A New Eating Disorders Support Group Comes To Southampton, Filling A Need

Dee Gredysa recently got to enjoy a high school friend’s baby shower. For one, she was there — actually present. For another, she was able to eat a delicious meal with loved ones, the same meal that others enjoyed, too.

But she consciously avoided the dessert, a gluten-free cake that her friends raved about even the following day.

“That’s where I still know that it’s there,” Ms. Gredysa said during a recent interview at Silver Linings Diner in Southampton, as she sipped on a bright green matcha oat milk latte.

She was referring to the eating disorder that she’s struggled with since she was 14 years old. She’s now 32 and in recovery from the disease, one that she says brought her to “the gates of hell.”

It wanted to kill her, she said. At one point, she weighed about 90 pounds — and was still trying to lose weight.

After living and working in New York City for a few years at a global consulting company, and spending time at treatment facilities across the country, Ms. Gredysa has returned to her roots on the East End as a certified health coach. She was a standout high school field hockey player and a top student here — and Southampton is where she first began to struggle with an eating disorder.

But with wisdom from her own experience, Ms. Gredysa is marking a different path for herself and others in the community. She founded an adult women’s eating disorder support group in August that is held every Wednesday at Ananda Wellness and Yoga in Southampton Village. She made it very clear that she created the group for the community — but also for herself.

“It didn’t exist, and I need it. I need a support group,” she said. “There’s no dialogue around it out here.”

Eating disorders are mental illnesses that can be caused by many different factors, including genetic, psychological or cultural influences — and they are relentless.

Research says 30 million people in the United States will struggle with an eating disorder at some point in their lives, and the disorders have the second-highest death rate of all mental illnesses, after opioid addiction. They affect people of all ages, genders and ethnicities.

The National Institute of Mental Health defines eating disorders as illnesses that cause “severe disturbances in people’s eating behaviors and related thoughts and emotions.”

This description doesn’t quite illuminate the intense preoccupation people with eating disorders struggle with, from moment to moment. Those thoughts and emotions can dominate a person’s entire life, and can therefore hurt more than health — they take a toll on relationships, friendships and other interpersonal connections.

“I’ve had patients say to me pretty frequently that I’d rather die than gain weight,” said Dr. Allison Eliscu, division chief of adolescent medicine at Stony Brook Children’s Hospital, and assistant professor of pediatrics at Stony Brook University School of Medicine. She stressed that eating disorders are dangerous because they affect both mental and physical health, which makes them difficult to treat. Usually, people who are struggling have an “absolute fear” of gaining weight, and, at times, a real obsession with counting calories or the actual number on the scale.

A multidisciplinary team consisting of a therapist or psychiatrist, a medical doctor and a dietitian is generally recommended for effective treatment.

“One person alone can’t do it,” Dr. Eliscu emphasized, noting that eating disorders don’t have the best prognoses. Patients can die from complications of malnutrition, including heart attacks or suicide. For those who don’t, she said, there’s only about a one-third chance of completely getting rid of the illness.

“Many adults will continue to suffer with it, especially those who don’t face it or deal with it,” she said.

Ms. Gredysa has crafted the support group to be both therapeutic and practical in nature. She uses a book, “8 Keys to Recovery from an Eating Disorder” by Carolyn Costin, to guide the weekly sessions, as it has helped her throughout her own recovery journey.

The author, who is an eating disorder therapist herself, founded Monte Nido and Affiliates, a residential and intensive outpatient eating disorder treatment program. She considers herself completely recovered from an eating disorder and maintains that full recovery is possible, Ms. Gredysa said, which is important to her.

“I’m sure as hell going to try to recover,” she said with determination.

While the members talk about their own journeys with eating disorders and their struggles, the goal of the group is also to arm them with tools they can use in everyday life to challenge eating disorder behaviors.

“Everyone’s crying, and everybody’s saying something that I’ve experienced, something that I need to hear for myself, something that’s reinforcing my recovery,” Ms. Gredysa said. “It’s so healing, because on the other side of suffering is compassion.”

Ms. Gredysa first knew she had an eating disorder when she was in high school. She ate an apple — and began crying.

It was also during that time when she noticed that she had begun to separate herself from her friends.

“I still remember that moment of being, like, ‘Whoa, who is this?’ Because I always wanted to be around people,” she said. “It’s because the eating disorder is so isolating, and you get so depressed, and you don’t have the energy.”

