First encounter with anorexia

I was first truly introduced to mental illness as a whole when I was a sophomore in high school. I took a basic psychology course that included probably two weeks about psychopathology. I found all of it incredibly fascinating. While going over generalized anxiety and depression, I wondered if I might struggle with them too (but that part is a story for another day). We had an assignment alone or in pairs to explain the diagnoses we studied to the class in some sort of presentation. I didn’t know it at the time, but one of these still is significant looking back.

Two of my classmates pulled up their PowerPoint. In big letters were the words “anorexia nervosa.” I think I had probably heard of eating disorders at that point, but I knew nothing about them. I intently listened in. I don’t recall many of the details now, but one part has stuck with me. There was an animation with a girl looking at her body in the mirror as larger, then zooming out to find she was actually emaciated. I was somewhat shocked by this. I also understood feeling that way about your reflection.

I was born with pectus excavatum, a deformity of the chest wall where the sternum is sunken in. I began to feel self-conscious about it when I was just around 5 years old. It was the first time I ever hated my body. I had surgery to correct it in 8th grade, but it both semi-helped and hurt me. I gained weight very quickly due to less stress on my heart/body post-surgery. My disgust with my body shifted to the weight I had gained. It felt pretty terrible to be forced to buy new clothes when I was the same size for so long.

All of these feelings and the whole PE experience meant I felt connected to the girl in the video. My thoughts weren’t entirely distorted at that point, though. I would consider them pre-ED thought patterns. I disliked my body. That was the case for over half my life and my “normal,” so it didn’t concern me. I wanted to lose the weight I had gained and go back to the comfort of my old number. I probably spent a little more time staring at my reflection than I should have. In my mind, nothing about this was unhealthy or wrong. Most girls I knew would say things negatively about their appearances sometimes. It was completely the norm.

Even as I compared my struggles to someone with anorexia, I never imagined that would be my life in less than a year after seeing the presentation. Sometimes I wonder what it would have been like if I instead took the class junior year. Would I have recognized the red flags then? I actually did take AP psychology which contained a mental illness unit, but that didn’t give me the same shock/connection to anorexia like before. We glazed over the diagnoses. This only increased the belief that I was fine and an eating disorder definitely can’t be something I struggle with.

If I could go back and talk to 15 year old me, I would tell her to pay attention to mental health and well-being, look for help if she needed it, remember what symptoms can show that it’s not all okay, and share about her body image even if it doesn’t seem as severe as the girl in the video. I would give her a hug and tell her she was loved through the silent struggle. I know that none of this could have prevented me from slipping into anorexia, but I think even the awareness would have changed how long I went without treatment. It’s also a little surreal to realize that around 6 years ago I knew pretty much nothing about eating disorders when it’s now taken over much of my life.

Top 30 Anorexia blog

I opened my blog email yesterday to something that’s pretty amazing/unexpected/humbling: my blog has been chosen as one of the top 30 anorexia blogs by Feedspot.

I’m still in a little bit of shock. When I set out to blog three and a half years ago, I never imagined it would grow to where I am today. I’m not one to be concerned with numbers in terms of popularity, but knowing that this blog has reached (and hopefully helped) more people than I ever imagined is pretty great. I’m so thankful for each person who has read, commented on, and liked my posts. I love interacting with others and hearing what you think.

I’m so excited to see where this blog will be in another six months, year, two years, etc. I hope to continue regular posting for a long time to come. I truly have found an incredible amount of joy on my little piece of the web.

If you would like to read the other blogs on this list (which I definitely recommend!), the link is here. I also have posted the badge with link on my sidebar.

Climb on?

I went into my appointment with Dr. C yesterday with just one objective: get approval to start rock climbing.

I was first introduced to climbing last fall via my roommate. We are blessed with a huge rock wall and bouldering area here at Calvin. Around one night a week, all year long, I went climbing. I grew stronger and fell more in love with it. The huge sense of strength and power continued to bring me back. I was able to challenge myself with the continually changing routes. It certainly isn’t easy, especially with Ehlers-Danlos, but I made it work. The minor (and one majorish) injuries were worth it.

Unfortunately, I didn’t get to the wall much this last semester. My eating disorder played a huge part in this. When I wasn’t isolating, I usually felt too weak to climb. I still pushed myself when I probably shouldn’t have. This leached some of the fun away from an activity I enjoyed so much.

I’m not in a perfect or great place now, but I am more than mentally ready to tackle climbing again. I crave another way that I can appreciate my body and have fun with friends. I was relatively optimistic heading into my appointment. Honestly, I shouldn’t have been, not at all. I am better than the end of less fall. I am off medical leave. I am handling the semester thus far. I am not, however, at a healthy enough place to take on such a physically demanding task.

I grew the courage to ask for Dr. C’s approval towards the end of my appointment, to which she answered, “Absolutely not,” in a solemn tone. I immediately questioned why and hoped for a compromise. Her concern is my heart. I am not allowed to belay (hold the hope taught as your partner climbs) because she is afraid I will pass out and put someone else’s life on the line. While not ideal, I could technically still climb but need to have one other person belay my partner. That idea lasted for about two seconds before she gave her reasons why I cannot climb. One is that I would pass out at some point during my climb. Assuming I had an experienced and focused belayer, I would be okay. More serious than this, she believes there is a chance that I could collapse or even have a heart attack. If that were the case there isn’t any guarantee someone would be able to help  or even resuscitate me in time to prevent serious damage. Minor issues with climbing include broken bones (due to possible osteoporosis/penia with my ED), dislocations/subluxations (thanks EDS), and in general injuries related to the way I am inadequately nourishing my body.

