A Personal Update: Raising Awareness About ARFID
I generally avoid sharing personal details in a public forum like a newsletter or on social media, but recent events have made it clear that it’s time to speak up.
As a nutritionist working with an athletic population, I encounter disordered eating quite frequently. My work heavily involves helping women navigate their relationships with food, body image, and exercise. While many of my adult clients have sought treatment for these issues, others are only now beginning to understand the impact on their lives and are seeking relief from self-criticism, obsessive thoughts about food, and the desire to cultivate self-love and acceptance. I love this transformative work I get to do with people.
Recently, however, my attention has been drawn to the increasing number of requests for help for teenagers and the personal experience of my own daughter’s struggles over the past 18 months. There’s a pressing need for more awareness and understanding.
I have two teenage daughters. My oldest has a sensory processing disorder affecting her eating habits. She has had strict rules and anxieties about the look, smell, and texture of various foods. Extensive consultations with practitioners never worked as no one seemed to understand. Over time, with my knowledge as a nutritionist and her self-awareness and determination, we managed her dietary needs. She is now a healthy 18-year-old preparing to leave home. Her relationship with food is complicated and will take continued work.
Her condition was never classified as an eating disorder, and the advice I received—such as “hiding” ingredients or “forcing” her to eat—was not helpful. Sensory kids notice everything, down to the brand of milk you buy and the fear of what foods might feel/taste like is debilitating. At the time, such conditions were not well-recognized or understood, and help was not available.
In spring 2023, my youngest daughter, who had been a relatively good eater most of her life, began avoiding certain foods, adhering to specific rules about food presentation, and calling me on the way home from sports practice with anxiety about what was for dinner. She stopped eating at school and narrowed her foods at home. She soon experienced significant physical and emotional distress, including shortness of breath, dizziness, extreme fatigue, brain fog, and a depressed mood.
Her pediatrician diagnosed her with anorexia. However, from my extensive experience with anorexia, I knew this wasn’t describing my daughter's case. I was determined to find answers.
After seeking help at the UCSF Eating Disorder Clinic, we were introduced to a newer diagnosis: ARFID (Avoidant Restrictive Food Intake Disorder). ARFID recognized as a distinct eating disorder since 2013, involves significant limitations on food intake driven by fear and anxiety rather than body image concerns. This more accurately described both my children, for different reasons.
ARFID is more than “picky eating” and presents serious health risks. Here are some alarming statistics about eating disorders:
Prevalence: Between 2000 and 2018, the prevalence of eating disorders more than doubled, from 3.4% to 7.8% of the population.
Onset Age: The most common age for onset is between 12 and 25 years old.
Mortality Rate: Eating disorders have the second highest mortality rate among mental illnesses, with someone dying as a direct result every 52 minutes.
Lifetime Risk: An estimated 28.8 million Americans will experience an eating disorder in their lifetime. By their 40s or 50s, 15% of women will have suffered from an eating disorder, but only 27% receive treatment.
Suicide Risk: Individuals with severe eating disorder symptoms are 11 times more likely to attempt suicide than their peers without eating disorders. Those with sub-threshold symptoms are twice as likely, and those with anorexia have a suicide risk 18 times higher.
Economic Impact: The annual economic cost of eating disorders is $64.7 billion.
Although there are excellent programs for treating anorexia and bulimia, ARFID treatment options are still evolving. As I navigate this journey with my daughter and other families, I am committed to raising awareness about ARFID. I have revisited past pediatricians to discuss missed signs, not out of criticism, but to address the significant knowledge gaps that exist.
If you or someone you know is extremely “picky”, please know this could be a serious health concern. Nutrient deficiencies and gut dysfunction are intricately connected to brain health and mood disorders. It becomes a vicious cycle that is extremely complicated to treat.
Please consider forwarding this newsletter to anyone who might benefit from this information.
Thank you for your attention and support.