10 Things We Have Learned from Patients and Families About Eating Disorders – Dr. Ashley Solomon
As co-chair of the Academy for Eating Disorders (AED) Social Media Committee, I recently had the pleasure and honor of co-moderating a twitter chat with two women who have served as tireless advocates for patients and caregivers, Judy Krasna and Leah Dean*.
The twitter chat focused on helping clinicians recognize what patients and caregivers want them to know about eating disorder treatment.
What we learned from patients and caregivers
Judy and Leah broke their findings down into ten key points, several of which I highlight below:
- There’s always hope for full recovery!
We know that the earlier that intervention happens, the higher the chance of success. But even if intervention occurs later in the illness, we are right to have hope for recovery.
- Parents are experts when it comes to their child and have the best perspective on when treatment is working or not.
Parents have too often been shut out of the treatment process, yet have a crucial role to play, particularly when empowered to do so.
- Physical recovery usually comes before mental or emotional recovery.
Judy and Leah point out that a starved brain takes time to heal. Nutritional restoration has to happen as an important first step. Food is medicine!
- A central anxiety of eating disorders is eating.
Effective treatment addresses both nutritional needs, as well as behaviors and attitudes regarding nutrition. They point out that treatment should include coping skills and relapse prevention strategies.
- To overcome stigma of eating disorders and their treatment, we have to understand the science of eating disorders.
We have to hold firmly that these are complex but treatable biologically based illnesses. Caregivers can let their loved ones know they will never give up on them.
- Waiting until the patient recognizes the need for treatment can be deadly.
Caregivers and patients who have been through the process recognize that an inability to acknowledge one’s illness and a resistance to treatment are actually symptoms of a malnourished brain.
- Patients don’t “fail” treatment, but treatment can fail patients.
It is often the failure on the part of providers to prescribe evidence-based treatment that prolongs suffering and makes these illnesses more difficult to treatment.
- Deadly myths still permeate our understanding of who develops eating disorders.
People who are of average or higher weight may be denied treatment because they don’t “look” like they have an eating disorder. Further, people of all ages, genders, cultures, races, and religions develop eating disorders, and they are underdiagnosed.
- Caring for a child or loved one with an eating disorder is not normal parenting.
(This is important!). Caregivers need to be taught specific skills and be supported in implementing them.
- Eating disorders present real challenges for families.
Judy highlighted that the strain of living with a loved one’s eating disorder takes a huge toll on the entire family and creates a distressing home environment. Further, clinicians must recognize that families face lost income from taking time off work, battles with funding sources, and community and social stigma.
These are just the highlights of the findings. If you would like to read the full transcript from the twitter chat, check out the Storify.
Integrating loved ones in eating disorder treatment
For years, caregivers and patients have been notably absent from the places where most of the learning about eating disorder treatment takes place – universities, trainings, and conferences.
The AED Patient-Carer Committee, F.E.A.S.T., and other organizations are working hard to amplify these voices — voices that are far too often under-represented.
Judy and Leah shined an important light on the experiences of patients and caregivers in the battle against eating disorders. My hope is that we as clinicians can open our minds and practices to these critical perspectives.
Ashley Solomon, PsyD, CEDS is the Executive Director at Eating Recovery Center, Ohio.
*Judy Krasna is the mother of four, a parent advocate in Israel, and the author of an amazing blog. Leah Dean is Executive Director of F.E.A.S.T., an organization dedicated to providing information and support to families navigating eating disorders. They both serve as co-chairs for the Patient-Carer Committee for AED.