Sitka family shares story to raise eating disorder awareness

Mamie Clare knows firsthand that overcoming an eating disorder isn’t easy.

“Recovering from an eating disorder takes a lot of time and brain work. Keep trying even if it seems like the eating disorder thoughts will never go away or you feel stuck in the recovery process,” said Clare who is from Sitka. “As hard as it is, be open and let others help you because it is impossible to do on your own. Finding other things that gave me joy helped me have the motivation to keep going.”

In 2008, when Clare was in middle school, her family started to notice concerning behaviors around food, which were followed by significant weight loss. Clare’s mother, Krisanne Rice, said that because of a relative lack of information available at the time, it was hard to fully know how to address the situation.

“It blindsided us, as a parent you don’t see things close up, but when we finally realized that something was amiss we pretty much self-diagnosed.”

Rice said they tried to follow the instructions given to them by her daughter’s pediatrician but as her daughter’s condition grew worse, they felt it was time to reach out to other resources. With a referral from their doctor, they first went to a Ronald McDonald House in Portland, Oregon for 13 months. Rice said that once her daughter had returned to a healthy weight and received a year of mental health care, they felt it was safe enough to return home.

“We were told that we really should not go back to Sitka, that we needed to stay in Portland, that we should actually move and we eventually had to leave that program against their advice, but we couldn’t live forever in a hospital and after 13 months it had all become fairly costly.”

Those struggling with an eating disorder and/or seeking local assistance, Bartlett Regional Hospital offers a medical nutrition therapy team of registered dieticians who handle in-patients and out-patients. Further information can be found at bartletthospital.org/services/medical-nutrition-therapy/.

Despite things initially looking positive, from 2009 to 2011 Clare’s health challenges continued, Rice said, largely without the family’s knowledge. By 2015 Rice said the family was at a loss for how to help their daughter until they were eventually recommended to Dr. Laura Hill’s five-day multifamily intensive treatment program in Columbus, Ohio at the Center for Balanced Living, now known as the Emily Program, named by founder Dr. Miller after his sister, Emily, who recovered from an eating disorder.

“We just didn’t understand how long rewiring the brain takes, months and years. I just don’t think the science was there yet. It wasn’t until we spent time with Dr. Hill that we were able to come back with skills to better manage the illness.”

Rice said that through Hill’s program, they had a better understanding of the duration of the illness and more importantly the duration of support they as a family needed to give. Rice said they also understood how her daughter’s personality traits worked against her recovery and made her more susceptible to the disease of anorexia.

“This time we felt like we were more empowered with better information on how to help her. We also had continued support and communication with the Center for Balanced Living,” Rice said.

In association with Alaska Eating Disorder Alliance, Hill will be offering a free in-person or online training at the Downtown Public Library on Thursday, Sept. 22 from 1:30-4:30 p.m. to help those supporting loved ones of any age with an eating disorder of any type, anorexia, bulimia or binge eating disorder. The training explores Hill’s approach to eating disorder treatment and Temperament Based Therapy with Supports.

For Hill’s treatment, a client’s support system is seen as a crucial part of the treatment process. According to Hill, TBT-S is grounded and structured by five core principles that need to be included in treatment and support for eating disorders. They are derived from neurobiological research and are the following: eating disorders are brain and biologically based illnesses, treat to the trait or the temperament underpinnings, food is medicine, supports are a necessary part of the treatment process and action or movement is fundamental to change.

AKEDA and Hill are also offering a free Lunch & Learn on the same day from 12 p.m. to 1 p.m. at Juneau SEARHC that will focus on the neurobiology of eating disorders and TBT-S. The presentation will explore why and how to include these principles in eating disorder responses communitywide, in treatment and in families. Examples of TBT-S tools will be provided and discussants will be able to try on the tools in order to explore how, why and when to apply them.

People interested in attending the free training and Lunch & Learn are able to RSVP at akeatingdisordersalliance.org/workshops.

A history of help

Hill has researched eating disorders and their root causes since the ‘70s when she was the director of a college campus. Hill said she started seeing a lot of students with eating problems when there wasn’t yet as much information available or focus placed on diagnosis for all forms of eating disorders.

“We were running a study and finding that we were having really good outcomes in all the major areas of concern like adjustment disorders and anxiety disorders, but regarding eating disorders, the students said they were still having very poor outcomes,” Hill said. “I couldn’t stand it, I thought, ‘What is wrong, why can’t I help these students more?’”