Ms. Gredysa would get up early in the morning to run several miles before school, even in the rain. She barely ate and would force herself to throw up the little food that she did eat. She wasn’t able to interrupt these eating disorder behaviors on her own, which is how she knew she needed more intensive treatment to get better.

When she went away to college at Villanova University, she sought treatment for the first time at the nearby Renfrew Center.

Ultimately, throughout the course of her recovery journey, she has been in a variety of settings: inpatient facilities, where patients are considered medically unstable; to residential treatment centers, where patients are considered medically stable but psychologically still very much consumed by the eating disorder and don’t benefit from less intensive treatments; to partial hospitalization, where patients are considered medically and psychologically sound, but the eating disorder still greatly affects daily life.

At one point during treatment, Ms. Gredysa was fed every two hours and was forbidden from walking anywhere immediately after eating — even close distances. That was considered a “behavior” that was seen as an effort to burn off calories from the meal.

“Everybody shares what they feel about that subject and what their journey has been around it,” Zuzanna von Salm, a fashion model who started struggling with an eating disorder when she was a teenager, said about the group. “That alone is so healing, because everybody kind of opens up.”

Ms. von Salm, who said she considers herself to be on the “recovered side,” had attended the group only a single time when interviewed. She said her illness had been tightly intertwined with her career as a fashion model, where her agents encouraged her to starve herself and refrain from exercising to get rid of muscle definition.

Ms. von Salm stressed that the group is particularly helpful because Ms. Gredysa understands what it’s like to struggle with an eating disorder herself.

“I feel like you can’t teach something if you haven’t gone through it,” Ms. von Salm said, noting that she recently took a course on birthing, only to find out that the instructor had never given birth herself. “Dee’s group is very authentic, because she knows what she’s talking about from her own experience, and she’s not afraid to talk about her dark moments as well.”

Ms. von Salm is outspoken about her journey with anorexia and bulimia. She has contributed to a book titled “Hope With Eating Disorders” by Lynn Crilly, co-directed a series of interviews on the subject that are on YouTube, and told her own story in a video that’s been viewed nearly 300,000 times.

“You are just judged by your appearance every single day, so it’s kind of hard to exist in that realm for so many years,” Ms. von Salm said, noting that panic attacks often accompanied her eating disorder when she was at her worst. “Once my menstrual cycle disappeared for a while, I was, like, okay, this is my body telling me something.”

Even though Ms. Gredysa considers herself to be in recovery, that journey means she consistently needs to make choices that will move her toward being fully recovered. The group is meant to help her and others do that. It’s meant to strengthen what she referred to as her “healthy self,” as opposed to her “eating disorder self.”

“That’s what I think is scary,” she said. “That ‘eating disorder self’ can be so strong, can be so sneaky.

“Sometimes it can be, like, ‘Oh, you had a meal, you don’t really need the cake … it’s sugar, and, like, you don’t need sugar,’” Ms. Gredysa continued, using a sweet, deceptive tone. She was referring to her internal dialogue when she turned down the cake at her friend’s baby shower. The “eating disorder self” was perhaps stronger in that moment — it didn’t allow her to enjoy a piece of cake with loved ones.

Ms. Gredysa said the “eating disorder self” should just function as part of a whole. She flailed her right arm slightly, stressing that it should be no bigger than that.

“It’s become like a part of my identity, it’s become a way that I cope with my feelings, it’s become a part of my personality, it’s affected my relationships, it’s affected my interests, how I structure my time,” Ms. Gredysa said. “It’s like a real unpacking and kind of starting again, looking at all the areas of your life and saying, ‘Who is making those decisions?’”

Ms. von Salm also said she’s figuring out how to strengthen her “healthy self,” as attending the group illuminated just how many times throughout a single day the “eating disorder self” was present. With a young child now, she’s noticed how important it is for her to be able to sit down and eat a meal with her family.

Mary Angela Buffo, 59, the owner of Ananda Wellness and Yoga, where the group is held, has taught yoga, meditation and energy healing for over two decades. She struggled with anorexia when she was in her early 20s.

“I have a deep understanding, personally besides professionally, what it’s like to struggle with it,” she said in an interview at her studio. “We live in a culture that’s very thin-promoted. When I was at my worst, people were giving me the most strokes.

