NEDA Week 2019 – old post reposts

It’s technically after midnight here and already tomorrow, but I still wanted to get in a quick post before I head to sleep! I have had a super long day, so rather than write a longer post I decided to instead share links for all the NEDA week posts I’ve ever done! I promise to have new content tomorrow since I am oh so slightly less busy 🙂

NEDA week 2018 – Introduction & past posts

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

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

Also, bonus post that wasn’t NEDA week but is super relevant: Boycott the Before – Why transformation posts aren’t all that helpful

Advertisement

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.

Boycott the Before – Why transformation posts aren’t all that helpful

We are accustomed to seeing before and after photos – in weight loss commercials, on personal Facebook/Instagram posts, and pages advertising the next miracle drug/diet/magic fat-shrinking wrap. Most of these involve a before body that is “less desirable” in many ways (“fatter,” less fit, larger, etc) juxtaposed to the “better” body picture in which the person is always smiling. This is so common in the media that it’s easy to glance over and not realize what effects it may have on us. While I could go on about this more, I am instead focusing on a different sort of body comparison: before and after eating disorder recovery posts. This is especially important to talk about considering the numerous posts I’ve seen during NEDA week.

Full disclosure, I was one of these people a few years back. I felt that if I could post a picture of my lowest weight and where I was then it would prove my recovery and validate my struggle. I now realize this isn’t the case, and I would like to encourage others to reconsider the perceived benefits that come from these posts.

I do not feel adding in examples will do good for anyone, so I will instead describe the typical images you may come across. On the left is typically a clearly malnourished and emaciated person, sometimes one who looks more like a skeleton than a human being. The right will show the same person but with added pounds and a “normal weight.” There will be smiles, much like with the weight-loss versions, and a caption that explains their recovery and how much better they feel at the new weight.

I am in no way trying to bash those who make posts like these (remember, I did this too!), just give a little insight on why I believe they can be harmful. A quick rundown on how this can be problematic:

  1. Promotes the belief that eating disorders and recovery are both defined by weight. I have run into this countless times before. Many people are not very well informed on eating disorders in general. There are many myths about the correlation between BMI/weight and how they relate to eating disorders. One is that you need to be underweight to suffer from an eating disorder. Considering just one eating disorder diagnosis has a weight requirement, this simply isn’t the case. Naturally, this thinking leads to weight restoration being proof of recovery. If you’ve gained back the weight, you must be cured! Personally, I have struggled at a pretty large range of sizes/weights. My sickest period in thoughts, behaviors, and overall state of mind weren’t at my smallest. I actually haven’t been underweight for a majority of my eating disorder. You simply cannot judge how well someone with an ED is doing by looking at how their body has changed.
  2. Comparison, comparison, comparison. If there’s one thing eating disorders are great at, it’s comparing in nearly everything. The before and afters open up additional dialogue for the ED to run with. Was I smaller than them? Why did I have to gain so much more? Who is the sickest? The answers to these questions may lead thoughts into a pretty dangerous situation.
  3. Too much focus on the physical side of these mental disorders. Quite obviously, changing eating habits, exercise, and use of behaviors all tend to have an effect on the body. Often times this is a visible marker for the eating disorder. While it must be noted that this is the case, adding more emphasis is not helpful. Having “sick v recovered” photos out there magnifies the outward signs of EDs, while we should be focusing on psychological warfare that those struggling experience. This reduces a multifaceted illness to a superficial view.
  4. The before as a goal instead of a cautionary tale. Some viewing these images will flip the entire meaning of them around. They will idolize the “before” as something to work towards. The hopes of a smaller body become possible, as long as they follow disordered eating and mirror the opposite of how the transformation occurred.

There is a movement that I absolutely love and support called Boycott the Before. This week, #BoycottTheBefore, is meant to change what eating disordered recovery is seen as: a mental change, not just the physical one (that may or may not be present!). I love that their aim isn’t to shame anyone who posts transformation photos, but simply educate how they don’t show the full picture. (Side note: I really support and have posted a transformation that was just of my face before and after recovery because you could tell I was miserable based on my expression, bags under my eyes, etc.) I think it’s so important to emphasize all aspects of eating disorder recovery. The mental and emotional healing that takes place is for the most part way more important than the physical side of things.

If you are in recovery, I challenge you to consider posting something this week to show that there is so much more to recovery than weight!

