therapy?
[00:24:30] Nafiz Cekirge: That would've been the ideal situation. I think one of the real psychological blows to my oldest daughter was when she went to Hidden River, none of us could go see her, and she was used to us doing that on a daily basis. And that was because of Covid, the pandemic policy. Ideally, it would've been family therapy and a lot of visitation there, but we didn't really get that because of the circumstances of the pandemic.
[00:24:57] Carole Blueweiss: Hmm. That's rough. And would your younger kids have been able to participate had there not been Covid?
[00:25:05] Nafiz Cekirge: Yeah, they would have to some degree. I mean, I think the current school of thought on this is that, you know, family based therapy is a very important part of the healing process. So they would have. Once my daughter was discharged and we were doing it on an outpatient basis, we did do family sessions with my younger two children participating as well.
[00:25:29] Carole Blueweiss: So they understand now for as age level ability to understand what happened.
[00:25:37] Nafiz Cekirge: Yeah. I mean, they know that there's a serious problem. I think they're still, as you would expect kids to be, sometimes somewhat resentful just because they feel like, truthfully, our oldest daughter does consume us.
[00:25:53] It's such a serious issue and it's just very time-consuming in terms of doctors and therapy and constant monitoring that there's only so many hours in the day and two of us. So is is very hard to strike that balance. On the one hand, you have one child that desperately needs you and it's a matter of life and death, but you have in my case, two others that still need parental attention.
[00:26:21] Carole Blueweiss: Yeah. It almost becomes like a whole nother conflict.
[00:26:26] Nafiz Cekirge: Yeah. Yeah, I mean, I saw my middle daughter's personality change quite a bit. You know, it's obviously, you can't necessarily say it's because of this, but she went from being very, for lack of a better word, sweet, and always listened to what we said to being middle finger to the world, screw you type of personality, and she's only 11.
[00:26:49] Carole Blueweiss: Do you think the teachers were prepared to understand what was going on, or did you have to explain it to them, or how does that work?
[00:26:57] Nafiz Cekirge: We withdrew her from school, obviously, when this happened. Now each of these programs, they offer schooling. So my daughter was attending, following her public school's curriculum when she was at Penn and Hidden River, to the best of her ability. But in a weird way, the pandemic worked in her favor because when everything shut down and everybody went virtual, and some of her friends remained virtual throughout the following year, her absence wasn't quite as noticeable.
[00:27:29] I mean, there were certain close friends of ours whose kids she grew up with, they didn't even know, you know, that my daughter was in treatment because nobody was in school and nobody was visiting. We were all sheltering in place. So, one way to look at it is the pandemic kind of made this less of a red flag in her peer group.
[00:27:52] Carole Blueweiss: How is your daughter doing now?
[00:27:55] Nafiz Cekirge: She was, I think, doing great, on upward trajectory. And, you know, she was still needing our supervision to eat, but again, she was eating what she needed to eat. Variety was getting better. Rigidity was kind of going away. And, I mean, you're talking like a year and a half after treatment so you can kind of get an idea of how long this all takes.
[00:28:16] And then summer camp rolled around and she really wanted to go. We thought about it. We didn't really want to deprive her of that opportunity and she was very excited about it. She'd been going to it since, this particular camp, since she was first grade or something. She was really young when she went away. And she went and literally two or three days later, she just stopped eating and completely reverted. So we had to go pick her up.
[00:28:46] It's been about a month since we picked her up and she's much further back than she was before she went to camp. So one word of caution that I would have to parents is, and I've heard this is true for other parents, that I've - not just anorexia, but a very close friend of mine is bipolar, and he says the same thing is aptable to him, but change in setting and routine has devastating effects sometimes with these illnesses and it really sets you back. That's just, I would put that out as a word of caution.
[00:29:22] Carole Blueweiss: Is she home now?
[00:29:25] Nafiz Cekirge: Yes, so she's home. We're supervising her eating. I'm hoping that she'll continue to improve so she doesn't have to go to an inpatient facility. We've signed her up for partial hospitalization setting that she's slated to start next week. Hopefully that'll give her a little bit of extra support.
[00:29:45] Carole Blueweiss: Do you see her using some of the skills that she was taught the first time around with all the different treatments? Do you see any of that being used by her or any increased awareness on her part?
