The UCSD Eating Disorder Center is an international leader in eating disorder treatment & research. We are located in San Diego, CA. Here, we aim to share our knowledge on anorexia nervosa, bulimia nervosa, binge-eating disorder, Dialectical Behavioral Therapy, Maudsley Approach (Family-Based Treatment), and other topics related to eating disorders & recovery. For more info: eatingdisorders.ucsd.edu and visit us on Facebook.
Having appreciated the humor that comedians have poked at“awareness” campaigns, I wanted to be very intentional about what, exactly, I wanted to make people
aware of during Eating Disorder Awareness Week (#EDAW). And then the answer hit me in the face. I was interviewing a clinician—she was kind,
funny, had an excellent resume—and I was telling her about the culture and
theoretical orientation of our center. I
told her that our research uses neuroimaging and genetics to look at the
neurobiological underpinnings of eating disorders and that our three clinics
take an agnostic approach, consistent with Family Based/Maudsley therapy, in
that we truly believe that parents do not
cause eating disorders and they are not to be blamed. The applicant smiled, met my gaze, raised her
eyebrows, and leaned in as though we were about to share a secret…
“I understand why you tell the parents
that, but surely you don’t really
believe that.”
I really do
believe that parents do NOT cause eating disorders. I share that belief with our directors, our
researchers, our clinicians, our office managers, our dietitians, our cooks,
and every last member of our staff. We
believe, that like cancer and epilepsy and schizophrenia and autism, there are
neurobiological and genetic causes to eating disorders. But it is easy for US to believe this—we
spend our days working with wonderful parents.
These parents remind us of ourselves; they’ve been trying their very
best to raise happy and caring children.
These parents are shocked that their child has become so ill,
because similar to the interviewing clinician, they too had previously believed
that poor parenting caused eating disorders.
I wish I could say that was the first time in an interview
that someone had asked me if I secretly blamed the parents, but there are many
intelligent and caring people—clinicians, teachers, neighbors, friends—who believe
the common myth that parents cause eating disorders. This myth of parental causation has existed
for many illnesses and most mental health disorders: schizophrenia, ADHD,
autism, depression. But it feels
particularly pervasive for eating disorders—why is that?
Eating disorders have the highest mortality of any mental
illness—rates that many studies suggest may be comparable to common pediatric
cancers. And yet, when we hear of a
child getting diagnosed with cancer, friends and neighbors spend very little
time wondering what caused the
cancer and instead energy is focused on treating
the cancer and supporting the
family. The same is not true when a
child is diagnosed with an eating disorder.
When I asked a group of caring, intelligent parents what thoughts came
into their minds when hearing of a 13-year-old being hospitalized for an
eating disorder, they confided that they wondered about the parents: did they
diet in front of their children, did they pressure them to succeed, what
messages did they give about body image?
There is this cultural sense that there is a right way and a wrong way
to raise a child, and doing it incorrectly can cause problems—including eating
disorders. So what is the right way?
There is a prolific stream of (conflicting) parenting
articles offering the latest opinion/theory/research on how to approach feeding
your family.
Don’t feed your kids sugar:
they’ll become addicted. Feed your kids
sugar: depriving them will make them binge later. Make your kids try new foods: if not, they’ll
never develop a healthy pallet. Don’t
worry if your kids are picky eaters: they will have disordered eating if you
make food a battle. Don’t bribe your
kids with food: food shouldn’t be a reward.
You can bribe your kids with food if it helps them eat their vegetables. Hide vegetables in your kids’ foods. Don’t lie to your kids about what’s in their food. Let your kids eat as much or as little as
they want: follow their lead so they become intuitive eaters. Your kids should be on a schedule, including
meals: structure is good for kids.
Gluten is bad. All food is
good. Kids have to eat meat. No kids should eat meat. Dieting is bad: teach kids to love their
bodies at all shapes. Model healthy
eating: we have an obesity epidemic. If
you put your kid on a diet they will develop an eating disorder. If you don’t put your kid on a diet they will
become obese and get diabetes. Confused
yet?
The conflicting advice continues when the parenting articles
discuss achievement. Parents should
teach their children art and music and sports and STEM skills and foreign
languages. Parents enroll their children
in way too many activities. Parents should
let their children choose their activities.
Tiger Moms vs Free Range Kids.
Kumon vs Montesorri. It’s your
fault if your children get hurt—you should have been watching them. Don’t be a helicopter parent and let your
children play unsupervised. Challenge your
kids, they need frustration and failure—they need grit. Don’t push your kids—they’ll develop eating
disorders.
Parenting is an
unyielding stream of decisions, creating infinite iterations of parenting.
Our clinic has worked with hundreds of
families and while their home cultures slightly differ, most are just typical
families, trying to find moderation amid the sea of conflicting internet
advice when it comes to feeding and raising their kids. No matter what food and parenting choices
they made for their families, somewhere there is an expert saying that they
made the wrong choice and that is why their child has disordered eating.
A confession: I have two toddlers and I consume the endless
stream of conflicting parenting articles that fill my Facebook feed and the
Huffington Post. Sometimes I WANT
parents to be the cause of language delays and college dropouts and cancer and
bullying and ADHD and eating disorders.
