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:

Mistake/”failure” -> strong emotions -> ED thoughts and behaviors

I’ve noticed this has been a pattern in the past, but yesterday post clinical brought it back to the extreme. I was rushed to grab my things from the locker room to get to post-conference, and I ended up grabbing someone else’s coat that was very similar to mine. I didn’t notice for the almost hour I was there, and only realized after taking the shuttle back to staff parking. This lead to an immediate freak out. Would this person call security? What if they have to wait a long time and aren’t able to go home? Will they accuse me of stealing? Are they going to freak out too? These thoughts kept coming and I began to panic. I ended up calling my professor, which was a second huge mistake. I forgot that she was in some meeting (which is why we ended early), so when she responded with that immediate guilt rushed over me. Suddenly I had screwed up twice and had no way of contacting the floor secretary. Instead, I had to sit in my emotions and wait for the next shuttle. It took over a half hr to get back. I quickly went up to the floor and did my walk of shame as the secretary led me to the locker room. I ended up switching out the coats without anyone noticing, thankfully. It should have been over right then, but that was far from the case.

Pretty much immediately after discovering my first mistake, Ed made up a new rule: no eating lunch until I returned it. This wasn’t so bad in my mind. It was around 12:30 at that point and waiting another half hr wasn’t going to kill me. As the disordered thoughts and emotions strengthened, Ed created more rules. I couldn’t eat until I got home (which would be an hr or so after getting up to the floor). If the person was angry or anything, I wasn’t able to eat at all. I could only hit x exchanges for the day because I didn’t deserve food. Exercise was necessary and needed to be vigorous to make up for my inadequacies. Even after all was fixed and I left the hospital, the guilt/shame, frustration, anxiety, disgust, and intrusive thoughts persisted.

It’s been around 22 hours since everything went down and I am still preoccupied with it all. I can’t get over my mistakes and how that must define me as a person. As much as I truly want to let this go and focus on other things, I don’t think that will be easy at all. It seems a little ridiculous at this point. That doesn’t change how I feel right now.

I want to try to accept where I am instead of beating myself up even more for feeling the way I do. I have to be patient with myself. Today begins the fight. I want to only focus on behaviors for now as a priority, because the thoughts can return later. This cycle can’t continue to snowball and affect my recovery any more than it already has.

Taxes and self-worth

It may see pretty odd that I would group these two things together, but it’s actually a big realization I had following this past weekend. Right now we’re in prime tax filing season in the US. I am no expert on taxes or anything, but the part I do understand is deductions. Whatever deductions you have will lower taxable income and increase taxes you get back. You can itemize deductions and get more back if you have enough over a certain threshold. Examples of deductions include donations to charity, having dependents or children, and medical/dental expenses. The goal then is to find as many areas to qualify for this since you can receive more money back.

My dad was working on our taxes Saturday when he called me into the bedroom. Originally, he wanted to try using medical expenses I paid to get taxes back based on my taxes, but I didn’t make enough income for that.

I knew that medical would be an example of deductions, and we have paid an insane amount of money this past year towards my treatment. I’m talking thousands of dollars (and we still have a dept, but anyways). When I found out that we could possibly get more money based on that amount, I went into overdrive. I spent at least 2 hours pouring through all of my payments towards IOP, the one for PHP, and residential. Once I had that number, I needed to subtract out what we did through insurance so it wasn’t counted twice. It was a super long process, but I had this intense need to do it. Ulltimately, my parents will receive double the refund of what they were supposed to before medical came into the picture.

There was a part of me that wanted to do this only to help them out. More money means more security, less stress, etc. What I’ve realized is that my drive to work so hard wasn’t entirely a healthy thing.

I feel like I need to do something in return for every way I’ve harmed my parents. They had to deal with all of the stress that comes along with loving someone who has mental illness. I tried my best to prevent it, but they did share the burden of medical expenses. Because I wasn’t able to work, I needed help with things like gas and insurance. These situations and many more are proof that I must be a burden. I try to fight those thoughts, but it’s difficult when there’s all of this “evidence right in front of me.

Helping them in this way reduced some of my guilt. I can’t be that bad if they get something back for dealing with me. I still feel terrible, and maybe I always will. Even if it’s not in a healthy way, my contribution here has increased my self-worth in the tiniest way. If I had instead failed to get a deduction after all they do for me, it would have multiplied the opposite.

I don’t want to be defined by how much I can “repay” others. That’s quite obviously not a healthy view of myself and makes my self-worth completely dependent on acts of service. While doing things for others can benefit me in the short-term, it will quickly become an issue. I need to build genuine compassion for myself so I can reduce this guilt and shame I constantly experience.

I loved how I felt after helping out with taxes; however, shortly after I went right back to self-loathing and negativity. My goal (which is far from easy) is to write and look at often reasons why I matter, am a good person, deserve love, etc. I am trying to believe that I deserve this grace, no matter how much I feel like I’ve failed.