[00:29:59] Nafiz Cekirge: Honestly, I can't say that I do in the sense that she was really so far gone when she went into Penn that there wasn't really any meaningful way to do therapy. And the therapy just, she didn't, it didn't sing to her. It didn't work for her. What did help tremendously was the medication. I wish I could say it did. I wish I could say that she learned great techniques that when she finds herself in distress that she uses. I, unfortunately, I don't think that that's the case with her.
[00:30:35] I mean, she's going to be in therapy for this for a long time. So maybe as she gets older and matures or maybe finds a therapist that she connects with again, that'll change. But right now I can't say that that's the case.
[00:30:50] Carole Blueweiss: Does she see the therapist for one on one still?
[00:30:55] Nafiz Cekirge: She sees a psychiatrist, which she loves and we love too, and she does both the therapy and the medication component of it. We talked about this and we all agreed that she'd just gone through so much therapy and institutionalization, that just this was better to just continue with her psychiatrist who she really loves. And with mental health professionals, so much of it is a connection between the patient and the therapist or the doctor.
[00:31:26] In fact, I think that's a large majority of it. And my daughter, she doesn't often find therapists that she really likes. She really loves her psychiatrist, so we just didn't want to overwhelm her with another therapist in the mix quite yet. But ideally, that's the thinking is yes, you need therapist, a psychiatrist, and a separate family therapist too, that sees the family.
[00:31:51] Carole Blueweiss: What about you and your wife? Do you see a therapist?
[00:31:54] Nafiz Cekirge: We do, we do. We see, and I'm going to give a shout out to her, Dr. Amy Begel. She has been wonderful. When my daughter was getting ready to get discharged, we knew that we had to do family therapy and so we started doing therapy with Dr. Begel. And she's, I mean, my wife and I have been seeing her regularly every week, pretty much for the last two years which has been extremely helpful, frankly. Not for just for from my daughter's perspective, but for our marriage as well.
[00:32:28] Carole Blueweiss: Yeah, sure. So you go together. As opposed to individual.
[00:32:32] Nafiz Cekirge: Yeah, we go together. We go together. And another thing that's interesting is this is I think now has a lot to do with the OCD aspect of this, but a lot of times things that you or I will just see and shake off and be like, ah, it's no big deal. My daughter will get fixated on them. So if my wife and I get into the slightest argument, she gets very fixated and insecure about it, and that's one thing that we noticed about her.
[00:33:09] I mean, she has a lot of fears and phobias and insecurities, and one of them was that her parents would split up. So all these things that, you know, my wife and I would frankly forget five minutes later, get amplified in her mind and she would just latch onto them and fixate on them. So, you know, the family therapy aspect was very helpful from that perspective.
[00:33:33] Carole Blueweiss: What are you learning from your daughter?
[00:33:38] Nafiz Cekirge: I have become a very empathetic person, generally. I think it's opened my mind up a lot. I think people have a lot of challenges that sometimes are there and looking you in the face and you ignore them. I've just become a lot more understanding, I think, and not just for the perspective of people who have mental health challenges, but, you know, I generally try to see where other people are coming from a little bit harder than I used to. And I think it's, if you have a soul, it's hard to go through something like this and not kind of have that reaction.
[00:34:27] Carole Blueweiss: Yeah. Do you feel that being a father, how has that influenced maybe what you've learned or how you've changed or how you see your children?
[00:34:37] Nafiz Cekirge: Yeah, I mean, as a parent, it would always really irritate me when parents try to, you know, lord over their children what I thought were ridiculous things. Say thank you and, you know, and just little things. Just, you know, really to oppress children, under the guise of teaching them to be polite. I thought there were a lot of needless power struggles between parents and children and I found myself, even though I saw myself as a pretty relaxed, laissez fair, no rules type of person, that I was also engaging a lot needless power struggles and minimizing my children's reaction as to why they were trying to take a stand against me.
[00:35:27] So I've just, I try to take a step back and not try to do things just for the sake of doing them because I'm the father. I think that's one thing that I've learned from this as well. It's not to butt heads just for the sake of butting heads.
[00:35:47] Carole Blueweiss: And what about like you and your wife? How did you manage that, that you, I'm guessing each had your own way of responding and dealing, and how did the difference or maybe the similarity evolve for you?