I’ll admit, I do understand some of her worries. It isn’t a great idea for me to try this without following my meal plan. If I was restricting that much I probably would be too weak to even hoist myself up the wall. It’s happened before. I don’t agree with most of the heart stuff. I frequently get dizzy and sometimes feel like I’ll pass out. This mainly occurs if I’m going from sitting or lying to standing too fast, or when I am not hydrated. I could easily be careful enough to prevent this. There is no way my heart is “bad” enough to cause me to collapse or worse. I have no special restrictions otherwise for the abnormality. Mainly I just need to ensure I hydrate and feed my body. Easier said than done, but something I would work on the days I climb.

Part of the reason she is so worried about my heart is because she believes I may have Marfan Syndrome. I am missing nearly all of the markers minus my PE, hypermobility, and vision (eg: not tall, no long and skinny limbs/feet/fingers/etc, no mitral valve prolapse or aortic root dilation, none of the facial features, lack of family history). If I did have it there would be an increased risk for multiple heart conditions much more severe than what I am dealing with currently. I still need to wait until I see my pediatric surgeon in a few weeks (more on that soon), but I can almost guarantee he will rule it out. Once that happens I may be able to negotiate with Dr. C again. Side note: I’m looking forward to picking his brain on EDS and hopefully, maybe getting referred to someone who actually gets it.

As much as I disagree and discount her concerns, I will listen and resist rock climbing for now. The tone she used scared me. We have spent two months now talking about my heart and how imperative it is that I start nourishing my body to prevent damage in the future. I can’t easily forget or play my symptoms off as absolutely nothing no matter how hard I try. It isn’t normal for your heart rate to increase 30 bpm when standing and as much or more practicing gentle yoga. I shouldn’t, at 21, be plagued with symptoms, an abnormal echo, and worry. And yet, here I am.

This conversation we had is about far more than just rock climbing. Her goal isn’t for me to increase my food intake so I can have her blessing to get back on the wall. This is about taking care of myself. If for nothing else, I need to repair any of the damage I’ve caused before it gets any worse.

I didn’t get the answer I had hoped for. I don’t agree with some of Dr. C’s reasoning. I am still resistant, making excuses, and defying her (and everyone else’s) requests. I have started to realize the bigger picture here. That’s a step in the right direction, one I don’t want to take, but a step nevertheless. One conversation at a time, I am getting there, even if it means getting motivated about renewing my rock wall privileges.

 

When treatment (and ED) multiplied

Two months ago, I only had therapy every other week.

Just over one month ago, I saw a dietitian weekly and therapy biweekly.

One month ago, I added a doctor to the mix. Around that same time, I switched therapists and began attending one group per week.

Two weeks ago, I attended a couple more groups.

Last week, I had activity therapy, R’s group with snack, art therapy, nutrition and yoga, and another therapy group with R over Monday and Tuesday.

This week, I was placed on medical leave, attended my first two days of IOP, and had to switch dietitians without any prior knowledge or choice.


It has been an absolute whirlwind. I remember thinking at so many points that I didn’t need this next step, I wasn’t sick enough. I argued, deflected, begged, hid the truth, ignored, and did everything to fight hard against any extra treatment.

I can’t fight this anymore. In fact, if I do fight it will end with me being forced to leave school and in residential or inpatient. This is serious. If I continue to follow my eating disorder it’s going to do a lot more than send me to a higher level of care.

Where I’m at now is a crossroad. I know what will happen if I continue with the eating disorder. It’s safe and familiar and easier. I’ll have the control I crave, watch my body shrink down to an “acceptable” size, and be able to cope with everything in a my life (albeit in a rather unhealthy way). On the other hand, recovery is the unknown. I’ve had some glimpses, but going full in is scary. It could mean a full life where I can become the best me: a nurse, wife, friend, mother, and person, all without Ed. The question now is this: do I stay in the familiarity of my eating disorder and fight all forms of treatment or trust in recovery by fighting my eating disorder? I think I need to at least try option #2, because I can always go back to the ED (as I have now) while recovery will only become less attainable as time goes on.

Oh, my heart.

I had expectations going into my appointment with Dr. C last Friday. She would go over the DEXA scan and tell me it was normal. The echo would also be normal. She too anticipated those results and had no worries that it would be different. It was.

“Your bone density turned out within normal. I would like to see it a bit higher, but we’ll keep an eye on it. I wasn’t expecting any abnormalities with your heart.. but I was wrong.”

Cue shock, disbelief, and finally numb/lots of fear. She certainly isn’t a BSer, so I actually had to trust her word.

I’m not going to get into exactly what the echo found, but I’ll give her analogy. If you picture my heart muscle as a trampoline, a larger person will produce a larger bounce with more force for the trampoline to return to shape. If you take a smaller person, it only is pushed in a little and doesn’t require as much effort to get back to shape. My heart is looking like the second instance. It isn’t being forced to give a strong response. Over time, this would weaken and then calcify my heart. *this is very paraphrased

This abnormality is something that just isn’t seen in a young person. She fully believes that my malnutrition is the cause. The starved heart isn’t a healthy one. Adding dehydration to the mix doesn’t bode well either.

For now, this doesn’t have to be permanent. I can work hard in my recovery to nourish my body. If I continue down this road and the heart begins to calcify it will never get back to normal. Currently, I am using hydration to help. Restriction is back full force and it can be hard to get water down too. If I want to give myself the best chance of reversal I will need to eat. That’s pretty terrifying.

I began bawling before I even got out of the building. This can’t be true. I am still so much larger than I had been in other periods of my eating disorder. How could I have done this to myself? While the real Emily has these concerns, Ed’s view is the opposite. He says it isn’t that bad and I don’t truly need to eat or listen to her. My heart is going to be just fine. On the other hand, this also proves that I am sick and doing well in anorexia. (side note that I found interesting: this reminds me of how the serpent tested Eve in the garden way back in genesis)

This whole situation is a mixture of thoughts and emotions. Almost a week later I still can’t decide what to believe or think or feel. I’ve gone through shock, denial, sadness, etc, but not acceptance. Honestly, I probably need to see Dr. C again before any of this will really sink in. For now, I pray that I won’t randomly pass out or anything (as Dr. C warned there is a small chance it could happen) and eat/drink enough..