Then I could just parent correctly and guarantee that nothing bad will
ever happen to the two children I love most in this world. But that is not our reality. In reality there are pros and cons to all
decisions and there are complex causes to complex issues. The reality is that parents everywhere are
trying their very best, doing a very good job, and are parenting in ways that
may look very similar to how each of us parent—and their children are
struggling with difficult and scary things—including eating disorders.
Many articles this week will talk about hypothesized causes
of eating disorders—food culture, focus on achievement, the media—and while it
can be important to think about the negative consequences of some aspects of
our culture, this search for a singular cause can feed into the culture of
blaming the parents. The majority of
parents will diet, the majority of women will feel bad about their bodies, the
majority of teens will feel pressure to succeed, and the majority of images of
women in the media will be distorted and unhealthy—and yet the majority of
children will NOT get eating disorders.
I hope we can turn the conversation to the
successful evidence-based treatments that now exist for eating disorders and
how we can improve upon them so that they are effective, accessible, and
affordable for everyone. I hope we can
discuss how parents know their children best and can be the most wonderful
treatment allies in helping their children fully recover from an eating
disorder. I hope everyone can now believe
that parents are truly, really, not to blame.
Erin Parks, Ph.D. is a clinical psychologist and the Director of Outreach & Admissions for the UCSD Eating Disorders Center.The
UCSD Eating Disorder Center is a university-based, non-profit, Center of
Excellence that serves as an international leader in research, treatment, and
teaching. Follow us on twitter @UCSD_EDC and sign up for our email newsletter to receive updates about our clinical treatments, research studies, and
events.
1-week intensive for Adults+Carers; scholarships available.
Three members of the Parent Advisory
Committee (PAC) will be in Boston this week to attend the International Conference on Eating
Disorders (ICED). Alec Rodney, Alyson Earnest and I—all parents who’ve helped
our children recover from eating disorders—are excited to join researchers, clinicians,
and advocates at the annual conference hosted by the Academy for Eating
Disorders (AED). We will be there to
learn about new developments in eating disorders treatment and research, to
develop relationships in order to promote the inclusion of parents as valued
members of treatment teams, and to talk about the revolutionary Parent Mentor
program created at UCSD.
The Parent Mentor program
at UCSD consists of a group of parents whose children are recovering from
an eating disorder. The parents have completed UCSD’s Adolescent Program with
their families and would like to provide support to new parents as they enter
the day treatment program. Parent
mentors know how difficult it is to be seeking treatment for your child—and they
can uniquely appreciate the sacrifices an entire family makes to help a child
recover from an eating disorder. We view Parent Mentoring as a huge improvement
over treatment as usual and we want families all over the world to be able to
access this unique kind of peer support. In working with our mentees, and also in
online ED communities, we have seen the strengthening power, and therefore
healing power, of the collective.
We are also going to ICED to find ways to better educate
people about eating disorders. The
disconnect between our original understanding of eating disorders (prior to our
children getting sick) and the psychoeducation we received at UCSD—it opened
our eyes to the numerous myths and mis-education about eating disorders.
As parents, we advocate that a paradigm shift in clinical
and societal understanding of eating disorders is needed in order to promote an
agenda of early diagnosis, increase access to evidence-based treatment and demand
research funding parity.
Between the three of us, we have attended several conferences:
the 2014
F.E.A.S.T. conference, the 2014 NEDA
conference and both UCSD
conferences. Attending conferences is
something we pay for ourselves. We do this because we passionately believe that
our voices—voices of parents who have been helping their child
recover from an eating disorder–need to be heard and counted.
We know that there are many parents that want to, but are unable to join us in Boston. If there are any particular issues you are interested in us
exploring as we represent both UCSD families and families in general at ICED,
please leave us a comment and we will be sure that your voice is heard.
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
Relatives, neighbors, teachers, and friends often want to know how they can be helpful–how can they best support a family as they seek treatment for an eating disorder. Our Parent Advisory Council responds with some helpful advice.
Before embarking on this journey of treatment, recovery, and now advocacy, many of us believed that treating eating disorders could be accomplished in one hour per week–our child would see a therapist, they’d talk, and our child would get better. Little did we know, treating an eating disorder, whether in an outpatient or day treatment setting, quickly becomes a full-time job!
When one is treating cancer, aggressive treatment from thestart can make the difference between life and death. The same is true of
eating disorders. In the UCSD Day Treatment program, treatment is 6-10 hours per day, 5-6 days
per week and there are many components of treatment that require the entire
family to participate. Parents often spend at least 12 hours per week with their children at the
clinic and that doesn’t include time spent grocery shopping, cooking, supervising meals and snacks, and sometimes even scraping food off of the ceiling.
We parents are happy to EDucate
friends and family, but in the early days of diagnosis and treatment, we were simply too overwhelmed or
strapped for time to answer your well-meaning questions…or respond to your advice. Please accept that you probably know nothing about eating
disorders. It’s hard to say that to the caring friends and family that we respect and love…but in all likelihood, every belief you have about eating disorders is wrong. Which is fine; I
used to be like that too. Everything I knew came from a Lifetime TV movie or an
ABC Afterschool special, so I “knew” EDs were about control and a drive to be
thin … yikes!
Just take our word for it when we tell you it’s a
brain-based biological illness and not a disorder of choice, vanity or family
dysfunction. Believe that we are good
parents doing what our treatment team tells us we should do to save our child’s
life and set him/her on the path to full recovery. If you want to be extra informed and supportive, the primer Throwing
Starfish Across the Sea by Laura Collins and Charlotte Bevan is an
inexpensive, very quick read.
