To NEDAW and Beyond

Well, #NEDAW2017 is nearing its curtain call.

For those who are often as shorthand impaired as I am, this stands for “National Eating Disorders Awareness Week (2017).” As that would imply, it’s a week, specifically the last week of February, annually dedicated to promoting awareness about, offering help for, and eradicating, eating disorders. Sunday, February 26th, was the first day.

That also happened to be my 21st birthday (what? I’m 21? What is this nonsense? Yup, I am… eek). Considering that a year previous, I’d spent my 20th birthday in a hospital entirely unsure of whether or not I’d live to see another day, let alone another birthday… let’s just say it was extremely significant for multiple reasons. 

I appreciate NEDAW; truly, I do. It is a wonderful way for the eating disordered community to bond and support one another, as well as a great means for others to show their encouragement and love.

But I also take a lot of issue with it. And I’m going to simultaneously attempt to mimic its intent to educate as well as illustrate my qualms with it.

I knew what NEDAW was before I knew I had an eating disorder. I saw an influx of posts from such beautiful people talking about their battle with their illnesses and pleas to those around them to learn more about just how devastating they are. 

Eating disorders are by nature extremely secretive and shameful things, so to take a struggle with them to the public requires incredible strength and bravery. And eating disorders do not see unique identities. They see victims to prey upon. They care not for age, gender, race, sexuality, socioeconomic standing, religion, or any other marker. My eating disorder happens to be cut-and-dry anorexia. The misguided belief that anorexia is a “young, white, female” problem is extremely insidious. Am I a young, white female? Indeed I am. Does that mean that I am a member of the sole population it affects? Absolutely not. The same goes for any eating disorder.

Some people don’t even get so far as to make that mistake, however.

There are those who do not believe eating disorders are real.

This is incredibly sad, and I hope and pray that if you have such a person in your life, you do not let this dissuade you from, or convince you that you do not need, treatment. Unfortunately, just like with any other topic, there will be those that believe it and those that don’t. And while I wish that we could convince all of these people to come around to the truth, that’s impossible.

Then there are those who do not think they are real, but as a result of their ignorance, instead.

Despite the alarming frequency of eating disorders, a lot of people remain unaware of them. These individuals will either stay this way, or, if given enough knowledge, may reverse their thoughts.

Next, we have the people who are aware of the existence of eating disorders, but are largely ambivalent about them.

They don’t negate them, but they don’t really engage with them, either. Similarly, if educated enough, this may change for the better.

There are also those who want to take action to help, but either aren’t aware of how to do so or go about attempting to do so in a completely backwards way.

They may have the best intentions, but sometimes they just say or do the wrong things. That’s likely because they just don’t understand, being on the outside of the illness as they are. There’s more than hope that this can be altered; I’ve seen it done, both by others and myself.

Additionally, there are individuals who are aware, who want to help, and have enough knowledge and experience to do just that.

These would largely be immediate family members, very close friends, or medical and treatment personnel. This isn’t a blanket statement; many people who fall into those relationships categories won’t be at this point. Also, while they may be trained in what to say and do, but that doesn’t mean they understand intimately enough to truly be of assistance. Obviously, medical professionals are best at objectively aiding the eating disordered population, and are exceedingly knowledgeable, but this still doesn’t quite bridge that final gap.

Lastly, but of course not least, we have those of us who have either dealt, or are actively dealing, with an eating disorder, and therefore have a level of empathy and connection that can’t be otherwise obtained.

Again, this doesn’t mean that this is true for everyone in this group, which is really awful. However, I’ve found those I’ve met who are also struggling to be an incredible source of strength, support, and inspiration.

Now that I’ve categorized at quite some length, here are some facts that are irrefutable no matter where you or anyone else falls on that spectrum.

