Tag Archives: recovery

…We Now Face Death

Join me in saying goodbye to one of my favorite professors, who unknowingly had a profound impact on my recovery and my life.

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“Having been born in this life as we have been,
we now face death.”

Perdue1

Dr. Daniel Perdue, 1950-2013

That was the very first statement Dr. Dan Perdue made to the religious studies classes he taught. He would go on to explain that, no matter the differences between the many religions of the world, what they all have in common is that they are concerned with what happens to us when we die. His specialty was Tibetan Buddhism, but he also taught general survey classes on eastern religion. He was one of the most interesting, wise, and challenging professors I ever had, and though he never knew it, his classes had an indelible impact on my life and played an important role in my recovery.

When I heard that Dr. Perdue had been diagnosed with pancreatic cancer last year, I and many others wondered how he would face his death. Though he had devoted his academic career and spiritual practice to such questions, no one wants a fatal diagnosis, especially at the age of only 63. As a man who had taught classes the world over and developed many close friendships here in Richmond, he sent out mass emails in August to update everyone on his condition. A friend forwarded me the first one, and I mistakenly thought I had gotten on the mailing list for future emails.

Following his passing on November 18, I re-read the first email and realized he had stated he would send out another. And so it happened that I didn’t read his second email until the day before his memorial service, billed as a Celebration of Life.

I was surprised and touched by what I read. The jovial man whom we all thought incapable of anything but a gentle, happy disposition shared that, in his late twenties and early thirties, he had struggled with substance abuse and depression. In August 2013, he wrote:

I think I did not adequately value my life. I reckon that I wasted nearly a third of it/about 20 years… On many days, especially between the ages of about 27 to 33, I thought of suicide… In time, I gave up on the idea of suicide, but I sort of symbolically threw myself against the wall, drinking and smoking too much and practicing unhealthy habits. Perhaps seeing the scope of what was to come for me, one day completely out of the blue, Kensur Yeshi Thupten said to me, “Toenyoe, happy people don’t drink and take drugs.” But I did. It was a sort of petit suicide, day by day for years.

During his service, someone shared what many of us had all thought at one time or another – a suspicion that Dr. Perdue was actually a bodhisattva, so committed he was to teaching, to the Dharma, and how he built friendships everywhere he went. His apparent struggles with depression and substance abuse made the accomplishments of the second half of his life, as well as his demeanor and attitude, all the more impressive.

Yet I was touched on a much more personal level to hear of the suffering my professor endured, because when I took my first class with him in early 2004, I was suffering immensely.

My eating disorder was arguably at its worst. Truly, I probably should have been in a hospital instead of a dormitory. I was near my lowest weight. I wasn’t sleeping well, and it was in those quiet moments trying to fall asleep at night that the mental chaos and physical pain anorexia had wrought was hardest to escape or ignore. I was miserable, unable to think or function well from the malnourishment. I often thought of suicide. This is not something I have often shared publicly, but in the wake of Dr. Perdue’s last testament, I see no reason to censor this fact.

And so it was that as he began his lecture on eastern religion and the nature of suffering as he always did, there is no way that Dr. Perdue could have known about the Hell I was living in.

“Having been born in this life as we have been, we now face death.”

As he began the introduction to Buddhism, he started with the first of the Four Noble Truths: the truth of suffering, or dukka (dukka is also translated to mean anxiety, stress, and dissatisfaction, among others). The truth of suffering is that we all suffer.

We all endure hardship.
We all get sick.
We all experience loss.
We will all eventually die.

It’s in our nature to try and minimize displeasure and to maximize comfort – human nature is hedonistic on a very basic level. We all put on coats to avoid the discomfort of being cold, for example. If there is one thing that every living thing has in common, it is our capacity to experience suffering.

Perdue went on to explain that, as Buddhism understands the world, there is nothing in our fragile lives that cannot result in suffering – even things that we enjoy or are inherently pleasurable. He offered the examples of ice cream or even sex. Even things that bring us pleasure, done in extreme excess, may result in some mental or physical pain.

I was intrigued. I had never contemplated the world in this way, and one of the support groups I had started attending had a spiritual component that had become a giant roadblock. Others in the group who had a belief in God sailed through it, but my agonistic and at times atheistic disposition seemed incompatible.

