Eating disorders are not well understood, isolating, frustrating, and painful. And that goes for the person who has it as well as the people who love and support that person. When a child develops an eating disorder, parents can easily become overwhelmed by treatment, fear, and frustration. It can help to hear stories from other parents who have gone through the recovery process.

This eBook was written to provide a mother’s perspective of her daughter’s eating disorder recovery. This eBook is provided courtesy of Recovered Living, a recovery coaching service that, from this mother’s perspective, was a critical element of her daughter’s recovery from an eating disorder.

Following are a few excerpts from the book, but it’s well worth reading in its entirety for more details and perspective.

What I learned about recovery

“(To me) owning recovery involves eating, feeling emotions, building relationships and participating in life – everything an ED denies.”

“My daughter was told that recovery is harder than she could imagine … and supporting her in her recovery has been so much harder than I imagined, too. I can see why those who recover can accomplish anything they choose in life because I think I could tackle most things now and I’m only the support person.”

“My daughter initially struggled until she found a recovery coach who stated outright that becoming fully recovered was possible. For her, the knowledge of being able to recover was the foundation to her decision to commit fully to recovery, but even then the pull of the ED was still very, very strong.”

“Learning to own recovery includes allowing feelings to be felt; good and bad.”

“Real recovery comes from being able to emotionally step back in life; a life the ED is accustomed to numbing them from.”

My own relationship with food & weight

“I previously thought I had a good relationship with food, but I was silently a watcher of my weight and a dieter, although I never openly dieted or talked about my weight. I hadn’t realized that my own self-esteem was tied to the size of my clothing.”

“… for me, addressing my own issues around food, body image, and weight has been crucial.”

“Eating what I want, doing what I want, and being me, without judgment based food eaten and what the bathroom scales say, is freedom – just like I want for my daughter.”

“I could never imagine going back to how I was before, which is how so many other mothers I know live. The sense of freedom is very liberating.”

Walking on eggshells

“I have never walked on so many eggshells in my life since an ED took up residence in our home!”

“… no one told me we did not need to walk on eggshells. Only after we found her recovery coach did I learn that this behavior was actually the ED exerting control over the whole family …”

“If an ED had its way, it would zip everyone’s lips. Talking can help draw my daughter our and temporarily away from her ED because she can’t withdraw and be present in a conversation at the same time.”

Siblings and friends

“It has been tough on (her brother) and early in her recovery he did ask a few times if he was ever going to get his sister back.”

“… there aren’t many teenage girls who have the fortitude, maturity or innate wisdom to stand by a friend when an ED is pushing them away.”

“… for my daughter, a big part of her second half of recovery has been about building new friendships and connecting with people who contribute to her growth and joy.”

What I learned about treatment

“Recovery involves learning and learning leads to growth. (This is) why having a recovery coach specialized in ED recovery has been vital for my daughter, as no one else could provide this type of expertise.”

“My experience shows a person in ED support needs to be specialized in the area, not dabble in it as part of their job description, because ED work is a career path that has chosen them and not the other way around. Having a recovery coach or therapist who has recovered themselves is also a prerequisite in my opinion …”

“I joined a Facebook group set up to help mothers navigate recovery, but within a couple of months I realized it was more harmful than helpful because the group embraced a victim and sympathy mentality which I likened to a “stagnant pond” environment where nothing positive could grow from.”

“Fortunately my daughter’s recovery coach offers her own online support group and this makes a real difference. It is free to attend and has been gold.”

See Our Collection of Eating Disorder Recovery Stories

This is a story about a 13-year-old teenager who developed anorexia and how her family worked to overcome the eating disorder with Family Based Treatment, or FBT. This is an evidence-based treatment for anorexia that is both challenging and effective. Here’s one family’s story of how FBT helped their teenager recover from anorexia:

By Anonymous

My daughter had a brain tumor at age two. It caused morning vomiting through age 6.* She survived due to early intervention. This included craniotomies and physical therapy.

She was diagnosed with social anxiety at age 6. She refused to drink water at school because she did not want to use the bathroom at school. I remember her telling me about a teacher who commented negatively on her snack of a cupcake. She also had a paraeducator telling her that sugar is as addictive as cocaine.

These are some of the memories I have that help me make sense of the anorexia. It seemed to develop in a matter of weeks.

