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The Story of Susie: Why EDAW is so Important

Trigger warning: This story shares Susie’s experience with Anorexia, including photos, and mentions the loss of loved ones.

If you are more of an auditory or visual learner, Susie took the time to read this post and create a video for those who are unable to read it:

My Eating Disorder Story:

I first became ill from Anorexia Nervosa right around puberty. During this time I also experienced a change in my social circle. Suddenly, instead of my warm bubble of elementary school friends, I was now among other schools and their friendship groups.

I felt scared, left out, and like I didn't know how to navigate making new friends. My grandmom had just died so my family was grieving at home, and then my first pet died of cancer at just age 5. She had been my comfort. I felt like something was wrong with me because so much chaos was happening all at once.

Because I didn't know how to share those feelings, I tried to ignore them and tried to stop taking up space. It was hard for me to eat or think of myself during a time when the rest of my family was so openly expressing their anger and sadness.

Coupled with Puberty (which is NOT easy) and feeling embarrassed and insecure about the changes in my body and what it all meant, I just wanted to hide. Nothing was ever the same.

Counselors started getting involved, friends worried, and I was bullied a lot for being so thin and lanky. I wore coats to bed, I lost hair, and barely any photos exist of me during that time.

But I did get better. The next year, I joined a Girl Scouts Camp trip and had the time of my life. I felt more confident. I started having the best years of my life. But I always worried my eating disorder would come back.

At that time, I had not yet had any therapy for my eating disorder. I just acted like it was a blip and wasn't a big deal.

Again, in college, anorexia resurfaced amid chaos. And even though I started therapy I was still unaware of why I wanted to starve and punish myself and tell myself these life changes were MY FAULT. I became so ingrained in the disorder that my life centered around what I wasn't eating and for how long I wouldn't (or didn't) eat.

At this time, I needed more extensive care. My health was rapidly failing, my mom was pleading with me on the phone to "Choose life!”, “Please eat!", and I was so incredibly terrified of dying... but also living.

Unfortunately, the nearest eating disorder center that was covered by my insurance was over 2.5 hours away. I tried short stays at local hospitals' mental health units, but they were inexperienced with understanding eating disorders and continued to shame me for my lack of eating, like I was doing it to be rebellious.

I felt so misunderstood and alone. They thought I was bad, so I must truly be bad. No one else on the units had an eating disorder and I felt very stigmatized and alienated. I did not get proper care there.

When I went inpatient for eating disorders specifically though, I started to truly understand what drove me to fear foods or fear showing myself some love and patience.

I could write books about my stays at this inpatient treatment facility. I grew so much during that time and really came to understand myself better. I met lifelong friends who also had eating disorders.

It was such a JOYOUS feeling to be surrounded by people who cared and professionals who were knowledgeable in HOW TO CARE for eating disorders. However, my eating habits were so ingrained that it was a long journey to learn how to care for myself and even just to TRUST that I was safe enough to love myself.

This was a very long period of my life, breaking these habits, and I had quite a few relapses and falls. I revisited this inpatient facility over and over.

At one point, we thought insurance would cover an intensive outpatient program and my dad was willing to relocate and stay with me in this new city while I started the program, but the cost was astronomical, and insurance only covered one day of care.

It felt like my hope was shattered.

So, I returned to casual therapy sessions back in a city with very few eating disorder support resources.

I'm grateful that there is more information about eating disorders available to honor that healing journey.

My name is Susie. I’m an artist, musician, and eating disorder advocate in Erie, PA.

I first started spreading awareness about eating disorders and my daily life managing anorexia in 2008 when I made a video of myself opening-up on YouTube. Since that time, I've had my ups and downs in recovery and tried to stay very honest about those waves.

To honor that journey, I started getting more involved in activism and advocacy. I've taken part in the National Eating Disorders Association (NEDA) Eating Disorder Awareness Walk across the Brooklyn Bridge in 2011 (it happened on my birthday and felt like a birthday wish come true!), raised money for the cause, and am now a collaborator and content creator for NEDA.

In college, I had a gallery show called Case Study, which was a mixed medium event (video, photography, sculpture, book design and more) showcasing the honesty of what an eating disorder looks like when not sensationalized. I also made a full-length documentary, called “Retreat Behind Ribs”, which garnered over 96,000 views by 2012 when I decided to take it down.

Along with my story, I'd like to share 5 reasons why National Eating Disorders Awareness Week (EDAW) is so important to celebrate.

CELEBRATES how far we’ve come in our own Eating Disorder Recovery Journey:

This day can mean a lot to those who are in eating disorder recovery now. I remember being so sick with anorexia I could no longer go on a trip to Italy that I had been dreaming about.

I was going to learn painting. Painting! But instead, I was in an inpatient facility, with structured meals, fighting against my own mind, and I couldn’t even flush my own toilet.

Eating disorders can make us feel like we’ve lost out on life, and oftentimes the way to re-empower us is to share and have others listen to our story. Let’s make space this week, and every week, to listen to other eating disorder recovery survivors’ stories too, to help celebrate them during National Eating Disorders Awareness Week 2023.

COMMEMORATES lost loved ones and honors their Eating Disorder Recovery Journey:

This is a hard one to talk about, mainly because I miss a lot of people who have passed away, but I felt it was too important to not talk about. There's a certain level of grief that comes with knowing a friend took their life or starved themselves to death.