Contemplating Dr. Perdue’s words, I slowly began to wonder if there was anything that we could experience in this life, in this world, that we could indulge in that would never result in suffering. If it could be identified, then maybe it could offer me some direction – something bigger, greater than myself that I could take refuge in.

I continued going to the group and attending his classes. Buddhist teaching and recovery programs were not so different: both emphasize, in varying capacities, the practice of compassion towards oneself. While I can only speak for myself, as far as I am concerned, without loving and forgiving oneself, there is no recovery. And self-forgiveness requires that we love ourselves unconditionally. Similarly, a central part of Buddhist practice is learning that compassion, practicing it inward, and then turning it outward. One day, it hit me so hard that I wondered how I never saw it before. I realized that there was something we’re all capable of experiencing and indulging in that will never cause us to suffer.

Unconditional love. Or, to put it another way, love without condition. This means we love others without wanting or expecting anything, including love, in return. This initially feels contrary to human nature, since there isn’t always an immediate or obvious benefit. Sometimes people mistake this idea of love without condition as a circumstance which might allow or encourage someone to stay in an abusive relationship, or to be taken advantage of. This is not the case.

Rather, it allows us to approach individuals and situations with the compassionate understanding that we all suffer. Just as Dr. Perdue had no idea the immense suffering I was experiencing in that first class with him, any person you encounter has their own burden. The positive regard he had for every one he encountered, though, created a circumstance where his compassion and love of life was infectious. He once said that, while he had never had any children of his own, the university gave him more children every semester.

After describing his substance abuse as a petit suicide, Dr. Perdue concluded his email with the following:

…Let me just say what I say at the beginning of the Asian Medical Systems course, “Don’t do as I do. Be smarter than me.” I have never been a model of health or how one should use a good life.

So, please use your life well. It truly is like having a bucket of gold dust with a little hole in the bottom. I know that we tend to see the value in something more, when we are about to lose it. Maybe that’s why I’m saying this stuff to you. But, I have understood the truth of the value of life for a few years now. When I look back over my life now, I see it as one of extraordinary value… How lucky I was! … It will be hard to equal the value of this life.

I cannot help but get a little choked up every time I read that last sentence. If it was not for Dr. Perdue’s class, it’s impossible to say how my recovery would have gone. Ten years since that first class, I only wish now that I could express my gratitude to him.

Despite many hardships, I find myself agreeing with his final sentiment. Though I (hopefully) still have many years, it truly will be hard to equal the value of this life.

Thank you, Dr. Perdue. I’ll see you on the other shore.

You can read Dan Perdue’s full obituary here.

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Keeping Up With Recovery Over the Holidays

Holidays. While most people look forward to the time off, seeing family and friends, and all the delicious food that usually comes with them, if you’re in recovery, that last one can be quite the challenge. It’s something I struggled with a lot while I was still in recovery, so I thought I’d share some of the things that got me through difficult times.

Keep in mind, these are things that worked for me. Recovery is a very personal process and any kind of suggestions or advice will need to be fine-tuned to meet your own needs. As they said so often in the groups I attended, take what is useful, and leave the rest.

1. Psyche Yourself Up

If there are going to be a lot of people for lunch or dinner wherever you spend your holidays, then that means you need to prepare yourself so you aren’t caught off guard by the things people might say or do.

Holidays often mean seeing family members you haven’t seen in a long time, and in our image-focused, weight-obsessed culture, one of the first things people comment on is appearances.

People who don’t know you have an eating disorder might say something like, “You look so good! Have you lost weight?” not realizing that it’s actually a problem and is nothing to be complimenting or celebrating. When I was in recovery, sometimes even being told I looked healthy would get filtered through the anorexic voice in my head and I would hear something closer to, “You’ve gained weight and they can tell!”

The way I worked through either version of this situation was to remind myself that whatever people had to say, they were trying to be friendly and were well-intentioned. People who have never had an eating disorder may never fully understand what it’s like, so internalizing a well-intentioned greeting or attempt at a compliment doesn’t do anyone any favors.

Of course, even if you do psych yourself up for it, that doesn’t mean you won’t need additional support. That’s why the second tip is…

2. Recruit An Ally

This was never something I really needed for holidays, but I do have a perfect example of this. In 2004, I went on a trip to New York as a part of Alternative Spring Break when I was an undergraduate. I was still very early in my recovery, and the trip involved traveling with nine other students. We stayed in a hostel, worked in clothing banks and soup kitchens all day, and then we took turns cooking dinner for the group most nights.

