NEDAW 2019 – Come as you are

Header_Come As You Are

As you may know, today kicks off National Eating Disorders Awareness (NEDA) week! I have been a huge fan of this movement since I first learned of it, because this is the one time a year I feel a little more justified spamming everyone with eating disorder aawareness info 😉

This year’s theme is “Come As You Are.” Here’s a blurb from NEDA about it:

Our 2019 theme, Come as You Are, highlights NEDA’s movement towards inclusivity in the greater eating disorder community and our goal of unifying the field of eating disorders. In particular, Come as You Are sends a message to individuals at all stages of body acceptance and eating disorders recovery that their stories are valid. We invite everyone, especially those whose stories have not been widely recognized, to have the opportunity to speak out, share their experiences, and connect with others.

We aim to start conversations with a variety of communities that struggle at comparable rates to those traditionally thought of as struggling with eating disorders. We hope to offer them an opportunity to share their stories, see themselves in others’ stories, and recognize that their experiences are valid and welcome, no matter where they are in relationship to food or their bodies.

So this NEDAwareness Week, come as you are, not as you think you should be.”


Given the theme, I thought I would start off the week by being vulnerable and honest about where I am in this moment. I would love to be able to come here and share all the amazing things I’m doing for my recovery, but that simply isn’t the case. I have felt a lot of shame in that. After over 5 years of treatment and more struggling, shouldn’t I just be healed already? I always imagined that answer to be yes for myself.

Right now I’m in a bit of a slump, maybe leaning towards relapse at this point. Okay it probably is relapse… My old friend excessive compensatory exercise came back after a pretty long hiatus. Along with it, I’m restricting food intake and excluding all but my safe foods. This has lead to my weight dropping from where it was stable for many months and implementation of the dreaded “weight gain protocol” whenever I have a dietitian/therapy appointment. (I’ll spare you the details on that one, but essentially it means lots of Boost/Ensure if my weight isn’t doing what it’s supposed to).

I am struggling. It’s many of the same issues I’ve been through time and time again, yet this also feels so new. I feel almost like I have forgotten how to get from here to a better spot, and even if I did know I have little motivation for follow-through.

One thing that has been super frustrating is all the medical knowledge (and treatment knowledge, too) that I have. I know what happens when you exercise without fueling your body. I can list off all the medical complications. I have experienced them in the past and now even. I know what kind and how much nutrition I need. I can tell anyone else how xyz is going to harm your body. I am so close to becoming a nurse, but I am an almost-nurse who wholeheartedly goes against what she knows to be true. I feel like a hypocrite and fraud all at once.

In this season, I am trying to be more gentle with myself because I deserve it.

This disorder has unfortunately been a big part of my life for many years. The fight isn’t easy at all. I am still here, though. I go to my appointments and do hard things. Being here now doesn’t mean I’ll never recover.

I wish my story was a bit different right now, but I truly feel sharing as I am is truly embodying what NEDA week means: ALL parts of your story, even these messy parts, are accepted here. Come just as you are. You’re all welcome here.

NEDA Walk Ann Arbor

My mom and I will be attending a NEDA Walk in April. I am beyond excited to participate this year, it’s been on my bucket list for a long while now! I know it will be a fun day and awesome opportunity to get together with others in recovery/raising awareness, but that’s not why I’m walking.

NEDA walks raise money for the National Eating Disorder Association. The funds will support individuals and families affected by eating disorders. Some programs and services offered by NEDA include an online screening tool, support groups, legislation advocacy, research grants, connecting sufferers to treatment options, and funding initiatives to prevent eating disorders.

As you may already know, I am one of the 30 million Americans who will struggle with an eating disorder in their lifetime. I have spent years in this battle. It’s affected every area of my life – friends, family, school, passions, and overall well-being. It’s been a long journey, but thanks to some amazing support and treatment programs, I am still fighting strong. My hope is that I will be able to help others like me in pursuing recovery and spread awareness about eating disorders.

I am walking for myself and everyone else who has struggled or will struggle with an eating disorder. I hope that through the contributions I can make I will be able to impact others.

I hesitated whether to ask for donations here on my blog, but I’ve decided I would, since this is why I’m walking. If you are willing and able to donate, please let me know. I won’t be posting the link publicly but I’ll send it to anyone who asks via my email revivingemily@gmail.com

Thank you!

