As I am sure most of you have realized, eating disorders are not diseases that just devastate the bodies and minds of sufferers, they also completely ruin families. Parents sometimes must take leave off work in order to focus all their attention on caring for their anorexic or bulimic child. Siblings of ED sufferers end up feeling abandoned and forgotten as their mom and dad spend most of their waking hours on their ill child – shuttling them to various doctor’s appointments, supervising their arduous and emotionally-draining mealtimes , and visiting them while they are in the hospital. When a family member has an eating disorder, everyone has no other choice but to make sacrifices and put their lives on hold.
Since my official eating disorder diagnosis over 5 years ago, my family has had to miss out on enjoyable social events, dining at fine restaurants, and even memorable family vacations. My disease has literally been holding my mother, father, and little sister hostage and so when my parents suggested that we head on over to Arizona for spring break, I agreed (although it took me awhile to built up the courage to do so). I was well aware of how challenging and anxiety-provoking this five day trip to the American southwest would be, but it was time for me to stop letting my disease hold my family back from doing the things they wanted to do. Just like every other human being, they deserved to smile, to laugh, and well . . . to just live!
And so, on March 27th we boarded the plane to Pheonix, Arizona and arrived late that evening. After spending the night in a hotel, we hit the road and headed south to Green Valley, Arizona – where my grandparents live during the winter. As I looked out of the car window, I could feel my anxiety morph into astonishment and awe. The landscape looked almost otherworldly to me. There were no lush oceans of green grass, tall trees bursting with their fresh springtime blooms, or dark blue rivers filled with freshwater fish. Instead, the flat ground was completely naked, revealing its dry gold-colored soil. Speckled across the arid landscape were prickly, greenish-yellow cacti and other forms of bizarre-looking vegetation. Towering over the level desert plane where huge, majestic mountains. For the entire 2 hour car ride, I stared out of the window, memorized by these gigantic guardians of the Arizona desert.
Once we arrived at my grandparent’s hacienda-style home in Green Valley – a town comprised almost entirely of elderly “snowbirds”- my grandparents gave my family a tour of the community. After that my sister, grandma, and mom all went swimming and my grandpa and uncle headed on over to the bowling alley. As for me, I went with my dad to visit an old family friend who apparently lived just a few blocks away from my grandparents’ hacienda. Other than that, the day was pretty uneventful.
The next day (Tuesday, March 29th) was probably the best day out of the whole entire trip. My dad, grandma, mom, sister,and I spent the morning exploring the Arizona-Sonora Desert Mueseum – a 98 acre outdoor experience that seamlessly fuses a zoo, aquarium, botanical garden, and natural history museum into one must-see Tuscon attraction. That afternoon, my dad spent some quality time with my Grandpa and uncle golfing and my mom, sister, grandma, and I decided to head on over to Madera Canyon. As we drove through the canyon, I was absolutely amazed by how quickly the landscape transformed itself. As we got higher in elevation, the cacti and parched soil all but disappeared and was replaced by lush, green trees and calming creeks. Looking back at the entire trip, the drive through Madera Canyon was probably the only time when I was truly relaxed and at peace.
Once Wednesday came around, I wasn’t too worried anymore. After being mesmerized by the beauty of Madera Canyon, I had developed a false sense of security, believing that the rest of the trip would be a breeze. I could not have been more wrong.
The start of the day was perfectly fine. My mom, dad, grandma, sister and I all crammed ourselves into the rental car and headed to the White Elephant, a ginormous thrift store that had a pretty good selection of one of my favorite things in the world – CHEAP BOOKS!
After the White Elephant, my dad decided we’d all go to Kit Peak whether we liked it or not. He claimed it was a short 30 minute drive from where we were, but once we drove for those 30 minutes, we found out my dad’s calculations were wrong and that Kit Peak was another hour or so away. It was nearly noon and everyone had become “hangry” as their stomachs rumbled away. I, on the other hand, had completely lost my appetite. The anxiety of having to switch plans so abruptly left me completely devoid of any sense of hunger.