 

Restriction is…

Unlike my previous Anorexia Is post almost two years ago, this is not planned or edited. This is raw. I am in the pit of restriction and this is going to be an honest picture of what that’s like.

Your therapist, dietitian, and doctor not being able to hide their concern. So much brain fog. Exhaustion that sleep cannot touch. Wasting perfectly good food your mom sent you. Eating the absolute bare minimum. Putting off supplements.Being terrufued if Lies, so many lies all day long. Having to write down an entire notecard of what happened on session because you lose it all within an hour otherwise. Seeing someone lifeless looking back at you in the mirror. Hours of time going by with little memory of what happened. Feeling too weak to even do gentle yoga. Apathy. Watching your grades slip fast. Hating being at home on the weekends because it means eating more/food police. Hiding the truth from everyone. When it hurts to smile or be around others. Ed thoughts every waking moment. Exhilarating, when it comes to the eating disorder. Ignoring your hunger until it isn’t even there, only emptiness. Forgetting to message your mom all day. Putting everything else last. Shutting out everyone. Hiding. Ignoring any signs that you’ve gone too far. Anxiety dominating everything. Freezing no matter how many blankets you have. Sticking to the smallest list of safe foods. Defining your worth by the amount of food you ate that day. Goals shrinking by the day. Denying yourself every food you enjoy. A false sense of strength. Napping for hours on end.Not just about losing weight.  Zoning off constantly. Being at constant war with yourself. Needing to justify every bite of food. When ED behaviors happen on their own. A dying body. Losing the girl underneath this disorder. Not believing those in your treatment team.  Completely miserable.

Alice all over again.

Well it feels like I have just woke up
In a world where down is up
And up is a long way from here
In the big wheels where they keep on turning
They don’t slow down they just keep on learning

Well my name’s not Alice but I know how she felt
When her world started turning into something else

Alice by Lisa Mitchell has been one of my all-time favorite songs since the summer of FV round one (so 3 years). It describes how I’ve felt during many transitions, both good and bad. You can read my post from last fall here.

Once again, I am listening to this song at least 5 times a day (10 times writing this post, oops). I have quickly managed to fall back into the pit that is anorexia. It’s so startling. Sometimes I do feel like I woke up and poof full-blown Ed thoughts and behaviors. This isn’t exactly true, but it’s why I relate so much to the lines “well it feels like I have just woke up in a world where down is up and up is a long way from here.”

A multitude of changes have occurred in a relatively short amount of time. I went from doing nearly 100% of my meal plan in the summer to 1/2 of the reduced meal plan. I’m not always having 3 meals per day. Honestly, I know this is a bad sign. My mind is occupied by disordered thinking all of the time. I lie about anything and everything, mainly as a way to keep my parents out of the loop. Slowly, I lose control of my life by handing it over to my eating disorder.

Down the rabbit hole I go once again… but this time, it’s tempting. I know what I’m getting myself into since I’ve been here before. I have dealt with my problems through restriction, exercise, self-hatred, body checking, etc for years. In that way, embracing Ed thoughts feels much more comfortable. In a disordered way I feel at home. Anorexia is home. How messed up is that?

No matter how stuck I feel, I am not a permanent resident, or at least I don’t have to become one. I do have the power to turn around and climb back out. The Ed thoughts are strong, very strong; however, there is the healthy me still there. She is reaching out, seeking more treatment, and fighting every single day.

I am not alone. My treatment team, although all are new, will be here to bring me up. I have the option for more intensive options if I feel unable to handle this on my own. The few amazing supports I have will always be there. I am not alone even though it seems that way.

I have to decide: is it worse/scarier seeing how I’ve slipped into relapse, or is this false comfort and hope anorexia gives me enough to continue this downward spiral?

 

Right now I feel like Alice and I don’t have to accept this new reality when I am able to turn it around and come out of this stronger.

 

“How do you have an eating disorder?”

It was my first night inpatient at Forest View. I was more than terrified. I stood nervously in the hallway near the nurses station. Why I was standing there I can no longer remember, although it may have been waiting for the 6th, 7th, 8th, or 9th blanket. Maybe I was afraid of being alone in such a scary place. I don’t honestly know because I was completely stuck in the ED, my mind fogged by all of the restriction from the majority of the past year.

Either way, there I was in the hallway, wishing I was anywhere else. I would have rather been at MCC eating in the cafe, back in high school, at work, or stuck in PHP since I would be able to go home then. I knew I was supposed to be there, I knew I wouldn’t do college if not. I knew that this was a chance to stop behaviors for a week and hopefully head into the school year in a better place. Of course, I was wrong about that. After my encounter that night I was so upset that I considered just signing myself out AMA.

A girl around 20 came up to me in a wheelchair. She had announced why she was in the hospital many, many times: she drank bleach with the intent to commit suicide/self harm as well. I had no reason  to judge her. In fact, I never felt anything but compassion and understanding for any other patients. All of them, myself included, were seeking help for mental illness. We had no right to say someone is worse off, that you are better than them, they seem “happy/just fine”, or that there’s no reason for them to be inpatient. Despite these unspoken rules, she did anyways. It hurt me in more ways than she would ever know.

