This blog post was originally published on the M.O.M. (Mother and Others) March website. The M.O.M. March is an event that we are sponsoring and that is taking place on September 30th in Washington DC as an effort to lobby for eating disorder treatment and research. Please register for EDC Lobby Day and join us in making a difference.
In early 2012, my happy, healthy, bright and well-loved youngest-of-four 17-year-old daughter began to lose weight rapidly and experience a lot of stomach issues—the foods on her can’t-eat-this-it-hurts-my-stomach list quickly became longer than the list of what she could eat. Our pediatrician, a savvy and sensible woman, talked to my daughter about these issues over several visits and within a couple of months, after ruling out other possible causes, came to the conclusion the diagnosis was anorexia nervosa.
The doctor told us we would be going to the topnotch UCSD Eating Disorders Center for Treatment and Research. When I asked if Aetna would cover it, she said she would fight for it. She explained UCSD was the only local facility utilizing a Family Based Treatment (Maudsley) model and research showed that to have the best chance for success. Thankfully, Aetna quickly agreed to write a single-case agreement and treatment started within a week.
Recovering from anorexia nervosa is never easy; eating disorders are brutal, persistent and misunderstood by most of society. You didn’t know they are genetic, biological, brain-based disorders thought to be triggered by a period of malnutrition? You are not alone. Fighting stigma is hard when you are also fighting for your own or your child’s life.
My daughter had an early diagnosis, top-notch treatment and she still lost a semester of high school and one of college to her disease; she continues to be followed today to ensure her recovery stays solid. She fought hard to be where she is today (15 months of independent recovery and completing college out-of-state) and she and we are the lucky ones—we’ve had access to treatment that is evidence-based and that we can afford.
I have an entire tab on my blog devoted to our journey that began with this post—my daughter encouraged me to share our story and I am happy to say our openness has helped others. It is this openness that leads me to immerse myself in the world of advocacy and activism and use my experience with social media to raise my voice and help others raise theirs.
Our story is atypical. I’ve not spoken to anyone else whose path has been this direct. Most struggle with uninformed physicians which delays diagnosis. Most have to search, often fruitlessly, for a treatment program that is both evidence-based and accessible. Most have to battle their insurance company endlessly. Most have to follow paths far more rugged than ours (which was decidedly no walk in the park).
I will march on September 30 in Washington DC because parent pioneers like Laura Collins deserve to know there are those committed to carrying on their work. I will march for the opportunity to recover my daughter had not to be an anomaly. I will march for the access to treatment every person affected by an eating disorder deserves. I will march because I know too many mothers who have lost their children and too many who face that prospect. I will march because the researchers who have taught us much in recent years need and deserve funding on par with what other diseases get. I will march so people will understand this disease has nothing to do with vanity or choice and everything to do with brain wiring. I will march to ask my representatives to pass the FREED act. I will march because eating disorders are serious and there is hope.
On Sept 30 I will be marching in the first M.O.M. March in Washington, DC. We must also lobby on October 1 with the Eating Disorders Coalition (EDC) so our Members of Congress and Senators hear our voices. Changes to fund ED research and treatment start with Congress. Our voices will be heard! Please register for EDC Lobby Day and join us in making a difference.
Jennifer Denise Ouellette is a member of the Parent Advisory Committee (PAC) at the UCSD Eating Disorders Center. The PAC is a group of parents with children who have completed the UCSD adolescent eating disorders program and whose role is to support new parents as they enter the program. You can follow her on Twitter @jugglingjenn