My dad decided he’d head on into Tuscon in search of a place to eat. I was praying he would just stop at a Subway where I could munch on a vegetable salad, but that’s was unfortunately not the case. Instead he decided to stop at an authentic Mexican sit-down restaurant, which was literally my worst nightmare. Not only am I deathly afraid of Mexican cuisine (all the sour cream, cheese, and fats are enough to make me go into an anxiety-induced coma), I also DESPISE sit-down restaurants. Unlike Subway, I can’t watch the chefs prepare my food. I have no idea if my dish has any hidden fats or if they prepared my meal with buckets upon buckets of calorific ingredients.
As we sat down at our table, I flat out refused to look at the menu. My palms began to sweat, my mouth opened wide as I began to hyperventilate, and my legs kept on jiggling – all classic signs I had been consumed by a massive anxiety attack. As I was trapped in this uncontrollable state, my dad kept scolding me – telling me I was acting like a child, that I needed to grow up, that I was an embarrassment. . . .all the typical things he says when my anxiety and eating disorder take over. My mom on the other hand, tried to be a bit more helpful. Instead of repeating my dad’s unsympathetic comments, she noticed I was struggling and attempted to calm me down. She told me in a soft, soothing voice that everything would be alright and then proceeded to help me picked out a dish that I was comfortable with on the menu. By the time the waiter delivered our lunches, my mom had helped me quiet my eating disorder voice and I was able to fully collect myself. At the end of the restaurant ordeal, my mom said she was proud of me and obviously, that meant a lot. Although my dad said something similar to me, I could tell by the tone of his voice that he was disappointed in my behavior. He failed to realize that this “behavior” I exhibited was not me trying to act unruly and ruin the trip, it was a manifestation of my eating disorder – an uncontrollable medical condition.
Unlike Wednesday, Thursday was benign. I stayed at my grandparents’ hacienda most of the day, working on my coloring books. At around 2:30 in the afternoon, my dad and I drove down to visit the San Xavier Mission. Since my father and I both are quite spiritual people (my dad is a Methodist pastor while I on the other hand am still searching for a religion that suits my beliefs), I thought that this visit would give my dad and I the opportunity to bond and enjoy ourselves. Even though it was a good experience, the wall that was built after the restaurant fiasco continued to divide my dad and I. We were silent most of the time we ere there and on the drive back to my grandparents’, we never said a single word to each other.
On Friday, we returned to Wisconsin. It’s Sunday now and my dad and I still are not really talking to each other. We continue to quarrel and I honestly I am heartbroken. I only have a couple months left to make memories with my family before I head off to North Central College in the Fall. I don’t want start this next chapter in my life without mending my strained relationship with my dad, but I don’t know where to begin.
You’ve found the best eating disorder treatment center, packed your suitcase to point where you are still shocked you got it to close, and now you are off – off to spend the next couple of weeks or months literally fighting for your life.
Currently the relapse rate for anorexic patients ranges from 9% to 65%, with the highest rate of relapse occurring during the first four to twelve months after treatment. For bulimia sufferers, the numbers are just as frightening. Within six months of receiving treatment, 30% to 50% of bulimics will relapse. Now we all know that relapses occur for many different reasons, but I would argue that one reason a person falls back into their disease is that they didn’t taken advantage of everything their treatment center had to offer. So in this post, I am going to tell you the three things I wish I had been told on how you can get the most out of eating disorder treatment.
1. Remission Never Occurs through Osmosis
If you want to get into remission, you must take some accountability and play an active role in your treatment. Would you expect to get rid of an ear infection by just standing by a bottle of antibiotics? Of course not! Then please tell me why you would expect to get your eating disorder into remission by just passively sitting through groups, hiding things from your treatment team, and not completing CBT and DBT homework? You have a disease that can and will kill you if you don’t step up. Now is the time to harness every ounce of strength and courage you have and fight for your life.