“Society is basically telling me to starve myself,” she continued, noting that anorexia was a way for her to feel a sense of control over what was going on in her life at the time.

Indeed, Genna Hymowitz, Ph.D., a psychologist at the Stony Brook Medicine and Bariatric Weight Loss Center, as well as the director of the Behavioral Medicine Program at the L. Krasner Psychological Center, and an assistant professor at the Mind-Body Clinical Research Center, which offers group intervention programs for people with binge eating disorder and bulimia nervosa, said in a telephone interview that societal ideals work against people with eating disorders.

“There’s a lot of weight-based stigma out there,” she said. “Some individuals have experienced weight-related abuse or bullying from an early age — that can be difficult to overcome and to address. In treatment, though, it is definitely possible.”

Even though she’s been in recovery for decades now, Ms. Buffo said that eating disorder behaviors can reappear. After she ran the New York City Marathon when she was 40 years old, she stopped eating and fell into old eating disorder behaviors.

“I got triggered because I was thin again — super thin,” she said, noting that she was able to recover after attending a yoga center in upstate New York.

As traditional therapy appointments usually end when the session is over, Ms. Gredysa’s group evidently brings a more personal touch. She makes a point to check in on members who might need extra support the following day since tough experiences can be brought to the surface.

There’s often a stereotypical image of what a person with an eating disorder looks like: an extremely thin, white woman. But eating disorders don’t fit into a single picture, nor do those battling them, and, in fact, the disease often might not be visible at all.

Treatment, however, might differ based on the severity of physical manifestations. Dr. Eliscu said that those can include a low heart rate or cardiac arrhythmias, elevated liver or kidney enzymes, hair loss, dry skin, and body hair growth.

Another difference with eating disorders, when compared to other illnesses, for example, is that the person suffering with an eating disorder might be blamed. “We’re not so embarrassed to tell people we have asthma or diabetes or even cancer, but we are embarrassed to say that we have things like depression or an eating disorder,” Dr. Eliscu said. “It’s a medical condition, and it needs to be treated.”

For example, she said that a patient with diabetes would never be asked to “think really hard” to get their blood sugar to return to normal levels. But people without an understanding of eating disorders and their complexity might falsely believe that it’s a mindset problem — and that a changed mindset is all that’s necessary to recover.

As an adolescent medicine doctor, Dr. Eliscu said she has more formal training and exposure to patients with eating disorders than other physicians might have. Pediatricians, for example, might be uncomfortable treating the mental aspect of eating disorders, while psychiatrists might not want to treat the physical manifestations of the illness.

And with an apparent lack of treatment options available on the East End, travel to the Stony Brook area can still be a trek.

“Even that, when you’re in your eating disorder, to be traveling an hour, an hour and a half, for treatment, I was, like, I can’t do this on a daily basis, weekly basis,” Ms. Gredysa said. “I want to continue being in recovery.”

Center for Discovery is a relatively new residential treatment facility located in East Quogue but treats only girls and boys between 12 and 18 years old. The closest similar treatment facility for adults is Monte Nido and Affiliates in Glen Cove in Nassau County, about 90 minutes away.

Barbara-Jo Howard, a spokesperson for Stony Brook Southampton Hospital, said in an email that there are clinicians who treat patients with eating disorders locally.

“In addition to the breadth of professional and clinical resources Dr. Hymowitz and Dr. Eliscu [offer], there are psychologists and social workers in our local area who do work with eating disorder patients,” she said.

A tool on the National Eating Disorders Association website locates clinicians on a map who specialize in treating people with eating disorders across the United States. It populates only one person — a dietitian — on the East End, in Southampton. The next closest specialist appears to be a social worker in Blue Point.

“Here, I can’t even find a therapist, a support group — forget about what I need to take me to the next step,” Ms. Gredysa said, referring to her recovery. “I need to get creative.”

Asked if she thinks there’s enough formal eating disorder training for medical students in general, including how to detect the illnesses as well as how to treat them, Dr. Eliscu said there isn’t. “It’s a pretty specialized training, and it’s a very difficult, complicated group of patients to deal with,” she said, noting that the crossover between mental and physical health is part of what makes eating disorders difficult to treat.

In fact, psychiatric medical students at Stony Brook University are taught only one course on eating disorders every year. “That’s the only experience that they’re getting right now, is me giving them a lecture once a year,” she said.