So what can you do to help? There are so many ways …
Logistics(remember that we may be spending 12+ hours per week in clinic with our children…in addition to our jobs, other children, and supervising all of our child’s meals/snacks so that they get the nutrition they need):
Offer to drive our carpools and take our other
kids to their activities
Offer to bring food. If a friend is going
through chemo for 6 months, people pull together and support them; we want that
too! Bonus—we get to tackle fear foods nightly! Even if we say no, you’re
having asked will mean the world to our family.
If you’re a really good friend, offer to do
laundry or clean house—again, as you would for a cancer diagnosis.
Understand when we drop out of life completely.
Continue to be there for us with no expectation of reciprocity. We are fighting
for our child’s life.
Allow us to play everything by ear. It can be a
minute-to-minute thing.
Once we have a routine down, if you have some
time to supervise meals or snacks (24/7 supervision is needed at times) and spend time with our kids, that would be amazing!
Environment:
No, and we do mean NO, fat talk (Look at these
thighs; UGH! You’re so SKINNY, I’m jealous! I was SO BAD at lunch today!) and no food talk. Don’t pat your tummy and make a comment about a second slice of pie.
Don’t promise to work it off. Don’t talk about your own food and definitely do
not say one word about their
food—that’s our job and it’s hard enough already.
Our kids have a difficult time with scales and
will seek them out—please make sure yours are hidden (or better yet, throw them
away as we’ve done—a number doesn’t define anyone) if you invite us over.
Do not try to reason with our child that they are already thin, beautiful…We’ve also seen well-meaning relatives/friends try to encourage our children by telling them to “Just Eat” or bribing them with bikes and trips if they eat Thanksgiving dinner. Eating disorders are complex neurobiological illnesses–and they aren’t logical. We wish we could just promise our child a bike and they’d magically be healthy and happy again. Our children’s brains are thinking about food and their bodies 24/7–they love distracting conversations (The Chargers, upcoming vacations, funny stories, whether dress is black/blue or gold/white), especially while they are trying to get through the difficult task of eating.
Judgment:
Please, don’t judge us; you have no idea what it is like
to have a child with a deadly illness that is made more complicated by societal misunderstanding.
Please, don’t judge us; we didn’t cause the eating
disorder and there’s no “underlying cause” (there may be additional issues;
that’s not the same thing).
Please, don’t judge us; we are likely hanging on by a
thread with the umpteen appointments we have to get to, the grocery shopping,
the cooking and having to supervise our kids meals to ensure they get the nutrition their bodies need.
Please, don’t judge us; small talk will likely not be
something we can do well right now. It’s not you, it’s us.
Please, don’t judge us: the “tantrums” you may see from
our formerly well behaved children are akin to the side effects of chemotherapy
as a cancer treatment. Food is our child’s medicine, but a spoonful of sugar
does not help it go down. Our children need your grace and so do we.
Kindness, Empathy and Understanding:
Yes please!
Mom Andree shares that her friend
sincerely asking “How’s Maddy?” could make all the difference on a tough day.
Mom Alyson appreciated her friends reaching out
with no expectation of a response—for instance a text that simply said,
“thinking of you.”
Finally, this is not a case of just waiting for everything
to return to “normal.” Our lives will never be the same again and it helps us
to embrace that. In the best cases our children will fully recover and we, and
our families, will still be fundamentally changed by the
terrifying experience of seeing our child slip away and having to pull him/her
back to us inch-by-excruciating inch.
The best-case scenario is that the recovery process will
take the better part of a year and continues with many appointments once
treatment at UCSD is over. For some families it can take years. Your patience,
understanding and willingness to support us can have the power to ease this painful
journey in very real ways. Thank you!
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
Having appreciated the humor that comedians have poked at“awareness” campaigns, I wanted to be very intentional about what, exactly, I wanted to make people
aware of during Eating Disorder Awareness Week (#EDAW). And then the answer hit me in the face. I was interviewing a clinician—she was kind,
funny, had an excellent resume—and I was telling her about the culture and
theoretical orientation of our center. I
told her that our research uses neuroimaging and genetics to look at the
neurobiological underpinnings of eating disorders and that our three clinics
take an agnostic approach, consistent with Family Based/Maudsley therapy, in
that we truly believe that parents do not
cause eating disorders and they are not to be blamed. The applicant smiled, met my gaze, raised her
eyebrows, and leaned in as though we were about to share a secret…
“I understand why you tell the parents
that, but surely you don’t really
believe that.”
I really do
believe that parents do NOT cause eating disorders. I share that belief with our directors, our
researchers, our clinicians, our office managers, our dietitians, our cooks,
and every last member of our staff. We
believe, that like cancer and epilepsy and schizophrenia and autism, there are
neurobiological and genetic causes to eating disorders. But it is easy for US to believe this—we
spend our days working with wonderful parents.
These parents remind us of ourselves; they’ve been trying their very
best to raise happy and caring children.
These parents are shocked that their child has become so ill,
because similar to the interviewing clinician, they too had previously believed
that poor parenting caused eating disorders.
I wish I could say that was the first time in an interview
that someone had asked me if I secretly blamed the parents, but there are many
intelligent and caring people—clinicians, teachers, neighbors, friends—who believe
the common myth that parents cause eating disorders. This myth of parental causation has existed
for many illnesses and most mental health disorders: schizophrenia, ADHD,
autism, depression. But it feels
particularly pervasive for eating disorders—why is that?
