Let me start today’s post off by saying first - this is a long post and a long video. So I hope you stick around. Second, I’m not doing this to “infatuate” over my eating disorders. I’m doing these posts because we need to educate our world on the realities of disordered eating. Not today, or tomorrow but yesterday. This need has been present for a long time, and our society is not opening their eyes to the destruction it is causing people. I showed disordered eating symptoms when I was young, but due to my own fear and lack of knowledge it was never seen. It didn’t help that both of my eating disorders were not recognized by the DSM-5 until recently.
If you think you are struggling with Disordered Eating or know someone who may be, please seek help. Ask questions. Educate yourself, your friends and your community. Your life may depend on it. I hope in sharing my story at least one person realizes they, or someone they love, may need help.
Every person affected by eating disorders and disordered eating will present differently. No ONE thing makes a doctor, psychologist, psychiatrist or parent say, “YUP! That’s it. You have an eating disorder!” It is often a combination of mental, emotional and physical symptoms that lead to an unhealthy relationship with food and one’s body.
My eating disorders were fed by so many things, but I want to start at the beginning to show how small things can lead to sometimes devastating consequences. I remember vividly the first time I felt like I was taking up too much space and made to feel inferior. I was 6 or 7 years old and in the 1st grade. A student behind me said, “what a whale…!” when I went up to do something at the board in class. This was the beginning of my own negative self talk and a chronic negative relationship with my own body.
Years of my life from early elementary school through middle school were spent struggling with body image, fueled by not being able to find clothes that were for someone my age, that fit my body, as I had hit puberty younger than the average girl. I was also a competitive softball player, adding to what I thought was a strange physique. Nothing about my body seemed normal. I was tall, muscular, and OVERWEIGHT according to doctors and family (I will touch on the doctors and medical portion of my experiences tomorrow).
Not understanding my own body led to me feeling guilty about the food I put into it. The earliest memory I have of hiding food was mid-elementary school. I craved granola bars, PopTarts, and cookies, so I would eat them. In secret. Then hide the evidence under my bed or dresser to avoid consequences from those around me. There was so much shame surrounding food in it all for me. In time, small but problematic disordered habits formed. I would eat food in a specific order (not even realizing I was doing it). For example: if our dinner one night was salad, meatloaf and mashed potatoes - I would eat them in exactly that order. Fully finishing one item before moving on to the next. Even if I was full - I made sure to finish what was on my plate and always save my favorite or most satisfying item for last.
Another disordered habit I formed during these years was eating items, individual specific items, in a specific way. For example: when eating say toast, I would eat the outside rim (the crust) then move inwards - again saving the best part for last. I was suddenly desiring food in a way I never had before, I wanted to savor meals because I didn’t have to hide eating them - but I still wanted to enjoy the food. My family found my habits strange, but never thought it was anything serious, and that is not their fault. One of the reasons I’m sharing so much about my experiences is to bring light to how disordered eating can start as small things and change into way more.
Soon after the disordered eating began, my obsession with my body started. Weight, clothing size, and how I presented myself to the world consumed me. I weighed often, always fought to fit into small clothes, and began wearing makeup and doing my hair to “hide” behind it. Dieting and weight loss were critical. I went to the gym and worked out at softball, tried more diets than I can count and nothing worked. I would later learn this was partially due to a medical condition I have (again I’ll cover this more tomorrow) but all of it was disheartening. Speaking of diet culture I will cover it more fully on Thursday, but I was attached to it at such a young age. Measuring and counting were just a part of my life and it was damaging. My failure to lose weight despite dieting made me think I was the problem and was to blame. But, I’ve since learned that this is just not the case.
As time went on and I grew up, my body was less strange and abnormal to me, but my view of it only got worse. I saw myself only as a failure who couldn’t lose weight, but rather continued to gain it. In high school, softball ramped up and I realized that my skill was improving. I grew stronger and truly excelled at my sport - but my confidence was short lived. Soon enough, my high school coach brought me back to my reality. He would never play me despite being one of the better hitters on our team, when I pushed to find out why it was clear my weight, size and speed around the bases outweighed my skill at the plate. An older male, who truly meant no harm, broke me in many ways. All I wanted was to be successful, but on his teams, I would never be.