Right away, she told me why she was at Forest View (only the 10th time I’d heard it) then proceeded to ask me, “why are you here, you seem fine?” This worried me right away. I could have lied, maybe I should have. Instead I admitted that I’m suffering from an eating disorder and that I’ve been very bad this whole summer. This primed her for one of the most hurtful comments I had ever received in regards to my ED: “How do you have an eating disorder?” If that wasn’t enough (trust me, it was), she started telling me I was way too large and compared me to another girl who had a BMI in the low teens, which I know because said girl told me in a bragging way :(. She claimed I shouldn’t be here because I’m not *that* bad. Then, she laughed at me and gave me a terrible look. I walked away because I could barely hold the tears in and found nothing else to say that would make her see I wasn’t just a fraud.

I went straight to my room and cried in the comfort (well, not really but it was better than being out in the common room) of my own bed. I couldn’t stop the thoughts that only multiplied following her words. I tried to muffle the sound as much as I could, but the nurse doing rounds heard me anyways and became somewhat concerned. She asked if I was just scared given it was my first night. I shook my head yes so she sat with me for a minute and gave a little pep talk. After she left I knew I should quiet down. I did, and tried my hardest to push her remarks out of my head.

I would love to say that her words haven’t affected me since that day. She questioned the validity of my illness and assumed I shouldn’t be in treatment. I have always dealt with these fears on my own but she only intensified them. I still struggle with that. When I entered residential I was convinced they would tell me I wasn’t really struggling, that nobody would believe me since I wasn’t emaciated and had no physical changes due to my ED. I waited for someone to not take me seriously. Thankfully, that never happened and I was continually supported by everyone. Her comments have also made me hyper-vigilant when I tell others I have anorexia. My automatic expectation is to have a repeat of what happened that night in inpatient. I imagine them saying I’m too fat, too happy, attention-seeking, etc.

I am working past that 2 minute conversation. The most important thing is to know that I am sick. I cannot mull over everyone’s reactions to determining whether I am or not, because in the end, I do have anorexia.

Next time you see or learn of someone with chronic illness, please treat them with dignity. What’s on the outside doesn’t reflect how they truly feel. Any “how do you have ___” questions do nothing but harm.

My story

*Disclaimer: This is not my entire story. Instead I wanted to talk specifically about my eating disorder journey and what its been like for me, (mostly) uncensored.My hope is that this can give insight to what an eating disorder is really like. Because this is going to have lots of details on behaviors and thoughts, there is definitely a trigger warning. I will not be going into weights/bmi/sizes/etc, however. 

The first time I ever felt badly about my body, I was around six years old. I spent the day with some neighbor kids, swimming at the beach and having a great time. We came home and our moms decided to give the girls a quick shower together to get the sand off. One of the girls spoke up, “Ew what’s wrong with your chest?” In that moment I realized I was different. I was born with a sternum deformity called pectus excavatum (PE). Of course, having nothing to compare it to, I never saw my chest as abnormal. That moment, however innocent and seemingly insignificant, was the seed that planted body hate for me.

I can’t remember a time growing up where I wasn’t considered skinny. Adults would always tell me how lucky I was and that I needed to keep the weight off as I grew older. Skinny wasn’t just a compliment to me; it was my identity. At some point I decided I absolutely wasn’t allowed to ever get to a point where people didn’t call me skinny.

There was never a time I was okay with my body. Yes, I felt better about myself when I got the skinny complements. That didn’t fix the negativity. It honestly just made it worse. I received more and more negative comments about my PE as I got older as well. Adding that and the belief that I was nothing without being skinny to an already low self-esteem didn’t work out well for me.

In 8th grade I finally decided to do something about my “disgusting/weird” chest. I went in that December for surgery where they inserted two bars to pop out my sternum into a normal position. I hoped that this would clear up any and all body image thoughts I had. It ended up doing the opposite. My PE was considered very severe. Because of how deep it was, my heart was enlarged and pushed to the side. My lungs were also shrunken. These both were a huge part of the reason I’d stayed so underweight and malnourished all those years. Once my body was in better shape I gained weight – and fast. I couldn’t deal with it. Suddenly I wasn’t skinny but average. No one gave me compliments on my size anymore. I had lost a huge part of my identity, self-worth, and slightly better view of my body in just a few months.

The next few years brought an interim period. I didn’t lose any of the weight I so desperately wished was gone. My body hate never wavered or went away, and really just grew. I hadn’t started using any behaviors yet, but the ED thoughts were there.

The timing around here gets hazy. I’m at the point now where I can’t remember when the switch from unwell thoughts to using behaviors came about. It wasn’t like I woke up one day and decided to become anorexic and boom I was sick.

I had so many bottled up emotions, along with the ever-present self-hatred. My eating disorder started as a way to feel better about myself. If I could just lose that weight I’d hated for years, then I would magically be happier and confident. The main factor, even more than building self-esteem, was harming myself. I felt such strong emotions: guilt, depression, anxiety, perfectionism, hatred, loneliness. By starving myself and running my body ragged I could take care of some of the discomfort I felt. 

It all began innocently. I wanted to lose the unnecessary (in my mind) weight I gained after my surgery. My first goal was just a few pounds. I figured that once I got there I would certainly feel better and just maintain after that. I was clearly wrong.

I started counting calories. I wouldn’t say I was actively restricting quite yet, but I was very hyperaware of everything I put into my mouth. My view and reason behind exercising took a 180. I played soccer from eight years old up until fall of junior year. It had always been 100% about fun. Not once did I wonder how many calories I was burning or how much I needed to work out in a day or week. I practiced and played games to the best of my ability. During my last season, however, that all changed. I began pushing myself harder than before and would also workout outside of practice and games. If I ate “badly” during the day, I work myself past the point of exhaustion that night at practice. Soccer wasn’t all that fun anymore.