[00:36:02] Nafiz Cekirge: Philosophically, we had different views. I had a very oppositional screw you to the world's attitude and anybody telling me what to do, I thought was somebody trying to oppress me and break my will. And for that reason, I never tried to do that to my children. I prided myself on really kind of having a free for all at my house. And my wife's view was, that's fine but you need a certain amount of discipline to just provide basic security in the home to the kids. You know, these rules set you free in a sort of weird sort of way.
[00:36:50] And I think one of the biggest things for us in our therapy sessions was how to realize that my constant, I'm not gonna do what you're telling me to do was imprisoning rather than freeing in a lot of aspects. I think she came to a point where she was monitoring less and I think we're trying to move to the middle and that, you know, that that was a long, interesting topic in therapy over the last two years.
[00:37:20] Carole Blueweiss: From that, sounds like you've learned all that, that you just expressed, right? That wouldn't have really come about. Maybe, maybe not. Maybe it would've. Who knows?
[00:37:31] Nafiz Cekirge: Yeah. Yeah. And you know, I see it in my daughter, too. I mean, she is oftentimes sort of crying out for us to tell her what to do, and that will just, until, you know, recently violated every core of my being to try to control people and tell them what to do.
[00:37:53] So, it was a very eye-opening experience to actually become conscious of that and try to balance giving them a certain degree of freedom versus trying to provide some security and the rules. But, yeah, it was very interesting going through all of that.
[00:38:10] Carole Blueweiss: Can you tell us what is anorexia and how does one get diagnosed with that condition?
[00:38:16] Nafiz Cekirge: The way I would define it, and I, this is probably, I don't know what the clinical definition is, but I would say a lot of rigidity and rules, first and foremost, around eating. I can't have any carbs whatsoever. And that rigidity then leading to restriction to a point where you're just not getting enough calories to survive.
[00:38:45] Carole Blueweiss: Hmm. How is it diagnosed?
[00:38:48] Nafiz Cekirge: I think it's kind of hard to miss when it gets to that point. There's the element of rationality disappears from the food conversation, and coupled with that, you have all the cognition issues that you start getting from malnourishment, and then there's just the rapid weight loss, typically.
[00:39:08] Carole Blueweiss: Yeah, yeah. Was her OCD tendencies, was that something that was at all a psychiatric concern before it became an eating disorder?
[00:39:18] Nafiz Cekirge: No, it, I mean now when we talk to her about it, you know, she tells us all sorts of things like, you know, I'd have to do this in my head, I'd have to do that. But we didn't really pick up on it, but it became pronounced as the anorexia started getting worse, too.
[00:39:37] But now that we're conscious of it, I mean, the signs are all over the place and that has a lot to do with the rigidity and the rules. So that's why I think a lot of these kids who had anorexia also had OCD issues.
[00:39:51] Carole Blueweiss: And how ironic is that? How you talk about, and I thank you for being so honest and generous with your feelings, but it's super, super interesting to hear. Ironically, you say that about not wanting rules in the house or believing in pretty much free expression, which is completely understandable. And then your daughter goes ahead and makes her own rules that are self destructive.
[00:40:13] Nafiz Cekirge: Yep. I mean, she in a way imprisoned herself with her own rules in many ways. You're right. And one other thing I want to mention actually, which to me was the biggest surprise, having had no experience with this disease. I thought it was entirely limited to girls. And I was shocked to see that when I was at Penn, at any given moment, about 20-30% of the patients were young boys. So I would tell parents to watch out for their sons, too, because there's no rule that says it's just limited to kids who identify as girls.
[00:40:58] Carole Blueweiss: And you saw these boys?
[00:41:01] Nafiz Cekirge: Yeah, yeah, I did. And, you know, exhibited the same symptoms and behavior that the girls did.
[00:41:11] Carole Blueweiss: And it makes sense because it's, the reasons why this happens are psychological and cultural and complicated. And whether you're a boy or you're a girl, you still have those same pressures. I remember I read in the New York Times article about that statistic, how boys are also definitely at risk. We don't think about it, right?
[00:41:36] Nafiz Cekirge: Most definitely. We don't think about it. Many of the residential facilities, for instance, I mean Penn was co-ed, but many of the residential facilities are just for girls. So there definitely is a gender bias in the way I think it's treated and viewed in both pop culture and the medical community. Come to think of it, I don't even, I'm sure there are, but I mean all, when we were looking at residential facilities, they were almost all of them were for girls. I would just keep an eye on that. There are probably a lot of boys who are suffering in silence because, you know, this is probably, somebody said this is a girl's disease or something like that.