Eating disorders have the highest mortality of any mental
illness—rates that many studies suggest may be comparable to common pediatric
cancers. And yet, when we hear of a
child getting diagnosed with cancer, friends and neighbors spend very little
time wondering what caused the
cancer and instead energy is focused on treating
the cancer and supporting the
family. The same is not true when a
child is diagnosed with an eating disorder.
When I asked a group of caring, intelligent parents what thoughts came
into their minds when hearing of a 13-year-old being hospitalized for an
eating disorder, they confided that they wondered about the parents: did they
diet in front of their children, did they pressure them to succeed, what
messages did they give about body image?
There is this cultural sense that there is a right way and a wrong way
to raise a child, and doing it incorrectly can cause problems—including eating
disorders. So what is the right way?
There is a prolific stream of (conflicting) parenting
articles offering the latest opinion/theory/research on how to approach feeding
your family.
Don’t feed your kids sugar:
they’ll become addicted. Feed your kids
sugar: depriving them will make them binge later. Make your kids try new foods: if not, they’ll
never develop a healthy pallet. Don’t
worry if your kids are picky eaters: they will have disordered eating if you
make food a battle. Don’t bribe your
kids with food: food shouldn’t be a reward.
You can bribe your kids with food if it helps them eat their vegetables. Hide vegetables in your kids’ foods. Don’t lie to your kids about what’s in their food. Let your kids eat as much or as little as
they want: follow their lead so they become intuitive eaters. Your kids should be on a schedule, including
meals: structure is good for kids.
Gluten is bad. All food is
good. Kids have to eat meat. No kids should eat meat. Dieting is bad: teach kids to love their
bodies at all shapes. Model healthy
eating: we have an obesity epidemic. If
you put your kid on a diet they will develop an eating disorder. If you don’t put your kid on a diet they will
become obese and get diabetes. Confused
yet?
The conflicting advice continues when the parenting articles
discuss achievement. Parents should
teach their children art and music and sports and STEM skills and foreign
languages. Parents enroll their children
in way too many activities. Parents should
let their children choose their activities.
Tiger Moms vs Free Range Kids.
Kumon vs Montesorri. It’s your
fault if your children get hurt—you should have been watching them. Don’t be a helicopter parent and let your
children play unsupervised. Challenge your
kids, they need frustration and failure—they need grit. Don’t push your kids—they’ll develop eating
disorders.
Parenting is an
unyielding stream of decisions, creating infinite iterations of parenting.
Our clinic has worked with hundreds of
families and while their home cultures slightly differ, most are just typical
families, trying to find moderation amid the sea of conflicting internet
advice when it comes to feeding and raising their kids. No matter what food and parenting choices
they made for their families, somewhere there is an expert saying that they
made the wrong choice and that is why their child has disordered eating.
A confession: I have two toddlers and I consume the endless
stream of conflicting parenting articles that fill my Facebook feed and the
Huffington Post. Sometimes I WANT
parents to be the cause of language delays and college dropouts and cancer and
bullying and ADHD and eating disorders.
Then I could just parent correctly and guarantee that nothing bad will
ever happen to the two children I love most in this world. But that is not our reality. In reality there are pros and cons to all
decisions and there are complex causes to complex issues. The reality is that parents everywhere are
trying their very best, doing a very good job, and are parenting in ways that
may look very similar to how each of us parent—and their children are
struggling with difficult and scary things—including eating disorders.
Many articles this week will talk about hypothesized causes
of eating disorders—food culture, focus on achievement, the media—and while it
can be important to think about the negative consequences of some aspects of
our culture, this search for a singular cause can feed into the culture of
blaming the parents. The majority of
parents will diet, the majority of women will feel bad about their bodies, the
majority of teens will feel pressure to succeed, and the majority of images of
women in the media will be distorted and unhealthy—and yet the majority of
children will NOT get eating disorders.
I hope we can turn the conversation to the
successful evidence-based treatments that now exist for eating disorders and
how we can improve upon them so that they are effective, accessible, and
affordable for everyone. I hope we can
discuss how parents know their children best and can be the most wonderful
treatment allies in helping their children fully recover from an eating
disorder. I hope everyone can now believe
that parents are truly, really, not to blame.
Erin Parks, Ph.D. is a clinical psychologist and the Director of Outreach & Admissions for the UCSD Eating Disorders Center.The
UCSD Eating Disorder Center is a university-based, non-profit, Center of
Excellence that serves as an international leader in research, treatment, and
teaching. Follow us on twitter @UCSD_EDC and sign up for our email newsletter to receive updates about our clinical treatments, research studies, and
events.
You know how sometimes you see someone getting out of a car, parked in a handicapped spot, and they don’t “look” sick–you may question whether or not they’re really handicapped. Eating disorders can often be invisible to the rest of the world–even to our closest relatives. I’ve heard many tales of well-meaning relatives sharing that sufferers “look normal” and asking “what’s the big deal” during a holiday meal. Sometimes even parents can fall into the trap of pretending things are back to normal.
Families who have been struggling with eating disorders often dream of their lives returning to “normal.” For some families, the allure of the holidays–full of tradition, celebration, and connecting–cause them to attempt to keep up with normal holiday activities, even in the midst of fighting a battle for their child’s life.