Exactly a year ago, a close friend of mine passed away unexpectedly. The grief sits on my chest daily. She had been through so much: recovery, ups and downs, and in the end her journey was cut far too short. I miss her daily and often wonder how I could have better supported her. Ultimately, these journeys are our own.

But honoring somebody's eating disorder struggle does not mean just when it ends.

I have another friend from treatment whose family member died, unrelated to eating disorders, but grief has been known to set off and trigger eating disorder behaviors and so to honor that struggle, I will hold her and her family in my thoughts as I look up at the green & blue Bicentennial Tower during EDAW.

In the past I walked or made videos to honor my friends’ lives, but I am incredibly grateful that I can go to an event locally. It gives me hope that more of the world is taking notice and talking about the grave effects an eating disorder can have on a person and their family and friends.

RAISES eating disorder awareness and could literally save lives:

Although it's hard, talking about the sadness that comes with eating disorders is important. So here I am, trying to do that. Through treatment, I have lost a few friends to both anorexia and suicide. It never gets easier hearing that this has happened.

I feel like I have a community of headstones, weighing on my shoulders knowing they have passed in these ways. I also have survivor's guilt. I am a suicide survivor. When I forget to eat, my body remembers what anorexia felt like and instead of just getting 'hangry', I feel utterly depressed.

Every time I feel a pang of hunger, I grieve over the days I punished myself and disliked myself so much. Depression and related mood disorders are no joke. We can't control how others are going to handle their grief and sadness, but perhaps opening up about our own struggles can make one more person feel less misunderstood.

The experiences of those suffering from eating disorders are also important to talk about so that insurance companies begin to take them more seriously. I have heard countless stories from friends in treatment having to take out second mortgages to get proper care.

That's why advocacy is so important. Not for me. But for the others in the thick of their eating disorder, being told by insurance companies "You don't matter. Continue to suffer. Give us your money." It is heartbreaking and some may say inhumane.

SPREADS a message of self-love and acceptance for all bodies:

Eating disorders– I like to stress– are MENTAL disorders, not physical ones, so we cannot judge based on somebody’s physical appearance whether they struggle or not. If someone says they are struggling, listen.

Some of my worst days in recovery were getting used to a new body type and oftentimes people would comment on my physical appearance, knowing I was in recovery and trying to be positive.

But these comments only reminded me that people were fixated on my body. This made me even more fixated on my body and all that it represented to me. My body, my body, my body– is MY body, ok? (Spoiler alert: It is! Your body is amazing!)

My own eating disorder journey left me with medical conditions including nerve paralysis, dysautonomia, and gut health problems. It's not pretty. And there are days that it all feels so unfair.

But in retrospect, I no longer need to punish myself for the sadness I felt and the effects it has left on my body. I have a constant reminder of what my body has been through, and I can use that information to either further shame myself, or I can learn to stand tall (or wheel tall– since I’m an ambulatory wheelchair user) and use it to remind myself of how far I’ve come to learn to love myself despite other’s opinions of me.

I have now internalized that I AM enough, and I know that couldn’t have happened without years of therapy. But boy oh boy it is hard to trust the process at times.

It feels like a lot of pressure to know that, in the end, it is our own responsibility to take care of ourselves. But the beauty of this is we can love ourselves without anyone else’s permission. That’s kind of freeing, don’t you think?

HELPS those with Eating Disorders know they are seen and they matter, and hopefully they can feel less misunderstood:

When you're in the trenches of an eating disorder, you need to be surrounded by supportive people. That can be difficult for many.

Bullies exist even into adulthood and our home-life can take a huge toll on our mental health. Even in the medical field, many professionals aren’t knowledgeable about eating disorders and can do more harm than good.

Finding just a few people you can trust can make a world of difference in your eating disorder recovery journey. And thankfully, celebrating Eating Disorder Awareness Week is bound to bring a few (hopefully many!) people who care, together.

I would not be here today had it not been for the amazing friends I made during my recovery journey. They are oftentimes what keeps me going, even if it’s a made-up conversation I have with them in my head. They are my cheerleaders, my squad, my fellow soldiers in the trenches.

You know how you have friends you connect with because you both are obsessed with the same band? Or they LOVE to crochet, and you do too? Well, these friends are deeper. No one needs to speak to know that we each carry the same insecurities. Even to this day, I keep tabs on my eating disorder recovery pals and hope they are doing ok. They are my lighthouse in dark times.

Oddly enough, after learning more about loving myself, I learned that everyone– with or without an eating disorder– can feel insecure and show it in different (sometimes destructive) ways. Recovery has taught me a new depth of patience and understanding for anyone else dealing with big emotions or feelings of self-loathing. I feel like a better, stronger human being, even if physically you look at me and see someone weak.

I’ve not only had to learn to love myself despite having an eating disorder, but also to accept and love myself with disabilities as well.

There is always a community of people out there, ready to help you mentally get back up.

And on that note, I want to thank White Pine Center for Healing for allowing me to make this blog and share a bit of my story. I remember years ago there were no treatment options available in the local community. It is such a beautiful stride in mental health awareness that a center finally exists! It really says a lot about how necessary mental health, and especially eating disorder resources are.


If you enjoyed reading Susie's story, please consider making a donation to aid us in continuing to support those suffering from eating disorders in our community.


Contact info for Susie Hosterman



YouTube channel: Stay Tuned with Sooz

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