Here’s mine:

IMG_20180307_102026
The first time I started treatment and recovery, I remember thinking that if I just gained back some weight and no longer “looked sick” I would be recovered. I was so wrong. I haven’t been at or near my lowest weight since the very beginning of my eating disorder (5ish yrs ago), but since then I’ve seen way more struggle. I have been a walking, talking eating disorder with no real Emily present. Yes, my journey from sick to healthy, and relapse to recovery many times has included some weight gain. That part truly doesn’t matter, though. What’s the most important are the mental and emotional changes I’ve gone through. I am way more than the physical part of my transformation. 
I’m so happy to be a part of the #BoycottTheBefore movement. The goal here is to focus on where you are in recovery and the triumphs you’ve had without posting a before/after transformation photo. It’s not that those are wrong to post, but more so the importance of opening up a conversation about ALL aspects of recovery. 
I go into some more detail about this in a post on my blog too. {Link in bio}
I hope that by sharing a little bit of my story and thoughts I can promote awareness about and the truth behind eating disorders. #edrecovery #edawareness

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.

What is NEDA Week and why is it so important?

It’s finally here! NEDA week – National Eating Disorders Awareness Week – is my absolute favorite time of the year. I am passionate about both eating disorder and mental health awareness, so I take every opportunity to do so. Here is a small blurb from NEDA’s website:

#NEDAwareness Week 2017

Spearheaded by the National Eating Disorders Association, the goal of National Eating Disorders Awareness (#NEDAwareness) Week is to shine the spotlight on eating disorders and put life-saving resources into the hands of those in need. This year’s theme is It’s Time to Talk About It and we’re encouraging everyone to get screened.

It’s time we take eating disorders seriously as public health concerns. It’s time we bust the myths and get the facts. It’s time to celebrate recovery and the heroes who make it possible. It’s time to take action and fight for change. It’s time to shatter the stigma and increase access to care. It’s Time to Talk About It!

My personal goal this week is not only to share all of these wonderful resources, but add my own content as well. My hope is that I am able to reach others and promote change in some way.

I will be posting this whole week on different topics. This is my 3rd year I’ve had this blog for NEDA week, and I want to make it the best one yet. Here are my posts from years past:

I will leave you with an interview from the director of my IOP clinic. She and a few others who are recovered spoke to our local news about eating disorders/NEDA week. I am so thankful for the resources I have right here in GR. Also, they are lighting the downtown bridge NEDA colors, the first and only landmark in Michigan to do so! II cannot wait to see things unfold this week!

World Eating Disorders Action Day – Why I care and you should too

Today marks the first World Eating Disorders Action Day. Just seeing that this is a worldwide event really means something. NEDA week and other campaigns have grown over the years in the US, but rarely have I heard of anything like this across the world. Today we can begin implement change. Key messages and goals include advocating for early intervention and treatment, showing the diversity of ED sufferers, calling for treatment that is more accessible to all who need it, promoting treatment and the truth that recovery is possible, changing policies regarding EDs, and sharing the “nine truths about eating disorders“. More on the goals here and key messages here. The organization’s mission is to “advance understanding of eating disorders as serious, treatable illnesses” and the vision is to “unite eating disorder activists, professionals, parents/carers and those personally affected to promote worldwide knowledge of eating disorders and the need for comprehensive treatment.” All of this excites me. How amazing is it that we are calling global action in the fight against eating disorders? It’s possible that today could plant seeds of change in policies, attitudes, and knowledge of these illnesses all over the world.

There are 70 million people worldwide who struggle with eating disorders. (For reference that is more than the total populations of: UK-64m, Canada-35m, and Australia-24m).Within that group there are those with early interventions, knowledgeable treatment providers, great support, lower stigmas, and ultimately a good prognosis. This is sadly the minority. Instead, most with EDs deal with little to no public knowledge, a huge stigma/shame surrounding eating disorders and mental illness, no access to ED specific treatment or treatment at all, financial barriers if there are options available, feeling alone, and a lack of outside support, leading to a low chance of recovery.

