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Surviving in Two Worlds

By: AJA

I envied you, outside world. Free of an eating disorder. Unaware of the chaos it

can cause.

Your world is so carefree.

Your world is so simple.

Your world had been mine, not so long ago.

But, when my daughter was diagnosed with anorexia, I was thrown into the

eating disorder world.

A foreign and unwanted land.

A world I navigated blindly and often alone.

Initially, I desperately tried to hold on to you, outside world. You were so safe and

so comfortable.

You were all I knew.

But, quickly you started to feel unfamiliar to me.

And I felt lost.

Although, I never lost sight of you.

I saw you, outside world, with your children. And I was jealous.

At the beach, I watched you. You sat so relaxed on your beach towel. Your

children running in and out of the waves.

When it was time to leave, your children begged you for ice cream. You laughed

and you agreed. Your children cheered.

I wanted your moment on the beach to be mine.

I wanted my child to insist on getting ice cream. I wanted to joyfully laugh and

agree to get it.

 

But instead, it was me insisting that she eat the food I placed on her plate. Every

meal. Every snack. Every bite.

There was no cheering. There were often tears.

At the park, I listened to you, outside world. You casually sipped on your iced

Starbucks.

And you poured your heart out to me. You were so nervous about your child and

her sports.

You said, you were worried that your child wouldn’t make the soccer team.

You said, you dreaded the try out day.

You said, it would break you, if she didn’t make the team.

I tried to sound interested and engaged.

But,

I was nervous about getting through every meal with my child. I dreaded bedtime

snack. And it would break me, if we didn’t make it through anorexia.

Over the phone, I talked with you, outside world. You complained about your lazy

child.

You said, your child wouldn’t make her bed and she was sassy.

You said, her room was a mess, and she didn’t do her homework.

You said, you didn’t know how you and your child would survive the teenage

years.

I listened intently, hanging on your every word. Wondering what it must feel like

to have those kinds of worries.

Because,

My child was walking laps around our yard. Her room was spotless.

The eating disorder made her say and do things she didn’t mean.

 

Her schoolwork was always completed to perfection.

And I wasn’t sure how my daughter and I would survive anorexia.

You sent me a text. You had noticed that something was wrong. I appreciated

your kindness, outside world.

In your text you said that you missed my family, and you hadn’t seen us in a

while. You asked if we were ok.

I texted you back. I said we were just busy. I told you we would catch up soon. I

included a heart emoji to seal the deal.

I wanted to protect my daughter’s privacy. You didn’t need to know about the

battle we were fighting at home.

At the grocery store I saw you, outside world. You cornered me in the dairy aisle.

You told me about your vacation to Florida. You talked about your busy life and

Your busy schedule.

I tried to be polite and I tried to listen.

But I was beginning to panic, I had to get home. It was nearly snack time.

I wasn’t sure how to excuse myself from the conversation. So, I lied. I said I had

an appointment and I had to get going.

Because you wouldn’t have understood, if I told you that my child had a feeding

schedule.

I felt so disconnected from you, outside world. We had become so different.

Your schedule revolved around your work. My schedule revolved around meals

and snacks. You took a vacation to Florida. My world became the kitchen table.

I could see all of you, outside world. But it didn’t feel like you could see any of it.

I roamed alone. Completely lost within the eating disorder world.

I was unsure of everything. I wanted to be with you, outside world. But at the

same time, I needed space from you.

 

The eating disorder world was uncharted territory for me. I was learning every

day. And I didn’t know how much or what to share with you.

But,

One day I felt brave. And I did share with you, outside world.

I told you that my daughter was struggling with an eating disorder.

You were so naive in your response. You hurt me. I know you didn’t mean to. But

you did.

You wanted to know what caused the eating disorder. You stated that kids rebel.

You told me not to worry too much about it. You said, she would get over it.

I wasn’t strong enough nor did I have the energy, to correct you.

