To the Eating Disorder That Followed Me Through High School

105
105
0

To the feet that clenched the scale in glory with every pound that melted away.

To the reflection in the mirror that silently screamed “worthless,” compelling me to believe beauty was a mere 6 stone on the scale.

To the warped voice inside my head once so powerful, drowning out all family cries to “just eat.”

I have all but 11 words for you: this is not my obituary we’re writing today; it’s yours.

I’ll admit, I’m not proud I surrendered three years of my life as a frail puppet under your mastered hand. I’m even more embarrassed that at 67 pounds, my own mother spoon fed me mashed potatoes at a public restaurant, having refused to eat them myself. But as sick and manipulative as your ways were, I still would like to thank you.

Thank you, you may ask? For what? Bradycardia plaguing my heart? How about gaining 50 pounds in recovery? I’m sure she loved that, you thought. I’m not going to lie, every fork I’ve picked up, every calorie I’ve consumed and every ounce of every pound I’ve gained has been terrifying and sometimes still is. But each day I choose recovery, I find more strength from within and manage to further loosen the strings you use to toy with my life.

To be honest, I don’t understand you, but I know myself enough that I meant it the first time I quivered to my father, “I want to get better.” I vividly remember his fearful suspicion of my weight loss, forcing me to hover on the scale for what he didn’t realize was the fifth time that day. I thought after rigorous therapy, family support and copious amounts of food, you would disappear entirely.

Yet here I am on my 18th birthday (weight stable for practically a year), still slightly anxious to eat a slice of carrot cake with my family. I know you don’t like carrot cake, but I do and I ate every bite, so ha! That’s the thing I learned about triumph.

There is no such thing as “recovered,” just like there is no such thing as perfect. I recognize recovery will be a lifelong process I must endure and with every bite, I’m attempting to take back control of my own body and inner thoughts.

But you of all people know that is easier said than done. Because the second I even consider tossing my fully packed lunch in the school garbage can, your voice comes raging in with full force, tempting me to do it. You got a tight grip on my strings again in my graduating year and managed to knot them with anxiety and depression.

Sitting in my vice principal’s office for the first time in four years, you made me feel terrified to even go to class. “Karley, your teachers are concerned.” I know. “If you don’t hand in your assignments, you can’t graduate with your peers.” I know. “Please talk to me so I can help you. This isn’t like you.” In that moment, I realized my VP was right.

We are not the same person. I can’t meet your expectations to be sickly thin, and I don’t want to. I want you to know I completed five assignments within one week and walked across that stage to receive my high school diploma. Maybe my marks weren’t as high as I had planned, but for once I was truly proud of myself.

And so, I think it’s best we say goodbye. I’m not your puppet anymore. I’m taking what I learned from you and starting a new chapter of my life at university next year. I don’t know what challenges will arise on my plate, but I have faith in me to pull through, and sometimes that is enough.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? Check out our Submit a Story page for more about our submission guidelines.

105
105
0
JOIN THE CONVERSATION

Why I Needed to Give Up to Recover From Anorexia

127
127
4

My disorder was apparent by the time I was 9 years old.

For almost 30 years I lived, functioned and kind of met my responsibilities in a weakened physical and mental state; I was, in application, a slave to anorexia. I raised three children, worked and went to school; all things I should have been able to feel good about and enjoy. My reality however, was that I felt and believed I was worthless, a burden of epic proportion — physically and figuratively. It is common with eating disorders to have a very skewed perception of one’s body. I literally saw a much larger person in the mirror. That was and sometimes is, reality to me. Starvation damages and dulls brain function. All of my perceptions were skewed, my perception of my body was the most skewed, which is perfectly logical with an eating disorder. Anorexia is not a disease of “wanting to be thin,” it is an addiction to control and a wild goose chase after perfection, the perfection of complete and disciplined control; maximum order.

