Growing up, Ally Duvall was often told she “took up too much space” but says she simultaneously felt invisible. “I went undiagnosed for about 10 years because of pervasive and deeply-rooted weight bias, both in society and the medical field specifically,” Duvall says about her eating disorder. “I had doctors, dietitians, and an elementary school counselor encouraging weight loss and intense dieting, only strengthening the grasp my eating disorder had on my self esteem, my body, and my relationship with food.”
Today, as the manager of Equip's body image program, Duvall helps support families on the road to recovery, but she knows from her own experience that effective treatments aren’t universally within reach for a number of reasons. “A majority of treatment options are not affordable or accessible and leave 80% of folks with an eating disorder undiagnosed and untreated—eighty percent,” she emphasizes.
Reflecting on some of these common obstacles to treatment—and the strategies to overcome them—can help shed light on why so many people are unable to access the treatment that they need, and the need for more information, access, and evidence-based care.
The 5 biggest obstacles to overcoming an eating disorder
1. Finances and insurance
Anyone who’s had to deal with a chronic condition likely knows the nightmare that can ensue when medical bills roll in and insurance doesn’t cover the exorbitant costs of care. Eating disorder treatment can be notoriously expensive and in some cases, may not be covered or even available.
“I live in a county where access to eating disorder treatment is practically nonexistent, which makes finding quality eating disorder treatment very challenging for families,” says Equip therapist Brittany Ashmore. “Unfortunately for low income families that I've worked with in the past on MediCal insurance plans, their plan limits them to only being able to utilize providers within the county, leaving them to find care at local county or county contract clinics with no specialized eating disorder providers.”
Ashmore says the real danger in this scenario is that families receive care that is not specifically designed for eating disorders, meaning the treatments could be ineffective. “As the families wait for their child to improve, precious time for early intervention slips away and the eating disorder becomes more and more ingrained in the child's life,” she says. “For families who have private insurance, they may be able to find a provider if they are willing to commute for two hours or if they are able to find a provider who offers telehealth. But unfortunately, most families don't even know what they should be looking for when seeking a provider.”
For low-income families, Ashmore recommends trying all possible avenues to find and advocate for specialized care. “When it comes to your child's life, don't take no for an answer. Start by identifying what resources are available to help you. Most counties have a patient and family advocate who may be familiar with the system of care and the people who run it,” she says. “Additionally, spend time researching your rights as a patient and don't be afraid to be the squeaky wheel. Utilize the process of filing a grievance, read the patient's rights materials, and continue to work their way up the chain of command, advocating for appropriate and specialized care, even if it requires a single case agreement for a more appropriate care provider”
2. Access to evidence-based care
Equip’s care model builds upon Family-Based Treatment (FBT) for one simple reason: this type of treatment works. In fact, it’s the only evidence-based treatment for adolescent eating disorders that exists. While methods like cognitive behavioral therapy (CBT) and dialectical behavioral therapy (DBT) can play important roles in the recovery journey, FBT is the gold-standard of eating disorder care for children, teens, and young adults. But even for families who know all the information, finding a practitioner or team experienced in the model isn’t always easy.
“Families who are seeking eating disorder care for their child often have to try their best to navigate a system that is not prepared to help them, and are often left working with providers who are trying their best but lack the knowledge and resources to even know where to start,” explains Ashmore. “I encourage them to think outside of the box; consider telehealth or commuting to an area with appropriate care. However, I know first hand that this is not always possible, and in cases where families are not able to find creative ways to access care, I am a strong believer that advocating for your child is the only way that you have a chance at getting what you need.”
Equip Patient Experience Manager Amanda DuPont recommends families investigate a variety of avenues to care. “There are a lot of online resources for families to help provide additional caretaker support (online eating disorder support groups), books that break down how to do FBT at home, national directories that allow you to search for eating disorder treatment, and non-profits such as Project Heal that offer scholarship opportunities for financial assistance for treatment,” she says.
