5 Self-Advocacy Tips for Fat Folks in Eating Disorder Recovery

Note from author: The word “fat” is used throughout this article. This word is used as a way to reclaim its original meaning. Fat is as much of a neutral descriptor as is tall, short, brown-eyed, etc.

So -- you have an eating disorder and you live in a fat body? First of all, I see you. I am one of you. You are not alone. Less than 6% of folks with eating disorders live in medically underweight bodies [1].

Early intervention is one of the largest indicators of sustained recovery. Research suggests that folks in higher weight bodies go longer periods of time without receiving an adequate diagnosis or treatment, thus making the recovery journey more challenging [2]. Unfortunately, fat folks disproportionately face injustices and challenges in accessing treatment due to weight discrimination in our healthcare system. This is how I faced and fought a battle to gain access to treatment.

27 Hours in eating disorder treatment

I was diagnosed with a restrictive eating disorder and it was recommended I go to residential treatment. There were no residential treatment centers near me geographically, so following the guidance of my insurance company, I secured a bed at a treatment center in a neighboring state. The morning after I arrived, I was told insurance denied my coverage and I was to be transferred down to a partial hospitalization program (PHP). Shortly thereafter, I was told my insurance would not cover PHP, and I was transferred down to an intensive outpatient program (IOP).

In addition to losing money from being out of work, traveling almost 700 miles to another state for treatment, still needing to pay rent and bills back at home, and needing to cover my deductible for treatment, I was now being told that I would need to secure my own housing. My team at the treatment center told me that I could try IOP, but realistically, I needed residential treatment. I was told that if my behaviors did not improve drastically within a short timeframe, I would be dropped from treatment entirely, due to being a medical liability to the center. Defeated and believing I was not sick enough to receive treatment, I packed my bags less than 27 hours after arriving and went to stay with relatives while trying to figure out next steps.

Having “normal”-looking blood work is not uncommon for folks in all-sized bodies who are in need of a higher level of care. Eating disorder specialist Jennifer Gaudiani, MD, outlines in her book Sick Enough the medical complications that can occur for folks with eating disorders and how bodies may not show all the danger signs when running medical tests. Dr. Gaudiani stresses that folks are deserving of care and treatment even when their tests may state they are “not sick enough” [3]. I happened to be one of the individuals who did have medical complications. Yet, even with proof of those, my insurance still denied me access to care, largely due to my BMI. I was battling “atypical” anorexia. When left untreated, atypical anorexia can be deadly [4].

While I appealed my insurance company’s denial, I stayed with some loved ones, who were my pillars of support during this incredibly challenging time. Looking back now to how ill I was, I am amazed I was able to muster the energy to advocate and fight my insurance company in the ways I did.

5 Self-advocacy tips

These are the steps I took to advocate for myself. I would encourage fellow fat recovery warriors to take these steps when facing a denial in coverage.

1. If possible, stay with loved ones who can provide you support in nourishing your body adequately while you wait for access to treatment.
2. File an appeal with your insurance company. I recommend following these steps:
   • Review your insurance policy to understand what your plan does and does not cover.
   • Request documentation from any providers on your team (therapist, dietitian, primary care physician, psychiatrist, etc.) to help build your case that you need treatment. If they have recommended a higher level of care, ask them to include that recommendation in their documentation provided.
   • Write a personal statement to your insurance company, listing why you need this care. Be as detailed as possible. If you need help brainstorming, ask a loved one to reflect on things they may have noticed. Some factors to consider including in your personal statement are:
     • Specifics of your history with eating disorder behaviors
     • Ways your eating disorder is impairing your daily functioning
     • Ways your eating disorder is impacting your physical health
     • Any co-occurring diagnoses that may also require treatment or support and how this level of care will support that
     • Note: Utilize and reference the specifics of your policy to help build your case
3. Request a behavioral health case manager from your insurance company. They will help you navigate the specifics of your policy’s appeal process. Request the appeal through this individual. Inform the case manager of the records you have and ask how to submit them with the appeal.
4. Ask for the appeal to be expedited.
5. Ask for reference numbers for each correspondence.

Find a helpful insurance navigation guide from Project HEAL.

You can do this.

Here are reminders to help you maintain your morale during your fight:

1. This is not your fault. Our system is flawed. You should not have to be advocating to gain access to adequate, life-saving care.
2. Your body is not the problem.
3. You are worth the fight.
4. You deserve to nourish your body adequately during the waiting period.

We live in a world where fat people are prescribed eating disorders and then denied access to care. I will not stop advocating and fighting until we reach the day where fat bodies are not pathologized, eating disorders are no longer prescribed because of a body size, and eating disorder treatment is accessible to folks of all body types and sizes.

We are worth it.

You are worth it.

It is important to note that while I faced challenges accessing care, I hold privilege as a white person. BIPOC with eating disorders are half as likely to be diagnosed or to receive treatment as their white counterparts [5].

Read These Next:

• What is Weight Stigma?
• Bringing Weight-Inclusive Care to Health Care
• Why Weight Inclusivity in Health Care Is So Important (And How to Fight Weight Bias)

Sources

1. Flament, M., Henderson, K., Bucholz, A., Obeid, N., Nguyen, H., Birmingham, M., & Goldfield, G. (2015). Weight status and DSM-5 diagnoses of eating disorders in adolescents from the community. Journal of the American Academy of Child & Adolescent Psychiatry, 54(5), 403-411. https://www.jaacap.org/article/S0890-8567(15)00076-3/fulltext
2. Harrop, E.N., Mensinger, J.L., Moore, M., & Lindhorst, T. (2021). Restrictive eating disorders in higher weight persons: A systematic review of atypical anorexia nervosa prevalence and consecutive admission literature. International Journal of Eating Disorders, 54(8); 1328-1357. https://pubmed.ncbi.nlm.nih.gov/33864277/
3. Gaudiani, J. (2018). Sick enough: A guide to the medical complications of eating disorders. Routledge. https://www.routledge.com/Sick-Enough-A-Guide-to-the-Medical-Complications-of-Eating-Disorders/Gaudiani/p/book/9780815382454
4. Eating Recovery Center. (n.d.). Atypical anorexia. Retrieved February 27, 2023 from https://www.eatingrecoverycenter.com/conditions/atypical-anorexia
5. Deloitte Access Economics. (June 2020.) Social and economic cost of eating disorders in the United States of America: Report for the Strategic Training Initiative for the Prevention of Eating Disorders and the Academy of Eating Disorders. https://www2.deloitte.com/au/en/pages/economics/articles/social-economic-cost-eating-disorders-united-states.html

This content is reflective of this individual’s lived experiences. It is intended for informational purposes only. This piece is not to provide medical advice, nor is it a substitute for professional medical diagnosis or treatment. 

This piece was clinically reviewed in April 2023 by National Family Outreach Manager for Eating Recovery Center and Pathlight Mood & Anxiety Center Maggie Moore, MA, LMFT, a licensed marriage and family therapist.