Consuming Dysfunction Assist Teams & Remedy Choices

One of the biggest hurdles people face: stigma. Many people seeking treatment report being perceived as “responsible” for their eating disorder, and that others reacted negatively or distanced themselves after learning about the person’s eating disorder.

Eating disorder treatment has too many barriers to entry

Weight bias—the negative attitudes our society has towards fat people—also makes it harder for people who have an eating disorder to get diagnosed and treated, says Christine Byrne, RD, MPH, an anti-diet dietitian based in Raleigh, North Carolina.

“Someone at a higher weight could meet all the criteria for binge eating disorder, bulimia, ‘atypical’ anorexia… but might not get a diagnosis if their provider is like, ‘Well, this person couldn’t possibly have an eating disorder because they’re in a larger body,’” Byrne says. This isn’t a hypothetical situation: Research shows that doctors tend to over rely on the body mass index (BMI) as a diagnostic tool for eating disorders, even though that is not a recommended best practice.

This very thing happened to Sharon Maxwell, a weight inclusive speaker and fat activist, when she sought medical care in her early 20s because she was fainting regularly and her hair was falling out. She was ultimately diagnosed with anorexia, she says, but it took years to get there because doctors applauded her weight loss instead of realizing that she was showing clear signs of an eating disorder. “When I finally was diagnosed, I laughed in my doctor’s face,” Maxwell recalls.

Additionally, not a lot of health-care professionals are well-trained enough to identify the signs of an eating disorder, making getting a diagnosis even more challenging. A 2019 study of emergency room physicians (who often encounter patients at a critical stage of their EDs) found that just under 2 percent had completed an eating disorder-focused rotation during their residencies. Almost all (93 to 95 percent) were unfamiliar with key diagnostic manuals and treatment recommendations for eating disorders.

Shandra Ashford, MSW, a family mentor at digital eating disorder treatment company Equip, recalls struggling to find competent medical care when her daughter had an eating disorder at age 11. “It was very difficult to find anyone that knew anything about eating disorders,” she says. “It took quite a long time before she was even diagnosed.” Sadly, Ashford’s experience is all too common. A 2022 study published in the Australian and New Zealand Journal of Psychiatry found that the delay between the first signs of eating disorder symptoms and getting treatment was over five years.

“I am aware of white teenage girls who slip through the cracks for their eating disorder,” says Nia Patterson, a body liberation coach, mental health advocate, and eating disorder survivor. “If they’re slipping through the cracks, there’s not even a floor for people who look like me. And it’s just devastating.”

Having a strong support system is key

Even if one does get a diagnosis, eating disorder treatment can be very expensive and time-consuming, says Byrne. “You probably need to see a therapist for an hour a week; a dietitian for an hour a week. You might need to check in with your primary care provider weekly or bi-weekly. You also might need a psychiatrist… For some people that’s overwhelming or impossible.” That can be overwhelming for people to navigate, she says, especially if someone has to take time off work for their appointments or an in-person stay at a treatment center.

While traditional eating disorder treatment has required physically going somewhere (or multiple places, if you’re seeing therapists and dietitians in an outpatient setting), Byrne says that there are now great virtual comprehensive treatment options.

If you can’t get a diagnosis, your insurance company might not cover all (or any) of the treatment you need, Byrne adds. Some treatments, like therapy, might not be in-network at all depending on the provider. And the costs really are significant. According to Project Heal, the average cost per session for an outpatient visit (like with a therapist, psychiatrist, or nutritionist) is $150. Higher levels of care, like going to an inpatient facility, cost an average of $2,000 per day.

Additionally, there’s a lot of community support that needs to happen to facilitate a person’s recovery that not a lot of people are prepared for, says Ashford. There are appointments that need to be kept, schedules changed, group therapy sessions for family members, etc. that can disrupt an existing routine or seem daunting to implement, she says.

Despite all of these barriers to care, there are ways to affordably access the help and treatment needed for eating disorders. The first step that helped Ashford was education. “I was a single parent; I didn’t know anything about the eating disorder world at all,” she recalls. “Educating myself on eating disorders has been instrumental in helping me further that knowledge to be able to help my family.” It also helped her better navigate conversations with her daughter’s health-care providers and advocate for the treatment she realized her daughter needed.

“I was a single parent; I didn’t know anything about the eating disorder world at all. Educating myself on eating disorders has been instrumental in helping me further that knowledge to be able to help my family.”—Shandra Ashford, MSW, family mentor at eating disorder treatment company Equip

There are also lots of organizations that have resources available to make getting treatment a bit more accessible. These resources range from virtual consultations, support groups, and grants for treatment (and much, much more). If you think that you’re ready to take that step, here is a list of expert-vetted options that should help.