According to several sources of information, including the National Eating Disorder Association website itself, Eating Disorder Hope, ANAD, ANRED, as well as countless studies:
  • It is estimated that millions of people in the U.S. are afflicted by an eating disorder.
    • In researching, this number was disputed; however, the numbers are astronomical. Some sources reported 20 million, some 30, and some in between.
    • Again, somewhat disputably, there is a 10:1 ratio of women to men in this population. Rates will differ from year to year, area to area, etc.
    • Additionally, around 40% of people report either having had/having an eating disorder or knowing someone who did/does.
  • More than 50% of the general U.S. population will engage in eating disorder behaviors, such as restriction, bingeing, purging, compulsively exercising, etc. during their lifetime.
  • Of those who have a condition that warrants diagnosis and categorization:
    • Approximately 1 in 100 have anorexia nervosa (AN)
    • Approximately 1 in 25 have bulimia nervosa (BN)
    • Approximately 1 in 75 have binge eating disorder (BED)
    • Approximately 1 in 50 have EDNOS (eating disorder not otherwise specified), also known as OSFED (Other Specified Eating or Feeding Disorder). OSFED is the term used in the DSM-5.
    • There is also an even lesser-known diagnosis called ARFID. (Avoidant/Restrictive Food Intake Disorder) involving an extremely unhealthy resistance to many foods.
      • This is not synonymous with picky eating. It can be a lifelong condition and is much more grave and debilitating.
    • Finally, there is a condition known as “orthorexia,” which is defined as a subtype of anorexia that involves consuming very limited foods, oftentimes due to perceived health value. This is not a confirmed disorder.
  • While the statistics for the U.S. are generally most available, it is estimated that around 70 million people worldwide will suffer from an eating disorder at some point.
  • Anorexia is the eating disorder with the highest mortality rate, at 4%.
    • It is also the deadliest mental illness.
  • Bulimia has a mortality rate of 3.9%.
  • OSFEDs have a 5.2% mortality rate; however, this encompasses multiple diagnoses
  • Eating disorders are frequently comorbid (present along with another mental illness) with illnesses such as depression, anxiety, OCD (obsessive compulsive disorder), BPD (borderline personality disorder) and other mood instability disorders, such as bipolar.
    • There is also an extremely high genetic correlation.
  • While adolescents are the age group most commonly affected by an eating disorder, they are observed in many other age demographics.
  • Without treatment, as many as 1 in 5 individuals will die due to their eating disorder.
    • There is a far greater likelihood that someone will go without treatment. This can be due to a refusal to go/acknowledge the illness, a lack of knowledge of the existence of either the disorder, treatment, or both, socioeconomic factors, and general availability of treatment facilities.
  • Recovery is possible. It’s estimated that around 60% of people achieve full recovery, ie: no longer engaging in behaviors and maintaining a healthy weight.
    • However, that number is constantly fluctuating, and it also means that another 40% will not achieve recovery. This results in a lifelong battle, often ending a premature death.

That’s a lot of information to absorb. It’s all absolutely essential and important.

But for some perspective, I’ll use myself as an example. 

I can trace my eating disorder as far back as around the age of ten. This is when I first recall being negatively conscious and ashamed of my body, resorting to disordered eating habits to compensate. The majority of this involved restrictive behaviors, though I also would end up so hungry that I would overindulge. This is known as a binge-restrict cycle; it was never broken by episodes of purging.

I do have a family history of eating disorders. My relatives are also densely affected by mental illnesses in general, such as depression, anxiety, OCD, and others. I myself have been officially diagnosed with major depression, generalized anxiety disorder (which also includes social anxiety and panic attacks), OCD, BPD, and of course, my anorexia nervosa.

While there’s definitely dispute over whether or not “orthorexia” is a real thing, I certainly exhibited traits. The difficulty stems from the way it overlaps with traditional anorexia.

My anorexia manifested itself in two primary ways: extremely restrictive eating and compulsive exercising. The restriction has always been the more pervasive behavior; it began long before the exercising came in. And it is absolutely the harder behavior to break. I have mostly refrained from compulsive exercise for months now, either due to being prohibited by an alarmed bed, watchful staff, or just a program in general, or because I now find the idea of exercising upsetting (it would remind me of where I used to be). Restricting can involve many things, which is another reason why it’s more difficult to stop.

I had an eating disorder at my lowest weight, far below the mark of what is considered “healthy,” clinically speaking. I had an eating disorder at my highest weight, which was actually somewhat above what doctors consider a healthy BMI for someone like me. And I had an eating disorder at virtually every weight in between.