For information about NEDA, NEDA walks, eating disorders, and more, visit www.nationaleatingdisorders.org

NEDA Week 2018 – my anorexia struggle (it’s not what you think)

I really love the theme Let’s Get Real because it opens up the opportunity for each individual story to be shared. Every person who struggles with an eating disorder is unique, yet we can also relate to one another. My story, along with everyone who has ever struggled with an eating disorder, is important and needs to be told. Today I’ll be doing it in a little bit different way by sharing some stereotypes about anorexia that I don’t fit into.

I have anorexia, but…

  • I’m not underweight, emaciated, or anywhere close to it. In the 5+ years I’ve had this illness, I was only underweight for around 8-10 months. I came into treatment for the first time with a lower BMI, however; since then I’ve been in the normal range. I went to residential twice without even losing a substantial amount of weight because the outside representation doesn’t matter as much as how you’re struggling on the inside.
  • I don’t feel overly affected by the media. Do I think that what we see in the media influences self-esteem, diet culture, judgment of bodies, etc? Absolutely. Has it played a huge part in my life? No. I do compare myself to people in advertisements, but that happens as I’m walking around campus or the grocery store too. I know enough about how manipulated these photos can be that I basically just take them as false and made up.
  • You cannot tell just by looking at me. I don’t have the “typical anorexic body.” I don’t think anyone would be able to tell I have an eating disorder by analyzing my appearance. I may be thinner as behaviors increased, but I am nowhere near the image most think of when they picture anorexia. I am not alone in this. A huge number of those with anorexia and eating disorders in general don’t look like they have an eating disorder.
  • I have never used laxatives, diet pills, etc. I know many people who have turned to these measures in order to lose weight. It’s just an area where the eating disorder hasn’t fixated on. I definitely have felt that pressure, though.
  • I haven’t needed (or come close to needing) a feeding tube. There are some who wear their feeding tube as some special badge you’ll only receive if you’re a “very good anorexic/bulimic.” I’ve seen countless people and treatment friends who use this as profiles or brag about it. There have definitely been times that I felt like a fraud because I hadn’t been sick enough to receive one. I can see now that being malnourished enough to need artificial feedings isn’t something to be proud of, and I am more than 100% okay with not having one.
  • I’m not on the brink of death. More than any other eating disorder, I see a ton of images and stereotyping that someone with anorexia has to in a danger zone. In reality, complete organ failure and other fatal conditions don’t actually show up until a very critical point. Most people, like myself, are relatively medically stable.
  • I do not enjoy being this way. Eating disorders are often glamorized. I have been told that I must have great discipline in order to lose weight the way I did. In reality, anorexia has taken over my life and made me feel empty. When I’m deep in the ED I become a shell of myself. I would never wish this on anyone or encourage them to treat their body this way. It is absolutely miserable, expect for the brief moments where ED praises me for how “well” I’m doing. Anorexia is not just a way to effectively lose weight and bask in your shrinking body. It is a slow and painful suicide.

NEDA Week 2018 – Treatment myths and truths + an overview of options

Fortunately, there are a variety of resources out there for eating disorders treatment. Unfortunately, there are many stereotypes, worries, and false speculations about what treatment actually involves. I think it’s so important that what really happens with treatment is put out there. I want to encourage others to seek help by showing that it isn’t quite as scary as you may believe. This will be two-fold: dismissing the myths and talking about what types of treatment are available. A note: most of the myths will pertain to groups, IOP, PHP, inpatient, and residential, considering many fears come from being around others with EDs.

Everyone will be underweight. I felt this way, too. The media perpetuates this by showing emaciated suffers and focusing on weight loss. The truth is that most eating disorders don’t need a weight diagnostic. Even those who struggle with anorexia, like myself, aren’t always underweight. I have met a huge variety of shapes and sizes in my treatment experience. The ED may tell you this is a lie, but I can pretty much promise it won’t be the case. Even if that were true, especially with inpatient, it doesn’t make your struggle any less. People have been nonjudgmental of weight in my experiences, too. Also, body type does NOT determine sickness at all.

I’m not sick enough. Whether this applies to residential, outpatient therapy, or even seeking help in general, it isn’t true. If you believe in any capacity that you may need help but simultaneously “don’t need it” given your perceived lack of severity, please still reach out. These are signs that point towards that. Your struggle is enough, period. You deserve help, period.

Going means I’m weak. Making the choice to get better is the absolute strongest thing you can do. Recovery is hard, there’s no sugar-coating it. Take that glimmer of hope and longing for things to be better. It’s worth it. You don’t need to continue living this way for 6 months, a year, or 20 years.

