Maintaining Eating Disorder Recovery When You Have a Chronic Illness

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The doctor who diagnosed me with chronic Lyme disease put me on a low carb, dairy-free diet to help facilitate my healing.

As I started doing better, she told me I could go off this diet — but I didn’t want to. I felt like I was on a roll. I loved feeling like I was only putting “good” things into my body, and the weight loss I experienced as a result was a bonus.

This was starting to feel familiar.

I’m an eating disorder survivor. A decade ago, I was obsessed with counting and cutting calories.

Being prompted to eliminate certain food groups felt like a slippery slope toward relapse. It was hard to discern when I was looking out for my health and when I was caving to obsessive impulses. 

Something similar happened when Lindsay Hoppe, a 37-year-old blogger in Sacramento who used to struggle with anorexia, went on the Whole30 diet to alleviate symptoms of her irritable bowel syndrome (IBS).

In online communities for those seeking support with the diet, she saw before and after photos that encouraged weight loss, as well as posts from people who were using the diet for appearance-related reasons. After these forums reignited her own urges to lose weight, she ended up leaving them. 

Sarah, a 25-year-old sex educator in Southern California, has juvenile idiopathic arthritis, celiacs, and IBS, which makes her anxious about eating and has caused her to relapse into anorexia.

“I’ve been in therapy forever to try to figure it out, but I don’t think it ever will get figured out until I know I won’t feel sick every time I eat,” she says.

It’s common for eating disorder survivors with chronic illnesses to get triggered by dietary recommendations made to them, says Chelsea Kronengold, body image and eating disorders activist, and communications manager for the National Eating Disorders Association.

For this reason, it’s best to avoid dietary restrictions if you’ve had an eating disorder, though they may not be avoidable in certain instances. 

Kronengold recommends getting a second opinion on dietary changes recommended by doctors, as they may be biased. For example, doctors might tell clients of size to lose weight as a form of treatment when they actually don’t need to.

“This advice is not only ineffective; it also contributes to weight stigma and potentially additional health concerns,” says Kronengold.

Sometimes, the issue isn’t diet but medication.

Emily Paulson, a 40-year-old eating disorder survivor and professional recovery coach in Seattle, would decrease the amount of medication she took for Grave’s disease, a thyroid disorder, when it made her gain weight.

“It wasn’t until I sought intensive therapy for my eating disorder that I was able to proceed with medication as directed,” she says.

Another challenge for people with both eating disorders and chronic illnesses is that it may be hard to tell which symptoms are coming from the eating disorder and which are coming from the illness.

“Folks may be quick to blame their symptoms on either the chronic illness or the eating disorder, failing to recognize that the intersection of the two conditions may contribute to increased challenges,” says Kronengold.

To avoid this problem, it’s best to find professionals with experience treating both chronic illness and eating disorders. 

It’s hard for any eating disorder survivor — chronic illness or not — to maintain recovery, so make sure you have a strong support system and treatment team to reach out to when the going gets tough, Kronengold adds.

If you’re no longer in eating disorder treatment but are concerned a chronic illness could cause relapse, she recommends getting support from an eating disorder specialist just in case. It’s easier to do this preventively than to overcome a full-blown relapse.

Sydney Faith Rose, MSW, whose private therapy practice focuses on trauma, anxiety, and chronic pain, recommends working with a nutritionist to figure out the best diet plan for you rather than solely relying on your doctor.

You can also join a Health At Every Size or intuitive eating group online or offline to get support. And let your doctor know how to avoid triggering you, such as if you prefer not to learn your weight.

To avoid situations where you may be without foods that fit your dietary needs, it’s good to always have a few staple foods that don’t trigger you around the house and with you, says Jessica Barker, a researcher at the University of Minnesota’s Center for Eating Disorders Research.

People also might find it helps to prepare responses for when someone asks them about their dietary restrictions, because some fear being accused of not having real health problems or being in their eating disorders. 

“Knowing just how much ‘wiggle room’ they actually have in their diet — such as someone with diabetes and sugar — is helpful,” she says. “Working with a dietitian can help people make flexible plans that can help them stay satiated and control their health issues.”

While Hoppe was able to see relief from her health condition by following the Whole30, she had to continuously remind herself to always eat when she was hungry.

“I reminded myself daily that I wasn’t doing it for weight loss, but for my health and wellness,” she says. 

Sarah has found that online support groups for those with her illnesses have helped her manage her eating.

“Most of them have the same or similar dietary restrictions, so we kind of help each other survive with advice, especially around holidays or traveling,” she says.

In my case, it took consistently waking up hungry at night for me to admit I needed to loosen up my dietary restrictions.

I stopped cutting out certain food groups and instead focused on adding more foods I knew were good for me, like leafy greens and other vegetables.

It’s still sometimes a struggle for me to eat with my health in mind without becoming obsessive, but this “add rather than subtract” model has brought me a long way.

Suzannah Weiss is a freelance writer whose work has appeared in The New York Times, The Washington Post, New York Magazine, and more. You can follow her on Twitter or Instagram or learn more about her on her website.