Eating disorder recovery fight inspires researcher to develop parent education course
Eating disorder. Those words were not foreign. After a year researching this mental health issue, I could explain female athlete triad syndrome, binge eating disorder, atypical anorexia, hypothalamic amenorrhea, and anorexia nervosa. As a college junior in Family and Human Services, intending to later become an eating disorder dietitian, I looked forward to stepping into this realm. But eating disorder now had three tiny words accompanying it. Three tiny words I wanted to deny, push into nonexistence…. I have one.
Wait, what? I didn’t purge, take laxatives, binge, strive for weight loss, loathe my body, or have an underweight BMI. Rather, I’m the researcher, the one who plans to step into this field and one day step into helping other girls who are struggling with food. I can’t be sick enough. Yet althoughI wanted to scream at the professionals that they were wrong and hide behind my shame, I simultaneously found an oasis in hearing this diagnosis. Finally, I have an explanation for the weight loss, lost menstrual cycle, coldness, exhaustion, bone pain, and growing avoidance of “unhealthy” foods. The reality of the eating disorder, when considering my past year’s research and conversations with present dietitian and counselor, was increasingly impossible to escape. Nonetheless, doubts lingered. Was I truly sick enough? Sick enough? Sick enough? Sick enough? Sick enough?
Finding validation of symptoms in the stories of others
In wrestling with my diagnosis I have found different ways of engaging in my recovery. One way has been through incorporating people’s stories. Reading of their struggles and recovering has become an essential facet in finding and establishing connections. Through blog stories and case studies, my symptoms have been validated and I have been encouraged to fight for recovery. Another way I have engaged my journey has been through the continuation of eating disorder education. As a Family and Human Services college student still intent on attaining my Masters in Dietetics, I’ve woven eating disorder research into my class projects.
In my Social Policy class I discovered a pending bill, Bill 4783 (link below), that will prevent minors from purchasing diet pills and muscle-building supplements, which often catalyze eating disorders in adolescents. Consequently, I wrote to my Oklahoma governor, Representative Kevin Hern, advocating for the importance of this bill to be implemented to protect the mental health of our youth. When presented with a research paper in my Race and Politics class, I dove into how eating disorders manifest in people of all races. I discovered, sadly, that signs and symptoms are often overlooked in minority populations due to complications with insurances, lack of eating disorder education, and minimal research regarding different cultures’ approaches towards food.
Channeling lived experience and studies into creating family solutions
With the approach of my senior year of college, I have the opportunity to create a Family Life Education course on the topic of my choice. To both engage my recovery journey and hopefully aid others with eating disorders, I, together with some classmates, am developing a psycho-education course for parents of those with eating disorders. Specifically, this class is designed for parents of an adolescent child who is on a waitlist for eating disorder treatment, either outpatient or inpatient care. Our vision is for this five-to-six session class to educate parents by equipping them with resources and emotional support to facilitate their child’s continual healing.
We have commenced the creation of the course by finding previous eating disorder studies that repeatedly note that parents with a recently diagnosed child are often ignorant of the severity. Many parents and caretakers love their child and deeply feel the need to help their child reach recovery yet lack sufficient resources and education to facilitate healing.
Parents want to help but need support
Our subsequent interviews with parents, eating disorder providers, and those with lived experience have affirmed parents’ need for support during their child’s journey. Consequently, the course’s three goals are to:
1) provide parents a better understanding of the various types and ramifications of eating disorders, as well as how the eating disorder brain controls the child;
2) decrease parents’ feelings of isolation and empower parents more to help their child with social media eating disorder caregiver’s groups, other parents’ testimonies, and self-care strategies for themselves; and
3) supply practice advice, such as what is and is not helpful to say at the dinner table, how to portion food properly, ways to navigate insurance coverage, and how to respond to relapses.
Presently, my group and I are continuing to research how and where to best implement this curriculum, what advertising may entail, specific logistics of the class, and how to include information that will be most beneficial for parents.
The statistics and stories are startling
Amid this research, statistics and stories threaten to startle me into halting. For example, an eating disorder death occurs every 52 minutes (Deloitte Access Economics, 2020), totaling 10,200 annual fatalities (Galmiche et al., 2019). Middle and high school peers engaging in diet related conversation stimulate encouragement of thin bodies, leading to higher rates of bulimic behavior (Salafia & Gondoli, 2011). 40%-60% of elementary-aged girls are concerned about becoming fat, and 46% of nine through 11-year-olds sometimes or often diet (The National Organization for Women, 2021).
Who am I to say that I can help, when the statistics are so heart-wrenching, and my own eating disorder screams of my incapability? Some days the research and my brain lead me to wish I would never see the words eating disorder again. Most days I try to eradicate the reality of those three other words: I have one. Yet, ultimately, each of these facets – the statistics, stories, this parent education course, and my diagnosis – motivate me to fight against shame and run towards freedom.
Add your voice, share your experience to help others, too
If you are interested in joining my fight by contributing to the parent education course, please reach out to my email or Facebook link below. While my group has a realm of voices providing lived insight into this course development, we can always use more voices: lived experience, parents/caretaker/friend of one with an eating disorder, and eating disorder providers.
Whether you have feedback or suggestions to share, want to be interviewed, or are interested in using the curriculum for your center, please let me know. December 2022 is our finishing date, and our hope is to have voices provide more insight before then to best empower parents to support their children.
Deloitte Access Economics. (2020). The Social and Economic Cost of Eating Disorders in the United States of America: A Report for the Strategic Training Initiative for the Prevention of Eating Disorders and the Academy for Eating Disorders. Available at: https://www.hsph.harvard.edu/striped/report-economic-costs-of-eating-disorders/.
Galmiche, M., Déchelotte, P., Lambert, G., Tavolacci, M. (2019). Prevalence of eating disorders over the 2000–2018 period: a systematic literature review, The American Journal of Clinical Nutrition, Volume 109, Issue 5, Pages 1402–1413, https://doi.org/10.1093/ajcn/nqy342
Salafia, E. H. B., & Gondoli, D. M. (2011). A 4-year longitudinal investigation of the processes by which parents and peers influence the development of early adolescent girls’ bulimic symptoms. The Journal of Early Adolescence, 31(3), 390–414. https://doi-org.ezproxy.jbu.edu/10.1177/0272431610366248
Share your story on The Diary Healer – an invitation
Voices of recovery together create a chorus to inform and inspire others. To share your story, like Hannah, submit the contact form on www.thediaryhealer.com or write to firstname.lastname@example.org
Wow, congratulations on the steps you’re taking and empathy in your struggles. I would love to give you another voice from lived experience. June has given me a platform to express and help myself through writing and I would be more than happy if you see me fit into this at all. Anything to further educate.