Dear Meijer,

Yesterday afternoon, I found myself perusing your store. This is nothing out of the ordinary. It’s rare for me to go a week without shopping at one of my two favorite locations. I truly enjoy spending time there and consider you my #1 go-to for groceries and just about anything else. Yesterday started off normally, until I walked by the kitchen area. I noticed some adorable looking jars and other miscellaneous containers. I just glanced over, until my eye caught one word: calorie. I seem to have laser precision in noticing anything to do with food, exercise, calories, and weight loss. Naturally, I went over to investigate further why this jar had calorie written on it. What I saw makes me sick to my stomach

20180204_143527.jpg
“Calories (noun): tiny creatures that live in your closet and sew your clothes a little bit tighter every night”

I’m sure the fact that you chose to stock this in your stores was harmless. A few people probably got some chuckles out of the definition here. Maybe there were some “oh yes, they’re terrible little things” or “I have to watch myself around them.” No matter how innocent or light-hearted the choice to include this was, it is not a laughing matter.

Perhaps most people won’t be ill-affected by this jar. I would guess that maybe a couple even notice it each day. What I want you to see is someone who would be hurt by it. This woman comes into your store and finds this jar. She doesn’t laugh at it, but instead believes the negative view of calories. She buys the jar and puts her favorite treat, chocolate chip cookies, inside. Every time she wants a cookie, the words on the jar deter her. She stares at that jar every single day, long after the treats inside have gone stale. All she can picture when she thinks of some of her favorite foods are tiny monsters who make her balloon out and gain weight.

The woman above may be hypothetical, but trust me there are many out there with similar thought patterns. I, for one, don’t need a jar to remind me of all the thoughts that takeover my mind much of the day. I don’t need anything to make my views of self, calories, and good any worse than it already is.

Calories are nothing but a unit of energy, just like an amp, volt, or watt. They cannot be inherently bad or good. They are a way to measure the energy in food we eat and activities we do. Why then, does this jar you sell give them such a negative view?

The answer is diet culture. Our society is immensely focused on size, weight, shape, good and bad foods, diets, cleanses, on and on. It causes us to be uncomfortable in our bodies and with ourselves. By stocking this jar in your stores, you are perpetuating diet culture and silently stating that thin is the best way to be.

I am not mad at you specifically, but I am angry at the culture that says this is okay. I know that you’ll probably never see my letter, but if you do, please consider what I’ve laid out here. Stocking this and similar items isn’t a joke. You will never know how many it will negatively affect. I urge you to really sit down and think before another item like this one is chosen for your stores.

Sincerely,

Emily

February 13th: then and now

One year ago was one of the best days I have ever had. It changed my life and gave me so much hope. I doubted myself entirely and prepared for the absolute worse, as I usually do. Thank God that wasn’t necessary. February 13, 2017 I received my acceptance letter into the nursing program.

That feeling was incredible. I cried tears of joy because finally all my hard work had paid off. Taking off the semester for residential, struggling through strong ED thoughts and behaviors, an extra year of school, depression, and the huge amount of stress I encountered didn’t take my dream away from me. The fact that I could push through all of the barriers showed my strength. I felt proud for all I accomplished just to get there.

One year later brought another amazing, anticipated, life-changing day. Yesterday I was able to have an off-unit experience in the NICU (neonatal intensive care unit) at our children’s hospital. I have been interested in pursuing this field for a long time now. Part of the reason I switched to nursing from PA is because there are NNPs but not neonatal PAs, so if I go to graduate school I could still work there. I’ve read countless blogs, personal stories, and other accounts written by NICU nurses/families, but still had no idea if putting it all into practice would continue to be a good fit. I wanted so badly to experience it hands-on. I cried when I found out that I was one of the people who would go visit for the day (and I get to see the OR, so double fun for me!). I’m honestly surprised I didn’t start bawling right in our clinical meeting, aha. I counted down the days with such excitement. I didn’t even care that I had to wake up at 5am while everyone else in my group got the day off. I thought it would be worth it, and I was so very right.

I still can’t believe how lucky I am to have spent a whole day in the NICU. The nurse I followed was great and did everything possible to maximize my time there. She has worked in the NICU her entire nursing career, over 40 years. We took a tour of the floor, which is HUGE and holds up to 110 babies, and I got to see everything from older babies who just needed a little bit of help to micropreemies  born 27 weeks gestation or less. She had 3 patients, 2 of which were former micropreemies she took care of for a few months and the other an older preemie about to go home. It was really interesting seeing how a g tube works, watching her interaction with parents, observing an ophthalmology exam, and being able to help in any way that I could. I got to feed one baby through his g tube, and despite being super anxious I did well with it. One of my favorite parts, of course, was holding sweet babies. I went back and forth between the two. The one was a little “feisty/drama queen” and didn’t even want me to leave her after I put a binky in. She was teeny while the boy was 2 kilos heavier, even though they were the same gestation born a day apart. It’s pretty crazy how different the growth and development is for each baby. Another part I truly appreciated was how willing she was to explain everything, answer questions, and share her experience as a nurse. She was drawn to NICU nursing for very similar reasons as I am: building a relationship with the family, being able to watch the child grow stronger over time, celebrating when they finally go home, and very involved hands on care. Despite the long hours and craziness, her choice to stay for such a long time proves what a great area this is.

Yesterday has 1000% confirmed how much I would LOVE to work in the NICU one day. It’s one thing loving the idea, but experiencing it in real life just showed that it is what I thought it would be. Of course I may change my mind in the next year and a half before I actually work as an RN, but I am certain that NICU is going to be a top contender no matter what.

I honestly haven’t had this amount of joy in a very long time. I couldn’t stop smiling (at least internally considering some of what I saw was hard). It just feels right. I’m not really sure how else to explain it.

I want nothing more than to return one day, but next time with blue scrubs and a badge that says “RN” 🙂