I never thought “if I were thin enough then I would be beautiful.” Anorexia is about perfectionism, a lack of internalized sovereignty or autonomy and exercising control over one’s body through deprivation. I fed myself what I believed I was worthy of, which was almost nothing. I wanted to feel good enough, not thin enough. I survived some experiences in early childhood that caused me to believe that I was broken, ruined, if you will. I was filled with shame I couldn’t process at my young age. I also had a huge need to feel like I could refuse imposition. I wanted to disappear and be invisible. If you don’t see me you won’t hurt me, right? I thought if I didn’t eat then I would “grow in reverse…”

That’s how it all started. 

I went to treatment seeking help for my eating disorder at 37 years old. I checked in to the center full of trepidation, guilt over the financial burden of extended inpatient treatment and saturated with shame. On that day I was the culmination of my eating disorder, every mistake I had ever made, the disappointment I believed my family felt and all of the self -loathing my shame and guilt could conjure. I had failed at life. I viewed treatment as giving up, quitting, admitting I was incapable of living life. I was just 37, how had I failed so successfully by my age?

The truth is, giving up was exactly what I needed to do. Except I was not quitting — I was surrendering.

I was incapable of living while using my my own judgement and instincts. I was literally killing myself. I am going to avoid any measurements, as that can be very triggering. Let’s just say that I was severely underweight and controlled by my eating disorder.

I believe my resignation was actually a good place to start. The self-loathing and shame were unnecessary and a bit dramatic, yet the willingness to do what my treatment team asked of me (actually, it was desperation mixed with apathy) was precisely what I needed. I needed to learn I could not trust my own thinking. My brain was malfunctioning and I would have to learn to trust others to guide me into recovery, or die. I am one of the fortunates, I am anorexic and I am in recovery. I had family that cared enough to push me toward treatment. There are plenty of, in fact too many people, women and men, girls and boys who die from eating disorders. The internal battle is often too great to fight inside an emaciated body, with a brain driven toward slow suicide. All eating disorders share the emotional impetus of self-loathing and worthlessness. I know at least one person with every type of eating disorder classified to date and each of us had these feelings to some degree. There are plenty of other emotions mixed with these, we all shared shame and guilt, though

During my months in treatment, sharing, struggling and crying with people who all have different disorders, I learned an important lesson. We all felt the same feelings of shame, guilt and self-loathing. Eating disorders may present in a variety of behaviors which become classified as different disorders, and yet the reality is that the psychological abyss is similar regardless of the presented, disordered, behavior. No one I know with an eating disorder intended the physical effects, none of us calculated for the consequences and chose to proceed toward our devastation. Each of us, in fact, used a distorted relationship with food to comfort ourselves and to grapple with our emotions.

I was released from treatment in December of 2011 and have been in recovery since then. I would like to be able to say I’m well, perfect and haven’t had any problems with anorexia. The truth is I struggle not every day, but often. Recovery is a lifelong process that requires mindfulness and determination. Sometimes it sucks,  sometimes I don’t want to be anorexic and sometimes I don’t meet my meal plan for the day. Those days are fewer and farther between now. I have a desire to improve my life and to enjoy it — and I believe my life will continue to get better with continued effort. Treatment saved my life. Now that my eating disorder isn’t running the show I get to create meaning and love in the spaces that used to be filled self-loathing and apathy. I have support from my treatment sisters and they are irreplaceable in my life! Having support from others with eating disorders helps me to get through the toughest times and helps me remember to be grateful for today; it’s so much better than five years ago.

My life isn’t perfect, I’m not perfect — and that’s exactly how it’s supposed to be.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

The Mighty is asking the following: What was the moment that made you realize it was time to face your mental illness? What was your next step? Check out our Submit a Story page for more about our submission guidelines.

127
127
4
TOPICS
JOIN THE CONVERSATION

When Your Child Has to Travel Thousands of Miles for Eating Disorder Treatment

829
829
8

I hit a brick wall today, not literally, but figuratively. It was a mental brick wall some may liken to a mental meltdown. Today, marked the 70th day my 15-year-old son has been thousands of miles away from home in a residential treatment facility in Denver for a relapse from his eating disorder. Unfortunately, for adolescent males the options for residential treatment programs are slim. My husband and I sent him back to the center which he had stayed in two years prior. I would like to say it was a tough choice, but when faced with seeing your child stare life or death in the face, there really isn’t a choice to be made at all.