2. Sickness is NOT a Competition
The one thing I remember the most about my stints in residential and inpatient was the constant competition between the patients to be the sickest. If one person said they didn’t eat for two days straight, another patient would chime in and proclaim that they didn’t eat for three. When you go to eating disorder treatment, never enter this toxic tournament. You are in treatment get well and regain all that your eating disorder has stolen from you, not to brag about your life-threatening fasts and the amount of time you spent nearly killing yourself on the treadmill.
3. Don’t Play a Role in the Soap Opera
When you’re a patient at a treatment facility, you are living in close quarters for quite a bit of time with a bunch of other people. You don’t need to be a rocket scientist to understand that this is the perfect recipe for drama so intense that it would make even the Kardashians look relatively normal. It is incredibly easy to be consumed by it, but remember, every single moment you spend playing a role in treatment center drama, is a moment you lost working towards getting well. Don’t let drama derail your path to remission! Focus on yourself and yourself only!
You’ve called the treatment center, completed their bucket load of tedious paperwork, argued with your insurance company (and FINALLY got approved), and have your admission date marked on your calendar.
That’s right my friend. You have just completed the hardest part of eating disorder treatment – actually accepting the fact you need help and getting yourself admitted into the best treatment center for you.
Now all that’s left to do is pack and if you’re anything like how I was when I was told I had to go to treatment, you probably have no idea what to stick in your suitcase other than a couple of basics.
But don’t worry anymore about packing because I’ve got you covered. This very blog post will tell you the TEN ESSENTIAL THINGS that you definitely shouldn’t leave for inpatient or residential without!
1. CuddlDuds Leggings
During refeeding, my CuddlDuds leggings were lifesavers. Unlike traditional leggings that are incredibly tight and extremely uncomfortable for eating disorder patients, CuddlDuds mold themselves to your body to the point where it is almost like wearing a second skin. Also, they continue to stretch and to mold themselves to you throughout the weight restoration process. I can tell you right now that when I wore these leggings during weight restoration, they never felt like they were becoming too tight. The other cool thing about CuddlDuds is that THEY KEEP YOU WARM and that is a BIG plus for those who are severely underweight due to their eating disorder and cannot regulate their body temperature.
2. Real Happiness: The Power of Meditation
Last summer, I was constantly trying to keep my head above water in a merciless sea of anxiety. Every day, panic attacks completely consumed me and eating disorder thoughts blazed through my mind like unstoppable fire. My family was at a loss with what to do with me. I was going to weekly therapy, meeting bimonthly with a psychiatrist, hell – I was doing EVERYTHING I was suppose to and despite that, my mind was still being devoured by mental illness. That’s when my mom started searching the web in hopes of finding something – ANYTHING – that could get me back up on my feet. She ended up discovering a class on mindfulness meditation that was being held at a nearby hospital. Within a couple of weeks, I started the class and was given the book “Real Happiness: The Power of Meditation” by the instructor. Every week, we read a few chapters, discussed what we read, and then worked on meditating in class with the help of the instructor. I cannot tell you how much this book as helped me. It even comes with a CD so you can listen to some guided meditations and practice! I would HIGHLY recommend getting this book and bringing it with you to read in treatment. Not only will it give you something to do during those LONG hours of downtime, it will also help you find ways to cope with the stresses of getting you eating disorder into remission.
3. The Rumi Daybook
Now that we’re on the topic of books, let me tell you about “The Rumi Daybook.” This book contains a poem and teaching for every single day of the year by the Jalāl ad-Dīn Muhammad Rūmī, a 13th century poetic, theologian, and Sufi mystic. His beautiful poems are always laced with a level of wisdom that is so incredible, it is almost otherworldly. If I am struggling, I have always found that taking the time to open this book and to read one of Rumi works allows me to calm down and be at peace with myself.
4. Guided Mindfulness Meditation CDs by Jon Kabat-Zinn
Remember how I was telling you about how much mindfulness meditation has helped me? Well, here’s the set of CDs I use all the time to practice meditation! The maker of these CDs, Jon Kabat-Zinn, is actually executive director of the Center for Mindfulness in Medicine, Healthcare, and Society at the University of Massachusetts Medical School. Not only has he written several books on the practice of mindfulness meditation, he is also the author of many intriguing scientific papers on the clinical use of meditation in medicine and healthcare. So my skeptical friends be rest assured that this guy is legit and you have my word that his guided meditation CDs have been one of the most helpful tools in my battle against my eating disorder and anxiety.
