My Mom and My Eating Disorder

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A little over three years ago, my whole world changed. My parents were separated, living in CT, while I️ was in DC, working at the American Psychological Association. I️ usually texted my family every day, and always heard from my mom every few days at least. One day I️ tried calling her, but no answer – it went straight to voicemail. I was worried, but I️ thought her phone must have died so I️ tried to call later. Voicemail again. I️ called the next day. No response. I️ became worried, anxious, and didn’t know what to do. I said I️ would wait one more day and sure enough, the next day, no answer. I️ panicked. I️ left my desk and started calling everyone in my family, but no one had heard from her for several days.

I️ asked my dad and my sister to go to mom’s apartment to check on her. I was worried about what they would find. Her door was unlocked, car in the driveway, but her computer was gone. She was missing. I️ almost lost it. Where was my mom and was she OK? I️ immediately thought the worst. Little did I️ know that just a few months later we would receive a diagnosis that, in my mind, is worse than I️ ever could have imagined. In the months leading up to my mom’s diagnosis, she was evicted, in the hospital, and finally ended up in a woman’s shelter. It was so sad to watch my mom bounce around from facility to facility with no where to call home. We knew she was sick, but no one had a clue what was wrong. Thankfully, after several weeks, a social worker at the woman’s shelter started asking the right questions, and they were finally able to determine a diagnosis that made sense, and she was able to get the appropriate care.

Three years ago, at the age of 59, my dear mom was diagnosed with Pick’s disease, an extremely rare form of frontal temporal dementia. Unlike other forms of dementia, Pick’s disease is different. You see, it attacks its victims at a very young age. My mom was only 59 when she was diagnosed, but in retrospect, it started several years earlier, perhaps even when I️ was in middle school, nearly 10 years ago. This form of dementia changes people. My mom, like me, was once a very emotional person. She was the most creative person I’ve ever known. She’s intelligent, brave, and always stood up for what is right. But now, I don’t know who she is. She has no emotional affect. Hardly a smile. No laughs. No tears. Just a blank demeanor. Each time I️ visit her I️ just pray that she remembers me. Who was this woman? Her eyes are lost. Is she in there? Can she hear me? Can she understand me?

Her body is shutting down. She has lost most of her vocabulary and her main means of communication is humming. It is without a doubt the saddest and most heartbreaking thing I’ve ever witnessed. There are so many things I️ wish I️ could tell her – so many things I️ wish I️ could say – and so many things I️ wish she could understand. How much I️ love her. How much I️ looked up to her. How much I️ miss her. How much I️ took her for granted. How much I️ wish, more than anything, I️ could hear her talk about her passions, her stories, her life. There are so many questions I️ didn’t get to ask. So many things I️ never knew. And now, there’s no hope.

Her life is trapped beneath her empty eyes, and all I️ can do is sit with her, and hug her, and hope that deep down, she knows that I’m right there with her. I️ hope she isn’t scared and I️ hope that she knows how much we love her. She was, she is, an amazing woman and I’m so glad I️ get to call her Mom. I cannot help but think of all things that we will never get to do together, and it makes me so sad. She won’t be there to help me pick out a wedding dress. She won’t be there, and I mean really be there, for my wedding. We will never be able to talk about parenting when I have kids. She will never get to babysit or give me advice. I will never be able to go to her when I need her. And this is so hard.

I miss her and all I want is to spend time with her, and I mean true quality time. This is SO tough. I️ think this would be tough for anyone. But for me, going through recovery from anorexia, it often feels impossible. Every time I️ went home to see my mom, I️ would relapse or slip or slide. I️ would stop eating because the pain in my heart was just too unbearable and I️ couldn’t cope with it. The only way I️ knew how to cope with the sadness and anger and hatred was through restricting. And it would send me down a spiral that could last days, weeks, even months.

But now, I’m in recovery. And I️ have to use every ounce of strength I️ have to stay in recovery, even while watching my mom drift away. I’m sure my mom always had a hunch that I️ had anorexia, but she never knew for certain. And sometimes I️ just wish she knew, so that she could be proud of hard I’m working to be better- to get better. And sometimes, I’m glad she never had to see the depths of my eating disorder because I️ cannot imagine the pain of a mother seeing her daughter starve herself.