I’ll be the oldest, only guy, “least sick,” largest, etc. Eating disorders are very diverse. They affect all races, genders, socioeconomic statuses, ages, etc. Even  if you happen to be the only one in your specific group, you aren’t alone. There are millions just like you, and that can be comforting.

If I’m not in residential or inpatient that means I’m not really sick. Residential and inpatient are not some badge of honor that proves you’ve become bad enough to have an eating disorder. Most people never end up there and that has not a lot to do with their amount of struggling. The important thing is getting the level of care you need and receiving help ASAP, even if you “just” need outpatient.

I will just be constantly eating. It absolutely will feel like this sometimes, especially when in IP or residential at first. What you’ll soon realize, though, is that you have so much more than meals and snacks. You’re kept busy with groups and all of the activities that are going to help you grow in recovery. Eating is a necessary part of treatment but the other work you’ll do is just as important.

All we’ll talk about is eating. Holy hell thank God this isn’t true. Behaviors are surface level. There It’s like an iceberg. You see these awful things on the outside, when what’s causing all of it really needs exploration. I’ve never spent that much time focusing on the food, minus nutrition groups really. It’s just not the main focus, even though it is ultimately an outcome we’re working towards.

No one will believe I’m sick. The thing about treatment is that no professional would ever recommend it for someone they don’t believe is struggling enough to need it. You don’t go through assessments for no good reason. The fact that you go into treatment means that you need the help and that you are sick enough.

No one will ever understand. I was convinced of this when I was first sick. I never thought I would find people who truly got it. That immediately changed my first day of PHP. Suddenly I had 5+ other people who could relate to me so well. I think it’s one of the most beautiful things about treatment.

There will only be anorexics and maybe bulimics. I haven’t been in any treatment setting for very long before I met people who didn’t struggle with anorexia or bulimia. Many have EDNOS (now OSFED) or BED as well. Another thing I’ve learned is that I can connect with any of the diagnoses. It doesn’t matter what the official label you carry is or what your behaviors are. The underlying problems are very similar.

It will be too hard. This will stretch you big time. There will be tears, maybe lots of them. You’ll want to quit, sometimes every day for weeks. You’re not going to like it and will sometimes hate treatment. Regardless, you have the power to press on and keep fighting for yourself. If it were easy that wouldn’t bring change. Trust me, you CAN do this.


Now I want to give just a quick overview of treatment types, mostly based off of my own time there.

Outpatient therapy and dietitian. This is exactly what the name implies: seeing a therapist or dietitian in the office on a regular basis.

Outpatient groups. These groups are made up of many people with eating disorders and may be a therapy style, experiential, art, or other type of focus. I would say that support groups fall under here, too, although those are typically free of charge. These are both a good stepping stone for someone who has never been in a setting with others before. I think the connection and similarities you can find are very helpful.

Intensive outpatient – IOP. Typically IOP will be for around 5 hours a day, covering one meal and one snack. This varies by facility, of course. My center goes 11-4 three days a week. Besides meals and snacks, there are a few groups a day. Some offerings include group therapy, nutrition, experiential/outings, art, and yoga.

Partial hospitalization – PHP. This is similar to IOP but is more intensive. It usually runs for 2 meals and 1-2 snacks. I’ve been to one that was M-F 8:30-3:30 and another that ran every day 10:30-5:30. The setting can be a psych hospital, residential, or just an outpatient center. It allows for the most structure and support that doesn’t involve staying somewhere.

Inpatient – IP. Inpatient, like it sounds, involves being hospitalized, usually in a psychiatric unit or hospital. This is typically shorter term and mainly for stabilization. It’s required if there are any medical problems that would be difficult to manage in another setting. There is a full-time medical staff with 24/7 support as needed. People with other diagnoses are on the units as well. You attend ED groups and support groups part of the day and then general groups as well. Where I was, the average stay is 1-2 weeks and then step down to another level of care like PHP, or even going to residential.

Residential. This is the longest-term and most intensive treatment. Program size varies, but it involves living in a home-like setting for around 30 days minimum. You are completely removed from the environment that allowed you to grow sick. It’s a huge adjustment but also is very effective because of the radical change. Like IP, there is also 24/7 support, but not the same level of medical care. You have to be medically stable in order to be admitted. Sometimes they may bump someone to IP if they need it. Residential tends to be much less restrictive than inpatient. You are able to go outside, do outings, start back with some exercise, and even get solo passes.

Transitional living. For those who live far away and are unable to travel back and forth to treatment, some enters offer transitional housing. In my case, we lived in apartments not far from programming. It offered a supportive environment while still allowing autonomy. I did this after residential, which was a great way to slowly transition back to real life. Some places only do this for PHP, but others allow IOP patients to stay as well.