It seems strange to me today of all days I had my breakdown. Overall, I had been coping relatively well with his absence. I had settled into the uncomfortable quiet a house minus one teenage boy starts to possess. The reality of the impact an eating disorder has on a family hit me in the face like a gale force wind.

The day kicked off with us being told by my son’s doctor our insurance company has decided to no longer pay for his residential treatment. They feel based on their medical criteria, he is ready for the next step. As I hear these words I am infuriated, mad and worried. It is so frustrating to think they know what’s in the best interest of my son. The insurance company has decided it is time for him to transition or step down into a 12-hour day, partial, outpatient, treatment program. While this step will be necessary for his ultimate success, taking him out of residential programming now, when he is so close to the finish line, could be catastrophic.

This is the world we live when insurance is paying the bill. This phenomenon is not limited to eating disorders. It can be seen with any major illness. When it is your child it becomes scary. Unconscionable decisions such as this get made every day. To think they would come this far and pay close to $100,000 dollars and then not be willing to pay for the last 12 days of treatment is inconceivable. They would rather take the risk and cut off the funding, betting against the medical professional’s advice. Yet, if your child is released too soon, the revolving door syndrome begins when another costly relapse can occur. Ultimately, they could pay double for a patient’s treatment. Unfortunately, that is not how the actuaries calculate their costs and how the insurance companies make their decisions. They have boxes they check and criteria they use that can defy logic.

For a family, having a child away in residential treatment is stressful, isolating and scary. You do it however, because it literally can be a matter of life or death for an patient with anorexia. In our case, our son collapsed on his bedroom floor starving, dehydrated with low blood pressure. He was dying of his disease right before our eyes. We had been doing everything we could to prevent this very episode but, an eating disorder is sneaky and it hides in ways you cannot imagine. In our case our son hid his illness in plain sight. We rushed him to a children’s hospital for nutritional refeeding and stabilization. That is when the insurance clock began ticking. It’s maddening to think a family would endure all that time with a child away from their home and when the hour glass runs out, the system cuts them off. The insurance company paying the tab tells a family with the patient is done. What is most alarming is the toll it takes on the patient. To not allow them to continue their programing seems inhumane.

As I comprehend all of this, my mind shifts and I begin to face the stark reality the world has gone on without my son in it. His friends are living carefree and moving ahead in their lives as he is fighting for his. I got a message today that it was time to pre-register for his 2016/2017 classes for his sophomore year in high school. The school has been amazing and he is being tutored daily in the facility where he resides. Suddenly, I fear he will be so far behind only to never catch up. It is a common concern you hear from other parents. The mind of a healing, weight restoring, child with anorexia is not as clear and logical to focus on studies compared to when they are in a healthy state. The thought of holding him back and repeating ninth grade is sobering.

Finally, as if all of that is not enough for my brain to comprehend, I layer on the worry of the toll this eating disorder is taking on my family. We have two sons. My oldest is a senior in high school. This past Christmas was one that he will always remember as a sad time when his brother was away and his parents left him to go see his brother in Denver. We wanted him to join us to see his brother, but it was too sad for him and he felt staying back with family was a safer choice. It was just too difficult to see his brother in treatment at Christmas. For choices such as this, there are no right or wrong answers. We simply respected his decision and tried to make his Christmas special, regardless of the pervasive sadness looming in our home.

As a parent, your job is to be the peacemaker and try and find the happiness when there is that void. Days are spent pretending, ensuring life goes on as usual for the other family members while quietly and secretly you weep and pray your life as you know it will eventually return. The mundane, day-to-day living in a home during this time is lonely and arduous. The family must exist. Life must go on as you mark time and count days until your loved one is to return again.

