Category: Eating Disorders

Eating Disorder Awareness Week:What Recovery Actually Feels Like

I open my eyes from a mediocre night’s rest, roll over and grab my phone. I know I should go back to sleep or meditate or stretch or do something productive, but I’m a human being who sometimes checks her phone too much. I instantly start scrolling and am reminded right away when I see photos with long captions posted like NEDA week is a religious holiday.

It’s eating disorder awareness week. All of my friends that are also maintaining a recovery are posting happy pictures of themselves, before and after photos, and confident selfies. This is the week we talk about how difficult our struggle was, how sick we were, and how far we have come. This is the week we post pictures with our significant others and express gratitude for all those who supported us on this gruesome journey.

I debate whether or not I want to share a photo of myself, but my “before” photos are painful to look at and my after photos are far and few because I hate taking photographs of myself. I’m not a different person, I’m still me. I’ve maintained a healthy weight for a while now. But the truth is it’s just too hard to look at myself. My perception of beauty is distorted, my body dysmorphia leaves me feeling ashamed, and really my eating disorder just feeds on the wrong kind of attention. My life is the best it has been in a long time; I am the healthiest I’ve been in a long time. It is still and will always be hard. Eating is not as hard. Feeling okay in this body is hard. Accepting where I am in my life is hard. I sometimes feel cheated and like I lost time. I know I am making up for it, but I will never be 19 or 20 or 21 again. I will never be 14 or 15 or 16 or 17 or 18 again. Those are all years I lost to anorexia. And I feel intense anger and frustration that I am now playing catch-up on my life. Being in a healthy body is… invalidating. Because despite how invasive my thoughts are, I am perceived as generally doing well. “It’s not a big deal.” “I’m okay now.” I’m “staying strong”.

Don’t get me wrong, recovery really is all that it’s cracked out to be. I have a life, I have friends, I have goals, I can move my body, I’m generally happy and able to focus. But there is still a large part of me that is very sad. And when life is difficult and there is no anorexia to fall back into I’m forced to face life’s demons. I feel things deeply…. And I wish I didn’t. Because in those moments I miss the false safety starving myself gave me from reality. 2021 was a slew of deaths, grief, heartbreak, and more grief. And life will always throw curveballs. When you’re recovering from an eating disorder not only do you have to deal with what life is throwing at you but you have to deal with the intense urge to not fall back into your self destructive safety net. I didn’t want to post a picture of myself today. Partially because I don’t like to see myself in photographs and also because the reality is that this illness is glamorized and I’m not here to glamorize something that nearly killed me. This blog is at least real. It’s a little vulnerable but a photo of myself smiling and saying I’ve conquered my demons is, well… a massive lie. I’ve worked on myself. I’ve come far. And yes, I’m totally okay. But it’s not easy, and when you cross that big scary bridge in your life you then reach a point where you need to deal with the consequences of the YEARS of self destruction. The osteoporosis, the osteopenia, the infertility, the stomach issues and food sensitivities, the brain damage, the liver problems, the psychological trauma that you basically bestowed upon yourself, and then the guilt you carry for basically traumatizing your whole damn family. And all the unresolved “food feelings”, insecurities, and issues with your self concept that held you down for years. You have to deal with all that.

I always thought that sitting in that hospital bed and understanding that my destined fate of eating meals and gaining weight back to health was the scariest thing I could ever go through. I thought that eating a granola bar and not being able to walk it off right after was the most painful thing I would have to experience. News flash, IT’S NOT. It really felt like it though.

Eating is hard and to some extent you might always feel like it’s hard. But what’s really hard is maintaining your health while trying to piece your life back together while also trying to be a normal human while also engaging in relationships and being hurt by those relationships while also experiencing close friends dying while also trying to finish school while also juggling two jobs so you can make money. It is hard to hold yourself together when everything in your life is going wrong. But I know that I have to because eventually things will go right. Eventually I’ll feel like it was worth it. Today I don’t. Today I miss being sick. Today I envy the lives of everyone who seems like they have gotten it together since meeting in treatment while also maintaining a hot appearance on social media. It sounds vain, and it totally is. But I totally envy them and the confidence they’ve built in themselves and their lives, I envy how they can seemingly share it effortlessly with the world. It is hard to feel ashamed of your own. Especially when in retrospect, I know I have climbed mountains from where I came.

And that is honestly how it feels to be in recovery from an eating disorder. It’s overwhelming and sometimes I just want the safety of nothingness.

The Reality of My Eating Disorder (It’s Not That Glamorous)

The older I get the more I realize how little the people around me understand the disease I struggle with on a day to day basis. Social media platforms like TikTok have become the new 2012 Tumblr, where we glorify eating disorders, depression, and other mental illnesses.

