Finding Hope and a Community- Navigating Eating Disorders

By: Jennifer S. Lyons, MA, PLPC

I remember the fear and disbelief as our pediatrician fielded questions about my fourteen-year-old daughter’s mood, eating, and exercise habits. It was the summer before her first year of high school, and she earned the role of the prima ballerina in the fall ballet. I thought she was incorporating discipline as rules around food became rigid and extreme exercise became the top priority. I watched as she started wearing baggy clothes that hid her changing body and tried to hide from her scary moods that seemed to target my innermost fears around parenting. Our family’s lives forever changed as the battle against an eating disorder began.

If you have had a child diagnosed especially with a mental illness that is surrounded by myths and stigma- you will understand the pit in your stomach. You will relate to the feeling that your world has turned upside down. You will vacillate between denial, avoidance, rationalization, guilt, and shame because somehow you believe that it is your fault. The psyche needs to have a reason and as the parent or caregiver- how could you not have known, and how can you help your child when you feel so lost and afraid?

As a parent and, eight years later, a mental health counselor as well as an advocate for prevention and awareness of eating disorders, I share what we learned as a family to offer hope. The most critical factor in healthy coping that led us to recovery- and I say us because a diagnosis for one in the family is a diagnosis for all is finding a community. Many things come with finding a supportive tribe, including education, resources, and knowing you are not alone! 

Our community included a team of professionals- a therapist, a dietician, our pediatrician, a psychiatrist, and resources we found through the Missouri Eating Disorders Association (MOEDA). Although we were hesitant at first because of our lack of knowledge and fear, we listened to our pediatrician, who had rebuked our push for our daughter to begin treatment after the semester and her ballet performance with this crushing question, “ Would you wait to receive treatment if she was diagnosed with cancer?” Our perceptions and priorities changed with that single question.

Eating disorders can sneak into lives, often wrapped in secrecy and feelings of shame. Our family’s journey has been both challenging and enlightening as we confronted our own denial alongside our daughter’s initial hesitance to seek help. The eating disorder felt threatened by the changes and lashed out in vengeance through lies, deceit, and suicidal ideation. When would we get our daughter back? And the bigger question that loomed when we learned of the high mortality rate for those with eating disorders- could we lose her forever?

It’s sobering to consider the statistics:

• About 9% of the U.S. population, equating to 28.8 million Americans, will confront an eating disorder during their lifetime.
• Each year, over 10,200 lives are tragically lost to eating disorders — a heartbreaking rate of one death every 52 minutes.
• Less than 6% of those affected are classified as “underweight” according to medical standards.

The Power of Awareness and Education

While the fear surrounding eating disorders can be overwhelming, I’ve learned through experience that they are treatable and preventable. As a parent, I became an unwavering advocate for my daughter throughout her recovery process. It became evident that distinguishing her from her illness was crucial; the eating disorder often tried to lure her back to ballet, to school, and her previous life as if change were unnecessary. It preyed on our guilt and desire to restore her happiness. During her second stint in treatment, we discovered how to see beyond the disorder’s tricks and embraced the idea of food as medicine, recognizing the importance of wellness contracts for a healthy life, leaning on our professional team, and allowing her time to unravel the underlying anxiety, perfectionism, and need for control. As we also learned, it’s not about food.

Like many parents who are supporting their children in the depths of a mental illness, we longed to return to our previous normal and fulfill our children’s wishes. Still, we realized that recovery meant doing life differently than before. Learning about ourselves, about eating disorders, and recognizing how to improve our relationship with food and our bodies allowed us to support our daughter in our new normal.

The American Academy of Pediatrics (AAP) and the Society for Adolescent Health and Medicine (SAHM) recommend several positive strategies that families can adopt to foster an environment that reduces eating disorder thoughts and behaviors:

• Avoid conversations about diets and dieting.
• Discourage meal skipping or the use of diet pills.
• Promote body positivity and acceptance rather than body shaming.
• Increase the frequency of family meals together.
• Steer clear of discussions around weight or appearance.

Additionally, it’s important to help your child understand that there are no inherently “good” or “bad” foods and to be vigilant if they express interest in restrictive diets that eliminate entire food groups. Emphasizing balance and moderation can significantly change their relationship with food.

Expert Recommendations for Treatment

There are several types of eating disorders, including anorexia, bulimia, binge eating disorder, and ARFID (Avoidant or restrictive food intake disorder) as the most common. 

Experts in the field suggest several essential treatment strategies, including:

• Psychological and emotional counseling.
• Nutritional rehabilitation and meal support.
• Body image work to enhance self-perception.
• Family Based Therapy (FBT) is used to strengthen support systems.
• Medical monitoring and nursing support, as necessary.
• Weight restoration and/or refeeding if additional assistance is needed to manage the effects of malnutrition.

Taking eating disordered behaviors seriously and seeking professional intervention as soon as possible provides the most promising outcomes. We were lucky that our pediatrician, our FBT team, and the community support we found in MOEDA allowed us to find recovery.

Moving Forward

Reflecting on my past, I wish I had fostered a healthy relationship with food and body image within our home as my daughters grew. Although I haven’t always succeeded and can still struggle with unhelpful thoughts, I’m committed to learning and improving. As Maya Angelou beautifully put it, “We do better when we know better.”

As I continue navigating the path of parenthood and supporting others through their struggles with eating disorders as a clinician, I advocate passionately for this cause through MOEDA (Missouri Eating Disorders Association). I hold our journey close to my heart, and the profound need for compassionate support, free from judgment, remains a cornerstone of my practice.

If you suspect that you or a loved one may be facing an eating disorder, I warmly encourage you to connect for valuable resources. Seeking professional help is a courageous and proactive step toward recovery and lasting well-being. Together, we can foster understanding, support, and healing.