By the end of day 70, I have regained composure and I come back to reality. What has sustained me this far on our journey comes back to the forefront of my mind. I get back to reminding myself about the gratitude I have. I know that may sound strange to some, but is sustains me during this tough period. I am grateful in spite of our challenges. Even after 70 hard days, the gift at the end is that my precious son will be weight restored and healthy again.

Yes, I hit the brick wall today, but I came out on the other side still fighting. My next milestone is to count out the next 56 days. That is how many days are left until I get my child home in good health and in the recovery process again. I cannot to hug him and tell him how proud of him I am and how much I love him. Until that time…

The Mighty is asking the following: Parents of children with mental illnesses – tell us a story about working within the mental health system. What barriers of treatment have you experienced? What’s a change in the system that could help your child? Check out our Submit a Story page for more about our submission guidelines.

829
829
8
TOPICS
,
JOIN THE CONVERSATION

To the One Who Made Me Feel Like I Was Worth More Than My Anorexia

97
97
0

You have heard me say these very words countless times — but thank you. Thank you for being the lifeline I didn’t know I needed, and for reminding me of my worth when I was certain I had nothing to show for it.

The day I sat across from you sharing my unfortunate news, I couldn’t help but think I was getting myself into something I shouldn’t. By this point, I only knew I had an eating disorder for about four days, and you were someone I knew was a strong adult figure I could confide in.

I wasn’t diagnosed, but I knew from one moment the week before I had been starving my body and mind for the last two and a half months. Stress, body image and friend problems — I told you they all landed me in this place. “So, what does this mean for you,” you asked me, and I knew right away the answer was anorexia.

Having daily conversations about my intake and my plans moving forward with you was all I thought I needed to get the job done. However, I learned during Thanksgiving break I couldn’t just make myself eat and be OK with it. It was the sickest cycle I had gotten into yet.

You gave me little choice but to let others know what was going on. I silently hated you for this from time to time, but as the months went on, I knew you only made me tell them to aid in my own recovery. I regretted opening up about my disorder at least once a week, hated myself more often than that and struggled to idealize recovery every single day.

Early on, you could see the fear in my eyes when I talked about my eating disorder. You told me it was OK to be scared, but to just keep breathing and somehow, we would deal with the aftermath. You promised me I was strong enough to recover, reminding me you loved me and needed me to get better. You told me you couldn’t go to my funeral if something happened to me as a result of my disorder, because you had been to too many funerals for kids. I didn’t want to be the thin girl in a coffin, but I wasn’t so sure I wanted recovery for most of the days that passed by.

One day in June you sat across from me, listening to me tell you I couldn’t believe in my own worth, and figured I would succumb to my anorexia eventually. I was convinced I couldn’t do it — couldn’t eat, couldn’t handle myself and couldn’t just recover. This is the day you reminded me of my worth.

I looked you in the eyes, listening to the words pour out telling me I was “pretty f**king amazing,” “pretty OK,” and “f**king phenomenal.” These were words I never associated with myself. I was so used to telling you how much I hated myself, reminding you I wasn’t worth your time and you could walk away at any time.

Like I said, I have thanked you a lot. You’ve been that lifeline, that person to call or text when things just weren’t right anymore. You’ve been the one to engrain in my mind I will not be alone, and the strength I have inside of me is enough to manage the pain. You’ve taught me important lessons, like taking one step (or bite) at a time, forgiving myself and keeping my chin as high as I could.

I used to ask so frequently why you would help me, but as time went on, I realized it wasn’t important. You wanted me to get better, most days more than I wanted it myself. I was often unsure if I truly wanted recovery, and if I did want it, how would I do it? You were the one who told me I needed to do it, whether I wanted it or not. And most recently, telling me to pretend recovery was a Nike commercial, to “just do it.”

I often wondered how to thank you in a way that was more than a simple “thank you” or “I love you” for the magnitude of love, care and help you provided me. You weren’t just a person who told me to “get better.” You weren’t just the one who watched from the sidelines, you stepped in immediately — telling me you would do anything you could to help me. You weren’t just the one who pushed me to get treatment, but the one who sat with me during visitor’s hours, listening to me cry about how hard it was to be an inpatient.