In addition to the extra exercise, I mildly restricted. Within a few months those coveted few pounds were shed. I was on top of the world. I had this great sense of pride that I couldn’t get anywhere else. After so many years of hating myself, completely hating my body, and feeling hopeless about any of this ever changing, it did change. I loved it.

I continued with the mild restriction and use of exercise to lose (at this point maintain) weight. The stress of starting early college my junior year was catching up with me. I could never perform well enough to satisfy my own perfectionistic standards. This only fueled my depression, anxiety, and other negative thoughts. There was, in my mind, just one thing I could control: my weight.

I set calorie limits for myself each day. I began running on the treadmill. It was a huge relief being able to focus on anything other than my inadequacies. To me, this was the best way to cope.

My weight fluctuated and lowered a little bit more, but not a whole ton. By the summer before my senior year I actually gained some back. The stress of school was gone which helped stop some of the negative thoughts I was having. I definitely wasn’t following a very healthy eating and exercise pattern at this point, but it also wasn’t so bad. I exercised to burn calories, but only felt the compulsive need to after eating “too much” food. None of the depression, anxiety, or self-hatred lessened here. In fact, they all continued to grow. 

Fall of senior year was technically the true beginning of my eating disorder, but I don’t really like that way of viewing it. I was sick before this. I already had a distorted view of myself, disordered eating habits, tons of ED thoughts, spent hours in front of the mirror body checking, and used exercise in a compulsive way. It all just happened to get worse at that time. 

The fall was a crazy adjustment. I now had classes at a career tech center in allied health, on campus at the community college, and a few in my high school. To say I was overwhelmed and stressed is an understatement. That coupled with the fact that I had gained back nearly all of my weight since first trying to lose led to eating disorder thoughts and behaviors like I’d never had before. It wasn’t until then that my parents noticed something was wrong. I hid it very well previously and continued to shield them from the truth as it all progressed.

My new purpose in life was to take back control of my weight. I was more carefully counting calories than I had before. Not only did the amount of food I was allowed shrink, but the variety diminished as well. I exclusively ran on the treadmill as my form of exercise. I would set a calorie goal for each time I got on. This always ended up in me pushing myself much further than my body wanted me to. At the end of each run I would continue well past my goal. Every single second, every calorie mattered. This all did the trick when it came to my weight. I was now slightly under what my previous low was post-surgery. I felt good, but not great. Every single time I looked in the mirror I saw fat. I body checked often and cried as I saw my body expand throughout the day. I felt the fat growing on me every single bite of food. My body was shrinking but the body dysmorphia was not.

My parents now knew something was going on. When I was at home, they watched a little more closely. This contributed to me restricting more at school, but that was also driven by a new ED-fueled fear. I no longer was able to eat where anyone, namely strangers, was watching me. I had lunch some days in a little cyber cafe on campus. There were a total of five seats, all facing a window, that I had to sit in if I was going to eat anything. Even then, fear paralyzed me. I was bringing a very small amount of food anyways, but I usually only consumed about half of what I packed for myself. 

I was falling into anorexia. My daily routine was becoming more disordered. I would skip breakfast, eat maybe half of my lunch (usually only fruit and veggies), take a few extra laps when I had time in college, eat a decent yet impossibly large dinner, and then work it off on the treadmill. It was all paying off. I lost almost enough weight to put me “below normal.” I was ecstatic. Meals became a battle in which the ever diminishing healthy part of me lost. My clothes no longer fit as well. People were complimenting me again. I felt on top of the world. The restriction and exercise became my new highs. I weighed myself at least ten times a day, and let the change determine how much I could eat or had to work off. I would see my size drop in the mirror after exercise and then gain and grow flabbier for each bite of food I consumed. All I could hear all day long was the ED voice. Concentrating on anything else, even my beloved schoolwork, was impossible.

After the first of the year my current therapist (seen for depression, anxiety, and self-harm) recommended I switch to someone specialized in eating disorders. In a sick way I was satisfied with that, but also very much in denial. My parents knew for sure that this was a problem and they supported the move. My new therapist helped to an extent I suppose, but not enough to keep me from falling deeper down the dark pit that is an eating disorder.

I honestly don’t know how I survived the last trimester of senior year. My cognitive ability was almost nonexistent, so the fact that I still graduated with a gold cord astonishes me. I exercised every single day. My runs became longer and more intense. I had my “little black book” where I would record every single calorie consumed and burned off. I won’t go into specifics of how I managed it but the nets ranged from negative to in the hundreds. I lost more weight, enough that my dress for graduation was already baggy on me even though I had just bought it. I still looked in the mirror and saw fat everywhere. There were days I would cry over an apple. I was miserable but the euphoria of restriction and compulsive exercise coupled with an overpowering ED voice shielded me from realizing it.

The eating disorder consumed me entirely. I was past the point of only wanting to lose a portion of the weight gained post-surgery. I wanted it all gone, and fast. My goal now became the admittingly unhealthy weight I was before I had the correction done. I ignored the fact that I was now an adult, not a 14 year old, and believed I would be more than fine. Once I had the number set in my head nothing would stop me. That summer was rough. My parents desperately tried anything they could to get me to eat. It became a constant power struggle, me against them. I found new ways to restrict and exercise without their knowledge. I would do anything, even hiding food in my napkin, pockets, or bra. I stayed at the table longer than anyone else, picking at my food and then tossing the rest. Even when my mom and dad caught on, I had no shame or remorse. They began to have me eat out at mainly fast food restaurants quite often, which only made me exercise and restrict more after and increased the thoughts. All the while, I continued to hate myself more. Nothing made me look in the mirror and actually like what I was seeing. The only time I could actually appreciate my body at all is after a long run or period of restriction. The physical effects of my illness seemed to grow each day. My hair was coming out in chunks. I injured myself all the time. I was cold in the middle of summer. My face grew gaunt and I looked dead. I was always dizzy and passed out frequently. My already frequent bruising was now much worse. I was weaker and more fatigued than I ever had been. My fingernails were now always purple due to decreased circulation.