5. CD Player
I’m guessing you saw this coming since I have already suggested two items that involve or are CDs. Plus, most (if not all) treatment facilities are against patients bringing in electronic devices that have a camera so if you are going to want to listen to music, your iPod or iPhone is just not going to cut it. Personal CD players are pretty cheap and you can easily order one on Amazon.
6. Ear Plugs
I firmly believe that ear plugs are essential when it comes to eating disorder treatment. If you have ever been to treatment, you know they can be loud – obnoxious nurses who can’t seem to shut their mouths, patients yelling when staff members inform the patient that they do in fact have to clean their plate or drink an Ensure, patients fighting among each other, the list of noisy situations just goes on and on. If you want to relax while in treatment, I highly suggest you find yourself some high-quality noise-canceling ear plugs. Believe me, they are sanity-savers.
7. Knitting Supplies
Knitting is something that I find incredibly therapeutic. It forces your mind to focus on something else than ED thoughts and obviously, that comes in handy when you are fighting an illness as vicious as an eating disorder. Don’t know how to knit? No problem! There are several awesome knitting kits you can order on Amazon.
8. Adult Coloring Books
Coloring isn’t just for hyperactive toddlers who lack fine motor skills anymore, it’s for us big kids too! Nothing is more stress relieving then listening to some relaxing music and coloring some mandalas or intricate patterns! You can easily find TONS of beautiful adult coloring books with stunnning intricate patterns on Amazon or at your nearest craft store. Even big name bookstores like Barnes & Nobel have a wide range to choose from! Now if you are like me and have that thrifty gene, there are several ways you can make your own FREE coloring book. Just Google “adult coloring pages” on Google Images and copy the images into Microsoft Word or Google Slides (when you set up your google slide, make the slide 8.5in x 11in so that it cover the whole page when you print your book). There’s also some pretty awesome websites that have great printable coloring pages. Here’s a list of my favorites!
9. TONS AND TONS OF COLORED PENCILS
Obviously, you are going to need a wide variety of high-quality colored pencils if you are going to spending your downtime coloring! I absolutely LOVE Prismacolor Colored Pencils because their colors are so rich, but their price tag is not wallet-friendly. Crayola has a pack of 50 colored pencils for around $15 on Amazon and those work just as well too .
10. A Journal
There will be days in treatment that are incredibly rough and you’re going to need to vent. Journals are the best for that because you will not tell you to “challenge your eating disorder thoughts” or to “think more postively” – it’s an inanimate object that is guaranteed to keep it’s mouth shut. The only thing that I recommend about getting a journal is to make sure you get one with some form of a lock. Why? Well, for starters there are patients that are what I call “nurse’s pets” – they basically scout out the unit ready to report to the nurses on any ED behavior. Secondly, a lot of treatment centers will actually READ YOUR JOURNALS and I do not care how many times they say it is for patient safety, it’s an invasion of privacy and there’s no ifs, ands, or buts about it.
Now that you know of the tens things you need to stuff in that suitcase of yours before you head on out, get packing!
After months, years, or maybe even decades of swallowing laxatives instead of food, torturing your weary body with endless exercise, mindlessly devouring the contents of your refrigerator, and spending hours vomiting in your porcelain commode – you’ve made a decision.
A decision that may not just change the course of your life, but also save it.
You’ve made the decision that you are ready to salvage your moribund corpse and admit yourself into an eating disorder treatment center.
Today, there is certainly no shortage of dedicated eating disorder treatment facilities here in the United States. Don’t believe me? Just ask your good ol’ friend Google where some facilities are located and you’ll find treatment centers stretching from east to west. The problem is though that far too many treatment centers are doling out treatment regimens that are not just astronomical in price, but also almost completely ineffective.
