June 1st 2008: a story of what it’s like to be living with an eating disorder

Hi all!

Happy Sunday 🙂 Post number five for Eating Disorder Awareness week. This was 4567% unplanned. I wrote this post very late last night while sitting on my floor (sit on your floor often kids, it’s very very grounding), drinking bedtime tea, and instead of reading like I have been doing before bed I decided to open a can of worms… metaphorically speaking of course.

This post induced some crying. When organizing yesterday I saw my binder from treatment and some old journals. Flipping through one of the journals, one page was folded. After reading, I don’t remember why it’s folded. Perhaps that will come. But I think the universe meant for me to read this, and that may or may not be a future post. As I say often when talking about recovery, it’s a process. Let’s say for example there are 20 phases of recovery (arbitrary number for example purposes only): where 0 is the initial starting point, 20 is it never happened, and 19.5 is pretty much as far as one gets (aka “recovered” or “in full remission”)… I’m at like 18. I’m still IN this process. For my process, phase 18+ is the deep inner child work.

I’m sharing this to shed light on what it is like to be living with an eating disorder. I say “with” because it literally is like living with another person, a very abusive person, but one that somehow still gets the final say.

I’ve shared a journal entry before, from 2013 during my time in treatment. It’s linked so read that if you wish, but I think this one, at least for me, is even more powerful because my 26 year old self can feel that sense of fear and pain that comes with the beginning.

Only parts of this entry will be shared below, some parts that get into specific behaviors are omitted for the sake of it not being extremely triggering for anyone reading that is struggling. It is from June 1st 2008. Close to 12 years ago. This is between my freshman and sophomore years of high school and about 4 years into my eating disorder.
Side note, low key pats on back/high five to 2008 Sarah and her writing abilities. Love, 12 year older self.

*Disclaimer: if you are actively struggling with, in recovery from, or feel at risk for developing an eating disorder PLEASE read this only with your own needs in mind. If you feel like this will be triggering please don’t read this post.*

“I don’t understand how this happened. When I hear the word “anorexic” it makes me cringe. But there is part of me that feels a sense of accomplishment. I did enough of what I was told and reached something.
I highly doubt I’ll ever 100% beat this. I want to but I can’t. I feel like even when I’m 50 years old things will still be like this because I’m too far gone. But I don’t want it to be like that then. I want to remember it, how bad this sucks, how much pain I’m in that nobody sees. I need to remember it so I don’t go back.

When I really look at myself all I see is a ghost. There isn’t a person here anymore. It’s all restricting, finding creative ways to get rid of food, losing my friends, losing jumprope, feeling guilty about every single thing.

I can’t focus. My brain is consumed by thinking about how I will act, eat, burn it off. On repeat. It never stops. At home, at school, at practice *I was in cross-country at the time*. I’m obsessed… with myself… with taking myself out… to feel like everything will be ok. Why? What went wrong that this happened.

I want to let this go. I don’t know who I am or what I even like. I’m all over the place. I feel like if I stay scattered people won’t be able to see me. It feels fucked up because I am alive in this world and am grateful for that yet I hate myself. It is like living inside a game, a game in my head. I look into the mirror and don’t like what I see but what I’m most scared of is me.

I hate that I let myself get as bad as I did last year. I’m my own worst enemy. I’m afraid to let this go and this causes me to be in a constant battle with my mind. I don’t know who I am anymore or what I am going to become.

I have good memories of before this all started. But I also feel like I was never enough. Nothing has ever been enough. Especially with my dad. We always fight and it makes me extremely uncomfortable but I don’t know how to stop it. I feel like I’m mad at him because he doesn’t care care of himself. He has Crohn’s and has gone through over a dozen surgeries and I know it’s becoming more of a problem even though he tries to hide it. I’ve told him how I feel and asked him to try to take care of himself. He says he will try but doesn’t and I feel like he is just giving up. I feel like whenever I do try to connect with him about my life he gets angry and is disappointed. And then I get angry. I feel lonely, like I don’t belong.

There’s so much that nobody knows, that I think will be a secret until much later in my life because I don’t want to add more negatives or be seen as weak. The past four years are built on secrets, lying, hiding, and destroying my life for a voice that isn’t even mine. I want to beat this, to feel like I have a family again, to feel comfortable. But I think I still need what I’ve been doing.”

After my own reading this:
26 year old self to my younger self –
Thank you for doing what you needed to feel safe, even if at this point it was terrifying for you, this was a protective mechanism. You weren’t able to make sense of it then. You were young when this all started. You did your best with the resources you had.