Attempting a “normal” holiday season is a losing proposition and one that leaves you with less energy for what you need to be doing—feeding your kid. Plus it gives your kid more anxiety—food is everywhere! In large quantities! And it’s mostly not carrots!
Almost universally, the families I know who have successfully recovered, advocate a “hunker down” mentality. Keep it simple, stay at home, just the closest family. You’d likely sit out many holiday events if your child was in recovery from cancer and his/her immune system couldn’t bear exposure to crowds. This is the same thing.
Celia, a Boston mom has kept things simple this year to ease her daughter’s anxiety and help her be successful with her meals during the holiday season. They had success with just the five of them on Thanksgiving and she’s trying it again at Christmas. Weather permitting, she may have company with another family from treatment—nobody will be shocked if ED makes an appearance at the table, and everyone can practice their distraction and distress tolerance skills.
This is a year to pull back, to circle the wagons, and to invest in long-term recovery. The time spent now confronting the disorder and getting full, ongoing nutrition to be 100% consistent and to keep behaviors in check and anxiety down will pay off at many holidays down the road.
With less time spent running around you can have downtime together—a Netflix series, knitting, board games—that serve to give you a place to engage without conflict—and I think we can all agree that’s something in short supply when dealing with an eating disorder.
Stocking stuffers were a topic of discussion on Eating Disorder Parent Support recently, and we brainstormed a huge list that was not food related: nail polish, costume jewelry, socks, ornaments, hair stuff, cool Mandalas, coloring books and markers, anything crafty, even a small Lego set—you’re never too old to play with Legos. Maybe prepare your child for one piece of chocolate to be a snack—that’s what Celia is doing.
If you feel you are in a place where attending some events is recovery-minded, keep in mind that pulling out at the last-minute is fine. Mental health—that of everyone in the family—comes first; the world will have to understand.
My family is at a place—three years into our journey– where we can gather socially around food and do traditional holiday baking without anxiety. I am beginning to exhale. It takes a tremendous amount of work on everyone’s part to get here and you don’t want to move backward for the sake of one holiday season.
Wishing everyone a 2015 that is a Year of Recovery!
Jennifer Denise Ouellette
Jennifer Denise Ouellette is a member of theParent 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
On November 17, The UCSD Eating Disorder Center’s very own @DrStuartBMurray was interviewed on national television on “TakePart Live” The episode pertained to the issue of body image. Below is a link to watch the interview and a photo of Dr. Murray with the hosts of the show.
I had the incredible pleasure and honor of presenting with Dr. Stephanie Knatz and Dr. Roxanne Rockwell on the topic of “An Intensive, Multi-Family Treatment Program for Adolescents with Eating Disorders” at the NEDA 2014 conference in San Antonio. I spoke in the place of June Alexander and was blessed to be able to draw from the family stories in her upcoming book, as well as those of parents I know personally, in crafting my speech. Our presentation was well received and I was thrilled with the atmosphere overall in terms of listening to families on what they need from treatment. I think OUR words are powerful and telling and I appreciate that UCSD is a leader in forging ways to improve treatment outcomes that honor and include families. I wanted to share my speech and these stories with you in hopes that it will highlight the HUGE impact that multi-family treatment (MFT) can have on a child’s treatment and recovery:
Hi, my name is Jennifer Denise Ouellette, and I am a mother, wife, educator and activist. In late 2011, my once chaotic household of me, my husband, and four kids (plus animals) had shrunk to just three of us—our youngest daughter Kinsey who was 17, my husband who was working out of state because the bills needed to get paid even in a terrible economy, and me, just embarking on a career as a teacher after decades at home.
To say I was delighted to quit making a home-cooked meal for six on the table most nights would be an understatement. It was bliss, short-lived but bliss nonetheless. I’m sure you can see where this story is going … soon I would find myself cooking for my daughter’s life.
Anorexia was never envisioned as a stop on life’s journey for our family. Coming from a family of origin with significant disordered eating, I parented like a “How to Not Give your Child an Eating Disorder” article on CaféMom or Babble.
By January of 2012, my girl was firmly down the rabbit hole. Thanks to an amazing and knowledgeable pediatrician, we wasted little time ruling out other causes of the mysterious troubles that made all food upset her stomach. By the time she landed in the ER due to orthostatic fainting twice in 12 hours and a conk on the noggin from hitting the dining room table on the way down, we already had an intake appointment at UCSD set up.
She fainted on a Sunday. The following Saturday—the delay being the need for a single case agreement that Aetna expedited and for which I am eternally grateful—was our first day at the UCSD Eating Disorders Adolescent Eating Disorders Program.
Days before the appointment, we believed we would be signing up for the treatment plan for easy cases, for people who caught the disease early and got help quickly. It turned out, according to the lovely, firm Intake Coordinator at UCSD, there were no easy cases. A meltdown over a zero-calorie Gatorade left no room for interpretation. A partial hospitalization program (PHP) six days a week, six hours a day was what it needed to be.
The three of us walked into the building that Saturday morning having no idea what to expect. We’d been given a breakdown of what the days looked like, but none of it meant much to us. We did what one does in these times: we followed others. And there were many others, some very exhausted parents like us and others more relaxed, all with adolescents, varying from vacant-eyed like our daughter to sunny and smiling. It was like a bizarre Breakfast Club as I reflect upon it … the cheerleader, the jock, the nerd and the misfit were all represented. The scholar was in almost every one.