In the end of June I went for 5 days to Disneyworld for HOSA nationals. I restricted more during this time than ever before since my mom and dad were no longer watching. Walking the park also burned a very large amount of calories without me ever having to step on the treadmill. I knew I must have freaked out the other girls and my teacher but I didn’t care. I have little memory of the trip because I was very malnourished. Competing in my events was so hard that I could barely manage. I stepped off the plane even closer to my end goal. A week later I had my wisdom teeth taken out. The ED snatched this opportunity up. I was in plenty of pain for around a week which meant no exercise. I more than compensated by using the pain to refuse nearly all food. This went on for two weeks as I milked the whole “my mouth hurts” excuse. I had hit my lowest weight and was mentally in a very dark place. I couldn’t have gotten out of it on my own if I wanted to.  I distinctly remember my mom coming into the bathroom and crying over how much my hips stuck out. Soon after she called Forest View.

I spent the last month of summer where everyone dreams of being, in partial hospitalization at a mental hospital. I was there 8:30-3:30 five days a week. My first day I was forced to say it out loud. I was in such denial. I couldn’t be sick. I certainly wasn’t sick enough to be there. I said it though, through tears, “I struggle with anorexia.” I was so stuck in my ways. I refused to finish any meals my first two weeks. I didn’t even touch any ensures when they “offered” me one after every refusal. I would come home each day, not follow my meal plan and exercise to make up for the “insane” amount of calories I was forced to consume. I lied to get away with the running, telling my parents that it was okay and my doctor approved. I cried every single day. I didn’t take treatment seriously until the second week. The doctor told me flat out that if I were inpatient I would have a feeding tube. I had lost weight, which really excited me at first. He then gave me a few days to turn this around or I would be forced inpatient. That scared me because it could also lead to him saying I couldn’t go to college that fall. After that meeting I started to really try. I actually did get plenty out of the ED groups and met some very sweet women there. I felt like I was a part of something and that I wasn’t alone in my struggles. I slowly accepted my diagnosis and the necessity of recovery. I left PHP the week before classes began and I truly felt I had it all taken care of. I had a reason to continue recovery (school) and a new therapist. Plus, my parents would be on me, so how could it be that bad?

Those first few months were pretty decent. I still attempted to follow my meal plan. I wasn’t exercising nearly as much. I loved my new therapist and felt like I was really getting work done there. More importantly, I became a youth leader which gave me a valid reason to recover. Thinking about the girls helped me push through some tough spots. Despite all that pushed me towards recovery, I began to slip at the end of the fall semester. I was over-stressed and felt out of control. This time I really had to hide my restriction and exercise, since my parents were still so worried about me. I eventually was “strongly persuaded” to start eating again if I wanted to go to youth camp in January. I had a short-term reason to recover and I did my best to go for it once again. This lead to refeeding symptoms that I had to deal with completely on my own. I went to camp and shortly after began to grow more into my sickness. 

I could be a youth leader without recovery. I could do school without recovery. Why did I need to recover? Granted, neither of those things I could give my all in or do well, but in my mind this made sense. So I just continued to pretend I was in recovery when I needed to be and act out on the disorder the rest of the time. I struggled in silence. My parents knew absolutely nothing because I was a pro at hiding it. I told only a few friends and my therapist the truth. By the beginning of summer I was basically at the point of needing treatment again, which I refused. We had NTS camp in June and I was not missing it for anything. The determination to go gave me enough motivation to do slightly better. I skated by and entered camp a complete mess. Looking back, I most definitely shouldn’t have gone. I couldn’t even take care of myself that week, let alone be there for five girls. It was another amazing time lost to my eating disorder. I have nothing but regret now. My girls deserved better and I should have been in treatment.

The one good thing that came out of NTS was motivation to recover (again). I was on a spiritual high and I felt I could totally do it. I was right for maybe a week. I worked ~30 hours or more per week as a housekeeper which was wonderful for my eating disorder. Not only was I burning calories all the time, it also meant many meals and snacks away from my parents’ watchful eyes. I barely ate a thing during all of those long shifts. It ended up really hurting my work performance. The front desk would ask me to do something and five minutes later I would completely forget what it was. I even had a hard time remembering the sequence to cleaning bathrooms even though I had known it for months. I was also exhausted, weak, and passed out multiple times, mainly when cleaning the showers there. As the summer ended, my therapist pleaded with me to go back into treatment. I refused and refused but by the second half of August I agreed, surprising my parents more than anything. They were ultimately very supportive after the initial shock. I was so tired of everything. I didn’t have enough energy to refuse it. I wanted to be able to go to Calvin in a few weeks. I had to go or I truly felt I would die, so off to Forest View I went. Oddly enough, my reason to pursue recovery was also a huge cause of me getting so stressed and deep into the ED again in the first place.

The week inpatient was a complete joke and bandaid. I ate 100% of all meals and snacks simply out of fear that I would be tubed or forced to quit college. It wasn’t easy, given how much I was restricting prior, but I managed. I even convinced myself that this would be different. I was going away to college and that was such a huge thing that I couldn’t blow it with this stupid eating disorder stuff. So, once again, school became the sole motivation for recovery.

I had about four days at home before moving into the dorms. I spent them soaking up quality family time. That didn’t give me too much time to worry. I was so sure I would have this under control. The excitement of college well overpowered any uncertainties. I somewhat got used to practicing my meal plan on the outside, packed up, and left for school.

New home, new dining halls, new therapist, new dietitian, new people, new classes. All of the newness distracted me for a while. I followed my meal plan for the most part that first week or two. I had a dietitian and therapy appointment weekly. I felt really on top of everything. I even told a few people at school so that I could have some support and accountability.