For taking that first step:

1. ANAD Helpline: 1 (888)-375-7767

If you want to talk to a real human and not a chatbot, check out the free helpline offered by the National Association of Anorexia Nervosa and Associated Disorders (ANAD). It’s staffed by volunteers Monday through Friday, 9 a.m. – 9 p.m. CST, who can give you emotional support and provide referrals to eating disorder treatment centers and experts.

For educational resources and referrals:

1. National Alliance for Eating Disorders

The Alliance was founded in 2000 by eating disorder survivor Johanna Kandel as a way to help other people who are going through what she did. Now, the non-profit offers educational resources, free weekly support groups, and a helpline staffed by licensed therapists. It can also help refer people to eating disorder treatment.

2. F.E.A.S.T.

F.E.A.S.T. is a global community of parents and families affected by eating disorders. “I send every parent I work with here,” says Byrne. “They have a 30-day newsletter course about parenting a child with an ED that is so comprehensive.” There are also lots of helpful educational resources on the FEAST website (in multiple languages) for parents and caregivers.

3. FedUp Collective

Maxwell recommends the FedUp Collective, which specifically serves queer, trans, and gender-diverse folks with eating disorders. While FedUp’s virtual support groups are currently paused, you can find a directory of gender-affirming mental health providers as well as a list of other eating disorder support groups that the organization has vetted.

For eating disorder treatment options:

1. Project Heal

Project Heal is a non-profit with a mission of addressing the systemic barriers preventing access to eating disorder treatment, and helping people get treatment resources. Byrne likes this group because it’s led primarily by marginalized people (an underrepresented perspective in ED treatment spaces) and does a lot of advocacy alongside connecting people to affordable treatment.

You can hop on the phone for free assessment, where a clinician will talk to you about what’s going on and provide a detailed diagnosis that includes treatment suggestions and referrals. Project Heal also offers grants to people to help pay for treatment, support navigating insurance coverage, and a network of affordable, high-quality treatment providers.

2. Equip

While traditional eating disorder treatment has required physically going somewhere (or multiple places, if you’re seeing therapists and dietitians in an outpatient setting), Byrne says that there are now some great virtual comprehensive treatment options. One of them is Equip, which offers you an entire care team—dietitians, therapists, and other medical providers—right on your phone or computer. You’ll also have access to peer mentors who can provide extra encouragement and support. (Parents of children will get a family mentor, like Ashford, to help them through the process and teach coping skills.)

Equip is also in-network with most insurance plans, making it even more accessible for more people.

3. Arise

Like Equip, Byrne says that Arise serves to provide outpatient eating disorder treatment (including therapy, peer and group coaching, and nutrition counseling) in a virtual setting. It’s also covered by a few insurance plans including BlueCross BlueShield, Cigna, and Medicaid/Medicare, although it has less coverage than Equip.

All you need to do to get started is schedule a free onboarding call.

For eating disorder support groups:

1. ANAD Communities of HEALing

If you’re looking for some solidarity on your recovery journey, you might consider the free peer support groups offered by ANAD. There are groups for people with eating disorders as well as for siblings and caregivers of people with EDs; all are free, virtual sessions. The organization also offers free peer recovery mentors for more one-on-one support, and has a directory of eating disorder treatment options.

2. The Eating Disorder Foundation

The Denver-based organization offers virtual and in-person identity-based support groups, says Maxwell, to provide guidance and community for all the different kinds of folks who may experience eating disorders. (There’s a group for people over 50 years old, for adolescents, for family and friends, trans and non-binary folks, and more.) The free groups are facilitated by volunteer counselors and masters’ students.

If you’re looking for some solidarity on your recovery journey, you might consider the free peer support groups offered by ANAD

3. Eating Disorder Hope

If you’d rather meet in person, Eating Disorder Hope has a directory of support groups organized by state to make the legwork of finding a local meet-up easier. The org also has extensive informational articles about the various aspects of eating disorder diagnosis and treatment to help you better navigate your recovery.

4. Sage and Spoon

This free monthly support group is specifically for Black, Indigenous, people of color (BIPOC) of all gender identities over age 18, says Maxwell. It’s operated by Nalgona Positivity Pride, an organization geared explicitly toward the needs of BIPOC struggling with body image and eating disorders.

5. Liberating Jasper

Liberating Jasper, an eating disorder “healing community” run by therapists, has support groups for queer, BIPOC, neurodivergent, and other folks seeking help for eating disorders. These groups are not free, but there are scholarship opportunities available to offset the cost. Liberating Jasper also offers individual mental health and nutrition counseling.