After being diagnosed with anorexia nervosa at 10 years old and then relapsing at age 13, Kristina Saffran was, as she describes it, “in and out of four hospitals in seven months.” While in treatment, she met Liana Rosenman, also 13 at the time and also struggling with anorexia. After leaving treatment, the two developed what Kristina calls a “recovery-based friendship.” Their conversations led to a deep desire to help other young people with eating disorders, especially those without access to the treatment that both Kristina and Liana credit for saving their lives. Now the organization Kristina and Liana founded, Project HEAL, has 40 chapters around the United States and in addition to their Treatment Access Program, has added a peer-to-peer survivor mentorship program, Communities of Healing. Here, as we emerge from the pandemic into a youth mental health crisis, DiggingDeep.org talks with Kristina about her organization and her own journey of recovery.
DiggingDeep.org: It seems like despite a new awareness of things like body-shaming, food-shaming, and the unrealistic body types portrayed by media, in many ways, eating disorders and anorexia in particular remain in the shadows. What is it about eating disorders that keeps them persistently under the radar?
Kristina: There are 30 million people in the United States with eating disorders and 80 percent don’t receive treatment. In part that’s because of resources, but it’s also due to anorexia being stigmatized – there’s this horrible misconception that it’s a white rich girl vanity thing and not a true mental health issue. Social media has helped – stigma is decreasing among millennials. But the truth is that anorexia still has the highest mortality of any mental health condition. After our own experiences with anorexia and treatment, Liana and I naively, idealistically said we had to do something about it and we started Project HEAL.
DiggingDeep.org: And it seems like the organization has been successful?
Kristina: We had 40 chapters spring up around the country before we had a single staff member. Our Treatment Access Program quickly started receiving 300 applications per year.
DiggingDeep.org: Can you tell us a little about the program?
Kristina: Sure. Basically, we try to provide funding for as many people as we can to receive treatment. But the need quickly overwhelmed our resources and so in addition to funding, the Treatment Access Program partners with major medical centers around the country who have agreed to donate care to our applicants. And we also have a legal program that helps people navigate their insurance programs. Federal law generally states that insurance plans that include mental health coverage must offer similar care for mental health as they do for medical and surgical health. But especially with anorexia, that doesn’t always happen.
DiggingDeep.org: You built Project HEAL while earning a degree a B.A. in Psychology at Harvard. Now that you’re full-time at the organization, it sounds like you’ve been able to explore new directions?
Kristina: We spent a lot of time talking with people in the eating disorders community and the number one thing they said that has helped recovery was support from people who’ve been there. Our Communities of Healing program is the first comprehensive peer-to-peer eating disorders support program of its kind. We recruit and train mentors who have been in recovery at least two years, and then pair them in person or via Skype and Facetime with peers who are earlier in their recovery. Now we’re working with researchers at Columbia University to run a randomized control trial of our one-to-one peer support program. Anecdotally, I can say that for many people, it’s been life-changing.
DiggingDeep.org: What do you think it is about peer support, specifically, that seems to resonate with people struggling with eating disorders?
Kristina: I think one of the reasons eating disorders are so challenging to treat is that people are so often ambivalent at best about recovery. With an eating disorder, people don’t know they want to recover, and they’re afraid of what recovery may bring. It’s parents and doctors telling them to get better, not the person wanting to get better, themselves. Additionally, many people are told that recovery is not possible and that you will struggle for your entire life. When you have this combination of not wanting to get better and not thinking it’s possible, it makes recovery really hard. Relapse is upwards of 50 percent with people cycling in and out of treatment. But having a role model to look up to can show people what it looks like to survive anorexia. For me, the year after treatment was the hardest. To have somebody who’s been there and understands how hard it is can be absolutely invaluable.
DiggingDeep.org: Through the Digging Deep Project, we’ve had the opportunity to talk with survivors of many conditions, and it seems like young people, especially, can be conflicted about their relationship with the disease community – on one hand, some want to be seen as advocates for their condition, and on the other hand, some people don’t ever want to talk about the condition ever again. They want to put it behind them and move on. How do you feel about your relationship with the eating disorders and anorexia community?
Kristina: For me, starting this project was part of my recovery, maybe one of the strongest components of my recovery. It gave me a place to channel my Type A energy. Those are phenomenal traits if channeled! The other thing: I had taken on this responsibility of being a role model and had this responsibility to stay better for others. So for me, I guess it’s a little different – it wasn’t like I recovered and then had the choice whether or not to become an advocate; being an advocate has been part of my recovery. I feel so lucky that I found my passion and life’s work at such a young age because of my diagnosis.
DiggingDeep.org: Another thing we hear from some survivors is that no matter how well their treatment went or how “curable” their condition, there’s always the fear that it could come back. Do you still, in the back of your mind, worry about your own health sometimes?
Kristina: I think there are still doctors who say you will never fully get better. I don’t believe that. I believe that full recovery is 100 percent possible. That said, there’s a temperament and genetic profile that enables this disorder, so there are certain things I will never do. I will never go on a diet, have a scale in my house, train for a marathon. And almost everybody who has an eating disorder has some co-occurring mental health challenges, often anxiety, depression or OCD. I still have to employ tactics to manage anxiety.
DiggingDeep.org: Like you said, there are many people out there struggling, often alone, with their eating disorder. If you could say one thing to a young person who is having a really hard time right now, what would it be?
Kristina: It gets better. Full recovery is possible.
Garth Sundem is a parent, husband, and author of books including “Real Real Kids, Real Stories, Real Change”.