I hope that this information has been helpful. Feel free to contact me if you would like to know more about my experience or have any questions regarding treatment. I will try to help in any way that I can. 

 

NEDA week 2018 – Introduction & past posts

Today kicks off NEDA (National Eating Disorders Awareness) week 2018! This is always one of my favorite times of the year. Teaching others about eating disorders and spreading awareness is something I’m very passionate about. This is my 4th year doing so in some capacity on my blog 🙂

I can’t promise a post every day, but I’ll definitely be doing as many as possible. I do have a ton of ideas

The theme this year is Let’s Get Real. Here is a blurb about it from the NEDA website:

Our theme this year is Let’s Get Real and our goal is to expand the conversation and highlight stories we don’t often hear. Our culture has complicated relationships with food, exercise, and appearance.

30 million Americans will struggle with a full-blown eating disorder and millions more will battle food and body image issues that have untold negative impacts on their lives.

But because of stigma and old stereotypes, many people don’t get the support they deserve. Join the conversation and help us raise awareness, bust myths, get people screened, and start journeys to healing.

NEDA website: https://www.nationaleatingdisorders.org/

Eating disorders screening: https://www.nationaleatingdisorders.org/screening-tool

Eating disorders helpline: https://www.nationaleatingdisorders.org/help-support/contact-helpline

Here are some links to posts from previous NEDA weeks:

Lumped into the “eating disorder” category

Living with an eating disorder is a constant battle between thoughts, urges, behaviors, emotions, etc. It can be claustrophobic where suddenly your entire life is clouded by Ed. Separation may seem impossible. I have felt this way for years. There have been times of strong recovery but also deep relapse.

Even with the eating disorder so intertwined in my life, I refuse to be “that anorexic girl” or “that girl with an eating disorder”(since no one would look at me and think anorexia). Yes I struggle with an ED, that’s pretty dang obvious if you know my story well. Being lumped together with all of the stigma and ideas about eating disorders is not acceptable. Unfortunately, I have been experiencing that more lately.

If the average person were to think about EDs and why they exist, there would be a few very common answers. The first obvious ones would be “they just choose not to eat” or “why would you make yourself sick like that?” I’m sure you get the idea. The characteristics will combine into one generic disorder or split into bulimia and anorexia. This leaves no room for the vast majority of people who struggle with BED, OSFED/EDNOS, etc. It really isn’t helpful to do so. While there are similarities between the different diagnoses, each case is individualized. There is no “one size fits all” when it comes to symptoms.

Expanding beyond that, I have many recent examples of what the perceived causes of eating disorders are. As per my abnormal psych prof, the four warning signs/precursors are: perfectionism, not wanting to grow up, avoiding sexuality, and control. My psychiatrist, almost every time I see him, makes comments about how I can’t eat because I think I look fat, as if that’s the only contributing factor. I won’t deny that many of these points are valid. I struggle and see others struggling with some of these issues. The problem I have with it, however, is that there is no room for other explanations. Under these assumptions, how could you ever account for someone who wants to look ugly by restricting, a person with BED who has pretty much none of the factors listed, orthorexia, and a million other circumstances?

This all being said, I do understand that it’s important to have some idea of possible causes for eating disorders. I have no problem at all with lists that begin as “common causes of” or something similar. This offers suggestions and examples to look for (especially helpful in exploring treatment at first). It gives those of us with eating disorders something to possibly make a connection to.

Unfortunately, the negative labels and automatic conclusions come up far too often when someone has an eating disorder. Some that I find most hurtful: “you’re just doing this for attention” “just stop eating/don’t purge/eat your food” “you can snap out of this” “you want people to feel sorry for you” “you don’t have it that bad.” These make me sick to my stomach. I know that the people behind them are most-likely uneducated and fully believe in the stigma behind EDs, but this excuse doesn’t cut it. We are real people with feelings.

Eating disorders are not one-size-fits-all. We struggle with similar thought patterns and behaviors, but you cannot ever lump us into one person. If you hear of someone or find yourself believing these examples and others, please stop and think. Realize how much harm this can cause. Consider our feelings.

I am unique. I am not just some girl with an eating disorder. My story is all my own. Please see it as that.

You might have an eating disorder if… (stigma v reality)

Some of this may seem pretty darn ridiculous. This is because many people’s expectation for eating disorders is just that. I want to explore the general, uninformed thoughts of what someone with an eating disorder is like vs the reality of eating disorders. My hope is that this can help distinguish what is the truth.