Everything caught up with me really quickly. I honestly wasn’t prepared for college. I was in no way solid enough in my recovery to handle the stressors, so I just didn’t. Being thrust into a new world with constant comments from others on weight, size, diets, and calories was a harsh new reaity. I once again found myself cutting out foods. This time around it began with severely limiting my variety. I literally had the same exactly lunch every day for the entirety of my first semester. My dinner would consist of a small portion of chicken, veggies, and fruit. I skipped out on snacks. Yoga became a part of my daily routine, but I would only allow myself to do weight-loss videos. I used a calorie counting app to help me stick to limits I set. My parents were worried about me constantly, but it was so easy to hide how I was really doing. I only saw them on weekends, so I would simply allow myself just enough food for them not to freak out then go back to restriction. By the end of September I was well on my way back to where I had been a month before.

The very last weekend in September, just a few hours into dorm retreat, I ran collided with a guy during capture the flag and broke my nose, suffered a concussion, and fractured my orbital socket. I ended up needing surgery and missed 3.5 weeks of school. During this time I was home, which I guess was good for my recovery since I was forced to eat and keep from exercising. I was suffering so much mentally though, and I knew that the second I got the chance to I would go straight back to the ED. The amount of stress I was under trying to make my work up was unreal. Instead of fueling my body, I continued to starve and abuse it. I couldn’t deal with my size compared to everyone else on campus or what I used to be. I gave up counting calories and just resorting to eating almost exclusively fruit, vegetables, and chicken. I was still doing the weight loss yoga. My grades slipped lower than I’d ever experienced in my entire academic career.

By November I had lost a significant amount of weight, worrying my dietitian and therapist. ED thoughts were stronger than ever before. I was sicker than I ever was previously, yet I was within the healthy BMI range. Because of this I was in complete denial and refused to let up on my goal of shedding pounds to reach my goal weight once again. At our appointment the first week of November, my therapist told me I had to go get a medical check-up and bloodwork or she would start the process of forcing me to leave school. Panic set in instantly and I headed to health services. My labs and everything were generally okay, much to my surprise. Even so, this was a wakeup call and moment of clarity. I saw a 0% chance that I could do this on my own. The healthy part of me knew I needed treatment. I wasn’t going to make it through the semester without being forced into treatment, so why not go in voluntary instead? I was also terrified that if I didn’t get help now I could end up dying from this disease. That weekend I went home and told my parents everything. I blindsided them and I truly felt bad for that, unlike all the other times I numbed the guilt out. At the same time I was so confused and worried myself that all I wanted was comfort and support. We made a pretty solid decision that Sunday for me to take a medical leave. Deciding to enter treatment and lost school was by far the hardest thing I’ve ever done. At that point I had no solid plans, a quickly shrinking amount of time to have in treatment, and I hadn’t even told my friends, treatment team, or school. 

I cried so much during my appointment with my therapist the next day. I skipped all of my classes since I really couldn’t deal with any of it and I would be leaving soon anyways. She kept repeating how proud of me to make this decision for my health. I made an appointment with student services the next day and a follow up with her the day after that. The reality of it all shocked me. I gained courage that day to tell a few people close to me what was about to happen. They were supportive but also really sad. My meeting with student services was sobering. I was again praised for making the best decision for me, signed a few papers, was given a move out date, and sent out with a “good luck” and information for when I got back. My RD and I had a short talk later that day and I found out everything I needed to do in regards to moving out of the dorms. My parents decided the next day would be it, only 9 days after I was warned about the possibility of forced leave. I met with my therapist that morning and cried more than I ever have in session. Her pride in me helped so much, even as we both struggled through tears. I gave her a hug and went on my way into the unknown. Soon after, we packed up every possession in my room, said goodbye to my friends, and began the trip home.

I bawled the entire ride home and for the whole rest of the day. I also was attempting to research as many treatment centers as possible. I really preferred a smaller center, although at that point I was desperate enough to go almost anywhere. I had no luck for two days. Every place was full, had too long of a wait time, or didn’t accept my insurance. On Friday I had all but given up and decided to try one of the places my therapist gave me the name of, Center for Discovery. I sent an email about it and got a phone call within an hour. The intake woman calmed most of my fears by telling me I could come within a week. It was finally real. The program was exactly what I had hoped for, small (only two other girls were there at the time with a max of 6 residential and 2 PHP), in a home environment, individualized, with some freedoms as you moved up levels, and the added bonus of being in the warm SoCal sun. The hugest blessing came when I found out that 1. my insurance would cover 100% and 2. CFD was going to pay for my very expensive, last minute plane ticket. I was filled with anxiety but also peace. I was finally going to get real help. I had a solid chance of recovering for real. After years in sickness and finally realizing how miserable it was, I cried for joy over this opportunity. I flew out on November 19th, two days after my 20th birthday and not even a week after my first contact with CFD.

