How are Patients Driving Changes in Eating Disorder Treatment

The last post reviewed the connections between Anorexia Nervosa and several chronic medical and psychological illnesses. The reason I felt compelled to write the post is that clinical assessment of people with Anorexia now necessitates considering a variety of other concomitant illnesses. It felt important to highlight some of the relatively recent changes in eating disorder treatment.

However, the driving force for these changes is not from the medical or psychological field. Instead, social media and information by laypeople have opened the door to different avenues for diagnosis and treatment—certainly a new direction for medical care in its entirety.

One entrenched issue with eating disorder care is the reflexive conclusion clinicians draw to attribute all medical and psychological phenomena to the eating disorder. It’s all too common for eating disorder patients not to be diagnosed with other conditions because clinicians blame everything on the eating disorder. So patients end up searching for ways to explain their medical symptoms since they are often ignored by doctors.

Moreover, the eating disorder community is disjointed enough such that communication about clinical findings tends not to be shared in a useful way. Treatment programs see people for relatively short stays and don’t communicate well with outpatient teams, as I have written about extensively here. Hospitals also function separately. And clinicians in an outpatient setting function for the most part independently. Poor overall communication about diagnostic trends won’t move the needle for new concepts in eating disorder treatment.

But now patients have a way to communicate with each other, post on social media, create videos for hundreds or thousands of people to see. In other words, patients can much more easily create communities, share ideas and begin to explore connections between eating disorders and other illnesses than clinicians.

Therefore, the clinical community is playing catch-up with laypeople’s theories. We are learning how ADHD works for people with eating disorders, adapting assessment for autism in adults and finding referrals for inflammatory diseases and MCAS. And this feels like only the beginning.

Let’s hope sharing of information helps clinicians chart a course for more successful treatment as well so people don’t have to suffer alone so much anymore.