We compiled a list for the doctor:

• Changes in diet (won’t eat whipped cream, butter, regular cheese, ham)
• Cooks, but doesn’t eat what she makes
• Eats really slowly and seems to play with food more than eat. After she eats, it looks like a mess (food all over the place)
• Eats really small portions
• Feels guilty after eating (cries)
• Fascinated by cooking shows and recipes, but doesn’t eat
• Does jumping jacks after eating
• Smells like fingernail polish remover
• Moody and Emotional
• Seems cold and wears big jackets all the time
• Sleeps a lot
• Wants me to take her to the gym all the time
• When she takes off her big sweatshirt, I’m shocked because she’s very thin

My husband and I met with the doctor first. He asked us if we have a scale in the house. We do. He told us to take it out of the house. Once it’s gone, she notices it is missing and I say it’s broken. It has been “broken” ever since.

Visiting the doctor when your teen has anorexia

That night, I tell my daughter that we are going to see the doctor. When I check her phone I find that she has visited a website that tells her how to “cheat the doctor.” I’m devastated. I’m angry. She just got the phone a few weeks ago, and this is what she’s looking up? This is the moment I am certain that my daughter has an eating disorder.

The doctor meets with my daughter and evaluates her. He tells her she needs to gain weight. At home, she spends hours crying. He calls later and says she needs blood work and an EKG. He gets her admitted to the hospital. We feel relief. The children’s hospital doctors tell me that my daughter is very ill. She must be hospitalized for at least 5 days, but maybe a few weeks. She is told she must eat or she will get an NG tube. There is no negotiating or pleading, this is just the way it is.

Our story of using family based treatment for our teen’s anorexia

Anorexia nervosa is a monster and it has a stronghold on my daughter. It also has a 20% mortality rate (often suicide). This is the highest for any mental illness, so I’m scared to death of it taking my daughter’s life.

She’s 13. The best chance of recovery from anorexia is Family Based Treatment, or FBT. This includes intensive meal support, and we parents oversee three meals and three snacks daily. I check for hidden food (sleeves, cheeks, pockets, trash can, etc). I check that food is eaten and swallowed (mouth check before leaving the table).

After leaving the table, she has to sit with the family and play a game, watch TV or do homework. She is not allowed to use the bathroom (for fear of purging or flushing food she somehow hid). We can’t let her go to her room, because she does jumping jacks to compensate for the meal she just ate.

So much sadness

Our daughter is suffering and there is a lot of crying and sadness.

We have to encourage her to eat at a decent pace (ideally less than 30 minutes). She wants to cut her food in tiny pieces. She’ll move it around her plate and let it fall to the floor. We make her eat it at a swift pace. She is not allowed to plate her food and must eat everything on her plate. In fact, everyone at the table has to clean their plate.

We band together as a family, my husband, myself and my 10 year old. We fight the monster (anorexia) that wants to starve my child. My child who has anorexia can not help with grocery shopping or food preparation. I black out the calorie content of any prepared package food I serve to her.

She tells me about low fat alternatives and wants to eat vegan. We do not allow this, but we allow her to choose 3 foods that she can refuse to eat. The food she chooses to reject are tomatoes, bananas and eggs.

Pulling together as a family

Every week, we attend family based therapy. At the beginning of each session my daughter is weighed. If she puts on 1-2 pounds, we parents are applauded, and my daughter cries the rest of the session. If she does not put on weight, she smiles and we work with the counselor to develop new strategies.

I learn that is difficult for an adolescent to put on weight. So I buy high calorie snacks and nutritional drinks to help with the weight gain. The counselor tells us that we cannot only serve “safe” foods (pop-chips, salad, whole wheat pasta with lean chicken). We must also serve “fear” foods (caramel, chocolate, soda pop and pizza). We give her fear foods when we are feeling strong enough to take on the monster. Sometimes I trembled after those meals.

The impact of family based treatment for anorexia

My younger daughter misses eating pizza and ice cream with her older sister. She seems sad as her older sister’s personality changes for the worse. At one time, my younger child told me she wished she could die. I realize it is really important to get her out of the house away from the disease. Trouble is, she doesn’t want to leave. Perhaps she is scared of losing her sister?

What I wish I knew before my teenager developed anorexia

The stress gets to me and I see a counselor for anxiety. I see a medical doctor for anxiety medication and an occupational therapist. I developed Irritable Bowel Syndrome and suffer from frequent back aches.

The only part of my life that is a break from the disease, my job, is something I felt forced to resign from. There were so many appointments (individual counseling, nutrition therapy, family counseling and medical). And my manager felt I wasn’t pulling my share of the weight at work. FMLA would have protected my job during this period of intense caregiving. But before I knew of the illness, I switched jobs. I was still on probation when she was diagnosed.

After eight months of FBT, the family counselor thought it best for the me to send my daughter away for therapy full time. I felt some relief at the thought of a break, but my daughter started gaining weight after we talked about “sending her away”.