I wish I could remember the first person to extend a kindness to us that day, the person who made us breathe a sigh of relief and give us hope this current horror might not be our reality forever. But that person is lost in the fog that clouded my world in those days. Whoever he or she was, that kindness got us into a breakfast buffet line and there began our family’s journey to recovery.
Today Kinsey is a veteran of almost five months of multi-family treatment (MFT) as an adolescent and another six-week “booster” treatment as an adult. She goes to a university out of state. She has sustained recovery independently with support for 18 months now. “Cautiously optimistic” continues to be our catch phrase.
Today I am a member of the UCSD Parent Advisory Committee and a mentor for other parents in multi-family treatment at UCSD. I am a proud member of F.E.A.S.T, and I was recently at the Inaugural MOM March and Lobby Day in Washington, DC. My cause is early diagnosis, access to treatment and insurance coverage for treatment. Insurers are more likely to cover cost-effective treatments and treatments that allow kids to stay at home as that also saves money.
In my estimation, families who are in a multi-family treatment program do well because they build support systems with other parents who are on the same journey. Therapists, psychiatrists, doctors and dietitians are all well and good, but let’s face it—there is NO way they can be there for us every time we need someone. But WE parents can do that for one another. It matters. It matters so much.
To be reinforced and uplifted in the moment strengthens us to be the Mama and Papa Warriors we need to be to fight the eating disorder. Who doesn’t think this fight is so horrendous we need all the tools we can to help our loved ones?
What are the specifics of multi-family treatment that families find useful? June Alexander explores this topic in her upcoming book, co-authored with Dr. Ivan Eisler. I am going to share pieces of those stories with you along with anecdotes from the wonderful friends I have made with other parents.
For me personally, the first thing multi-family treatment did was give me hope and to sit in a room full of parents and not have to feel insane. It is a gift and a very empowering one. At UCSD, we were given articles to read to bring our knowledge up-to-date. I don’t know that everyone read every bit of that material with a highlighter as I did. We had presentations by Dr. Kaye and Dr. Schwartz where we parents were brought up to date on amazing new research. We were educated on medications and not pushed into making decision overnight. We were invited to become members of our children’s treatment team. We were able to speak freely about what we were experiencing and how that made us feel. Neither the clinicians nor the other parents ever suggested we were to blame for our children’s diseases.
This information meant I was able to begin making sense of what had happened that seemed so innocuous to start and turned so deadly so quickly: the cooking shows and baking, the Friday and Saturday nights my social butterfly wanted to be home with just mom, my daughter’s new personality (or lack thereof). Unlike many parents, I never believed I caused my daughter’s anorexia. I knew I was nowhere near a Lifetime TV stereotype yet my daughter was very sick. Science was a portal to hope for me.
Fellow parent mentor Alec shares a journey that didn’t begin with either family-based treatment (FBT) or MFT, but ended there: “We started the treatment of our 11-year-old daughter’s eating disorder thinking we could do it alone. We found a therapist and a dietician, and our pediatrician’s office had an appropriate understanding of the gravity of the situation. We talked to the intake coordinator at UCSD, and the Multi Family Treatment/PHP sounded too intense. We felt our daughter did not present a difficult case; we just needed to get her to gain a few pounds to get her back on her growth chart. The idea of taking her out of school seemed too radical, school being the thing she loved most.
Her first 2 months of treatment looked very similar to the status quo. She stayed in school including PE class, she played soccer, she stayed very active, and she didn’t gain weight. We vigilantly monitored that she ate more, but she barely gained weight. We seemed to intuitively have the right idea regarding parental involvement, but we had no tools and limited support. Two months into a routine that included weekly individual therapy and bi-weekly dietician visits, we started seeing red flags. She became more obstinate about eating and seemed less present in all aspects of life. We needed to get radical. We called UCSD again and our daughter entered their six-hour program at the end of May 2012, three months post -diagnosis.
Things changed immediately when we got to UCSD. The team made sure our daughter knew we were in charge of her food and portions. This felt empowering, but what really invigorated us was the interaction with the other parents and caregivers. They acutely understood our struggle and offered encouragement that we could successfully re-feed our child. They had tips for dealing with the ugly side of family-based therapy where the child becomes someone you don’t know and the eating disorder makes every effort to make you feel like you are failing. Many had lived this and worse. The parent-processing group –though always difficult - gave us hope that we could get through this. Anorexia, and the behaviors associated with it, made us feel so disconnected from everything and everybody else in our lives, but the other parents knew what we were experiencing and helped us navigate the nightmare.
We took advantage of every aspect of parent involvement that UCSD offered: weekly dialectical behavioral therapy (DBT), Maudsley coaching, and the all-day Saturday group. Saturdays became something to look forward to because every week some other parent always offered up a gem of knowledge and the staff kept adding to our toolbox with practical tips and great research findings. To hear Dr. Kaye talk about the genetic traits shared by many of our children and the fascinating results of his brain scan studies gave us hope that hard research can help us.
When our daughter discharged the first time, our biggest mistake, looking back, was not staying in touch with the other parents. We put too much faith in our post-UCSD treatment team, who had a very detached approach to treatment. We experienced some victories, but soon our daughter was slipping back down the rabbit hole and we felt that placing her in a residential facility represented our best shot at cutting off the slide.