So how do you, someone desperate to get your eating disorder in remission, find that hidden gem of a treatment center in a vast ocean of facilities willing to take your money, but leave you sicker than ever?
Well my friend, you’re in the right place because this post right here will give you ALL THE INFORMATION you need to find an eating disorder treatment facility that is BEST FOR YOU!
So without further adieu, let’s get started!
1. THIS IS A LIFE-OR-DEATH SITUATION, NOT A TIME FOR A VACATION.
Horseback riding, massages, yoga, scenic hikes – believe it or not, I am not describing some five-star retreat center, I am describing just some of the services that you are likely to find at a treatment facility for the deadliest psychiatric illness – eating disorders. Although this menu of luxurious so-called “treatments” may make you want to fill out the admission paperwork right then and there, you need to remember that you are currently suffering from a serious brain disorder that has no problem with leading you to your grave. What you need right now isn’t a spa, it’s a credible facility that focuses all of its resources on providing you with evidence-based therapies such as CBT, DBT, and Maudsley.
Still need a little more convincing that you should not be considering spa-like eating disorder programs? Well let me provide you with an little analogy. Let’s say you just got diagnosed with cancer, a merciless disease, and you now need to find a place to receive treatment. I can guarantee you that your search would not include looking for places that offer equine or art therapy, you would be looking for top-notch hospitals that know the ins-and-outs of your cancer and offer treatments that have been shown to provide the best outcomes. Why should it be any different when looking for a place to treat your eating disorder?
2. KNOW WHAT WORKS.
Before you start searching for an eating disorder treatment center, it is CRUCIAL that you are aware of the therapies that have been shown to be the most effective at treating eating disorders. What are these treatments you ask? Don’t worry, I’ve got you covered.
- Complete Weight Restoration – When your brain is malnourished, it is IMPOSSIBLE for any form of physical and cognitive healing to take place. A good treatment center will make weight restoration and nutritional rehabilitation its first priority. Yes, I know that is frightening, but if you want your brain and your body to heal, you need to be at weight that allows your body to do that. If you want to learn more about how crucial proper weight restoration is? Check out this lecture from Dr. Julie O’Toole, one of the most knowledgeable eating disorder physicians in the world. You can also purchase her book, “Give Food a Chance” .
- Cognitive Behavioral Therapy (CBT), Dialectical Behavioral Therapy (DBT), and Family-Based Treatment
3. DON’T JUST GOOGLE IT.
Never just rely on Google to help you find eating disorder treatment centers. Here is a list of my FAVORITE online resources that will help you locate a treatment center that fits your needs.
- EDreferral.com – If you are looking for an incredibly comprehensive directory of eating disorder treatment centers in the USA, Canada, or Australia, this site is a gold mine.
- US Eating Disorders Treatment Referral Guide: This guide contains a bounty of information on eating disorder treatment centers across the United States. Each entry on a treatment center tells you exactly the conditions the center treats, what demographic of patients it treats, the levels of care that are offered, the types of treatments it uses (WHICH YOU SHOULD KNOW BY NOW IS SUPER DUPER IMPORTANT INFORMATION TO HAVE), whether or not it takes insurance, and if it accepts Medicaid or Medicare.
4. DON’T BE AFRAID TO ASK QUESTIONS.
Once you find a treatment center that you think is potential candidate, CALL THEM UP AND ASK QUESTIONS! Don’t know what to ask? Here’s a list!
- How long has your center been treating eating disorders and are you familiar with the 2013 Clinical Practice Recommendations for Residential and Inpatient Eating Disorder Programs published by the American Academy for Eating Disorders? (Make sure to check out the guidelines before you call the center . . .obviously).
- don’t live in the United States? Check out this site for treatment guidelines in your country!)
- What is your belief on the etiology of eating disorders? (make sure they recognize that eating disorders are biologically-based brain disorders that are NOT choices and that they are not the fault of the patient or patient’s family)
- What is your treatment philosophy? What treatments do you offer? How much time is spent on each of those treatments? (make sure the MAJORITY F NOT ALL OF THE TIME IS SPENT ON EVIDENCE-BASED TREATMENTS!!!!). Can you explain the science behind each of your therapies?