Sometimes I find moldy food hidden in slippers or spit in trash cans and I cry. Will the anorexia take my child’s life?

We share very little about the disease with friends, for fear of adding to my daughter’s stress. Our goal is to avoid exposing her to the potential stigma associated with mental illness. We feel very isolated.

The story of recovery from anorexia for our teenager

We sign up to be volunteers at the local food bank. She enjoys volunteering and we make it a routine. She wants to play volleyball, go to the gym, or play softball. As she gains weight, she is allowed to practice softball for an hour a week. Hours are added back based on her recovery.

Eventually, 13 months in, she hits her fear weight and she doesn’t cry. She asks us to buy her candy. The monster seems to be gone.

At a healthy weight

Now it is 17 months later and my daughter is much better. At her last medical visit she was a very healthy weight. Her fear foods are no longer and we don’t supervise every meal. She can play softball everyday after school and she can participate in PE class.

She still has problems making and keeping friends. Recently, when she broke with a good friend, we caught her drinking from our hard alcohol. Now we lock our alcohol in a safe. We have made contact with a counselor at school who would love to help her. She is refusing further counseling, so we decide to limit her freedoms instead.

I cringe at every mention of “clean” or “healthy” food or trendy diets. I just wish we, as a society,  could focus on teaching our children to enjoy food and love their bodies. I’m tired of this anti-obesity campaign. It could kill my child.

References

* A recent study conducted by USC found that pediatric brain tumor patients face increased risk of interpersonal and emotional distress.

• 25% of respondents reported that the patient had trouble making and keeping friends
• 20% reported that the patient feels isolated and alone.

Interpersonal and emotional distress has been correlated with teenagers with eating disorders. So while this child’s childhood illness is not a stand-alone “cause,” it is an important part of this family’s anorexia story.

See Our Collection of Eating Disorder Recovery Stories

by Therese Roeser

I was raised in a home where there seemed to exist a great deal of permission around food.  There was a large variety of food available in our pantry and refrigerator. Friends would flock to our house to eat “sugary” cereal and “junk” food.  In addition, appealing, balanced meals were served on a predictable schedule.

However, my mother was at times on a diet or “watching it.”  When she plated our dinners, she served herself noticeably less food than the rest of us. At lunch, she would sometimes eat “diet” food typical of the 80s: grapefruit, cottage cheese, canned tuna, rye krisp crackers and diet shakes.  One of my older sisters would also diet from time to time. It was not discouraged. My father ate pretty erratically and, after dinner, would spend a lot of time eating snacks while standing in front of our pantry. He had a larger body and believed strongly in fasting.

So there was this idea that young children had permission to be normal eaters and to just exist in their bodies but all bets were off for adults. They needed to control what they ate.

The summer before I began high school, I experienced my first episode of depression and, for the first time, experienced a significant loss of appetite. It felt like a funny blessing…this state, this apathy toward eating, that my family members had been trying to achieve just sort of fell into my lap.  So, I began to hone it by “healthying up” my diet. At the same time, my depressive symptoms began to lift as I became more engrossed in my restriction.

As my weight changed, my size became an important part of my self-esteem. I was becoming a skinny girl! This was something new I could be good at!

My family was not overly concerned. I think that my parents normalized my restrictive behavior as a “phase girls go through” or just normal initiation into womanhood. In my family, as in many, a slender body was admirable and preferred.

My body continued to noticeably change and it became my primary focus. It was apparent to the few friends I had that I was not just dieting. I became reluctant to socialize because I did not want to be pressured to eat or for my behaviors around food to be scrutinized. I grew more irritable and sensitive. I needed my behaviors; I relied on them to assure me of my attractiveness, likeability, and success, essentially my worth as a person. They defined me.

My days became a series of rigid eating and exercise rituals. My skills, passions, and dreams dwindled in favor of my behaviors. My parents vacillated between denial and alarm. My father insisted that I was merely “athletic” and had remarked that it was better for me “to be underweight than the alternative.”  My mother, on the other hand, expressed genuine concern over my body, which was now “clinically” anorexic. She took me to the pediatrician who was dismissive.

On the one hand, I felt that I had safely slipped under the radar. Another part of me, however, desperately wanted someone else to take over and rescue me.

The August following my freshman year in high school, I reached my lowest weight. It was a number much lower than I had ever anticipated reaching. On the one hand, I felt a rush and, on the other, I was terrified by how far this had gone.

My sister confronted me about my behaviors as well as the state of my health. She comforted and reassured me, and she talked with my mom about my eating disorder since I was not ready to do so. Later that month, I began outpatient therapy and nutritional counseling.