Residential treatment provided a temporary boost for our daughter, but it came with a philosophy that she could feed herself upon release. We intuitively knew that not to be the case and within six weeks after release, she was back at UCSD in their new afterschool intensive outpatient program (IOP). We weren’t going to squander the opportunity. The program had developed to include a more formal parenting education component and coached meals two nights per week. Nearly two years into this dark journey, we quickly realized how seasoned we were at fighting the eating disorder. We had become the parents that the new families looked to for advice. In helping fellow moms and dads navigate the early weeks of their respective journeys, we realized how skilled we had become. This invigorated us to fight harder at home and eventually get down to the areas of greatest resistance in our daughter’s case. Had we not been in the MFT environment this second time, we would not have the confidence in our own skills.
Upon discharge, I was asked to join the Parent Advisory Committee and Dr. Rockwell described the role of parent mentors. I jumped at the opportunity because I knew that as a mentor I could positively impact other families whose life had been high-jacked by the eating disorder. I also knew that most parents with children in solid recovery tend to “move on” and put the eating disorder behind them. This is tragic because these parents have taken the difficult route of family based treatment and offer a wealth of knowledge and experience that most therapists don’t offer. I wanted my experience to be a positive force.
I especially knew I could help other dads, both one-on-one as a mentor and by attending Saturday dads’ processing groups. Men often view eating disorders differently than women. When dads talk amongst ourselves, we reveal the chinks in our armor that we often won’t admit while in the watchful eyes of our wives. Many of us are fixers and it helps to hear from another guy that you can’t just fix an eating disorder. A man in group can be emotional and not be judged for his feelings, or he can be reserved and not have others wondering why he is holding back. We focus on what the other men have to share without reading beyond that. The dynamic differs greatly from mixed-gender parent processing groups. When we get beyond the ‘Mr. Fix-It’ role, we truly become stronger members of our children’s treatment teams.
All aspects of MFT empower parents. In the end, only powerful parents can successfully fight an eating disorder, and the more tools and positive feedback you get, the more likely you are to believe in your own power.”
Faith, whose 22-year-old daughter is the six-year veteran of a revolving door of residential programs (and very good ones), learned about the biological basis of eating disorders at UCSD’s Intensive Family Therapy program, something she’d never heard before. For their family, that knowledge was monumental and precipitated a shift in the entire family’s thinking. MFT also confirmed for her that no matter how old the patient is, parents and families are the most important allies someone with ED can have. Faith’s family is still firmly in the midst of ED, but as her husband Peter said, “This is the first time I have ever been empowered to help my daughter.” Weight gain is steady, and she is eating foods she hasn’t touched outside of treatment for years.
John, whose family ended up relocating from China to the U.S. to fight their daughter’s disease, felt the focus on science and information was helpful to not just him and his wife, but their daughter as well. “The treatment team knew what they were doing; they were pragmatic. It was a shock and reality check to learn that Annie could die from this illness. One thing Annie could relate to was the medical explanation regarding bone density—she has a science mind.”
So, science gave me, and gives many others, hope and insight. This piece could and should be part of any program and needn’t be specific to MFT, but it is easier to share and discuss this information with multiple families and let the synergy of the group drive discussion and education.
What is specific to MFT is the hope we get from each other. The families who were close to discharge were my lifelines the first few weeks. I was so eager to hear how they did it. That bouncy, bright-eyed kid saying farewell, “thank you” and “keep in touch” could be MY kid. If they could do it, so could I. By the time families like ours end up in treatment, we are so isolated, confused and desperate that the happy families are like oases in the desert and the sad ones are like fellow travelers who will at least bring companionship to this horrifying journey.
The thing about managing food for someone with an eating disorder is that it’s really hard, really freaking hard. And these are our kids. We don’t have the detachment you all have. We need to LEARN detachment for all the meals after they are done with treatment. We need to learn to dolphin. We need to know DBT skills, such as DEAR MAN, Broken Record and Mindfulness. And we need to see with our own eyes that if we do these things—if we buy in to that which may be uncomfortable and face realities we might want to protect ourselves from, we can be the MVPs of our kids’ treatment team.
John’s wife said, “I truly believe that family support is 95% of the solution to this illness.” Amen. She adds, “I learnt to replace my fear with hope by watching other parents in our parent processing group. I also saw that when parents don’t see hope they get caught in a downward spiral with no win in sight, so I learnt to keep calm because hope is half the battle. To hear stories of recovery, to share in the parent group and see the children making progress, you see the hope.”
Alyson, whose 18-year-old daughter is a freshman in college recovery after beginning MFT as a fifteen-year-old having been doing less intense work on her eating disorder for a couple years, says, “Hearing the stories from the other families who were further along in their journey as well as those who were right there in the midst of it was my number one lifesaver! There is nothing that compares to hearing from someone who is experiencing this first hand in the kitchen! Hearing from them gave me practical tools that I could use without having to try to understand the theories behind what we learned from the therapy. And then, for those who came in after us, it helped to have input to offer the ‘deer in the headlights’ families who were just beginning. I felt a bit empowered for the first time, which was a necessary component for me.”
Alyson is now a very good friend. I am so grateful that she was empowered enough to tell me, as we sat in the foyer one day waiting for DBT hour to start, she near the end of her time there and me still near the beginning, “The reason she isn’t gaining fast enough is you aren’t using heavy whipping cream. “ To all of my “well, I use olive oil and she freaks out if …” protestations, she responded, “Heavy. Whipping. Cream.” It was a turning point in my daughter’s recovery.