“Be the love you never received.
Be the acknowledgement you never got.
Be the listener you always needed.
Look at the younger versions of yourself within you and give your self what it is you always needed.
That is the first step of healing.”
– Vienna Pharon

Myth bustin’ + quote sharing: Eating Disorders & Recovery

Hey blog fam!

Post number FOUR for Eating Disorder Awareness week is all about busting some myths and sharing some quotes that either may be helpful for someone struggling or are just concepts worth thinking twice about. I’ll flip flop back and forth between myths and quotes to keep you on your toes things varied.

“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” ― Anaïs Nin

Myth: Eating Disorders have a “look”
—> an individual can have a life threatening eating disorder regardless of weight/shape/size

“With food restriction comes life restriction, and with life restriction comes misery.” ― Amalie Lee

Myth: Eating Disorders are all about control
—> it’s possible for this to be the case for someone but this cannot be a blanket statement across the board. Each person develops an ED for a different reason or reasons.

“Complimenting someone on their weight loss doesn’t validate their effort – it validates that their effort earns them value or worth.” ― Sara Upson

Myth: Once someone is done treatment they are all better
—> Often times post-treatment is where the “real work” begins. Treatment provides a space to get someone to a medically stable place. The ED served a purpose, that purpose takes time to unravel and create new thought processes and brain pathways around. Learning how to understand and take care of oneself (especially in a society which allows us to disconnect on the reg’) is tough work. It takes time.

“Survival mode is supposed to be a phase that helps you save your life. It is not meant to be how you live.” ― Michael Rosenthal

Myth: [I] am/was not sick enough if: “I didn’t lost my period”, “I wasn’t in an inpatient treatment”, “I didn’t go to treatment”, “I never hit rock bottom”, etc.
—> If you are suffering, you are “sick enough”, and are fully deserving of love and support and care. ALWAYS.

“I’ve never met anyone with an eating disorder who hasn’t had one for a reason. I’ve also never met anyone with an eating disorder who chose to have one.” ― Rebecca Manley

Myth: It’s about the food
—> It becomes partially about the food, but it isn’t about the food.

“To recover is to create a life in which numbness is no longer necessary for survival.” ― Jean McCarthy

Myth: It’s not that big of a deal
—> Anorexia has the highest mortality rate out of all psychiatric illnesses (source). Long term (chronic) and short term (acute) health consequences (from any ED) are a big deal. Health consequences may include: osteopenia/osteoporosis, irregular heart rhythm, refeeding syndrome, heart failure, reduced blood pressure, ulcers, blood sugar, insomnia, seizures, amenorrhea, hair loss, kidney problems, anemia, and more.

“I’m fighting for recovery from an eating disorder in a culture that continually reinforces every behavior I’m trying to break free from. And it’s absolute shit.” ― Shira Rose

Shout out to all you badasses doing this work.
I see you.
You are worth it.
Keep coming home to yourself.
Keep doing the work.
We all grow at different rates.
♥ XO

A letter to my body

Happy FriYAY folks 🙂

This writing I’m sharing today isn’t new. I wasn’t planning on sharing it. But, in honor of it being Eating Disorder Awareness week, it’s fitting.

As I stand on these summits,
hike up the trail,
walk around day to day,
hold my body up when I practice yoga,
when I move,
and when I breathe…
I can’t help but feel grateful,
and respecting of my body.
For what it has done and continues to do for me.

Seven years ago I wouldn’t have had the strength to make it up one mountain,
nevermind all of the the other mountains I’ve climbed,
literally and figuratively.

It blows my mind how resilient our bodies are.
How efficiently they can work.
How they can go from rock bottom to full days of hiking, biking, school, work,
the numerous things we throw at them,
and ask them to do without push-back.
They are magnificent beings,
with an innate power to heal,
and to work with what they are given.

I’ve always been drawn to the outdoors.
Nature and the silence which it offers holds a special place in my being.
It’s a space to cultivate a stronger bond with my “roots”.

Within ourselves we know what is best for us and what isn’t ideal,
whether or not we choose to listen to or follow this guidance.
For over a decade I let the other voices dictate my path and win every battle.
I destroyed my body and being –
physically, mentally, emotionally, spiritually.

It was a darkness that occurred as part of needing an escape,
being out of touch with my whole self,
and not understanding that in order to really fully get out of it,
I needed to do something I had never done before –
appreciate myself and my darkness.