- Is your program hospital-based or allied with a hospital-program sponsor? (if you want good treatment, THEY SHOULD BE!)
- Are all you clinical staff members trained in evidence-based therapies? What are their credentials?
- What is the training and background of the therapists you have on staff? How long have they been treating eating disorder patients? What are their credentials?
- Who is apart of my treatment team (centers should provide the four major components of eating disorder treatment which include medical/nursing, nutrition, psychological care, and psychiatric care)? How often do I meet with each member of my treatment team? How does my treatment team coordinate my care? Do they work together?
- Does your center provide education for family members and family therapies? How does your center keep my family involved in my care?
- Does your center engage in quality improvements efforts? If so, how? Do you evaluate your outcomes and if so, how? Can you provide me with data on these outcomes? (they should evaluate their outcomes and be transparent about them).
For more information on how you can evaluate a treatment center, click here!
5. RECOGNIZE RED FLAGS
As you question and investigate an eating disorder treatment center, you MUST be aware of red flags.
Here is a link to an wonderful article by Dr. Sarah Ravin, a psychologist who specializes in evidence-based treatments for eating disorders, on eating disorder treatment red flags.
Now that your armed with these helpful guidelines, BEGIN YOUR SEARCH!
Let me tell you the story on why I have decided to write this series on eating disorder treatment.
As most of you know, I spent the early years of my eating disorder in hospitals and treatment facilities. Since I was so young at the time, making my own medical decisions was off the table, and so my parents were the ones who searched for facilities and signed all the admission papers. The first time I arrived at a facility after a hospitalization, I was just thirteen. I had no understanding of how serious my illness actually was and how medically unstable I had become. I also had absolutely no desire to get well. Sure, I chugged my Ensures and stuffed my face with bowls upon bowls of lukewarm mac-n-cheese, but I did not actively participate in groups, I kept myself guarded in individual therapy sessions, and I blatantly refused to complete my CBT packet.
Now here I am – an eighteen year old who dreams of being able to speak French fluently, of traveling the world to visit every religion’s most sacred sites, and of becoming a health care professional who helps those who suffer from eating disorders. And I am also an eighteen year old who still can’t eat at restaurant, who still counts calories religiously, and who still is incredibly frightened of gaining even one measly ounce!
My friends, I am still very ill. Sure, I’ve made progress over the years but my eating disorder has yet to go into remission. Now I live with the regret of not taking advantage of the intensive treatment I was offered.
And that’s exactly why I am writing this new series on eating disorder treatment. I do not want anyone making the same mistakes I made. I want to help you, my fellow eating disorder sufferer, find and get the best treatment you can possibly receive and to take advantage of everything treatment has to offer.
So you may be wondering what exactly I am going to cover in this series. Lucky for you, I’m a meticulous planner and I made a list of the every single one of the topics you’ll see here on Forever Going Forward.
- How to Find the Best (for you) Eating Disorder Treatment Center – March 7th, 2016
- Packing for Eating Disorder Treatment? The Ten Things You Must Bring! – March 14th, 2016
- How to Get the Most Out of Eating Disorder Treatment -March 21st, 2016
Alright you guys, I hope that sounds like a good plan!
Now before you head on off to work or school or whatever you do at this time of day, I want to remind you guys to check out my new Q&A YouTube video and after watching it, please leave a comment in the comment box below about your experiences (good or bad) with family or friends who don’t know anything about eating disorders. I’d love to feature some of them in my next YouTube video, “How to Deal with People Who Don’t Know Anything about Eating Disorders.
Have a wonderful day and you’ll hear from me soon!
I am pretty excited because guess what, I JUST posted a NEW Q&A video! My next video is going to be on how to deal with family and friends who don’t know ANYTHING about eating disorders. I would love to have your input on this video, so I would like to know how you deal with people who know nothing about eating disorders. What is your game plan? Also, I would love to hear your stories about encounters (good or bad) with folks who are still in the dark ages when it comes to EDs.