Out of everyone, you were the one who made me feel like I was worth more than my anorexia.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

97
97
0
TOPICS
JOIN THE CONVERSATION

To the Anorexia That Overtook My Mom

89
89
2

Dear anorexia,

You probably don’t remember me, but I met you through my mom. I was a teenager when you came into our home and changed everything. You started because she had a medical condition that made her cut back on food, but later you became a full force of control. My mom used you as a way of coping with raising four teenage kids and the stresses from her marriage and her job. I bet you remember her.

I watched as her face and body became more skeletal. I remember after a while it got so terribly bad, I had to beg my mom to eat just one bite a day of anything I could find. Her energy was so low, but when she looked in the mirror she was still too fat for you.

You had your way with her when I went to Florida on a short three day trip with my next door neighbors. I was 16. For three days I wasn’t there to force her to eat so you had field day with her. At times causing her to be so weak she woke up on the living room floor wondering how she got there.

Lucky for you everyone was away so no one knew.

The Sunday morning after I got back, we went to church. After helping mom to the second row where we always sat, my sisters and I went to talk to friends before the sermon started. The preacher’s wife, a grim women who no one would dare mess with, came up to us and asked us to come get our mother. She was apparently so delirious from the lack of food she was acting like a drunk woman. My sisters and I looked at each other with complete confusion because my mother did not drink. We went in and got her, but as we were walking out of the church she passed out and hit her head. Were you laughing then? Three teenagers looking at their mom with absolute fear? But you weren’t done yet.

The hit caused a lot of damage. We had to dress her, feed her and shower her. She began having horrible seizers where only her tips of her fingers and the tips of her toes touched the bed. Were you happy then?

Maybe it made you happy when she forgot my birthday, or when she spoke like a small child. “I’m cold,” she would say to me when I was getting her dressed, putting on whatever warm clothes I could find. Then she would remark in childhood wonderment, “Ooh you don’t know how to match…I’m telling.” Did you know my sisters and I missed over 29 days in school in just a couple of months so we could take care of her? My dad worked more to pay the bills, and possibly to avoid seeing his soulmate in your control.

For years I felt guilty for not being there for her. For going to Florida with my neighbors.

For years, the first thing I would ask my mom was what she ate that day. Not anymore. I’m done playing your game. Guess what? She’s better now. It may have taken longer than we would have liked, but we are through with you. We helped her, but she did the work. Now, you can’t have her. You are not welcome in our home, you are not welcome again in my life. If you show your ugly face again, I will keep fighting you until there’s nothing left.

Get lost,

A child of anorexia

89
89
2
JOIN THE CONVERSATION

The Truth About People With Anorexia

8k
8k
10

I would like you all to do something for me.

Imagine waking up in the morning feeling so weak it takes you a full 15 minutes to sit up on the edge of your bed, and another 15 minutes to stand up without falling to the floor. Your whole body trembles with weakness as you pull on your leggings which, despite being from the children’s section in Zara, still hang around your knees. You pull your hair into a ponytail, feeling most of it fall out into your dry, flaking hands, and you drown yourself in your winter coat and scarf, despite the fact that it is the middle of August. You use all of your remaining strength to walk slowly out into the street, unsure whether your legs are steady enough to hold you up, only to be pointed out and whispered about from every direction. Whichever way you turn, passersby are shaking their heads at you and making comments that increase your already existent guilt and self-hatred. Strangers telling you how awful you look. How vain you are. How selfish you are. How there are children starving elsewhere in the world.

Since recently reading an article in which a woman described an anorexia sufferer as “selfish,” “dishonest” and “attention seeking,” I’ve been unable to shake it from my mind. After three years of fearing this about myself throughout my own struggles with anorexia, I have finally learned to look at my eating disorder in a different way — I now understand and have been helped to understand it is an illness that I did not choose. Nobody chooses to be sick. Would you approach somebody with crutches in the street and shake your head at them, telling them they only have a bandage on their leg for attention? I could sit here and give you all some spiel about how anorexia isn’t a sly, selfish illness, but I would be lying. I have lost count of how many times I have lied to my family, friends and healthcare professionals over the past three years. How many times I told them I had already eaten dinner elsewhere. How many times I hid my food in my pockets and threw it away. How many times I told them everything was fine and I didn’t need help. I am all too aware that anorexia is a devious illness.