I am very blessed to be in the former. I’ve seen a therapist since relatively early on. My parents have known a long time and are helpful and supportive (especially my mom <3). I also have some friends who are there for me. I live 45 mins from FV, where I have stayed inpatient and done PHP. It may not have been the greatest experience and quality of treatment but at least I had it. I was able to take off school to go into residential (which my insurance not only covered but paid for in full). I haven’t been denied any claims by insurance. I’ve switched therapists a few times to find the right fit and now have one at home and school. My dietitian is amazing and works specifically with EDs. I say I am lucky because all of this means I have greater chance at recovery. It still isn’t easy, but I also could never be where I am if I hadn’t had this support.

Eating disorder awareness is personal for me. I am forever changed by living with an eating disorder. This is for myself but also for the millions more struggling along with me. I know what it’s like. I know how serious these disorders are. I know how alone you feel. I know the hopelessness and being out of control. Because of this, I want use my voice to give others with eating disorders the ability to speak out, a society full of education without stigma, and treatment they so desperately need.

Assuming you aren’t struggling with an eating disorder, why should you care about raising awareness today at all?

  • If it isn’t you, it could be your family member, friend, neighbor, teacher, child, etc. In some populations, such as college, up to 1 in 4 people have EDs.
  • You may not know anything about eating disorders. While you may assume that’s just fine, consider how many people with eating disorders you’ll know over your life.
  • Others need education about eating disorders too.
  • People with eating disorders matter. They deserve acceptance, support, and professional help.
  • Eating disorders are extremely low on funding (which leads to less research, treatment, etc). Funding per person, according to NEDA’s 2011 study: Alzheimer’s-$88, Schizophrenia-$81, Autism-$44, EDs-$.93.
  • Eating disorders are serious and need intervention, which can only happen if we have a greater availability for quality treatment.
  • Better laws and policies regarding EDs are necessary to combat them.
  • Together we can change the lives of millions all over the globe.

My hope is that one day we won’t have any barriers with recognizing, treating, and supporting those with eating disorders. We cannot get there without a global, communal effort. Please join me and thousands more in the first World Eating Disorders Action Day!

To get involved:

  • Use #WeDoAct and #WorldEatingDisordersDay on social media
  • Share the 9 truths of eating disorders video
  • Spread awareness of the campaign, information about eating disorders, etc
  • More ideas here

For more information, please visit the official website, www.worldeatingdisordersday.org and blog http://worldeatingdisordersday.org/blog/

NEDAW16 – Day 5: How to help

Your daughter is diagnosed with an eating disorder after you’ve watched her struggle with food and exercise for months. An old friend finds herself in residential treatment. Your college roommate tells you about the disease that he’s had for years. A family member grows sick and turns to you for support.

No matter the situation, you’re left asking how you can help this person. As someone who has an eating disorder and knows what helps and doesn’t, I want to provide you with some ideas to help a loved one in their battle.

Listen. It’s simple but so effective. There’s a ton to say about your eating disorder. Sometimes all we need is to be heard and not necessarily be told much back.

Don’t make comments on their bodies. You may mean well, but the discomfort with our bodies so greatly play into the ED. What seems fine in your mind is twisted by the eating disorder.

Make them feel loved and supported. So often we don’t believe we are good enough. Even a simple “I love you and you deserve this” can be so helpful and remind us we aren’t the person we think we are.

Don’t prod them too much. It’s only from good intentions but this could push people away. They’ll talk to you if they need it for the most part. There are of course situations when inserting yourself into their life and creating change is necessary.

Know that you cannot fix them. You aren’t a mental health professional. You’re there for support but ultimately it’s up to the person struggling. Recovery is such a process learning to be kind to yourself.

Educate yourself. To help someone it only make sense that you try your hardest to relate to their struggles. It will make them feel much more comfort around you. Reading stories of those who have struggled can help put yourself in their shoes. 

Ask them what they need. Each person with an eating disorder is different. Some need accountability while others would rather just have someone support them in other ways. The only way to know the best way to approach your loved one is by finding out their needs. Sometimes, they won’t be able to answer it fully, but that’s okay too.

*Please note that these suggestions are not all-encompassing and that you will have to stretch yourself to accommodate your loved one. Support is the best thing you can give them. Its not easy to do but all you can do is try*

NEDAW16 – Day 3: Real or not real?

mockingjay-part-2-real-or-not-real.gif

Real or not real? This is the question we need to ask ourselves when it comes to any belief surrounding eating disorders. This certainly isn’t the easiest thing, given how stigmatized eating disorders are. My hope is that this post will help you distinguish between the truths and lies.