“It is so under-taught,” Lauren Smolar, the senior director of programs at the National Eating Disorders Association — the largest non-profit dedicated to helping people with eating disorders and their loved ones — said in a telephone interview. “We know that often people have an optional seminar for eating disorders and they’re not really prepared.”

She added, “We do recommend that if you are seeing a specialist, that they do specialize in eating disorders.”

Ms. Smolar stressed that many physicians don’t know how to screen for eating disorders at all because of the stigma associated with the disease — it is a mental health problem — as well as plain lack of awareness of symptoms.

Dr. Hymowitz echoed that sentiment and said it is helpful to have clinicians who specialize in treating eating disorders, especially because treatment approaches might differ. For example, cognitive behavioral therapy — an approach that highlights the connection between thoughts, behaviors and feelings and works to change unhelpful thoughts and behaviors to improve mood — is an evidence-based treatment for eating disorders, specifically binge eating disorder and bulimia.

“It’s important to be aware of all the factors that do impact disordered eating behaviors,” Dr. Hymowitz said, adding that mental health providers are trained to address many different conditions, but often there isn’t a big focus on disordered eating. “It does require somebody to go above and beyond to get the specialized experiences.”

When Ms. Gredysa first began struggling with an eating disorder in high school, her friends didn’t quite understand. After all, she was a top student, a standout field hockey player, and, by all accounts, had a big group of friends.

“For all of us, she was the most beautiful girl — she had everything going for her,” said Elisabeth Brock, Ms. Gredysa’s close friend from high school. “She was very smart, funny, athletic, ideal girl.”

But when the eating disorder overtook Ms. Gredysa’s life, it was difficult for Ms. Brock to relate to her. She said she remembers everything that Ms. Gredysa did was consumed by her eating disorder. It was hard for her to see her friend become “emaciated” and to feel like she couldn’t do anything to help.

“When we were younger, too, we used to share clothes, and we used to do all this stuff together that we couldn’t do anymore,” Ms. Brock said. “Normal things you do with your friends, I couldn’t do with her — it put a definite wedge in our friendship.” She recalled some odd behaviors, including how Ms. Gredysa would eat ketchup and onions for a meal.

During her four years in high school, Ms. Gredysa remembered only two instances of when teachers or people in authority mentioned anything to her about her eating disorder. One teacher, she recalled, said, “You’re wasting away,” and another made a comment about her weight and societal pressures.

“It wasn’t like a health teacher or guidance counselor,” Ms. Gredysa said, adding that it was “two men making comments in passing, not a conversation, not a concern.”

But now that Ms. Gredysa has been in recovery after finishing another treatment program last year, she and Ms. Brock have reconnected. “She seems to be doing really well — I’m happy for her. She seems to have found her path,” Ms. Brock said.

The sadness was apparent in Ms. Brock’s voice, seemingly holding the weight of several missed experiences together. Ms. Gredysa didn’t attend Ms. Brock’s wedding, and often shifted in and out of her life when they both lived in New York City.

“My heart breaks for her. I can’t imagine what her lifelong inner turmoil has been,” Ms. Brock said. “I am very happy she is helping other people.”

If Ms. Gredysa was still in the depths of her eating disorder, she likely wouldn’t have agreed to a meeting at the diner. She would’ve been at a yoga class instead, as she could never start her day without first exercising.

Instead, she now wakes up, meditates, eats breakfast, prays, writes and goes for a walk. She thinks about filling her days differently: with work that fulfills her, with nourishment and with “gentle movement.” She knows that life can be so much more than an eating disorder, and to her that means being able to enjoy the small things, even sleeping, reading and spending time with friends.

“It’s not to say I don’t go to yoga class two or three times a week, but never in replacement of these other things,” she said. While the group is part of Ms. Gredysa’s recovery journey, she said she also feels like it, as well as health coaching, is her calling.

“I feel this calling, I have to put this in the community — my journey has taken me to how can I help others,” she said.

“When we get together and we talk and we express these things …” She cut herself off and said, matter-of-factly, “If I’m at another baby shower, God knows I’m not going to pass up the cake.”

The adult women’s eating disorder support group is open to all adult women managing disordered eating behaviors. It’s held every Wednesday from 7 to 8 p.m. at Ananda Wellness and Yoga at 39 Windmill Lane in Southampton.