The frustration I feel when people minimize or joke about my struggle is indescribable. So often I hear “I wish I had your willpower”, “Just eat healthy and exercise”, “It’s not that bad, at least you don’t have cancer”, or my personal least favorite “Well, you look fine”. Eating disorders are mental illnesses that have serious consequences on the physical body. For anyone that has told me that my eating disorder wasn’t a big deal, keep reading. For anyone that thinks eating disorders are trendy, keep reading. And for anyone that has an eating disorder, this is your trigger warning, I will be discussing numbers and behaviors.

When I was 14 years old I was diagnosed with anorexia nervosa. Not only did it consume my thoughts, but it wreaked havoc on my entire body. Emotionally, I felt numb and overwhelmed by all of my thoughts. A day didn’t go by where I didn’t worry about what I was eating. I was depressed, angry, and isolated. I felt completely alone and I wasn’t willing to let anyone in. My relationships suffered. I fought with my parents all the time, usually about food. This went on for years. Whenever I struggled with food, I struggled with my relationships and sense of self.

The physical damage that I did to my body began almost immediately, but over time it gradually got worse. The first sign that my body was suffering was when I stopped getting a menstrual period. This happened as an immediate result of severe calorie restriction. I developed what is called amenorrhea, which is the absence of three or more consecutive menstrual cycles. I am 22 years old and I can count on my fingers the number of menstrual periods I have had in the past 8 years, which is not normal in the very least. I’ve heard plenty of people say that I’m lucky that I don’t get a period, which for me is incredibly frustrating to hear. A regular period is a sign of good health. My body was starving, so it shut down functions to prioritize “more important” organ functions for survival.

Having amenorrhea became like a domino effect for a slew of other health problems. Due to this, I had extremely low levels of estrogen and calcium. Why is this problematic? Well, my body was literally pulling nutrients from my bones at a time where my body should have been in peak condition for increasing and optimizing bone mass. When I was a junior in high school I started getting a ton of cavities. I couldn’t understand why; I didn’t eat any sugar besides fruit and I was pretty thorough about taking care of my teeth. I was getting cavities because I was so calcium deficient. By the time I was 19, I had developed osteoporosis in my left hip and in my spine. Osteoporosis is a disease that occurs when the body loses too much bone mass. Bones become weak and brittle; they can break or fracture easily. Osteoporosis is irreversible. At 19 years old, this was news I really struggled to accept. I worried that I would hurt myself accidentally in the future, and I worried that the damage I had done to my body would get worse. Osteoporosis typically occurs after menopause, I felt too young to be dealing with this.

That same year I received even worse news. Rewind to Fall 2017, I was away at school. My eating was terrible, I was struggling so much. I had a panic attack about food almost every day, was late to all of my classes, and could barely focus on anything. Eventually I was unable to move my right leg; I didn’t know why and I was scared. It didn’t help that my entire campus was composed of hills. I ended up in the hospital hooked up to an IV and a heart monitor because my heart rate was low. The protocol was to get an MRI of my brain to see if that could give an explanation for the lack of mobility in my leg. The news I received was heartbreaking and shocking. The MRI did not show any reason to lose mobility in my leg, however it showed something else. I have permanent brain damage from my eating disorder. I have lost grey brain matter, have holes in my brain, and overall brain shrinkage. At times I still struggle to process this harsh reality. How could I do this to myself? Well, what about your leg? I had very poor blood circulation due to not eating enough, so basically there was little to no blood flow going to my leg, which was why I couldn’t walk.

A “Normal” Brain vs My Brain. Top view.
A “Normal” Brain vs My Brain. Side view.

I’d be lying if I said the self destruction stopped there. When I was 20 years old, I dropped down to 65 pounds. It’s a miracle that I’m even alive, that is the weight of a first grader, not a 20 year old woman. If I hadn’t gone into the hospital when I did, I would have probably died within a few days. I kept asking “Is it really that bad?” Because I couldn’t see how sick I truly was, and looking back I feel sad knowing how consumed by the illness I was. I was a pain in the ass; I gave everyone a hard time. I really didn’t want to be healthy. My heart rate was only 32. That’s not normal. After a couple of weeks it went up to the 50s. My liver enzymes were in the thousands and I had terrible edema in my feet and ankles (edema is fluid retention). I was in the hospital for about a month, a refeeding unit at a different hospital for two weeks, and then residential treatment for another four months. The mental torment was indescribable.

After all of that my doctors pretty much deemed me infertile. They said it was unlikely I could have a child of my own because of the damage I had done to my body.

When I was 21, I started binging and purging. This brought another slew of issues with it. Less than a year later, I have terrible acid reflux, vomit involuntarily (occasionally blood), have IBS, food sensitivities, and problems with my liver. For me, mentally, binging and purging was so much worse than restricting ever was. My weight was fluctuating, I was sick all the time, I felt out of control and like I was failing the one thing I had always been good at. I felt frustrated and ashamed of my actions and “secret life”. It destroyed my already non-existent self-esteem and sense of self.

Stop glorifying this illness, stop joking about it, stop minimizing it. It’s not glamorous. It’s not funny. It destroys lives.