In other words, it was terrifying.

After a few days, I realized if I didn’t speak up for myself, I was going to have a really difficult time. I asked someone on the trip if we could talk privately, and when we had the chance she and I lagged behind the group. I told her I was in recovery from an eating disorder, and that I couldn’t always put it into words but sometimes I was just overwhelmed by food. I assured her I intended to eat and take care of myself, but that sometimes I might need to get my own food or do things separate from the group. I was fortunate that she was so understanding.  For the rest of the trip all I had to do was walk over to her and tell her I was feeling anxious or freaking out, and she would walk outside with me or keep me company. Sometimes, people would start talking a lot about weight or food, and if she noticed I was trying to change the subject, she would chime in and help redirect the conversation.

The same thing can be done for the holidays. Maybe you have a sibling, a cousin, or an aunt who you can trust to be understanding with these things. Reaching out to someone in advance and just knowing that they’re in tune with the fact that a big Thanksgiving dinner is a challenge can help ease some of the tension.

Having a friend to text or call can be just as good. Letting a trusted friend know you’ll need support and to ask if they can keep their phone handy can be a lifesaver. Sometimes I would call a friend and we would talk about anything but food – I just needed the distraction.

Maybe you don’t have someone like that in your family or who will be in attendance. If you have a friend to call, maybe they aren’t able to answer when you call. What do you do then?

3. Have a Backup Plan

Even if you recruit someone to help support you, they might not always be available the whole time, and there’s always a chance they won’t know exactly what to say or do. And that’s okay!

I always had a backup plan. Above all else, recovery to me was not optional, and I was firmly committed to not acting on urges to engage in disordered eating behavior. It’s a process and we don’t always succeed all of the time, but when we are in the moment and are feeling overwhelmed, that’s when it’s important to know what you’re going to do instead.

Eventually, that anxiety or stress or sense of discomfort passes. To facilitate that process, you can have any number of backup plans. When I was in recovery, sometimes being out to eat at a restaurant would be too much, but I didn’t want to draw a lot of attention to myself either.

Sometimes I would just say I had an important phone call to make and walk outside. Some fresh air along with some peace and quiet went a long way to helping myself calm down and get back to #1 – psyching myself up to go back inside, have a meal with my friends, and enjoy the company and food.

Other times, I needed the exact opposite of peace and quiet! If I had driven, sometimes I would go in my car, turn on the stereo, and blast the loudest, most energetic music I had to drown out my thoughts. If you have your headphones handy, they can work just as well. Even if you have to step into the bathroom, listening to a favorite song can help a lot. Both served the purpose of taking my mind to another place, refocus, and tell myself, “I can do this.”

4. Believe In Yourself

I frequently told myself “I can do this.” And if you’re reading this, then you should know – you can do this too! So much time with an eating disorder is spent engaging in negative self talk. Talking down to ourselves. Thinking we aren’t good enough, that no one understands or cares.

That’s why positive self talk can be such an important part of recovery. Maybe you don’t fully believe the positive things you say to yourself. It’s okay to doubt whether or not you actually can do recovery. It’s okay, because recovery is hard. That’s why we practice believing in ourselves even if we aren’t sure that we know something for certain. It may feel silly in the beginning, but is telling yourself you can do something any sillier than constantly telling yourself that you’re unattractive or incapable? I think not.

The truth is, the human body and spirit is incredibly resilient. Recovery is hard, in fact it’s the hardest thing I’ve ever done, but it’s also the most worthwhile. There’s no shame in having an eating disorder, and there’s no shame in reaching out to others for help.

I’m sure I’m not the only one with suggestions for how they’ve gotten through holidays before. Share any ideas or tips you’ve got in the comments below!

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Filed under eating disorders, Recovery

Should NEDIC Reconsider Their Ad Campaign?

Update:
NEDIC put out a response for which I’m appreciative (see here). Perhaps my rhetoric was a little over-the-top, but I do feel strongly about these things and believe they must be treated with the utmost care (see the comments section for further discussion). The nature of the internet can sometimes blow things out of proportion, and I hope that hasn’t happened here. To borrow a phrase from one commenter, I’d never want to ‘silence an ally’ and NEDIC does some extremely important work!

