Five Things People with Eating Disorders Want Their Primary Care Providers to Know

Body Brave is working with McMaster Family Practice in Hamilton, Ontario, to design a new approach to eating disorder care in primary care. An important part of this work is learning from people who have navigated eating disorder care themselves.

In two co-design sessions, 11 Ontario-based Body Brave clients with lived experience of eating disorders shared what had helped, what had made accessing eating disorder care more difficult, and what they wanted considered as the new model takes shape.

Five themes stood out.

1. Being taken seriously can make a real difference

People may seek help while questioning whether their experiences are serious enough to warrant it.

“As a person with an eating disorder, my disorder tells me I'm not enough in so many ways, including that I'm not sick enough.”

Participants described the importance of healthcare providers listening, recognizing their concerns and looking beyond weight or appearance.

One participant recalled receiving appropriate care after nearly 20 years of struggling. Her family doctor recognized her symptoms, arranged testing and referred her for treatment. Six years later, at a different weight, she described feeling less supported:

“Because my weight has changed, and I look better now than I did 6 years ago, I feel like I'm not being taken as seriously as I was back then.”

These experiences reinforced the importance of assessing eating disorder concerns without relying on weight or appearance to determine their seriousness.

2. A Little Help Navigating Care Can Go a Long Way

Finding eating disorder care can involve considerable work: researching services, understanding eligibility and referral requirements, following up and advocating for yourself.

“There are a few conditions where the patient has to be so, so deeply involved in their own self-advocacy. And it's kind of exhausting.”

While primary care cannot eliminate the complexity of the healthcare system, clearer referral pathways, guidance and follow-up can help reduce this burden.

3. Knowing what to expect can reduce uncertainty

Participants repeatedly returned to a practical question: What happens next?

One participant recalled being told treatment could take two to three years, without clear guidance about following up.

“I followed up last year, after 5 years, because I was like, is this normal 5 years? And then they told me they lost my referral.”

Her experience illustrates why people need realistic expectations, clear next steps and information about when and how to follow up.

Participants also valued written or online resources they could revisit after appointments, particularly when feeling overwhelmed or struggling to remember information.

4. Primary care can be an important point of continuity

Participants saw a role for primary care beyond identifying an eating disorder and making a referral.

“I would love it if my primary provider checked in with me.”

They emphasized the importance of ongoing medical monitoring, support while waiting for specialized treatment, and communication between healthcare providers.

One participant described how recommended blood work and vital sign monitoring were not consistently completed after discharge from specialized treatment.

These experiences highlighted the value of reliable follow-up and continuity between primary care and specialized eating disorder services.

5. Supporting the person and the people around them

Participants reminded us that family members and other support people may also need information and guidance.

“Gather some support information so that you can... share with your family, because... the family's an important aspect in this, too, because they're in the same boat.”

They also emphasized the importance of autonomy and being active partners in their own care:

“Don't make me repeat my story. Trust me when I tell you I'm sick. Trust me when I say I want help. Trust me also when I say, I don't find that helpful, can we do this instead?”

Carrying lived experience into the design

Across both sessions, participants emphasized that how people experience care matters alongside the care itself. Being taken seriously, understanding next steps, receiving support while waiting and having a voice in care can make a meaningful difference.

These insights are informing the services and resources offered through the new model, including how people and families will be supported as they navigate care. As the model develops, lived experience will continue to shape what we build.