After numerous brushes with death, some far closer than others, I was fortunate enough to find a treatment center that actually began to gain some ground. Prior, treatment had been ineffective. While I am eternally grateful for the second chance this has afforded me, it’s only set my feet on the path to recovery. I still have a long way to walk.

Also, I am far from “recovered”; let’s dispel that right away. I am out of treatment centers and now attend regular appointments with a therapist, a dietitian, and a doctor with far less frequency. I have a meal plan that I attempt to comply with. My weight is no longer in the danger zone and I do not have complications like organ failure or hair loss. But like I said, I’m struggling. I engage in restriction far more often than I would like, as well as making disparaging comments about my appearance. That doesn’t even include the nearly incessant negative, hateful thoughts.

That points to body dysmorphic disorder (BDD), which is also highly comorbid with eating disorders. It essentially refers to a distorted perception of one’s appearance; an inability to see the truth. And it only involves the individual suffering from it. They see others with perfect clarity. It’s like having the worst funny goggles ever on.

Even if I were to manage to get such a handle on my disorder that I ceased all behaviors, I’d still likely be dealing with the BDD. This is largely because the physical complications and damage are usually a lot easier to heal than their mental counterparts.

No, recovery doesn’t mean completely zapping your eating disorder out of your life as if it were never there. For me, it would mean eating normally without a meal plan, including proper variety and indulgences, exercising healthily and for enjoyment, and not letting any negative thoughts, albeit less common, get to me. And similar things would be true for a great majority of eating disordered individuals.

Like I said earlier, at the beginning of this incredibly long creation, there are a lot of reasons why I think NEDAW is great. All that stuff I mentioned earlier; those stats and facts? NEDAW can help make them more accessible and known. It’s a way to unite us with all our brothers and sisters and provide a great sense of camaraderie. And there is a lot of inspiration, hope, and positivity to draw from this week.

My first issue is with the name itself. “National Eating Disorders Awareness Week.”

A week? I understand the concept of dedicating a particular chunk of time to a condition. Phenomenons like the ALS Bucket Challenge or everyone going pink for breast cancer awareness are absolutely wonderful things. However, I personally feel that having this “week,” carries a connotation that this is the time to educate. Every day is the time to educate. Always. Don’t save the post for the last week of February.

Secondly, the event seems to invite sharing “before” pictures of oneself during their unchecked illness.

Don’t get me wrong; I’ve posted side by side pictures and there are photos of me during my most ill floating around. But I’ve since realized that these don’t help anyone. I’ve made my recovery album private, I place warnings and disclaimers on any post that references my condition explicitly, and if I do end up posting a “transformation” paragraph, I make sure it’s not a full body shot, because that massively increases the distress. I’m working on not doing these comparison posts at all.

When I was really sick, I had no idea how I looked. It was scary. Everyone else saw this frail little stick girl and I saw the most disgusting blob ever. I can see the horror when I look at those images now. But I still don’t see it as poignantly and clearly. I often wish to look like that girl again. And because of this blindness, I shared photographic (emphasis on the graphic) evidence of how compromised I was. I’ve made posts that go even deeper, but again, those come with warnings. Pictures are worth a thousand words, for sure. At least. And mentally compromised as I was, I could not fathom how my posting images of a girl who was emaciated was detrimental.

Well, here’s how: it makes others feel uncomfortable, sad, scared, and can encourage comparisons and reversions to behaviors. And it makes me feel this awfully masochistic sense of nostalgia; to long to be that girl again. There’s no benefit. I used to insist that keeping these pictures gave me a jolt of inspiration to make progress, but that’s a lie. 

There’s nothing brave about sharing a picture of you that illustrates a broken, defenseless, hurting heart and soul. At worst, you’re sharing it to incite comparisons. At best, you’re unaware of how it could affect others and you yourself. There’s nothing good about dredging up your past while you’re trying to live in the present and work towards the future.

I don’t really see a problem in posting a picture of yourself that is not so palpably explicit, in order to demonstrate that eating disorders don’t, in fact, have a size. As I mentioned earlier, I had an eating disorder at all sorts of weights. Obviously, when people think of eating disorders, the image that first pops into their head is of what’s essentially a walking skeleton. But that’s just not true. And power to you if you want to fight against that perception.

