Though Nicole Rohr Stephani has considered herself to be in recovery from eating disorders (ED) for the past 10 years, she struggled with a lack of resources for others like her who may still be struggling with a negative body image.
While Stephani, 30, found useful information on mainstream health and wellness websites, she was concerned that some of the entries could act as a trigger for someone in ED recovery.
“A lot of health and wellness sites talk about calories, weight, and different things that are not necessarily appropriate for the recovery community,” Stephani, who lives in Chicago, told FoxNews.com. “If I go to eating disorder resources, it might be too much in the other direction.”
Seeing a need for more well-balanced information for those in long-term ED recovery, Stephani created Body Boop, a blog and community where she shares insights from her experiences with ED recovery in the hopes of helping others. Since the site launched in 2014, Stephani has helped answer questions ranging from how to find anxiety-focused yoga classes to family members asking about insurance coverage for care.
“It’s all stuff I figured out on my own that I didn’t feel like there was a resource for,” she said.
On-going therapy and risk of relapse
Stephani had initially been seeing a general counselor for therapy, but sought a supplementary group therapy experience. Ultimately, she found drop-in groups were focused on patients still actively working through eating disorder behaviors, which can be difficult for those in ED recovery.
“It was really hard to be around other people in the middle of the worst of it,” she said. “I’d been there before and don’t want to go back to that.”
Part of the problem with continuing care for long-term ED patients is the lack of support and therapy groups, experts agree.
“It’s very difficult in an outpatient setting to have, at one given time, 6 to 8 patients who are in on-going long-term recovery because they might be in that group a year and need to develop trusting relationships, to open up, talk about delicate issues,” Dr. Fatima Ali, a psychiatrist on the board of the National Association of Anorexia Nervosa and Associated Disorders (ANAD) based in Wheaton, Ill., told FoxNews.com.
Support groups tend to focus on the early steps of recovery, when patients are visibly hurting the most, said Amy Grabowski, LCPC, the director of The Awakening Center, an outpatient private practice in Chicago. In their anonymous, 12-step group, many patients ask for a sponsor but the Center is unable to provide one, as there are no long-term group members who are in the position to be sponsors.
In the second phase of recovery, which is more focused on mental health than the physiological care needed when an individual is acting on ED behaviors, patients need a therapy group, not a drop-in support group, to allow them to work on the deeper issues that contributed to their ED in the past, Grabowski said.
“Support groups are not designed to go that deep into each person’s issue,” she told FoxNews.com. “The nature of support groups is to give hope, suggestions, make people feel less alone.”
Researchers define “recovery” and “relapse” differently, and recovery can include complete resolution and no symptoms, or a decrease in symptoms, of ED behavior. Research on ED patients has shown that about 35 percent of those who seek treatment recover and no longer show symptoms of ED.
Another one-third of patients show a reduction in behaviors after treatment and the remaining one-third do not see recovery or improvement with treatment.
“Considering that eating disorders have a high rate of relapse— going into behaviors and coming out, being stable a long period of time— about 1/3 of people still have behaviors, but overall may be still managing their lives better,” Ali said.
Long-term studies on ED recovery rates are difficult, she noted, as they require a complete abstinence from behaviors and many studies instead show a marked reduction in ED behaviors.
“Every stage, every hospitalization, to me, is one step toward recovery but nobody knows when recovery will be,” Ali said. “These are all barriers that come in: financial, family, motivation, psychological. Some people deal with it treatment…. some delay until they’re at a place they can handle it.”
For patients who have not addressed their body image issues, there is a higher risk of relapse when stress is added to the mix.
“Body image is actually the last one to go as far as ED symptoms are concerned,” Ali said.
However, while long-term patients have the chance of a short relapse, a bigger relapse is less likely because they know what’s at stake, Ali added.
“The longer they have been behavior-free, my observations have shown that the shorter the relapse, because they’ve known symptom-free, they’ve functioned without symptoms, they can be social and they have a lot to lose to go back to their symptoms,” she said.
Continuing the conversation
Now, Stephani sees a counselor weekly and a psychologist monthly, focusing on the anxiety and depression that once triggered her ED behaviors.
“It would be up to me to communicate that I was relapsing,” she said. “I know what a major relapse feels like, what a little slip feels like and what it feels like in between.”
She’s also started enjoying a healthy relationship with food for the first time.
“I was trying to explain to someone that I chopped up a sweet potato for the first time and I’d never held one before,” she said. “It’s a silly thing but at 30 years old I feel like I’m cooking and enjoying it.”
In November, Stephani will host a body image workshop in Chicago, with the hopes of engaging healthy conversation about healing and acceptance.
“The underlying issues, from my perspective, are always going to be there. I may not be acting on my eating disorder behaviors, but I have really crappy days when I don’t want to be around people because I feel so bad about myself,” she said. “That’s what I want to talk to people about, that paralyzing negativity that persists when you’re in recovery; the really, really bad days that pop up unexpectedly.”