Hill said she started compiling files on each of the students she would meet with to determine what was going on inside their minds. Hill took closer looks at family dynamics and social pressures. While working on her doctorate in psychology, she wrote her dissertation on eating disorders and wrote about the changes and the prevalence between 1980 and 1983 and it’s been a nonstop pursuit within Hill’s career ever since.

“I just assumed my interest would run down like the Colorado River, but not so, for me it just kept bringing new depths and interests through the ‘80s. From that research and some of my presentation work, I was then asked to direct the National Eating Disorder Organization and from that we formed what is called the Academy of Eating Disorders in 1993,” Hill said.

Around the early 2000s, Hill said new technology brought the ability for researchers to start looking at brain pathways. According to Hill, it’s through the functional magnetic resonance imagery, FMRI, which actually watches as a person eats and observes where it’s firing and how it fires and changes. Partnered with Dr. Walter Kaye of the University of California San Diego, they began comparing FMRIs with people who weren’t diagnosed with eating disorders, and through these comparisons they were able to slowly start developing treatment interventions that reflected the new brain research.

“When we first started testing the treatment protocol that we developed, we opened up to invite adult clients to Ohio to the clinic and a family came from Alaska,” Hill said. “The family not only participated in the treatment protocol but shared that they’d had such impactful outcomes for their daughter who was there with her parents. She was acutely ill when we saw her.”

Applying treatment in realtime

That family from Alaska was Clare’s.

Hill said much of the beauty in developing treatment interventions was having an immediate trial and error process established. Whereas with most of the ways treatment is developed, Hill said, researchers will write a manual and then spend time trying to test it in a pilot study to see if it’s feasible and if it shows feasibility they start doing years of testing to see if they’re going to have good outcomes compared to other treatments. Hill said they went about their process in a different way altogether.

“We did it backwards, we did it based on what we thought was much more relevant, we didn’t write a manual and then have the patients try to conform to it, the manual was written based on each and every tool we developed,” Hill said “We formulated the treatment by taking the new research findings, putting them into an active tool and then from the tool the client would give us feedback and we’d reshape the tool until the client said, ‘you’ve got it, it fits perfectly.’ Then we’d bring in their supports and have them see what the clients were experiencing and the supports went nuts because they just couldn’t believe what it was like for their loved ones.”

From there Hill said it was just a matter of providing the families with the tools on how to manage the condition. Hill said that’s an essence of what the new psychotherapy of the treatment, treating from the inside out where all other treatments have treated from the outside in. Hill also said that much of the research over time has determined that eating disorders are not only primarily inherited through genes, but also tend to be related to specific personality traits, as well.

“The research is showing more and more clearly that individuals who develop eating disorders are individuals who’ve inherited their traits and identify traits that make them more vulnerable to develop this illness, just like a person may be more vulnerable to developing a certain kind of cancer because it runs in their family, or eating disorders that run in their family and are much more likely and are more inheritable than environmentally induced. If you would have asked me that in the 1980s and ‘90s we would have said it was the environment,” Hill said.

Since Clare’s treatment in 2015, she has maintained strong recovery and is an outdoor enthusiast and 3 years going strong as an Anchorage nurse and it’s due to the better understanding offered through Hill’s treatment. When they came back, they knew what to do, how to support, set up accountability, let her tell the family how to support her and the family listened.

Rice said one of the main things that especially helped her daughter was leaving with a firm goal in mind. For Clare, it was hiking the Appalachian Trail. It was a goal that not only kept her on track with her treatment, but a goal she managed to complete.

Know the signs

According to the Mayo Clinic, symptoms of eating disorders vary depending on the type of eating disorder. Anorexia nervosa, bulimia nervosa and binge-eating disorder are the most common eating disorders, according to the nonprofit academic medical center.

Anorexia nervosa is characterized by an abnormally low body weight, intense fear of gaining weight, and a distorted perception of weight or shape. Bulimia nervosa is associated with episodes of binging and purging that involve feeling a lack of control over your eating. Binge-eating disorder is associated with regularly eating too much food (binge) and feeling a lack of control over your eating. ​​

Know & Go

What: Training and Lunch & Learn

When: Thursday, Sept. 22 noon-1 p.m. and 1:30-4:30 p.m.

Where: Juneau SEARHC and the Downtown Public Library.

• Contact reporter Jonson Kuhn at jonson.kuhn@juneauempire.com.