But I️ just wish she could be proud of me. I️ wish she could tell me she loves me, no matter my weight, no matter my size. I️ wish she could tell me that she thinks I’m beautiful or that she thinks I’m hard-working, or that she thinks I’m brave. I️ so desperately wish to hear these words from her, but I️ know I️ never will. So I️ have to reach inside myself and remember all the wonderful memories I️ have of her. Every laugh. Every smile. Every story. I️ know deep down that she loves me. She told me a thousand times. But I️ took it for granted. I️ know she’s lost now, but I️ know that if she could, she would tell me everything I️ needed to hear. I’m not sure how many of you are in this situation – probably not many. But just know that if you are going through recovery while faced with heartbreaking situations, you are not alone. My friend recently told me that I️ have to chose recovery every minute, every hour, every day. No matter what obstacles come across my path, I️ have to stay strong and fight for my recovery. Every day is a new beginning. But you don’t need to wait for tomorrow to start over. Fight for your life because no one else can do it for you. Recovery is so worth it, and I️ hope that you can find the strength to recover, no matter what tries to stop you. And Mom, I️ love you. More than you will ever know.

About the Author: Lizzie Janniello is a Project HEAL treatment grant recipient. She graduated from Hillsdale College with a degree in Psychology in 2014. Lizzie lived in DC for several years, working at the American Psychological Association and a large research firm. She recently moved to Cleveland, OH and wants, more than anything, to help others recover from their eating disorders.

To Those Who Are Mothers of A Child with an Eating Disorder

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By: Valerie Foster
Mother is a single, solitary place to be when one’s daughter stops eating. My daughter’s plummet into the murky world of anorexia hit when she was seventeen. While Jenna was a minor, I could make a lot of the decisions, and early intervention was vitally helpful. But once she turned eighteen, I could not. And that was key to both our recoveries, I believe. I had to learn that while I was doing all of the “dancing” with this demon, the song was hers. In the process, she learned that she sat at the helm of her health. As a writing teacher, I returned to my old practice of journaling, which kept me grounded. My daughter was doing the same, and wrote her way out! During my self-study of this disease, I also learned the importance of drowning out the Negative Mind, and began writing my daughter love letters. Not newsy letters, or discussing the situation, just unconditional letters of love. It was easy. Soon I was getting letters from her. We continue this today. By the way, we can all write these to ourselves, too! An eating disorder is a thinking disorder, and it affects one’s entire family, whether parents, or siblings, or children, or spouses. So, it’s important that their voices be heard, and that they are involved in learning and participating in treatment. My daughter has been fully recovered for over ten years. Neither of us takes that for granted. I know she may be in the minority, but it does happen! There is always, always reason to hope!
Valerie Foster is an educator, public speaker, and author of Dancing with a Demon, her inspiring and hopeful story of fighting to save her daughter from anorexia. You can find more out about her at

You Don’t REALLY Believe That?

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By: Erin Parks, PhD

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.”

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.

This post originally appeared on

About the Author: Dr. Erin Parks is a clinical psychologist and the Director of Outreach and Admissions for the UC San Diego Eating Disorders Center for Treatment & Research . She is passionate about educating clinicians, parents, and the community about the neurobiological basis of eating disorders and the evidence-based treatments that are now available. Dr. Parks wants to help society view mental illness as brain illness–narrowing the funding and resource gap between physical and mental disorders.