Embracing the darkness,
letting it teach me how to work with myself,
teach me what felt good and felt like shit,
giving myself space and grace,
permission to grow and cultivate a sustainable relationship with my being…
This was the key.
The key to beginning a lifelong understanding that my body is here for me and I need to be here for it too.

To my body:
Thank you for sticking with me as I figured out and continue to figure out my path.
Thank you for being resilient even when I treated you like actual garbage.
Thank you for allowing me to see and explore beautiful magical places.
Thank you for not throwing in the towel when I felt like I needed too.
Thank you for healing.
I love you.

Discomforts of recovery

Hi all!

Happy Friday junior Thursday 🙂

Blog post number two for Eating Disorder Awareness week is per suggestion/request of two of my favorite humans. One friend suggested talking about bloating and body changes and then another about “tolerating discomfort/moving through discomfort” – this post gets into all of it.

There are a lot of uncomfortable things one experiences both during an active eating disorder and throughout the recovery process. And these things change throughout the experience as well. For example, bloating may be more common during a re-feeding and/or earlier stages of recovery but it’s also not mutually exclusive to this time point. Whereas tolerating discomfort can be seen more as a general concept as, well, real talk – life regardless of an eating disorder (ED) history can be highly uncomfortable at periods. Discomfort isn’t only physical either, it can be emotional/mental, or all of the above.

Without making this a LENGTHY post (it’s still lengthy), because I easily could write a novel on this topic… I’m going to try and highlight the major “discomfort points” that I see based on my own experience and also in the recovery community into three broad “categories”: active ED, early recovery, later recovery. Keep in mind this is fairly generalized and someone may experience something I only list in one “category” during a different time. Everyone is unique (and this is a good thing 🙂 ). I’m also not placing any definition behind early vs. later recovery, again, every single person going through this journey will have their own experience.

Active ED:
– Comments such as: “you don’t look like you have an ED” or “I wish I had your discipline”. Literal face palm here.
– Physical complications such as digestive symptoms, loss of menstrual cycle
– Hunger
– Loss of interest, depressive moods
– Anxiety and hypersensitivity
– The amount of time and brain space that goes into the thoughts and behavioral patterns during an ED
– Isolation and feeling alone
– Deep emotional and mental turmoil

Early recovery:
– Re-feeding
– Bloating
– Extreme hunger
– Comments such as: (e.g “you gained/lost weight”, “you look so healthy”
– Dealing with acute physical complications (e.g blood sugar, blood pressure, electrolyte imbalances, etc., etc.)
– Hunger
– Body changes (literal weight gain/loss, redistribution of weight, overall body composition)
– How clothes fit
– Not knowing how to cope and feeling as if you’ve lost part of yourself
– Being witness to co-workers/friends/family following various diets and exercise routines

Later recovery:
– Dealing with chronic physical complications (e.g long-term digestive issues, bone mineral density, etc.)
– Body changes
– Pregnancy
– Having/finding/maintaining a support system (usually the support being extended is greater during earlier phases of recovery)
– Major life transitions/trauma and managing recovery/remission while minimizing risk of relapse or lapses
– Managing lapses
– Needing to be on any form of “diet protocol” for a specific illness/disease
– Navigating “exercise”/”fitness”/”movement”
– Diet culture

That is NOT a comprehensive list. I couldn’t even possibly give a comprehensive list because I’m going from my own personal experience plus those I know who are in this process and what I see in the recovery community. Which is still all my own perception.

The varying degrees of discomfort are real.
They are extremely valid.
Eating disorders are all consuming,
They don’t just affect someones mental health.
It’s not just about the food.
It’s not a body-image problem at the core.
It’s every.single.part.of.the.persons.life.

Relationships (family, friendships, intimate), school, work, cognition, emotion, connection to self and the entire world, ability to feel joy and ease and safe, physical well-being, trust.

It’s a rabbit hole that is incredibly hard to dig yourself out of.
Cyclical. Painful. Intrusive. Terrifying.

When in the process of writing this, I was having some memories pop up from very early stages of my ED. 11/12 year old Sarah feeling completely inadequate, untrusting, unsafe, and unable to express this. Being terrified of the voice in my head that didn’t seem to be mine, but that seemed strangely safe and comforting. 13/14 year old Sarah engaging in self-harm behaviors because the starving and purging wasn’t enough of a numbing. I remember I would lay on my bedroom floor some nights and just cry, deep deep cry, and write (writing has always been helpful), and cry, and try to be as quiet as possible because I didn’t want anyone to hear me… because I felt like there was no way to help, that it wasn’t that “bad”, and therefore I would just be a burden to everyone around me. I could storytell a lot more but that’s not the purpose of this post.