[00:42:21] Carole Blueweiss: What about the idea of feeling guilty? It doesn't sound like you have that, and I just read about that that can be something that's difficult to deal with as parents. And maybe even your daughter feels some guilt in different ways. Do you have anything to say about that?
[00:42:38] Nafiz Cekirge: Yeah, I mean, guilt's not just, it's just not something that I feel in this situation. I mean, my daughter feels guilty just as a general insecurity that she has about a lot of things. But as a parent, I don't think my wife and I, guilt is something we feel, which is not to say that that's true for every parent. But it's not something that's really factored into our sort of calculus.
[00:43:10] Carole Blueweiss: What has been your experience with your friends and how they have treated you and your daughter?
[00:43:16] Nafiz Cekirge: Our friends have been great. One of my best friends has bipolar, and he was a great source of comfort and information for me because he's, you know, living a very successful life. And after I got back from Penn, you know, one of the best things we do is we take a walk together for, you know, 15, 20 minutes.
[00:43:41] And, you know, we would go through a lot of very personal experiences that he had with battling his mental illness and for me, it was great because it was educational. It was inspirational because I could see him overcome so much and you don't see that a lot. You also see a lot of people not overcoming.
[00:44:03] So for me, it was very inspirational to see that. It was very empathetic and that source of support was very, very good for me. As for my daughter's friends and our friends, you know, they've been wonderful. I think one of the factors that helped with that was, well, I was a firm believer in not hiding any of this because I didn't think there was anything shameful or stigmatic about it.
[00:44:34] And in fact, I got the sense that this may be a lot more widespread than people think. And sure enough, I posted an article on social media about the fundraiser actually my daughter was doing for Penn, and one of my really close friends from college, who hadn't spoken to in 15 years, called me hysterically crying, and we talked for three hours and she said, I'm so glad to have seen that because I'm going through the same thing and I have no idea what to even do about it. The pediatrician didn't really know and I was just at a complete loss.
[00:45:11] So I think it was important for me personally to find somebody that understood that I could talk to, and I thought it was extremely important also not to be secretive or act as if this is something to be ashamed of. And I feel that about all mental illness, by the way, not just anorexia.
[00:45:32] I think there are enormous challenges for people who suffer various mental issues. I think mental healthcare is very hard to access. It's incredibly expensive. We haven't talked about that. When I saw that this was going south with my daughter, I was fortunate enough that I got the Cadillac of health insurance plans, and they covered all of this. But when I was at Penn, there were routinely kids being rushed out of there because insurance was, didn't wanna pay anymore. And that's for insured people. If you don't have any insurance and you have mental illness, I mean, you're condemned to a really difficult, difficult brutish life.
[00:46:19] Carole Blueweiss: The idea of hiding this, I'm glad you brought that up. Why do you think that is? Why do you think people don't want to talk about it?
[00:46:26] Nafiz Cekirge: I think there's just a huge stigma associated with mental illness in general. I think people think it's a sign of weakness. I think people think that it's genetic and there's something wrong with their genes, and it's something that they could pass on down to later generations. And I think a lot of people think this stuff is incurable and untreatable, so they don't want to put that stamp on their children. There's just this sense of shame and embarrassment surrounding mental illness and I think that that's incredibly important to overcome. And I just think mental health services are woefully deficient.
[00:47:13] Carole Blueweiss: And what do you think would come out of people talking about it more? Why do you think it's important to overcome?
[00:47:19] Nafiz Cekirge: I think more people will come to terms with the fact that this is a real issue. It's a real disease like any other disease. It's something worthy of treatment. It's something that we as a society should invest in. I think the more it comes out in the open and everybody realizes that they know somebody who has a mental health issue, I think the general feeling of empathy will increase.
[00:47:49] Carole Blueweiss: Yeah. Yeah. It's very well said. Where does somebody go if the child doesn't need hospitalization? Like, because you even said the pediatrician doesn't necessarily know what to do. So who do you go to?
[00:48:03] Nafiz Cekirge: Yeah, I mean, I think that's a very good point. I think there are very few doctors and facilities who truly understand this disease. If you look up any psychiatrist or any therapist, it'll be a long laundry list of what they're experts in. You know, addiction psychology, this, and anorexia and eating disorders are inevitably listed as one of them. But there are not a large number of people who understand this disease, and it's very complicated.
