What People with Eating Disorders Want You To Know

  1. We did not choose to have our Eating Disorders (EDs); it is combination of genetics/environment.
  2. EDs don’t discriminate; any combination of gender, age, ethnicity, SES, etc. can have them.

  3. These illnesses are not about “vanity;” they are serious, potentially life-threatening diseases.
  4. We cannot “just eat;” there are many medical, psychological, and social reasons why we can’t.
  5. The ED serves as a coping mechanism; it has a function, even if it doesn’t seem rational to you.
  6. We feel that the rest of our world is out of control, so we focus on controlling our own body.
  7. Daily life activities are more challenging; it takes effort to do things, especially out of routine.
  8. It is really hard for us to concentrate on anything other than ED, so we may forget some things.
  9. Social occasions are stressful for us; we worry about what we eat, how we look, others judging.
  10. When someone comments on our weight/size, or says “You don’t look like you have an ED,” it’s extremely triggering; we feel like we aren’t good enough at our ED, and we double our efforts.
  11. Casual comments (e.g., “Bingeing on Netflix,” “Anorexic Celebrities”) downplay ED seriousness.

  12. ED isolates us from others; we don’t have close connections, and we often feel very lonely.
  13. ED is a dictating voice in our head; it’s hard to go through life with someone constantly yelling.
  14. ED distorts our views of our bodies so we can’t really see ourselves; it’s like a fun-house mirror.
  15. ED controls our thoughts and behaviors; it’s a separate entity from our true selves that we hate.
  16. We feel guilty for having an ED, for being a “burden” to others, having high bills for treatment.
  17. We are grateful, however, for those who believe in us, and support us throughout our journey.
  18. We wish that we could be “normal;” enjoying food, relationships, social occasions, like others.
  19. Overall, we wish that others would see us as individuals, not our EDs; there is much more to us.
  20. People with EDs are intelligent, talented, hard-working, intuitive, and empathic towards others.

  21. We want to recover from our EDs so that we can live fuller lives and contribute to our society.
  22. In recovery, how we look on the outside (e.g., “healthy” weight) does not necessary reflect how we feel on the inside (e.g., ED cognitions, poor body image may remain, emotions re-surface).
  23. Recovery is probably the hardest thing we have ever done, but many of us are grateful for what our EDs have taught us, the paths they have led us to, and lives we never dreamed of having.



National Eating Disorders Association (NEDA): https://www.nationaleatingdisorders.org/

Project HEAL: https://www.theprojectheal.org/

Ed Tyson, MD ED Matters Podcast: What Eating Disorder Patients Want You to Know:


About the author: Heather Hower


About the Author: Heather, MSW, LICSW, QCSW, ACSW has served on the Board of the National Eating Disorders Association (NEDA) since 2013, and collaborates with her NEDA colleagues on Eating Disorder research studies, papers, and presentations. Through her position at Brown University Department of Psychiatry and Human Behavior, she has also been collaborating with her local Rhode Island Hospital/Hasbro Children’s Hospital Eating Disorders Partial Hospital, Outpatient, and Home-Based clinical programs since 2013.  Heather had Anorexia Nervosa for 23 years, and has been recovered since 2012.

Her blog posts can be found at: NEDA: https://www.nationaleatingdisorders.org/blog
Project HEAL: http://theprojectheal.org/blog/ Medium: https://medium.com/libertased
Jenni Schaefer: https://jennischaefer.com/blog/eating-and-body-image/recovered-eating-disorders-professionals-stigma/

You can also follow her on Twitter: https://twitter.com/heatherhower Instagram: https://www.instagram.com/heathermeghower/ Facebook: https://www.facebook.com/hhower
and LinkedIn: https://www.linkedin.com/in/heather-hower-b60/

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