One reason I think talking to other parents is so important is to be able to understand that the cruel, spiteful and possibly violent person your child can sometimes transform into is not really your child. It is one thing to read “manipulative behavior” as a characteristic of someone with an eating disorder; it is another to have an enemy take over the brain of someone who knows you intimately and use that information to wound you when threatened. As Alec describes, often times ED can stay at bay all day in program and then lash out with a vengeance when you get your child home. Therapists will seem bewildered and may even think you are exaggerating the reports of bad behavior. Other parents will say, “Oh yeah, my daughter acts the same way.” Having the peer support in these instances really helps keep your sanity.
As someone on the other side, I think a huge gift I can give to other parents is the knowledge that MFT has made us stronger and closer. My girl and I are very close (but not enmeshed!) and watching her talk to parents about how to help their kids recover and voicing appreciation for those standoffs where cutlery was flying is a blessing. She credits us with saving her life as she says she knows she never would have stopped on her own. That is a bond that cannot be broken.
Nicole was 14 when she developed anorexia. Her mother voices how her tears flowed as she realized “the reality of the difficulties ahead—that to help Nicole get better we would sometimes have to do things we did not want to do. We would have to do things that we were afraid might hurt our relationship with our child, like enforcing the consequences if she did not eat the food on her plate. Standing up to the illness at every meal was already scary for Nicole and painful for us. “
Nicole’s older sister could see both sides of the struggle and she realized, “Helping people with anorexia to get well, they have to eat, and eating is the scariest thing, at times my parents were like, ‘you have to eat this’. I wasn’t there much, but when I was I could see the fear and the pain it was causing Nicole. I felt like saying, ‘can’t we try something else?’ But the bottom line was she had to eat to get better. “
Madi was 16 when she and her family were in MFT, and she’d been suffering since 13. Her mother says, “I personally got a lot out of meeting the other moms and dads. We got a lot of support from them, and conversations such as, ‘you know, if this does not work, try this’ and ‘if your daughter is not wanting to eat that, maybe try this’ were really helpful.
The parents asked each other certain questions when the kids weren’t in the room, like ‘what do you do when you find your kids walking around in the house in the middle of the night to get more exercise?’ and ‘what do you do when you find your kid doing jumps in their bedroom?’”
Madi herself shows the tremendous insight many of our kids have about their experiences in treatment and recovery: “With a five-day intensive family program, it is kind of like a fifty-hour long pep talk. You have five days with people who are in the same situation as you. Maybe not everyone has the same social, economic or cultural backgrounds, but everyone has come to this same point in their life due to the eating disorder. MFT teaches you the ropes. You are encouraged to do things to help heal yourself, you are helped to find the best parts of yourself, and you do a lot of reflection.”
I hope we are at a place, collectively, where we can all agree that waiting for someone with an eating disorder to want to be helped is the road to a 20% mortality rate and serious health consequences. I hope we all understand that while for some people it may be about more than the food, the one thing it is about for everyone’s recovery IS the food (and the behaviors and often the weight as well).
We HAVE to be able to feed our kids—often into adulthood with the way ED can stunt brain growth. The doctors and researchers will have to be the ones to come up with a way to quantify the importance of multi-family groups; I am here to speak to the anecdotal. The stories I hear in the online support groups Mothers Against Eating Disorders and F.E.A.S.T.’s Around the Dinner Table echo what I am saying here—there are so many families who have tried sending their children away with an eye toward collecting a recovered child in two, three or six months’ time, and they are baffled that all the amazing progress of treatment melts away, sometimes in weeks and they are back where they started from. Peer-to-peer support is the missing piece.
These diseases are brutal and persistent and must be attacked on all fronts and for extended periods of time. MFT is basically a skills-based processing and education program for parents alongside their children. Therapists get to witness and weigh in on family dynamics—not for purposes of blame, but for helping to reach the goal of recovery for the child. Patients form bonds with other patients that can be the catalyst to choosing recovery. Annie’s father says, “The trigger for her wanting to recover occurred when the she realized this could help her-the friendships, the connections, the bond with the other kids, all this was important. She began looking beyond her illness. “
For those of us who must fight alongside our children, we need to see there is a place beyond our current hell. We need a map to get there. We need someone to take our hands on the steep hills and shine their flashlight on the path when it becomes too dark to see. We need someone to kneel beside us and encourage us when all we can do is crawl, and then we need that person to tell us we need to STAND back up and resume the fight because they did and their child is in recovery now.
Families need each other. Parents need each other. We need clinicians to understand how much important peer support for parents is. We need multi-family programs at every level and we really need programs that are cost-effective enough that we can get insurance companies to understand that early, aggressive intervention with the component of peer-to-peer support saves lives.
Kinsey will be 20 when she leaves to study abroad at University of New South Wales in Sydney, Australia. While there, she will have mothers’ eyes on her—the eyes of mothers I have never met but am bonded with through online support. We are each other’s safety vests, life rafts and lanterns in a dark and stormy sea. Peer support makes all the 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
How to create a relapse prevention plan when recovering from an eating disorder. Things which may cause slips and relapses, coping strategies, dealing with negative thoughts, helping yourself …
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