I knew from the beginning that going to residential was going to change me, but I don’t think I ever anticipated or imagined the amount of progress I actually made. Its actually very hard to be too concise about everything I learned in treatment. I made a promise to myself that I was going to avoid all supplementation and unfinished meals. I didn’t want it to be like Forest View. I needed it to not be. I was challenged more in my time there than ever. It certainly isn’t easy challenging behaviors and thought patterns you’ve had for so many years. The first week broke me in many ways. I wasn’t moved up a treatment or exercise level and I was extremely defeated. How could I have made so much progress (n my mind) yet stay stagnant according to my treatment team? I fell into a depression and lost much faith in myself. I wondered if I could really do this and whether my hard work even meant anything. Not being able to go on the outing that weekend on one of the girls last days was one of the worst moments the entire time I was at CFD. By the next week, however, my attitude changed. I realized that I couldn’t rely on others to determine whether I was successful or not. I was the one who needed to recognize my own progress, so I did. I began a list of things I accomplished each week that I still do today. Its been very healing for me. I put every ounce of myself into recovery. I not only completed assignments and goals set by the treatment team, but went above and beyond enough to receive the nickname of Challenge Queen. I wore it with pride. Each day in treatment brought new successes, although not without hard times and setbacks. I was fine with the imperfection for the first time in my life. I cannot ever be expected to perfectly recovery. It just isn’t possible. As the weeks went on I led many groups, went on outings and passes, supported and helped the other girls, took walks in the mornings to see Napoleon the majestic cat, challenged myself with food, worked on my autobiography and timeline, learned and practiced coping skills, practiced yoga in a healthy way, decided to stay an extra week to best benefit my recovery, and much more. Explaining all I learned from CFD without writing an entire novel is hard. Easily the most important realization from residential is that I want recovery for me. I am not working at this for outside motivation. I finally believe that I deserve it wholeheartedly and I am doing the best I can to stick to that each and every day. After hardest and most rewarding 5.5 weeks of my life, I headed home.

I can’t sit here and talk about how amazing things have been since coming home without acknowledging the struggles. There have been many setbacks, hard days, return of strong ED thoughts, some lying, plenty of body checking (if only the real world had little mirror access like at CFD!), terrible body image, meals and snacks where I barely followed my meal plan enough. Being at school where I was so sick before is especially hard. At the same time, these two months have been better than I could ever imagine. I am so thankful for recovery. I am becoming myself again and I love discovering who she is without being so consumed by darkness. This is the healthiest relationship I’ve ever had with myself. I am learning to love my imperfections. The joy I feel now cannot begin to compare to the false euphoria and trickery of the ED. 

The hardship having an eating disorder is something that I, at one point, found very hard to deal with. My cognitive function has not improved even with refeeding. I’ve lost many relationships and hurt the ones that survived through it all. I spent years of my life not living at all. I broke my parents’ and friends’ hearts over and over. Nearly three years of schooling were almost ruined. My faith in God suffered and I am only beginning to repair it. My body has lasting scars, not only in the form of stretch marks. Vacations, camp, Disneyworld, college, and every day consumed by the ED. My depression and anxiety, body image, self-hatred, and hopelessness grew exponentially. Even with the extent of the damage anorexia has had on my life, I am actually thankful for it in a way. I’ve learned more about myself and become more resilient. I have met amazing people and formed great friendships along the way. My new passion of mental health and eating disorder awareness never would have come if I wasn’t ever sick. I’ve grown stronger. I no longer ask “why me” and instead accept that this all has happened for a reason. 

I’ve discovered, over time and especially during wall work at residential, what things led up to my eating disorder. There are many specific events but I really feel that a few negative core beliefs were the biggest factor. What I came up with is that I’ve always felt inadequate and unworthy, even back to some of my earliest memories. It really makes sense that someone believing those things so strongly would turn to an eating disorder for comfort. It gave me a purpose to live and one way I could be proud of myself. Knowing this now is helping me fight back and know what situations and emotions will trigger me the most. I am also trying to use affirmations and faith in God to pull me through dark times since it fights against those negative beliefs.

I am not going to be Emily the anorexic who dies from her disorder. I won’t define myself as anorexic at all. I am so much more than my eating disorder! My story is not over yet and this will one day not be the defining part of it, just a chapter. Its been a big part of my life but I have faith that won’t be the case forever. I will continually put in the hard work for recovery and treat myself with compassion and kindness. Recovery isn’t the easy choice by any mean, but it is absolutely the best one.

I’m not the “me” that I started with

My friends say my eyes are brighter

I’m not the “me” that I started with

I’m freer, and I’m wiser, and I’m stronger

We are crushed and created

We are melted and made

We are broken and built up, in the very same way

What I thought I could handle

What I thought I could take

What I thought would destroy me leaves me stronger in its wake

Crushed and Created – Caitlyn Smith

My BRAIN is sick.

My brain is sick. My brain is sick! God dammit, my BRAIN is sick!!! 

I want to scream this from the mountaintops. Maybe that could stop some of the nonsense people spew at me and my fellow recovery warriors day in and day out.

I am weight restored. I have followed my meal plan since the day I entered treatment. I am out of residential. I no longer exercise compulsively. I am not physically sick enough to need a feeding tube, be in the hospital, require urgent care, have daily blood draws.

The above makes others believe I am doing wonderfully, amazingly, fantastically awesome with all the rainbows, unicorns, and glitter. They see me and just know instantly that my eating disorder must be – poof! – gone. They compliment me on how great I look, boast how proud of me they are. They walk away assured they’re right. After a few weeks or months they forget the eating disorder ever existed in the first place.

What they can’t see, and sometimes won’t see, is that anorexia is still here. In fact, it may be here for a very long time. Some effects will last my whole life. It is not making itself known in my behaviors and physical appearance anymore, but my mind is in its control regardless.

The obsession, body dysmorphia, irrational thoughts, they all began long before I ever restricted my first time. In fact, by the time I actually started using behaviors I was fully in its grips. Once the weight loss became dramatic, when others finally noticed, I’d been dealing with the mental effects of anorexia for a very long time. This is because my body was never sick. I wasn’t simply behaving in a maladaptive way or following some extreme diet. No, my brain is and always was, the part of me that is sick.

Please, before you take a look at me, or anyone recovering form an eating disorder, remember that. Remember that outward appearance and actions can never explain what is on the inside. Remember that the brain is the last thing to heal and the first to become damaged in the first place. Before assuming everything must be okay now realize that it probably isn’t and we are still fighting against the thoughts every single day.