I also see no problem with sharing a picture that shows you in recovery. Not necessarily kicking ass and taking names, either. But far enough into the process that your body and health is not upsetting to anyone. What that looks like will clearly differ from person to person. But I think that if you’re mentally capacious enough to engage in recovery, you know what’s right and what’s not.

My issue stems from seeing pictures that just blatantly scream “I HAVE AN EATING DISORDER!” There’s a very important difference between acknowledging that with your words and by providing visual evidence. Again, you’re at worst trying to rile people up and invite comparisons, and at best, you’re just unaware. Either way, nothing good comes of it.

I’m not saying this to condemn those who have posted such images. Hell, I’ve done it myself, as I noted numerous times. But I’m stopping. Because it’s just destructive. To everyone. And I’ve refrained from doing these “transformation” thingiemajiggies for some times now; I definitely didn’t post one for NEDAW 2017. Please, don’t do it either.

Third, I can’t shake the sense that there’s something inherently shameful about the way this event is expressed and promoted.

It just carries this… disconcerting insinuation that you have to admit and own up to your disorder. Like it’s something wrong with you. Something that makes you broken, or lesser, or fragile, or different. Something that’s a dark spot on the canvas of your life.

It’s similar to how I feel about the notion that people have to “come out” if they identify with a different sexuality, orientation, etc. than the status quo, ie: heterosexual, monogamous, and cisgender). Why on earth is that so? Is their identity somehow reprehensible? Is it somehow less normal; less permissible; less valid? No. It’s their identity. The end.

Your eating disorder is not you. It is a part of you, but it does not encompass your whole being and existence. You should not feel like you have to open up wounds and invite people into darkness when you talk about it. Is it pleasant? No. But does it need to elicit this feeling of shame and regret? Absolutely not.

You should NEVER apologize for your eating disorder and what it’s put you through. EVER. You are not lesser. You are not irreparable. You are not a failure. You are beautiful and brave.

And last, it puts a sort of wall up.

I don’t dispute that it opens up you and your world to everyone else. I don’t dispute the value of sharing. But please, don’t just share something on social media. Don’t just attach a couple hashtags. Do what you wish and feel is right. Of course. But I implore you to share your story and thoughts outside of the internet. Talk to your family and friends. Attend recovery seminars. Write a narrative. Work up the ability to help those who are suffering. Don’t pin it on your chest like a reason to be admired and patted on the back. But don’t hide it under layers and layers like it’s something to be ashamed of.

I posted something about my story for NEDAW on social media as I felt was my due diligence. After all, I started this blog in the darkest depths of my anorexia, and initially that’s all it was for: chronicling my journey toward this ambiguous thing called “recovery.” Since I’ve become healthier and regained physical and mental faculties since then, I’ve started trying to incorporate other things and direct the focus away from my monsters.

Don’t get me wrong: I’ll never stop talking about mental health. About how stigmatized it is, how misunderstood, how overlooked, how generalized, how demonized, how devastating… the list goes on and on. I have my illnesses, yes. I’m not ever going to rid myself of them. That’s unfortunately not the way mental health works. However, I refuse to let them consume me and become my identity, or to claim my life. These numerous illnesses are so very real, and so very painful. They are irrefutably real.

But I digress. There will always be infinite words on this subject and infinite need and love in my heart to speak about it. Because conversations and dialogues are essential.

I sincerely hope that you learned something from this post. I hope it’s been positive. I hope it’s helped open your eyes to the reality and horror of eating disorders. I hope it’s encouraged you to want to help and be active. And if you feel that you might be suffering from one, I hope that it’s inspired you to seek the help you need and deserve. I wrote it with the intent of creating those aforementioned conversations and dialogues. It’s largely my opinions and thoughts. Those are, of course, not the bottom line or always correct. But I felt the need to express them, and that’s what this blog is for, after all…

Now that this week has drawn to a close… happy #NEDAW2017, everyone. I am forever sending peace, strength, hope, and love, all of your ways. Whether it’s NEDAW or not. Because those are things everyone should always, always have. Including you.

Thank you for reading. ❤

(Image credit to The Mighty)

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2 thoughts on “To NEDAW and Beyond

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