But I would like to tell you all the truth about the people behind this illness. Last year, I was told by a specialist that those who suffer from anorexia are usually the people who care more about the happiness of others than themselves. They are much more sensitive from a young age, are always very in tune with the feelings of others and have a strong drive to want everyone around them to be happy. So much so, they try to get rid of any negativity, which often leads to perfectionism. When I was given this information I just nodded in false agreement, unable to accept what I had just been told because I could not shake off the guilt of what I was putting my loved ones through, and the crushing belief that I was a terrible, selfish person.

Now, two inpatient admissions and two day patient admissions later I can look back at the people I have met over the past two years, both in London and in Newcastle, and believe every word of what I was told. Never in my life have I met such caring, compassionate and gracious individuals who have looked out for each other every single day, despite being up against so much themselves. I will forever be unable to describe the feeling when someone reaches across the table for your hand as you cry into your cereal, because they can almost hear the screaming inside your head. When the girl in the room next door sits in your bedroom with you until 2 a.m., despite being exhausted herself, because you feel like your whole world is falling apart. When the girl across the corridor pushes a card or a letter under your door, or leaves a bunch of sunflowers on your bed because she knows you’ve had a bad day. When a patient stays at the table with you into the night because you just can’t manage your supper, even though everyone else has finished and gone to bed. When somebody silently stands with you at the window of the ward as you watch your family set off on the 300-mile journey home after spending the weekend with you. I can’t explain the feeling inside. The feeling that you are not alone, and that you are all helping each other to fight the same battle every single day. The feeling of love, of belonging and of acceptance. A mutual understanding, where just one look or one hug can speak more than a thousand words.

It goes without saying it’s impossible to forget two groups of people who have had such a lasting impression on me. Who have been so strong, brave and encouraging to be around, and who have the most amazing ability to make light and find fun in the darkest of days. Who reminded me of how it feels to laugh so much that you cry. Who have been like a family to me over the past two years. Who have been so affectionate, so loving and so accepting. Who have taught me that it’s OK to have feelings and it’s OK to show them. That it’s OK to have fears and its OK to be less than perfect. That it’s OK to struggle sometimes, but its never OK to give up. Spending almost a year in a hospital over 300 miles away from home at the most vulnerable point in your life, and not knowing when you will next see your family, is the most shattering experience. There were times when it felt so unbearable I thought I couldn’t cope. There were times when I spent my entire day crying over cards and photographs. But on both wards I have been on, I have been surrounded by the most wonderful people who have reminded me that life is a beautiful thing, and that it is absolutely worth fighting for.

So, next time you hear of somebody who’s suffering from an eating disorder, remember my words:

We are not selfish, sly and manipulative people who want to look like the models in magazines. We have not chosen to live like this. We try so hard to be faultless and not cause anybody distress or upset, that we end up keeping our problems to ourselves and using dangerous coping mechanisms to deal with them. I can’t tell you the ins and outs of everybody’s eating disorder, and I certainly can’t explain why anorexia is so fussy when choosing the most undeserving people to lure into its trap, but I can tell you that, if the rest of the world looked beyond the tired body and sad eyes of these people, they would see true beauty.

And lastly, if any of you amazing people from Avalon or 31A are reading this, I could never thank you enough for all you have done. I know how it feels to have anorexia strip you of everything in your life, and make you feel that you are only good at starving your body and hurting those around you, but I hope by writing this I have shown you how truly wonderful you all are and how many real qualities you have. Your courage and positivity continues to astound and inspire me. You have brightened up my darkest days and have reminded me of the life I am recovering for, and for that I am eternally grateful.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

8k
8k
10
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.