Over the course of this initial recovery period, my mother accompanied me to a weekly eating disorders support and psycho-education group for several weeks.  She even took me to listen to a lecture by Joan Jacobs Brumberg.

My family always supported my eating during recovery. However, I wish my parents knew that fatphobia, which continued in our family, was a huge barrier to recovery.

During this recovery period, I began to binge. Biologically and psychologically, this made some real sense. My body and brain were starved. My family, therapist, and dietician were overjoyed that I was eating again. However, I was still trapped by my feelings about weight and food.

I wish my parents had known that an eating disorder was more than a weight-based illness.  After I reached my “target weight,” my treatment stopped. My underlying anxiety and depression were never recognized or treated.

For the next several years, my weight fluctuated greatly and much of my eating remained compulsive albeit at a less severe level. What remained constant and unresolved was the sense that I was deprived and could never get enough. The eating disorder served a larger purpose in my life and now there was a void.

While away at college, I yearned to be “normal.” I hoped to recover the untainted relationships I once had with my body and food before the onset of my disorder. I started a recovery group, and we all believed the solution to our problems lay in being able to change how we viewed and used food or how we felt about our bodies. What we didn’t consider was the why in the equation. Why did we maintain our behaviors? How did they serve us and what did they represent?

During my senior year of college, I sought the help of a therapist and a dietician again. I was no longer clinically ill but I still didn’t exactly feel comfortable in my own skin and eating would, at times, cause me to feel guilt, shame or self-reproach. This period of therapy gave me more stability, and I went on to complete a Masters degree in Social Work.

My first year out of graduate school, I suffered from my second episode of depression. With the help of a psychiatrist over a period of several years, I started to understand more of the “why” in my eating disorder. I discovered that I used my behaviors to manage my depression, stress, and anxiety. When circumstances or emotions became seemingly unmanageable, my eating disorder provided constancy and refuge.

Through therapy, I slowly started to see myself as much more than a jumble of pathology and failures. I came to witness my strength, competence, and value as a human being. I started to trust myself again.

I stayed well through the pregnancies and births of my two children. When my son was diagnosed with autism, I felt terrified, powerless and as though I had failed in life. Once again, I slipped back into some of my old behaviors. I channeled all of my pain and exhaustion into destructive eating patterns. This went on for about 6 months when I began to see a psychologist and registered dietitian that specialized in eating disorders.  

They encouraged me to uncover my faulty thinking and challenge it. They helped me to find my voice again, to state my needs, to ask for help and establish my boundaries.  Mostly, they taught me the incredible value of self-care. I cannot nourish and nurture others if my own well is depleted.

I used to imagine how things might have been different for me if my family was different, if I weren’t so driven or if I wasn’t a woman.  As I began to understand myself more clearly, I accepted that the development of the eating disorder was part of my life history. It is a mental illness that I work to keep in remission. I don’t blame myself for its having existed much like one would not blame oneself for having had cancer or asthma.

In the beginning, the function of the eating disorder was to comfort and soothe myself. It relieved a lot of the stress and anxiety in my life. For me, the eating disorder was a compass giving me direction while bypassing the difficulties of the present. It also gave me a false sense of success. My behaviors became my automatic “go-to” anytime I experienced a difficult emotion and needed to retreat. They were coping mechanisms.

For a long time, I strove to be “cured” because I was so ashamed of ever having had an eating disorder. Learning to see recovery as a process and treat myself more gently and less critically has helped me maintain forward momentum.

The loving support of my husband, my family, and my very closest friends truly help me to remain grounded.  My two children are my main reason to be well. I strive to have energy and a love of life that I can share with them. I have discovered joyful movement in a variety of way: walks, yoga, swimming, dancing and lifting weights. I do not abide by any exercise routine or schedule, though.  I fully embrace intuitive eating. I take medication to treat my mood disorder and I still see a psychiatrist and therapist in addition to my general practitioner. I also make a lot of irreverent and fun artwork.

As a parent, I feel it’s important to eat with your children and enjoy the same foods together.  So my kids see me eating pizza, ice cream, hamburgers, etc. I follow the Ellyn Satter philosophy on eating: parents decide what is served at a meal and the time of the meal while the individual child determines what and how much of each food they will eat.  We also talk about how bodies change as we get older and we all grow at different rates and have unique bodies. One of my favorite books to read is “Amanda’s Big Dream.”

Recovery for me is about trying my best to stay truly engaged in life, all the while learning more about myself.

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You can see Therese Roeser’s recovery artwork on her Instagram account, @healingcrayons

See Our Collection of Eating Disorder Recovery Stories