Throughout those years in high school my mental health back slid for many reasons - education, relationships, bullying… these stories are for another time, but the impact they had were crucial to this story. I was depressed and anxious constantly, but became so good at hiding behind a mask of smiles, sarcasms, and laughter that many of my friends and family never knew. I was self-harming, bingeing and putting myself in other dangerous situations. Luckily, I ended up speaking with a therapist in a round-a-bout way. She was the one who would eventually diagnose me with major clinical depression, social anxiety and generalized anxiety disorder. Although I was speaking with someone, things didn’t really improve for me. I could not wait to leave, despite and amazing and supportive friend group - high school felt like a prison.
Before I could leave for college - my mom finally saw how severe my symptoms had become in for my depression and anxiety. Her and my dad decided that if I wanted to go away for school that I would have to see a psychiatrist beforehand. So, that’s what I did. During my first session I would be put on two different medications to try and control things. They worked, but caused me to feel neutral all the time, my emotions just didn’t come through. But - I had done what my parents asked, I was on my medications and ready to go. So, I left.
I drove seven hours west on I-70 to attend the University of Missouri. It felt like the absolute best choice for me, and for so many reasons it was. But, those next four years would continue to push my eating disorder, and other mental health problems to new heights. I was unsupervised for the first time in my life. I could eat whenever, wherever, and however much I wanted. Despite finding the love of my life, an amazing group of friends, and pursuing my degree I was still struggling. My weight began to soar as my time playing softball ended and mandatory workouts died. I chose friendships and relationships over working out, enjoying all foods over restricting diets and in some ways I was stronger for that. But, lurking in the shadows my habits were still there, thriving. Hiding had become second nature - no one knew what I was doing in the dark other than my slew of therapists I saw through the Student Health Center. Mostly this time was spent discussing my medications, changing them, trying to find the best concoction, but one fateful afternoon that all changed.
The current therapist I was seeing (they changed every six months…) had recently diagnosed me with Post-Traumatic Stress Disorder, and we were discussing that and other things. She was helping me break down my week then suddenly stopped me mid-sentence and said, “I think you may have an eating disorder.”
I was startled and caught off guard. How could I have an eating disorder? I was overweight and never restricted food or threw up after eating. How could I have another diagnosis? Aren't five mental illnesses enough?! But now, another.
But she explained that this didn’t matter, it wasn’t anorexia or bulimia (even though I do have restriction tendencies). It was called Binge Eating Disorder - and to say I hit the criteria for it was an understatement.
My therapist suggested I reach out to a local place known as McCallum Place to see if they had any outpatient programs I could utilize. I was scared and anxious about another new diagnosis, so I waited and waited. Six weeks later I called finally, they said to stop by on one morning or an afternoon this week to meet the therapist who ran the outpatient groups. So a week or so later I did. I drove out there and pulled in, walked to the door. And there it was. A closed sign. McCallum Place in Columbia had closed abruptly with no real explanation. I was in tears and ran back to my car - I clearly wasn’t supposed to seek treatment so I didn’t try again.
Life continued, I kept seeing a therapist, they kept changing. I slowly found a mix of medications that didn’t make me feel like a zombie but helped me not fall into dark lows and succeed in school. I utilized the Disability Center on campus to help mediate between professors and worked on myself. For awhile there was improvement. Weight didn’t change really - I was finally able to say I was happy for awhile. Graduation came and went, adulthood was here. Zach and I moved to Kansas City and this is where the story really turns.