Ashmore adds that when she applied to work for Equip, she was excited to become a part of an organization set on changing the treatment landscape. “It is infuriating that effective and evidence-based treatment exists for this illness, yet so few are able to access it,” she says. “It is unacceptable that people are dying or suffering health complications from an eating disorder because the system of care is failing them. Everybody deserves to recover from an eating disorder, no matter their social or economic status.”
3. The perceived stigma of having a mental health condition
Despite the massive strides our society has made in talking openly and honestly about mental health, many people still feel uncomfortable admitting they need psychological support. The particular stigma around eating disorders and the misinformation that abounds about these diseases can keep people sick — particularly those who identify as men, LGBTQIA+, and low-income individuals.
“The feelings of guilt and shame that may come up around seeking support can be intense, hard to navigate, and maybe even persuade you from taking that step,” Duvall says. “We need to break down the stigma around who can get an eating disorder, spread awareness of what symptoms look like in a diverse range of experiences, and continue to create more treatment options that are Health At Every Size (HAES)-aligned, gender-affirming, culturally inclusive, and physically (or virtually) accessible.”
Ashmore adds seeking treatment can be especially tough for those with eating disorders because the diseases themselves are so ridden with those feelings of shame and guilt, which can be compounded by societal misconceptions and stereotypes. “I hope that people experiencing these feelings will have some understanding and grace for themselves, and know that it is very common to feel guilt or shame when seeking treatment,” she says. “Sometimes giving yourself permission to acknowledge those feelings can take a bit of the power away from them. I also suggest seeking out articles, influencers, podcasts, and other materials that can help to debunk the stigma of eating disorders and treatment.”
According to DuPont, the support of a community or others traversing the same recovery path can also go a long way in alleviating these feelings of shame and guilt. “Once a family is ready to seek treatment, it can really be an eye opening experience as they begin to surround themselves with a supportive community that is also going through the same journey,” she says. “When you're in the depths of dealing with an eating disorder, it can often feel like you're the only family who is having to battle through meal times or the only family who feels hopeless in their recovery journey – you are not alone. Many people are going through this journey as well and the more you speak up about your experience, the more you will find the support and empathy you need on this journey to full recovery.”
4. Assembling the right team
Given the lack of qualified, healthcare practitioners who offer evidence-based care for eating disorders, putting together a comprehensive team of specialists can be tough — especially because effective treatment often requires a multi-prong approach including psychotherapy, nutrition, medical exams, and more.
“In general, having a coordinated care team is definitely an obstacle for families,” DuPont says. “There are a lot of ways to approach eating disorder treatment. When families have to piece together a care team on their own, using multiple outpatient providers, each of those providers might approach treatment differently. This leads to mixed communications, an unclear treatment approach and delayed progress in recovery.”
The most streamlined solution for this issue is to find a single source of care that provides all the necessary elements for effective treatment. “Having all the providers using the same approach, working for the same company greatly impacts a patient's ability to gain traction in treatment, as well as reduces the stress and overwhelm of caretakers having to coordinate multiple outside providers,” explains DuPont.
5. Feeling like you’re “not sick enough”
“Eating disorders impact people of all ages, all genders and all ethnicities—eating disorders do not discriminate,” Dupont says. “They also do not appear the same way in all bodies. For example, some people can have anorexia without having a low weight. If you feel you or your loved one has an eating disorder, please seek treatment. If your medical provider does not listen, keep speaking up. If they still don't take your concerns seriously, please seek a second opinion. Your family deserves full recovery.”
Duvall says that when she was struggling with her eating disorder, she often felt discounted by healthcare professionals because of societal and medical weight bias. Now, she’s on a mission to help dispel these types of myths that prevents people from being properly diagnosed and treated. “I used to believe that I didn’t deserve what recovery would bring me. But I did, you do, and everyone else around battling an eating disorder does too. Your life worth living is ready for you.”