These articles were first published in my complimentary monthly newsletter, "The Eating Disorder Survival Guide for Parents"™. It provides expert information on Eating Disorders, and practical tips for parents and their children. Subscribe below now.
Cris Haltom has a Ph.D. from Cornell University. She is a licensed psychologist in private practice in Ithaca, N. Y. Cris is an Approved Supervisor (#110) for the International Association of Eating Disorder Professionals. She is available for training, presentations, and workshops. She has published articles, co-edited a text book, appeared on cable television, taught workshops, and taught academic courses as adjunct faculty at Cornell University and other colleges.
As part of her psychotherapy practice, Cris works as part of a team with physicians and nutritionists to provide treatment children, adolescents, and adults with eating disorders.
The Eating Disorder Survival Guide for Parents(tm), published by Cris Haltom, Ph.D., is a FREE monthly newsletter intended for parents whose children are or have been in treatment with appropriate professionals for eating disorders. Related coaching, education and support groups for parents are intended for the same audience. The information presented is NEVER substitute for professional intervention. Further, tips and guidelines offered in newsletters and consultations may or may not apply to the individual circumstances of readers/ participants. Only a professional physician, certified mental health professional, and/or registered nutritionist can determine the best guidelines for each individual child and family.
By Dr. Cris Haltom
Our special gratitude to Mary Ellen Clausen, mother of two daughters with eating disorders, eating disorder activist, and Founder of Ophelia's Place in Syracuse, N. Y. Mary Ellen graciously agreed to be interviewed for this edition of the Eating Disorder Survival Guide for Parents. (More in Part 2.)
Mary Ellen Clausen sees herself, first, as the mother of two daughters who continue, after almost seven years of combined residential and outpatient treatment, to battle their eating disorders. Her daughters, 24 and 19, are on the long road to recovery. She sees their entire family has having been afflicted with the disease of eating disorders since 1997. Eating disorders in young people are truly a family affair.
Mary Ellen's family has suffered: "The sense of loss was overwhelming at times, we exhausted all our financial resources for treatment for our daughters, and we were faced with a crisis on a daily basis." She believes that "eating disorders encompass the whole family." Because of this, Mary Ellen would like to see parents included as essential to the treatment/recovery process. She said, "Listening to parents is as important as listening to the patients. Our fears and our frustrations are real."
Ophelia's Place is an eating disorder resource, support, education and prevention center in Syracuse, N.Y. It offers hope, support for patients and their families, and education and referral resources. It was the result of Mary Ellen's youngest daughter's desire to seek support locally, in Central New York, after spending four and one-half months in treatment for an eating disorder in Arizona. By providing a local resource center, Mary Ellen and her family believe parents, patients, and an interested public can more continue to educate themselves about eating disorders and actively work on prevention issues.
Mary Ellen spoke at a 2003 national Eating Disorder Coalition Congressional Briefing when Congresswoman Judy Biggert (R-IL) introduced an eating disorders bill into the United States House of Representatives. She told of her daughters' immeasurable suffering, frightening near-death experiences, and the helplessness she experienced when both her daughters faced, and continue to face, serious, ongoing medical crises. She reported the sad lack of financial help available when residential treatments were essential: "The average length of treatment has been sixty days at a cost of $30,000 per month. You can do the math...we choose not to.... Our 401K's are a thing of the past... we have re-mortgaged our house, taken out loans and max'd all credit cards... and will continue to so....Emotionally and physically we are exhausted... but we will never give up....My husband and my faith are my rocks that never budge...I thank God for that."
Mary Ellen's oldest daughter began showing signs of an eating disorder when she went off to college. She had graduated at the top of her class and received an academic scholarship to a top university where she hoped to pursue medicine. Her daughter was unable to complete her freshman year, and returned home with hopes of returning to school. Unfortunately, as Mary Ellen reported in her Congressional Briefing, the "eating disorder ... had something else in mind. The control the eating disorder had on her was bigger than anything we were prepared for. She cycled through treatment facilities with her insurance company making life decisions on her recovery." While dealing with her first daughter's illnesses, Mary Ellen continued at the Congressional Briefing, "Also imagine just for a moment.. through all of this...your second daughter...your baby girl...succumbs to this disease...so rapidly and so severely...you just didn't see it coming..." Through all of this Mary Ellen and her family have endured and continue to grow individually and as a family.
I asked the single most important piece of advice Mary Ellen would extend to parents. She replied, "We are powerless to "fix" them (our children). However, we have the responsibility to do whatever we can to give them the professional help they need. Because it is a mental health issue I believe we tend to stand back and wait for the eating disorder to get worse...we tend to be visual with the illness... that if they don't look bad they must be doing okay. There is nothing further from the truth. Parents must take a very active role in the disease. We have an obligation to be aggressive in combating the disease."
When asked what special needs parents of children with eating disorders have Mary Ellen offered the following. "We, as parents, should not be defined by our children's eating disorders. Unfortunately, more often than not, we become consumed by it...and as a result we do not take care of ourselves...and we must try really hard to nurture ourselves in this. I kept saying when my kids are better I will take care of myself and find time for my husband and us as a couple. That is not healthy. Instead of having two children struggling we had an entire family...not good."
On the topic of parent self-blame, Mary Ellen said, "Self-blame is self-destructive. We cannot change the past. Yesterday will always be yesterday. We need to acknowledge and recognize our role in our child's eating disorder, change the ways we perpetuate the disease and most importantly ask for forgiveness and move on. They (our children) need us to be the parents and take care of them. We are not perfect, but we truly love our children in our imperfect ways. Blaming is counter- productive and focuses on staying in the problem, not in the solution."
Eating disorders often take a long time to treat. I asked Mary Ellen what advice she had for parents discouraged by the length of treatment. She pointed out, "Recovery is truly a process. Overall my daughters have been in inpatient eight different times over almost seven years, and of course, there is no quick fix. I believe eating disorders are the hardest addiction to break...My older daughter struggled with many...alcohol, drugs, cutting, extreme obsessive compulsive behaviors. The addiction that was always safest for her was the eating disorder. There were times I was completely discouraged, but I never gave up...I tried building on everything I learned... like setting boundaries, taking care of me, working really hard not allowing the disease to take over the entire family. Patience is certainly key. I think it is also important to understand that relapse is part of recovery."
Regarding hope for recovery, Mary Ellen stated, "The hope I offer other parents is recovery is possible. My faith has grown tremendously through all of this. We have all used this disease in one form or another as a foundation to rebuild our lives. That has been a true blessing, and although financially we are somewhat depleted, emotionally and spiritually we all feel so much richer for having experienced all the pain and burdens. We have become stronger as a result."
SUMMARY Mary Ellen Clausen offers a unique and hopeful perspective on eating disorders as the mother of two daughters with long-standing, severe eating disorders. She believes recovery is possible, even if it takes a long time and is marked by periods of relapse. She encourages parents to remain hopeful, take an active role in treatment, and be active in education and prevention efforts. She warns parents not to dwell on the how's and why's, to take responsibility for any inadvertent support for the illness, and be proactive in problem solving. She encourages parents to channel their pain into constructive efforts to make a difference.
(More in Part 2.)Claussen, Mary Ellen. Interview with Mary Ellen Claussen on 12/31/03. Excerpts from Mary Ellen Clausen's speech to the Eating Disorder Coalition's Congressional Briefing, Feb. 26-27, 2003, at the Capitol, Washington, D.C. Mary Ellen Clausen, Founder, Ophelia's Place.