10 Things Parents Wish Educators Knew About Eating Disorders

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  1. Eating disorders are “real” and deadly illnesses and having one is not a choice. Your reaction, as an administrator or teacher, to a disclosure of an eating disorder should be the same as if you were told a child had leukemia. Facts: certain eating disorders have a mortality rate as high as 20%, eating disorders are up to 80% genetic, and they are biological in nature. Treatment has to be the number one priority, and the medical and psychological needs of the student should drive how school absences, attendance and other issues are handled. Be aware that boys get eating disorders, people of color get eating disorders, and it’s happening in younger and younger children.
  2. Parents want to work with you, not against you. We understand that most of society is not educated about eating disorders and many myths persist. We don’t blame you if you are not initially well-informed, but once we share our knowledge and provide resources, we expect you to bring your knowledge up to date so you can best serve your students.
  3. Parents and families don’t cause eating disorders. It used to be the medical “truth” that “refrigerator mothers” (cold, unfeeling, non-bonded) caused autism. We now understand that parenting has nothing to do with autism developing. As with autism, families don’t cause the disease of eating disorders, but how they manage them is very important to a child’s well-being. We need your support and understanding as we fight to save our children.
  4. One of the most challenging aspects of an eating disorder is anosognosia (a term meaning that the patient truly does not know he/she is sick). Eating disorder sufferers may perform at very high levels academically, athletically, and in other extracurricular activities. You cannot tell just by looking at someone whether or not he/she has an eating disorder. One can have very serious medical and psychological issues and not be stereotypically thin as you might imagine.
  5. Talking about dieting or weight in front of your students can be extremely detrimental since they often look up to and emulate their teachers. Be body-positive, “exercise-is-fun,” “everything-in-moderation” role models. Please do not give assignments that involve reading food labels, counting calories, and keeping food diaries. Recent studies show that nutrition education, anti-obesity campaigns, and BMI testing do not have a positive impact on obesity and tend to have unintended negative consequences in terms of promoting disordered eating, which can in turn trigger an eating disorder in those who are genetically vulnerable.
  6. Pay attention to your students, and if you notice something amiss, alert the parents. This includes throwing lunches away, bringing treats for friends and not eating any, new or intensified moodiness and social isolation, and indications of self-harm. These signs, especially in a student who is a high academic performer, are red flags. Parents may not notice the symptoms or may be in denial; please don’t let the feeling of discomfort prevent you from having a conversation and following up. This can be a matter of life and death. Approach parents in a way that doesn’t put them on the defensive, such as, “I am concerned about your child’s health …” Having resources to share with a parent can be very helpful; there are links at the bottom of this page.
  7. At all levels, recognize that social isolation is a symptom of the disease, and reintegrating into the social sphere is both a sign of recovery and can be very difficult to navigate. Work with parents on 504 plans, Individualized Education Plans, independent contracts, and other accommodations to allow students to come back to school and participate in activities as their health allows. Would you tell a student who missed three months for chemotherapy that he/she couldn’t go to prom or walk at graduation? This is the same thing – please don’t push our children out because they are inconvenient for the school’s schedule. Recovering only to find you have no life to return to is cruel; due to social stigma and ignorance, this happens too often to children with eating disorders.
  8. Support our children’s return to school with the appropriate meal-monitoring and modified schedules that their treatment team suggests. A supportive school environment can make all the difference in a child’s recovery and we will be so grateful for your help.
  9. Address bullying whenever and wherever it occurs. More students will feel confident about sharing the nature and details of their illness if they understand that the school culture is one of warmth and support versus gossip and bullying. Our children should not have to feel fear or shame about disclosing an eating disorder any more than if they disclosed any other serious illness. Reinforce the idea that good friends seek out trusted adults to share concerns with; many kids are hesitant to “tell” on a friend for bullying because they are not confident that their concerns will be appropriately or confidentially handled, and they fear backlash.
  10. Know the signs of a possible eating disorder:
    • Fear of certain foods—especially fats and carbs
    • Anger at others if pressed to eat something
    • Avoiding situations where communal eating is expected
    • Dieting
    • Assigning moral value & rigid distinction to foods (“clean/dirty”, “good/bad”)
    • Social withdrawal
    • Reports others are newly judgmental or “not connecting”
    • Inability to describe emotions
    • Spending a lot of time in the bathroom
    • Exercising intensely but without pleasure
    • Exercising to compensate for eating
    • Signs of self-harm

With a lifetime prevalence of as high as 1 in 30 people, the odds are great that you will encounter more than one student with an eating disorder in your career. Your knowledge and empathy can positively impact precious lives and help families.

This list was inspired by “Ten Things I Wish Physicians Would Know About Eating Disorders” written by Edward P. Tyson, M.D.

Thanks to the dedicated Warrior Mamas of Mothers Against Eating Disorders (MAED) for their assistance in compiling this Top 10 List. The group’s support can be accessed via a closed Facebook Page. MAED welcomes all to join our Advocacy and Activism page

Further information can be found at:

About the Author:

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