For now, I want to focus on how to deal with and manage the discomfort.
*And this is entirely from my 26 year old, almost 7 years in remission, perspective.*

Just like everyone will have various discomforts and sticking points at different stages, the ways to manage these will vary too. What works for one person could potentially be triggering for another. Recovery as a whole is a giant grey area and as one progresses further on their path, the grey becomes a little less murky and hopefully reaches a point where you understand yourself pretty dang well as a human being.

The early stages are HARD because the primary coping mechanism is “gone”. It’s getting your feet wet again. Learning what is helpful and what is very much not helpful. During this stage, things can be very uncomfortable… kind of like you’re trying to run in deep thick mud. I’ve discussed this previously but it’s relevant; for about a year after being weight restored I dealt with substantial bloating. This was incredibly challenging because I already felt out of element and then I also needed to continue to fight any ED thoughts that came up and keep taking care of my nutrition/care needs to heal. Which was pretty much the last thing I wanted to do. Honestly, beyond grateful to have had a rock solid support system at this time point.

That’s an example of “early stage” from my story.

There’s also re-establishing some form of routine. Integrating recovery practices into daily life. Figuring out boundaries both for yourself and for your relationships. Learning how to express your needs vs. shoving them down until you spontaneously combust. “Early stage” can have a strong emphasis on risk management – the risk being lapse or relapse. Honestly, in my opinion, I think doing what YOU need to do for YOU in this stage to NOT fall back into the rabbit hole is key. That said, relapse does NOT mean you’ve failed. At all. Ever.

I think, to a degree, all of the discomforts of the earlier stages can set someone up to effectively manage future hurdles and speed bumps in a way that feels safe (still uncomfortable, but safe) and supportive of ones’ process and recovery. A lot of the work is really in learning what were the initial reasons (even if not all of them) of the ED’s development. From here, doing the work around this; because it never really was about the maladaptive behaviors in the first place.

Being gentle when things pop up, because they will. Heck, as I was writing this post memories popped up from the intense emotional pain I experienced in the early stages of development of my ED. And I just sat with them, gave them space, and was like this is apparently important to include in this blog. And so I share, and I’m gentle with what comes up.

Another thing I’ve found helpful is breaking down why something is uncomfortable. There are obviously circumstances and situations that are deeply painful or traumatic, these are a whole other thing. But the things that can be broken down quickly, in the moment, like comments people make/feeling bloated/seeing diet ads/intrusive thoughts/clothes fitting different/situational anxiety – break it down.
Why is it prompting discomfort? Where’s the root of that? Is it fear? Shame? Guilt? A brain pathway that needs some “re-wiring”? What is it. Get curious and either rationalize it, re-context it, or change the story around it you currently have in your brain space.

For the bigger discomforts such as major life transitions, I’ll say what has worked and continues to work for me. I recently wrote a whole post titled “managing continued remission”, where I talk about the strategies I find helpful. Read that if you wish, but I’ll make a cliff notes version here:

– Grace
– Love and appreciation for everything I’ve been through, even the dark stuff, because I have gained A LOT of knowledge about my inner world and can now use this to be a better helper/healer/empath/person
– Self-care pyramid/hierarchy of needs – making sure the basics are being covered as much as possible
– Therapy as needed. I think having a therapist during transitions/major life changes is helpful. Sometimes in later recovery stages the support system isn’t as supportive because well, you don’t need it to be, but during major transitions you might need that extra support
– Continuously checking-in with where I’m at, how I’m showing up, and being very honest
– Acceptance that whatever is going on is another piece of the puzzle

On the hard days remember:
The uncomfortable moments will pass.
You will survive this. Whatever the ‘this’ is.
You are strong. Resilient. Capable.
You have value.

One of the biggest lessons I’ve learned throughout all of this, from age 11-26, is that:
I wouldn’t be who I am today without the deep, ugly, icky, terrifying, uncomfortable. And so I give it respect. I give it space, not power. And keep going.

“Some people survive and talk about it. Some people survive and go silent. Some people survive and create. Everyone deals with unimaginable pain in their own way, and everyone is entitled to that, without judgement. So the next time you look at someone’s life covetously, remember…you may not want to endure what they are enduring right now, at this moment, whilst they sit so quietly before you, looking like a calm ocean on a sunny day. Remember how vast the ocean’s boundaries are. Whilst somewhere the water is calm, in another place in the very same ocean, there is a colossal storm.” Nikita Gill