The close of Eating Disorder Awareness Week 2014 reminds me how much more we know about eating disorders since my first brush with anorexia at the age of six, almost 50 years ago.
Much of what we “know” feeds a hunger we share with the media to “eat up” that story: The emaciated teen, victim of the Internet, diet industry or vanity, clinging to life and desperately seeking an elusive, yet life-saving treatment.
Let me tell you a different, yet equally important story, concerning the plight of older women with eating disorders.
It is known that eating disorders typically first strike during adolescence, boys and girls are afflicted and genetics play a significant role. With high relapse and low recovery rates, eating disorders remain the most deadly of psychiatric conditions.
Less well-known is that almost 80 per cent of anorexia-related deaths occur among women over 45, according to a paper by Merryl Bear for the National Eating Disorder Information Centre. Older bodies are less resilient to the physical damage wrought by ongoing eating-disorder behaviours.
Many of us have harboured our eating disorders for decades, either unable to find age-appropriate treatment or “flying under the radar,” thus compounding the risk of death or permanent damage.
Are eating disorders perhaps more than a passing teenage condition? A recent study of 1,900 women over 49 years found “13 per cent of them admitted having an eating disorder; eight per cent reported purging; and 62 per cent said their weight or shape has a negative effect on their lives.”
Enough numbers! Let me share with you what I have learned anecdotally from more than 250 women about our shared experiences. This is important if we are to improve the health and lives of older women with eating disorders.
Unlike younger people, we are often looking back over long-lived lives. If by midlife we are still struggling or starting to struggle with eating disorders, we can experience a magnified anomie, such as: “Why bother? I’m too old to start a life now.”
We might see our pasts as squandered opportunities to get an education, develop careers, fall in love or have children, and have trouble believing that the future can be satisfying and fulfilling. Conversely, we might have had these things and lost them, too sick to work or go to school, losing custody of our children or facing divorce.
Everyone recovering from an eating disorder needs to find purpose and satisfaction in themselves and their lives, but older people often look at these things through entirely different lenses.
Treatment experiences can be invalidating. There are no treatment facilities in Canada specific to older women, and we frequently feel alienated by treatment programs that appear to be specifically designed for adolescent or young adult women. It can feel like going to treatment with our daughters.
We have very different life issues than younger women, yet we are treated without attention to our years or maturity. Clinicians may experience us as more compliant and capable than younger people, and we feel isolated in coping with the intense treatment-related stresses, and often this comes full circle when we cope by engaging in more — undetected and unreported — harmful behaviours.
We are too often described as “chronic” or “treatment resistant.” A researcher describing the virtually non-existent recovery rates for adults commented: “Consider the recovery rates of patients with stage 1 … versus stage 4 cancer. Few patients with stage 4 cancer would recover because the disease had progressed. The same is true for … eating disorders.”
But why treat a stage 4 illness with a stage 1 intervention? We are trying to change behaviours that many of us have entrenched over decades.
By helping us, researchers and clinicians are afforded a unique opportunity to learn more about younger people with eating disorders. Has the incidence increased in the past 50 years? A retrospective longitudinal analysis might provide some insight.
Does access to the Internet and social media cause or exacerbate eating disorders in youth? There were no home computers, much less social media, when many of us were young.
Ask us. We have a wealth of information from the past that can help shape the future.
Sally Chaster is a member of a VIHA Patient Advisory Committee and manages a Facebook recovery support group for older adults with eating disorders.