It was clear at this point to me that I had been struggling with disordered eating for a long time. I researched what I could online and tried to make sense of this diagnosis but nothing really helped. Post-graduation depression was more invasive than I thought possible, loneliness set in as I was physically separated from friends and Zach as he traveled for work, and during that time my eating disorder thrived. It took over my life and controlled me. I would learn that not only was I dealing with Binge Eating Disorder, but also a different and scary eating disorder known as Night Eating Syndrome. I will explain more about this in a moment. Below is a excerpt from a blog I wrote regarding this time in my life to read the whole thing click here:
This was an exhilarating experience, happening so quickly - and with it came worsened anxiety. By October, my body was suffering more so than I would ever had expected. I couldn't understand why every part of me was deteriorating: my mind, my body, and my soul. I began searching for answers and realized it wasn't that hard, my mental illnesses had taken over.
With this realization I began searching for treatment options, and luckily I found somewhere that treatment was possible. But, the reality of my life was also very present in the back of my mind. Many of those close to me, well really everyone close to me, was unaware of my eating disorder and the severity of it's impact on my life. Disordered eating is so hard to identify because society has normalized these behaviors.
It was time for me to tell those closest to me that I was going on Short Term Disability from my job, and entering into a Partial Hospitalization Program at an Eating Disorder Clinic here in Kansas City. Those conversations were especially difficult for me to process. I thrive on being in charge and comfortable in situations - and at this point in my life, I was out of control and very uncomfortable with myself and my life. I celebrated Thanksgiving with my family here in Kansas City, and then entered treatment that next Tuesday.
The first day of treatment I was a mess. It was so overwhelming to give over all forms of control. Treatment for me included many things such as: no phones, a schedule for all activities, locked bathrooms, weigh ins every day, but mostly it was regimented, controlled days. I met with a psychiatrist, a nurse, a therapist and a dietitian every week. We were with direct care staff at all times, who sat with us during meals and during breaks. I was in my program from the end of November through the beginning of January.
To explain further, Night Eating Syndrome is known for those who have trouble sleeping but also consume large amounts of food at night, often high caloric food. For me, that is all true, but I would do it all in this disassociated state that I called a black out. I would eat like this, drive to get different food, and hide everything, all before crawling back into bed. Waking up the next morning I had no idea what happened unless I found the wrapped buried in the trash. This coupled with my now normalized binge eating during the day was damaging.
Treatment was a privilege and helped me tremendously. I learned so much about myself that really opened my eyes to the destruction I was causing my body. But, my story didn’t stop there. No one really is ever fully cured of their eating disorders, and the same goes for me. Over the last two years since leaving treatment, I have done a lot of work to get to where I am. I visit a therapist as often as I can and have recently gone back to my meal plan devised in treatment to help me. I’m happy to say that I have not experienced a “black out” since leaving treatment, but still struggle with the other pieces of Night Eating Syndrome. While I was in treatment I was put on a medication called Topamax to help with my binge cravings, it is originally used as an anti-seizure medication which for me was great at the time because I had experienced multiple absence seizures during treatment. But, it was related to a medication reaction and over time the Topamax not only lost its effectiveness, the side effects were difficult. I was nauseous all the time, even the smell of food made me sick.
Over the years I had heard there was an alternative, but it was expensive because no generic existed yet. I spoke to my therapist and primary care doctor and we all decided together it would be best to switch anyway. This medication has really helped me feel in control and in charge again of my body. The reality is - I have good days, more good than bad. But the bad days still exist. There are days where getting out of bed is a chore, but each day I make a choice to fight this eating disorder and keep pushing towards my best self.
Today, I’m a Youth Director, substitute teacher, loving wife, pet parent, advocate… and also someone with, say it with me now, six mental illnesses. But they do not define me. They are a part of me, but I define myself.
If you made it all the way through this, thank you. Thank you for taking the time to learn about me - but also learn how these disorders can start with small changes and acts of behavior. Please if you have any questions for me or want to know anything - I’m a mostly open book, there are a few parts of my story I don’t share but 95% of my life is.
Tomorrow I will be discussing the medical community and how it can sometimes make eating disorders worse (even if they are trying to help) and how it relates to dieting.
Thursday I will be chatting further about diet culture and how that feeds the fat stigma.
Thanks for being here, you’re amazing.