REAL – Eating disorders don’t discriminate. When you’re asked to think of someone with an eating disorder, most likely you picture a white, adolescent or early adulthood middle or upper class woman who is stick thing. This image, although true for some, is not true for all. Eating disorder sufferers can be any race, body type, gender, sexual orientation, age, and socioeconomic background.

NOT REAL – You can determine if someone has an eating disorder and how “sick” they are just by looking at them. While there are some physical symptoms (dry skin, swollen cheeks, hair loss, brittle nails, bags under eyes, etc.), in general people with eating disorders look no different than anyone else. We are not all emaciated, and, in fact, most are within the “normal/healthy” range. Body weight and type is no determining factor. You can die from an eating disorder at any size. Even if you never get medically unstable, living each day with an ED is slowly killing you anyways. How sick, or severe the sickness is, is not something you can tell by appearance.

REAL – Treatment is essential to recovery. Just 1 in 10 people with eating disorders ever get treatment for them. Let that sink in a bit. If we were talking about cancer, diabetes, or basically any other illness, this fact would be considered outrageous. Just as treatment is necessary for any other disease its true for eating disorder recovery. Without treatment, most have no chance at all of recovering.

NOT REAL – Body image is the sole cause of eating disorders. Yes, body image can and does play a huge role for plenty of people with EDs. This is far from the only factor in the development of the disorders, however. There are so many possible underlying issues or situations including, but certainly not limited to depression, anxiety, abuse, self-harm, trauma, genetics, low self-esteem, perfectionism, dieting and stress.

REAL – Eating disorders are deadly. Around 20% of people diagnosed with eating disorders will die from either suicide or complications from the disorder. We lose someone to an eating disorder every 69 minutes, 23 people a day.

NOT REAL – Eating disorders go away after the bare minimum amount of treatment. Eating disorders simply don’t vanish that easily. We’ve had some treatment and therefor are expected to go back to a healthy relationship with food. Recovery takes so much more effort. It can be a very long time until you’re at a healthy place again, and that’s okay.

REAL – Eating disorders are NOT a choice. I really don’t understand why people would even consider for a moment that those with eating disorders would ever consciously choose to live that way. Its miserable, time-consuming, harmful to your body, and consumes you, leaving no room for anything in your life. Why would anyone pick that kind of life?

Please try to take this information with you. Everyone knows someone affected by an eating disorder and these truths and falsities will shape your interactions with them in a positive way.

NEDAW16 – Day 1: 3 minutes to save a life

Today is the start of NEDA (National Eating Disorder Awareness) Week! The theme this year is “3 Minutes Can Save a Life.” A free questionnaire screening for eating disorders and disordered eating is available and can alert either of these problems in around three minutes. The NEDA website also has a ton of information on EDs, treatment options, signs someone may be suffering, how to help people you know with an eating disorder, and much more. www.nedawareness.org


 

When I first discovered that maybe my “problem” with food, exercise, and body image was more than it seemed, I was scared. I had no clue what it meant, or if I was one of “those people” with eating disorders. I combed through articles and diagnostic criteria. For a few days, my mission became discovering as much as I could about eating disorders, hoping to disprove that I could ever have one. I read through well over a hundred stories, trying to use them to show I wasn’t sick. I couldn’t be. I saw images of others, of how dead they seemed when you looked in their eyes. Mine matched, but I couldn’t see it.

In the end, none of these things really helped me. Many of the stories resonated with me but none was convincing enough to prove I was sick, at least in my eyes. I am the type of person who needs research, which I had plenty of, but also concrete results. I wasn’t okay with the “well maybe you have an eating disorder” answer. So I sought proof.

What I came up with was a screening on NEDA’s site very like the one made for eating disorder awareness week this year. After wondering and worrying and disbelief I had my answer: yes I most likely have an eating disorder and need to seek treatment. And thus began my recovery journey.

I tell you this little story because I believe it really captures why we so desperately need to share this new screening tool. If I had come upon this sooner, before I was actually told that I probably had an eating disorder, maybe I could have been in treatment earlier. If my mom, dad, or one of my friends who knew had seen this, they could have directed me to it as well. Earlier detection and placement in treatment means a greater chance of recovery. It truly can take just three minutes to change or even save a life, thanks to NEDA’s screening tool. We need only spread the word and make sure as many people as possible gain access.

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.