Self-Advocacy in Eating Disorder Recovery: Five Key Steps

Recovery from an eating disorder or mental health condition is not always linear, and patients or loved ones can often find themselves navigating the difficult waters of our healthcare system alone. This lack of support can be very overwhelming and can often serve as a barrier to proper treatment and recovery. Oftentimes, individuals with eating disorders have low self-esteem, and their loud eating disorder voice tells them they’re “not good enough” or “not sick enough” or “not worthy of love, care, and recovery.” This internal struggle compounds the challenge of advocating for oneself. 

Furthermore, the American healthcare system often puts many obstacles in place for patients to get the care they deserve and have paid healthcare premiums to access. 

Advocating for yourself or a loved one with an eating disorder or mental health condition in the healthcare system can be challenging, but it is crucial to do so to ensure that you receive the necessary care and support.

Understanding and practicing self-advocacy in mental health and eating disorder recovery is a way of empowering yourself to stand up for your needs and rights during the recovery process.

There is NO ONE ELSE that knows you best and can best advocate for what you need.  You deserve expert treatment and recovery.  So what can you do to advocate for yourself or your loved one?   

How to advocate for yourself or your loved one?

Find a knowledgeable and trustworthy physician. 

Find a physician that specializes in eating disorders, a Certified Eating Disorder Specialist (CEDS), or at least one that has experience and feels comfortable treating patients with eating disorders.  These physicians are more familiar with diagnosing eating disorders and managing the numerous medical complications that can ensue. 

In addition, they are better equipped to tackle difficult conversations if the need arises for higher levels of care.  Oftentimes, when physicians are not experienced with eating disorders, they rely on data such as vital signs or lab abnormalities for diagnostic purposes.  In restricting behaviors, both vital signs and lab work can appear completely normal, which leads inexperienced physicians to miss eating disorder signs. Physicians telling patients that nothing is abnormal can lead to delayed diagnoses and insurance denials for further work ups or multidisciplinary treatment.

Eating disorder physicians understand why labs may be normal in restricting behaviors and can rely on other data points as well as thorough histories in order to diagnose an occult eating disorder and justify treatment or additional work ups. 

Build a multidisciplinary team.

Assembling a team of professionals is an act of self-advocacy that benefits one’s eating disorder and mental health care. The best care for someone with an eating disorder is multidisciplinary and includes a therapist, a dietitian, and a physician.  The team should ideally include both a medical physician and a psychiatrist to best support the individual through eating disorder treatment and recovery. 

Build a support network.

Recovery from a medical condition such as surgery often requires the help and support of others, and recovery from an eating disorder is no different. By nature, however, eating disorders can be very isolating conditions and patients tend to pull away from support and help due to guilt and shame.  It’s important for eating disorder treatment and recovery to have a strong support network, as emotional and at times physical support are needed.  Seek support from those who understand eating disorders and can provide judgment-free help–friends, family, support groups, or church groups are some examples. Build and maintain meaningful relationships during this journey and utilize any available resource. 

Leaning on this support network is a critical aspect of self-advocacy during eating disorder and mental health recovery, as it ensures you have the emotional and practical support necessary for recovery.

Communicate.

The most fundamental part of self-advocating during eating disorder and mental health recovery is assertive communication, the clear and respectful expression of one’s needs.  No one can read anyone’s mind so it’s important for the patient or the loved one of a patient to have a loud voice and express the patient’s exact needs.  This may mean having a conversation with the therapist regarding different therapeutic modalities that fit the patient or communicating with the insurance company about the need for continued treatment or higher levels of care. 

It’s also crucial for patients to communicate their concerns, changes in symptoms, changes in behaviors, and treatment preferences in order to be engaged in the recovery journey.  Patients and loved ones should ask as many questions as they can in order to gain a comprehensive understanding of their situation, including what constitutes an eating disorder, the differences between levels of care, the components of a treatment plan, potential medication side effects, and the expected prognosis. 

Patients and loved ones should ask as many questions as they can in order to gain a comprehensive understanding of their situation, including what constitutes an eating disorder, the differences between levels of care, the components of a treatment plan, potential medication side effects, and the expected prognosis.

Educate Yourself.

As the patient or as a loved one, empower yourself by learning about eating disorders, their signs and symptoms, potential medical complications including which ones are reversible, treatment options, and the different levels of care. Find all available resources to help make the best decision. Keeping a journal of symptoms, treatment history, and medication history can be helpful if recovery includes multiple treatment centers and providers.  

Understanding your condition is a key aspect of self-advocacy in eating disorder and mental health recovery, as it enables individuals to make informed decisions about their care.

Lastly, know that advocating for yourself or a loved one with an eating disorder may require patience, persistence, and courage. Patients with eating disorders deserve respect, compassion, treatment, and recovery which at times requires advocacy given the strength of the eating disorder voice. You or your loved one are worthy of recovery, and your recovery is worth the effort. 

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