I wanted to tell you that anorexia happens, its nobody’s fault.

I wanted to tell you that anorexia is a deadly disease, not rebellion.

I wanted to tell you that I had to worry about anorexia, or my daughter would die.

I wanted to tell you that she wouldn’t get over anorexia, not without help.

But instead,

I smiled. I nodded. And I pretended to be reassured by you, outside world.

But,

pretending is exhausting.

And,

I pretended a lot.

Because,

you were everywhere, outside world.

It was exhausting to see you.

 

It was exhausting to act like everything was ok when it wasn’t.

It was exhausting to exist in two worlds.

And,

It was exhausting when I saw you that day at the gas station.

You pulled up next to me to pump gas. I tried to avoid eye contact. I didn’t feel

like small talk. I was debriefing.

I had just sat at the kitchen table for an hour, waiting for my daughter to finish her

bagel.

She threw it on the ground 4 times.

And I picked it up and put it back on her plate 4 times.

She threw herself on the ground kicking and screaming 3 times.

And I picked her up and put her back in her chair 3 times.

She screamed, “I hate you, what kind of mother makes her child do this?”

I turned my heart to ice. So that I could not feel the eating disorder’s words. I

calmly replied:

“I know this is hard, take one more bite. You’re doing great.”

We made it through. She ate the bagel. My husband stayed with her. I escaped

to the gas station, to breathe and collect myself.

And then I saw you. Pumping gas right next to me.

You didn’t notice my effort to avoid you, outside world.

You said hi and you complimented me on my shirt.

You invited me to dinner with a few friends.

You said, it would be so much fun.

 

I politely declined. I couldn’t be gone at mealtime. But you didn’t need to know

that.

I wished I could tell you.

But,

I wished to protect my daughter’s privacy more.

I drove away with a full tank of gas and the realization that my social world had

crumbled, right along with my family’s life and our daughters health.

I felt sorry for myself. And I felt angry at you, outside world. And I felt hate for the

eating disorder world.

I felt selfish and I felt ashamed, for making this about me and my feelings.

Because my daughter was going through Hell, battling an eating disorder.

Every day she was at war with anorexia.

Every minute she was fighting it.

While your child was at a pizza party, my child was struggling to take one bite of

pizza.

While your child was at a slumber party, my child was suffering from insomnia.

While you prepared your child for the new school year, I wondered if my child

would be able to attend school.

While you scolded your child for eating a cookie before dinner, I begged my child

to eat a cookie before dinner.

It was so unfair.

Unfair to my daughter.

Unfair to our family.

Unfair.

 

And because the eating disorder world was so unfair, it made me angry at you,

outside world. You seemed so easy, so fair, and so far away from me.

Often,

I dreamed about you, outside world. I missed you. I missed your carefree and

simple ways. I missed your peaceful dinners and your joy around food.

Sometimes,

I felt betrayed by you, outside world. Because you didn’t understand the eating

disorder world.

But to be fair, how could you understand it? You had never lived in the eating

disorder world. And I shared very little with you.

It felt strange, outside world, the way you continued with your life. You carried on

with your sports, your jobs, your vacations, and everything that was normal.

When,

my family’s life had become anything but normal. My daughter was sick. The

eating disorder wanted her. Our life stopped. So that we could save her.

There were days, I thought we would never make it back to you, outside world.

There were days, I thought we would never make it past breakfast.

There were days, I thought the crying and the meal battles would never end.

There were days, I thought we couldn’t possibly make it through another minute.

But we did.

We made it.

One bite at a time.

One situation at a time.

One minute at a time.

We made it.

 

Maybe, outside world,

Maybe, you thought that me and my family had gone insane.

We celebrated strange things like a meal eaten in under 30 minutes. And a

meal eaten without tears.

We laughed at inappropriate times. Because if we didn’t laugh, we would cry.

We isolated ourselves and created an environment where we could control

almost everything. Because it was easier.

Insane, yes. But being insane, kept us sane.

