When Sheena Carpenter died from her eating disorder in 1993, her mother Lynn, other family members and friends were shocked and outraged that there had been so little help available.
Eight years later, in 2001 a parent who participated in the group for mothers offered by Sheena’s Place described her family’s experience in this way: “When my child first became ill with an eating disorder I felt isolated and overwhelmed. I found that treatment options to help her were minimal. Understanding of the illness was limited. The stigma surrounding eating disorders was great. Nobody talked about it. Loved ones were often cut out of the treatment team and often thought of as the negative, primary cause of the sufferer’s illness. The government had little understanding of the seriousness of eating disorders and resources were and remain limited. As loved ones of sufferers we had no voice and few resources.”
Eating disorders – anorexia nervosa, bulimia nervosa and binge-eating disorder – are psychological illnesses that present numerous challenges in finding treatment. There are few medical doctors or family physicians with in-depth knowledge about eating disorders let alone the experience of treating someone with one. Of those professionals who are experienced, very few are still accepting patients. At the moment when an individual is ready to engage in treatment, she (ninety per cent of those with eating disorders are female) and her family may be faced with treatment waiting lists of several months. This describes the situation in Toronto, where we have more services for eating disorders available than anywhere else in the country.
Founded in 1994 as a charity, Sheena’s Place began in September 1996 to offer support programs at no cost, and without government funding, to individuals with eating disorders and families. Located in Toronto in a house on Spadina Road, it is on a major subway route and close to hospitals and universities. Borrowing from the successful, non-clinical model of Wellspring, a support centre for people affected by cancer, Sheena’s Place has evolved that model into its own model of psychosocial support. The model includes the beliefs that hope and support are goals in and of themselves; that they are essential for healing and for living life with dignity; and that people affected by eating disorders will make informed and longer-lasting life choices in relation to their health. The mission of Sheena’s Place is to work with professionals and those personally affected to provide support, raise awareness and foster education with an ultimate goal of prevention.
Currently, Sheena’s Place offers more than 65 weekly groups that are facilitated by the most highly regarded professionals in the Toronto area each of whom has developed an expertise in the area of eating disorders. The groups – which focus on support, body image, skill-building and expressive arts – are evaluated at the end of each eight or ten week session by the group participants. Feedback from the group participants is instrumental in developing future sessions.
The people who attend groups at Sheena’s Place range in age from teens to those in their sixties with the majority between twenty and forty years old. Although men are welcome they represent only about five percent of those who attend programs.
Whereas most hospital based programs focus on medical stabilization and weight gain through the development of “re-feeding” strategies, the non-residential Sheena’s Place programs focus on personal empowerment, self-awareness and growth through self exploration and the giving and receiving of support in the group context. The focus is on helping those with eating disorders and their families achieve a sense of community and well-being through their group experiences.
In addition to the support group program, Sheena’s Place has an educational mandate that encompasses both the sharing of information, and teaching. An in-house resource and lending library provides students, the general public, and those who participate in Sheena’s Place groups with more than 1,000 books on issues related to eating disorders. The Sheena’s Place website, www.sheenasplace.org, gives widespread access to program information, pertinent fact sheets, facilitator information, suggested reading for parents, a special on-line “zine” for teens and links to other organizations.
During 2002, volunteers from Sheena’s Place delivered presentations to over 7,300 students, parents, teachers and staff at schools and agencies across the greater Toronto area. “A QuEST for Health Program” developed by the volunteer speakers with the leadership of Sheena’s Place staff, provides the framework for school presentations. The QuEST (an acronym for Question, Empower and Educate, Strategize and Talk) program focuses on media influences, health, self-esteem and body image, weightism, and myths and facts about eating disorders. The program has just been formatted into a “toolkit” for greater public and educational use.
Sheena’s Place is seen to be on the leading edge of experiential work in the field. Many communities are looking at the Sheena’s Place model either as a supplement to medical programs or in some cases simply to offer some kind of help where none exists. As a complement and alternative to traditional hospital-based programs, the Sheena’s Place psychosocial support model addresses an enormous void in the continuum of care for those affected by eating disorders.