Stigma

  • you look like a walking skeleton
    • Eating disorders have no weight or size limit. Have you ever heard of BED, OSFED, BN? None of these disorders are defined by weight (and anorexia to an extent can be the same). You could be severely underweight or obese and still your struggle is valid.
  • you believe you’re extremely fat
    • Feeling you are fat definitely can be a factor of having an ED, but isn’t always. For example, one study found nearly 50% of “normal” BMI women believe they are overweight. Not even close to all of these women have eating disorders, and not everyone with an eating disorder even struggles with this belief.
  • you order only salads and other”clean” foods
    • Under the premise of judging mental health based on foods people eat, every vegan or vegetarian would be labeled as an ED patient. Heck, tons of people have salads daily simply because they enjoy them.
  • you are an upper/middle class, white, adolescent or young adult woman
    • So, in order to debunk the myth about who can have eating disorders, let me give you a sampling of who I’ve met in treatment: adolescent and young adult men, people of color, a 70-year-old woman, children from 8-12, people with lower-income, middle-aged men and women. Hopefully, you get the point.
  • you are a vain person
    • The fact that some believe vanity is central to an eating disorder kills me. This has nothing to do with thinking you’re better than someone else or putting yourself up on a pedestal. For the most part, people with EDs tend to think very little of themselves.
  • you choose to have one
    • If I chose to have this eating disorder, that means someone would choose to have cancer, Parkinson’s or kidney disease. It’s clearly just for all of the wonderful attention we receive.
  • you just don’t eat
    • Finally, the “you just don’t eat” argument. Quite obviously, no one will survive if they literally eat nothing for an extended period of time, so that’s automatically false. Adding onto it, this assumes that the only/easy way to have an eating disorder is by starving.

This first list is either outside focused or under the assumption that mind-reading is possible.  News flash: no one has special mind-reading capabilities and can look into a person’s head to determine if an ED is present! An eating disorder is so much more than what you eat or look like. to me, the last three statements

Reality

  • you are a person
    • WHOA. So I’m telling you that just by being alive you can have an eating disorder?!? So weird, because you probably thought you must have some sort of obvious signs, maybe even a big blinking light. That would help.
  • you have ANY disordered eating patterns (ex: binge eating, eating in secret, eliminating all “unsafe” foods, purging..)
    • That’s right, folks. There is more than one disordered eating habit. The list here isn’t even comprehensive. Essentially, if something seems extremely out of the norm, it could be a sign of a subclinical or full-blown eating disorder.
  • your everyday existence is ruled by thoughts of food, behaviors, exercise, body image, calories, etc
    • Eating disorders are not something that only happens at meal time, while exercising, and as you look into the mirror. It encompasses your whole day (an average I’ve heard is around 12 hours a day!). Got a test tomorrow? Whatever you are studying will have the lovely background noise of the ED whispering or even screaming at you.
  • you have a body
    • Yet another mind-blowing fact. You only need a body? It doesn’t have to be a certain size or shape?
  • you have mass
    • Going along with what you look like, the amount you weigh is another false determinant for the presence of an eating disorder. EDs happen all across the BMI chart and a vast majority are in the normal-overweight range. (Another tidbit: BMI = bullshit meaningless information because it cannot begin to tell you a person’s health level.)
  • going into the kitchen creates a huge amount of anxiety
    • This is something that is pretty much a given. Whether you deal with binge eating, restriction, or anything in between, eating is a fear in some way. Since food is prepped and stored in the kitchen, it becomes a room full of all the anxiety.
  • you have different physical symptoms due to a MENTAL illness
    • I find this last one to be of utmost importance. No matter what someone may look like on the outside or even through their actions, you will never be able to tell what’s going on within. This is not a physical struggle, even though there are often physical results of the behaviors. So many people in this world have invisible illnesses – both mental and physical – that can only be seen by looking below the surface. You have to realize this when dealing with eating disorders as well.

I hope that this can serve as a (somewhat sarcastic) guide for those who aren’t quite sure what eating disorders are and aren’t. I hope that you have a few takeaways from it:

  1. Physical symptoms of anorexia are all too often used as a reference point in deciding whether someone has an eating disorder.
  2. It is way too easy to believe you can read minds and use this magical power to determine whether someone has an ED. News flash: mind-reading is impossible, even when someone shows *all* of the signs you know of.
  3. Eating disorders look different on everyone. A person of any gender, size, socioeconomic status, race, age, BMI, etc can be struggling. Never assume elsewise.

Thank you so much for reading! Do you have any others you would like to add?