I wonder what you saw, outside world – when you looked in at us, the eating

disorder world.

Just as I was feeling so different and separate from you, outside world

I bet you were feeling different and separate from me.

You reached out often. Your kindness was appreciated.

And

You tried, outside world. I know you did. You tried to understand, and you meant

well.

Despite me feeling like you didn’t see me, I know that you did. I know it hurt you

to see my family hurt. You tried to make it better, outside world.

You told me to take a break from treatment.

You said, it was exhausting my daughter and it was exhausting my family.

You said, we deserved a day off because it was hard.

Outside world,

You. Were. Right.

It was hard.

 

Tantrums. Food throwing. Hurtful words. Hurtful actions. Suicide watch.

It was hard.

Family therapy. Medical appointments. Blood work. Monitoring her heart.

It was hard.

Watching an eating disorder own my daughter’s mind and her body.

It was hard.

Knowing that my daughter could die.

It was hard.

Wanting to take a break. But knowing that a break would only give the disease

strength.

It was hard.

Living in a separate world from you, outside world.

It was hard.

But losing her would have been harder.

It. Was. Hard.

But. We. Did. It.

We did the hard stuff because there was no alternative. We wanted her to fully

live.

We did the hard stuff because we loved her. And she deserved to be free of the

eating disorder.

It. Was. Hard.

It’s hard to be thrown into an unwanted land, like the eating disorder world. It’s

scary and it’s isolating.

 

But,

Time has passed. Bite by bite, time has passed.

And,

I am finding myself less lost now, outside world.

Because,

I’ve learned the terrain of the eating disorder world and I am learning to navigate

it.

And navigating it is easier now. Because we found a treatment team and a

treatment plan that worked for my daughter and our family.

The support was life saving for us.

The more I learn, the less lost I am. And the more I want to share with you,

outside world.

Because you need to know about the eating disorder world.

Unfortunately,

Other families will be thrown into the eating disorder world. They too, will wander

blindly and lost in a foreign land.

I hope, together we can be their light. And guide them through their darkest

moments.

I hope, together we can help them navigate the eating disorder world and quickly

bring them back to you, outside world.

That is my hope, outside world.

And that is why……

A few weeks ago, when I was with you at the coffee shop, I shared with you.

I shared with you that my daughter is a year into her recovery.

I told you that I was so proud of her.

 

I told you that she is back to her old self!

I told you that she had worked hard, every second of every day. And she did it!

I told you that we still have challenges to over come, but we will do it.

I told you about anorexia.

I told you about the eating disorder world.

And this time when you asked questions, I answered them. Honestly, while still

protecting my daughter’s privacy.

And this time when your facts about eating disorders were mistaken, I taught

you. Gently, so you understood.

You listened to me, outside world. As I poured my heart out, while we causally

sipped our iced coffees.

You listened to me. And you heard me.

You said I was brave. You said I was strong.

I corrected you.

My daughter is brave.

My daughter is strong.

My daughter clawed her way back from the depths of the eating disorder world.

My daughter never lost sight of you.

A year ago, I envied you, outside world.

I thought I would never truly see you again.

But I was wrong.

Thankfully, I was wrong.

 

I saw you, outside world, the other day after school. We were both picking up our

girls.

We talked about the girls’ homework and their dance class.

We both complained about our girls not making their beds and about their messy

rooms.

We joked with each other, wondering if we would survive their teenage years.

We watched our girls come out of the school giggling. Lugging their backpacks

and looking so carefree.

I stood next to you, outside world, and together we listened to our girls talk. They

went on and on about their busy life and their busy schedule.

They were both so full of JOY.

As they finished recapping their day, our girls begged us for an after school

playdate. We agreed.

You said, my daughter could come to your house.

You said, you would stop and get them ice cream on the way home.

Our daughters cheered and we both laughed!

We are making our way back to you, outside world!

And it is so good to see you again!

