By Andrea Goldschmidt, Ph.D., Associate Professor of Psychiatry, University of Pittsburgh
and Christina Tortolani, PhD, Associate Professor, Rhode Island College
As a parent of or caretaker for a child with an eating disorder, you have probably had your share of disappointing experiences dealing with primary care providers. Perhaps you’ve encountered the well-meaning but misguided provider (“Your child seems to be really struggling with eating right now. And insisting she eat is causing her a lot of anxiety. It’s best to back off for now and let her decide when she’s ready to work on this”). Or perhaps your child’s provider has been completely uninformed (“He looks good and his BMI is still in the normal range, so I don’t think there’s really anything to worry about”).
Such interactions can be frustrating at best, harmful at worst. Families come away feeling shamed, judged, and devalued. As a result, they don’t use healthcare services as fully as they might, and they experience treatment delays that can prove both financially and personally costly. Unfortunately, medical providers receive little if any training in eating disorders throughout their education (about a half-day of training in all four years of medical school!). This may result in a lack of knowledge and confidence to develop an appropriate treatment plan and communicate with families around diagnosis and treatment.
When you know your provider is missing something, you might struggle to speak up. It can help to remember that you are your child’s best and most crucial advocate. Your provider might know best how to evaluate bradycardia, but you know your child best and you know when something is being overlooked. For the best results when interacting with medical professionals, we recommend that you serve as your child’s life RAFT, taking the following four steps:
- Report what you have observed. Your provider may not have seen your child in a year or more, and the only knowledge he or she has are the obvious physical signs—a precipitous change in BMI, for example, or orthostatic blood pressure. This is problematic because we know that most individuals in the community with eating disorders present as “atypical”—they may still be in a “healthy” BMI range despite restrictive eating and significant weight loss. Further, we know that eating disorders lead to both measurable and unmeasurable complications. Talk to your provider about what you’re noticing at home and why you are concerned. It can help to write down what you want to say beforehand so you can communicate your worries with a provider who might be strapped for time.
- Arm yourself with knowledge. Remember, your provider likely has had very little training in eating disorders and might lack basic knowledge of physical signs/symptoms, necessary lab tests, and so on. Print out information to share (FEAST has a great resource, as does the AED) and reference the book, Sick Enough: A Guide to Medical Complication of Eating Disorders. Insist that you believe your child has an eating disorder and needs further evaluation. It can be hard to have these conversations, but your child has a life-threatening illness and needs help now.
- Focus on the topic at hand- Don’t let your child’s eating disorder derail the conversation. We all know that eating disorders are masterful at steering the conversation away from topics that might lead to unwanted interventions. Your child may believe they are not “sick enough” for intervention. This is part of the illness, and the earlier you can intervene, the better. You might need to ask your child to leave the room. Alternately, set up a time for a phone call, email exchange, or extra visit that you can attend alone and without distractions.
- Take a stand and advocate. If your provider doesn’t seem to be listening, request that they consult with a more experienced clinician (for instance, a local eating disorders medical team if your community has one). You can also try to find a different provider. Share with your provider or their support staff why are you are seeking a second opinion, as that might motivate them to explore their own biases and lack of expertise, helping the next patient with an eating disorder whom they encounter.
Remember, you are not alone. You are the expert on your child. You are your child’s most valuable weapon in beating their eating disorder. You are their Life RAFT.
(If you are a provider, we want to know more about what you might need to feel knowledgeable and competent when assessing and managing eating disorders. Our team is conducting a nationwide assessment of primary care clinicians’ attitudes, knowledge and confidence in treating eating disorders. This data will inform the development of a technology-based training program for eating disorders intended for primary care clinicians and seeks to close the gap between knowledge and practice. We can be contacted at email@example.com or firstname.lastname@example.org)