Kitty Westin is an advocate for people affected by eating disorders and has become a nationally and internationally recognized authority on the impact mental illness has on individuals, their families and the community. She is also a licensed psychologist. Following the death of her daughter, Anna, from anorexia in 2000, Kitty founded the Anna Westin Foundation (now known as The Emily Program Foundation) a Minnesota-based 501c3 on a mission to eliminate eating disorders. She is past president and a current board member. She is also recently retired from the board of the Eating Disorders Coalition, a national advocacy organization based in Washington D.C. after nearly two decades of service.
In honor of National Eating Disorders Awareness Week, Kitty will give a special presentation in Baltimore called Shattering Stigma, Advocating for Change. In advance of this free community event, we asked Kitty to reflect on her advocacy work, her resilience, and her hopes for future eating disorder activism.
Before your own family experienced the pain and suffering of an eating disorder
firsthand, what did you know about these illnesses? What was your perception of eating disorders in general?
I am a trained psychologist and I knew very little about eating disorders. I think I had no more than an hour of lecture about eating disorders when I was in my graduate studies. I don’t ever remember being cautioned to notice early warning signs when my 3 daughters were growing up.
What gives you the courage and hope to continue telling your daughter Anna’s story at events like the one coming up in Baltimore?
When Anna died it felt like my world was blown apart and I had no idea how to put it back together. Her death was like losing a limb – I am aware of the loss every day and the pain never truly goes away but you learn how to live without it. In the beginning, I somehow knew that telling our story without guilt or shame could possibly help someone else and we could transform the horror of Anna’s death into something positive.
Over the past twenty years, the scientific understanding of eating disorders has
evolved significantly but we’re still missing important information about the impact of eating disorders. Why is that? What do we need to know to move forward
Shame and stigma get in the way all the time! People who are struggling with eating disorders or any mental health condition often feel stigmatized and judged and that very often prevents them from seeking treatment, talking with their family and friends, or speaking out against the injustices they face. And, we don’t have enough research dollars or NIMH funding to encourage researchers to study eating disorders. NIMH spends approximately $28 million per year on eating disorders and $505 million on Substance Abuse disorders
What do you think is the biggest or most enduring misperception regarding eating disorders and who they impact? What can we do to continue to try to combat the misinformation?
Many people think eating disorders are behavior problems or a choice as opposed to a serious mental disorder. We need to talk openly and honestly about eating disorders. We must address our toxic culture ofthinness.
What does it mean to fight for “health parity” for
people with eating disorders? What are the current challenges and opportunities?
Mental Health parity is the law of the land. It is a violation of the law for insurance companies to refuse to cover treatment of eating disorders “on par” with any medical/surgical issue. However, insurance companies often find loopholes and refuse to cover eating disorder treatment, especially higher levels of care like intensive day programs, inpatient and residential care.
What are some of the ways that stigma can impact individuals and families dealing with eating disorders and mental illnesses in general?
Stigma prevents people from the very things that define quality of life; such as healthy relationships, meaningful work, homes and respect.
Many of us in the eating disorders community have watched and admired your hard work for nearly two decades, and it’s abundantly clear that you embody the definition of RESILIENT. How can we all – activists, clinicians, individuals with mental illness, caregivers and support people – work on cultivating more resiliency in our own lives?
Everyone who is in the “war” against eating disorders needs support and I think it helps to join an “army” made up of people fighting the same issue. There is power in numbers. Nobody can do this alone and there is no need to try to do it alone. There are numerous ways to find support and be an advocate.
Though you recently announced your retirement from a leadership position at The
Eating Disorders Coalition (EDC), when you think to the future where do you see potential successes in the fight against eating disorders?
The EDC definitely had a huge victory when language from the Anna Westin act was passed as part of the 21st Century Cures Act in 2016! However, there is much still to do. One very important thing is to make sure that the Cures Act is implemented correctly. And, we are working with agencies like HHS and DOD. We are asking CDC to add questions designed to address eating disorders into National Health Surveys.
Who do you think could benefit from attending “Shattering Stigma, Advocating
for Change” on February 25 in Baltimore?
My message is designed to reach a wide audience including people who are struggling with mental health issues, their family and friends, professionals and providers and anyone interested in learning about stigma and the impact it has on individuals and the community.
What do you most hope attendees will take away from listening to your presentation in Baltimore on February 25th?
My hope is that my words will encourage people to stand up and use their voices to affect change. There is no hope without action.
Kitty Westin has received numerous awards for her advocacy work and has written several book chapters and articles related to eating disorders advocacy and the impact they have on society. An important milestone for Kitty was being present on December 13, 2016 when President Obama signed into law the ground-breaking health care initiative, the 21st Century Cures Act. The Cures Act includes extensive language from the Anna Westin Act, a bill that will improve access to treatment for eating disorders and education of all health care professionals.
Many thanks to Kitty Westin for her time and responses above. If you’re interested in attending her keynote presentation on February 25, click the image below to find out more and be sure to RSVP.