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14 Comments

  1. Lara Byrne

    Snack by snack we get there. A parallel universe.

    Well done for conveying so many of the emotions involved in supporting our kids to recovery, and the isolation, and the conflict so many of us have in trying to protect our kids privacy, whilst also wanting to raise awareness and support other families who will be affected by this illness. So wonderful to hear of your daughter’s recovery.

    And to spread the news that with good treatment, full recovery is possible.

  2. Katy

    Thank you. This resonated with me and made me well up. I’m so happy to hear your daughter is doing well. My daughter and I are on the brink of rejoining the other world. Currently dipping our toe into the water and it feels so good.

  3. Heidi Gaddes

    Unbelievable read .
    It is hard protecting the ED person’s privacy, waking every day dreading the meal and snack days , watching your child spit at you , shout at you their siblings crying, also scared of the outside world , being late for school as their eldest sibling was on 24/7 watch ,as well as in the house !!

  4. Janet Masson

    This has me in tears as I am watching my beloved daughter and granddaughter suffer under this horrible disease. I was almost there myself so I sort of understand both sides. I pray for this to be over for them/us as in this finally happy story.

  5. Marcel Hochman

    Bless your heart for sharing your pain with us outside world.
    My daughtersent your poem to us to make us understand her unabilility to share what she was going through with her daughter’s anorexia.
    I cried when your daughter and you were back in outside world.
    Thank you. May joy give you a so deserved double helping.

  6. MPH

    You brought me to tears, as my daughter has been battling AN for 16 years and throughout those years the outside world has changed so much, while the ED and isolation has remained constant.
    I am happy for your daughter and family that you have rediscovered a sense or normality and familiarity in your lives. Take care

  7. Jenny

    So heart wrenching to read the words we’re all feeling as mothers. Sometimes you don’t even know you feel it until you see it there in writing. The emotions are spot on – frustration, fear, abandonment, misunderstanding. So thankful to have FEAST and you all to know I’m not alone. It’s so true we feel we shouldn’t share – I know the few times I did I wasn’t sure it was the right thing. Was I going to label her, hold her back, have people treat her differently? Sending much love to everyone who is going through this awful thing.

  8. Amy

    Incredible how accurately you described the experience that so many of us are living. Thank you for putting words to feelings and emotions that I didn’t even consciously recognize prior to reading your piece but that instantly resonated. Although not yet fully back to the outside world ourselves, your writing gives us hope that joy and light will return for our daughter and family.

  9. Patty McLaughlin

    Thank you for sharing what I am feeling. I cried so hard reading this because this is the life of ED. The struggle and endless thoughts of what to do, what is right or wrong, the lack of understanding and the fear, but most of all the courage to fight. I am sending all ED families hugs, because we are not alone.

  10. Nik

    Thank you for sharing. I also was in tears reading this. It is so accurate in the emotions we deal with in the eating disorder world. We are just starting to see a little light into the outside world and I’m hesitant to accept it. Your writing gave me so much hope that we can get there. I also love how you wrote about how brave your daughter is. They are fighting such a battle and are so very brave before, during and after every meal and every snack. Thank you.

  11. NW

    Thank you for sharing. This was so spot on with how we progressed through this horrible disease and “seem” to be on the other side. Such a delicate dance and so incredibly lonely. Thank you

  12. Cindy

    God bless your beautiful, fierce, persevering, sharing, eloquent soul. God bless your brave, strong, fierce, victorious daughter. I have such a profound respect and pride for you. I wonder if you’ll ever exactly know. Well done mama bear. Well done baby bear. You both deserve a beautiful life. You have summited the peak. Enjoy the view.

  13. Diane

    My daughter’s eating disorder began 13 years ago. It was a long journey but she has been well and truly recovered for over 7 years now. Your poem comes as close as anything I’ve ever read to describing our world during those difficult years when she was sick. Thank you for sharing and I’m so happy for you, your daughter and all of your family!

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