Disclaimer: This feature discusses eating disorders and body image issues, so please skip ahead if you’re sensitive to those topics. If you need to speak with someone or are looking for resources, contact this helpline (866.662.1235) or the findEDhelp website.

Today marks the start of National Eating Disorders Awareness Week, but since data shows 1 in 9 Americans will develop an eating disorder, we need people combating these conditions year-round—people like Johanna Kandel, a former ballerina who founded The National Alliance for Eating Disorders. Nicknamed The Alliance, her organization is the leading US nonprofit working to match people struggling with things like anorexia nervosa and bulimia nervosa with support and treatment. Johanna is also hosting the 2nd annual NOT ONE MORE Weekend starting Friday, which will feature speakers like Demi Lovato and IG star Megan Jayne Crabbe.

Here, Johanna tells us her own story, why the big picture behind these conditions is much more than the filtered ones we see online, and how to speak to a friend who might be experiencing unhealthy eating habits.

What’s been your experience with eating disorders?
You know the saying, “The path to hell is filled with good intentions?” That’s how I’d describe my path to developing an eating disorder. When I was 11 years old, I was told to lose weight for a production of The Nutcracker. That was when I started my first diet. I never woke up one day and “decided” to have an eating disorder. The perfect storm of my genetics, temperament, transgenerational trauma, and environment came together and led me into a struggle with various disorders, including anorexia nervosa, bulimia nervosa, and binge eating disorder. For more than a decade, I suffered in shame and silence, and came really close to losing my life.

What was the process like when you sought out care and support?
When I was 21 years old, I was sick and tired of being sick and tired. However, due to a lack of resources and high treatment costs, I was unable to access the care I needed. I relied heavily on outpatient providers and even found some of my recovery in AA meetings. My journey was incredibly messy. I fell down more times than I could count, but recovery happens in the moments where you pick yourself up. You don’t recover to utopia; you recover to life. I have since fully recovered, and have never lost sight of the barriers I, and countless others, face when attempting to access life-saving care.

How do eating disorders intersect with society’s beauty expectations?
There is often unconscious pressure to adhere to society’s expectations of what a body should look like. Being exposed to unattainable and highly edited bodies can lead to body and weight discontent. This discontent can lead to dieting or over-exercising, which, over time, can develop into an eating disorder. Although beauty expectations are often thought of as a female issue, pressure occurs across all genders and ages. And not meeting those expectations carries very real consequences. People who live in larger bodies are less likely to be hired and less likely to be promoted than their “normal” weight peers—a phenomenon attributed to widespread weight stigma.

How is The Alliance helping people overcome or never develop eating disorders?
The Alliance provides education, referrals, and support for all individuals experiencing all types of eating disorders. We educate our front-line providers—like doctors and teachers—on how to recognize them. We provide free referrals to all levels of eating disorder treatment, from outpatient therapists to acute medical stabilization. We also offer free, therapist-led support groups for individuals experiencing eating disorders, and for their loved ones.

What can we say to a friend who we think is struggling?
Find an appropriate time and place to talk to the individual in private, and communicate your concerns using “I” statements. Stress the importance of professional and specialized help, validate your loved one’s feelings, struggles, and accomplishments, and express your support.

What’s some mindful language we should use when discussing eating disorders?
It’s important to remember that eating disorders affect individuals of all genders, ages, ethnicities, body shapes, sexual orientations, neurodiversities, and socioeconomic statuses. You cannot tell someone has an eating disorder just by looking at them. It’s also important that we don’t identify individuals as their eating disorders. Refrain from referring to someone as “anorexic” or “bulimic.” Instead, they are “an individual experiencing anorexia nervosa.” Lastly, please do not tell people to “just eat ”or “just stop eating.” Eating disorders are maladaptive coping mechanisms—not disorders of vanity. It’s not really about the food; that’s just the tip of the iceberg.