[00:48:31] It's not an area that I think people really understand yet. You know, a lot of mental illnesses that people think of like schizophrenia or bipolar, there's been a lot of research. There's medication that helps a lot. There's no pill for this. It's really wishy-washy in a lot of ways. There's no real thing you can point to, like a single traumatic event or something like that.
[00:48:58] You gotta get the right people. So I would say that you have a child who you are worried might have an eating disorder, and you're afraid that it might get worse and it can spiral out pretty quickly, I would start looking first somebody like a Dr. Northridge who's, you know, an adolescent medicine specialist who actually understands this and she can coordinate the care.
[00:49:25] And I think a good option is the partial hospitalization programs where it's called hospitalization, but it really isn't. I mean, it's essentially you go like you go to school and it's a lot of intense therapy, but it's very important to have a doctor who, like a Dr. Northridge who can coordinate the care.
[00:49:46] Carole Blueweiss: So to find somebody like her in whatever area someone lives in.
[00:49:51] Nafiz Cekirge: Yeah.
[00:49:51] Carole Blueweiss: That can do some coordination and has an overall understanding.
[00:49:57] Nafiz Cekirge: And you may have to go outside your area. It's not fun, it's not pleasant and, you know, a lot of people can't do that, like with their employment status or, you know, childcare and things like that. But you may have no choice, unfortunately.
[00:50:12] Carole Blueweiss: Is there anything you'd like to say that we haven't touched on yet?
[00:50:15] Nafiz Cekirge: I feel like I've talked your ear off.
[00:50:18] Carole Blueweiss: No, you were great. I mean, to hear you speak about your own experience is just very heartwarming and refreshing because it's coming from you and I think parents can learn and healthcare workers, and teachers and others can just learn from what you've been through.
[00:50:34] Nafiz Cekirge: Yeah, I mean, I would say be vigilant. If it doesn't feel right, it's probably not right. You kind of have that parental instinct that it's just not acceptable or right that your daughter's eating just a few blueberries a day. Don't despair as some days are really dark and it looks like you're making absolutely no progress.
[00:50:56] In fact, you may feel like you're regressing. Don't spiral out of control thinking is it this, is it that, you know, is this psychosis? Is this that? Just kind of understand that it's a very, very, very long like triple marathon and there's gonna be ups and I can guarantee you there'll be a lot of downs, but it does improve.
[00:51:18] I mean, it doesn't sound like my daughter, you would say, well, she just regressed after two years after her discharge, and she's still not eating unsupervised. But if you saw where she was in January of 2020 where she was pretty much nonfunctional, it's a huge improvement.
[00:51:36] Carole Blueweiss: So that's great. Well, thank you so much. Thanks for sharing.
[00:51:40] Nafiz Cekirge: Thank you. My pleasure.
[00:51:42] Carole Blueweiss: What do you recommend, I don't know if you would want people to get in touch with you?
[00:51:46] Nafiz Cekirge: I would love for people to get in touch with me. If you have anybody who has any questions, I'm a phone call or email away. I just feel like I've experienced an incredibly severe case of this that I've just educated myself enough both through reading and just personal experience that I know how dark and hopeless it can get. So I'd be happy if anybody has questions, they can reach out to me.
[00:52:13] Carole Blueweiss: I will put your contact information in the show notes. Tell us a little bit about your advocacy work.
[00:52:21] Nafiz Cekirge: My advocacy really started like a lot of people's advocacy starts, which was doing fundraisers, and I did that. Now by, I view this podcast as further advocacy work and I just like to get out there and talk to as many people who want to talk to me. I'm a pretty open person. I like to think that I don't judge anybody about anything. I know that feeling of despair, like you're not gonna get out of this. My hope is that for any parent out there who feels hopeless, they can pick up the phone and call me and I can kind of reassure them a little bit.
[00:53:04] Carole Blueweiss: Well, thank you again for being here on Wisdom Shared. You certainly shared a lot of your wisdom with us and I greatly appreciate that.
[00:53:12] Nafiz Cekirge: My pleasure. It was wonderful talking to you and thanks for giving me the opportunity.
[00:53:23] Carole Blueweiss: Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you're hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month.