Original Post:
The following photo shows an ad that the National Eating Disorder Information Center is currently running on subways to attempt to get people talking about eating disorders and make them aware of local resources. But am I the only one who has a problem with it?

NEDIC

In response to some initial critique, NEDIC (at least, whoever runs NEDIC’s Facebook page) issued the following replies:

“It does say Hunger is my bff- it is meant to shock, leave an impression and encourage dialogue. Thank you for the feedback and engaging with us.”

…Is the image controversial? Polarizing even? Yes, but as long as it makes people think about it, and talk about it, we feel we have made progress in making more people aware of available resources and support- our end goal. This is our first such campaign and we will be doing market research to gauge reaction on-the-street, and how the campaign is being perceived by the general public. All information will be used to deliver more effective campaigns in the future…”

Where to start?

They actually stated that this is their first such campaign and are doing market research to gauge reactions. Did no one think that perhaps that feedback could have been garnered online via activist communities or opinion polls? In other words, they’re beta-testing this idea to the general populous.

Worse, I have a problem with that whole “as long as it makes people think about it… we feel we have made progress.”

See…

In some situations, I agree, but this is not a “no press is bad press” type situation. When dealing with something deadly like an eating disorder, an ad that (not-so-clearly) aims to satirize the behaviors of disordered eating comes off as trivializing the issue for people who are suffering from EDs and confusing passerby who don’t get it. When going for “on-the-street” reactions you have a responsibility to be concerned about the affects of your message on a general population, and this doesn’t meet that criteria.

You know what’s even more attention-getting? Statistics like the fact that eating disorders have the highest mortality rate of any mental health disorder, upwards of 20% of anorexics WILL DIE as a direct result of their eating disorder.

If you were an advocacy organization that campaigned against self-harm or suicide, would you put a similar “controversial and polarizing” message up to turn heads, like “Cutting is my BFF”? I’d certainly hope not.

This campaign is as vapid and harmful as those Urban Outfitters shirts that say “Eat Less.” There is honestly no difference, and whoever thought this up should reconsider what they put out into the world and whether or not this actually helps more people than it harms.

Eating disorders are deadly disorders, and this ad makes a mockery of the families that I have met doing lobby work who have lost loved ones to these terrible illnesses.

To be clear, I love 99% of the images on their page and it looks like they generally do good and important work. As an outspoken and passionate eating disorder activist, I love to see other people and ‘orgs trying to reach out to others. But this particular campaign doesn’t cut it, and hiding behind statements like “Yes, it’s shocking, let’s talk about that” doesn’t cut it, either.

Seriously. Do your “market research” internally or with the population you hope to reach out to. I can think of many forums and groups that would be happy to assist in providing feedback before you pay money to put up harmful ads on subways.

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Filed under Activism, eating disorders

In Loving Memory of Matt Ryd, Musician & Eating Disorder Activist

Last year at the end of Eating Disorder Awareness Week, I stumbled on another guy named Matt, a musician from Chicago who also suffered from an eating disorder. He had made a really touching video for ED Awareness Week, and all proceeds from his music sales for the entire week were being donated to the National Eating Disorders Association.

MattRyd

I had a brief correspondence with him over email, mainly to tell him how much I loved the video he had made, and to ask him if he would ever consider coming to DC to do advocacy work with me and the Eating Disorders Coalition. I’m often one of the only guys there, but I know there are others. I’ve met them, we’ve networked online, and we’ve all seen the limited statistics that are available that still unequivocally demonstrate that an eating disorder is a serious, life-threatening illness, regardless of the sex or gender of the person suffering from it. We need more male representation on Capitol Hill to reflect the actual population affected, and I was excited to be in touch with such a passionate and caring guy like him.

Matt had told me he wasn’t sure he could afford traveling all the way to DC, but would like to in the future if possible. As I’ve been prepping for the Fall 2013 day in DC, he was on my short list of people to email and check in with. Instead, this evening I found that his family left the following comment on the post from last year:

Matt Ryd has passed away.

From his parents on his Facebook Page:

Message from Matt’s Parents to all Matt’s wonderful friends and supporters:

It is with very heavy hearts that we must tell you that Matt lost his battle with the anxiety, depression and eating disorder that had consumed him for so long and ended his physical life here on earth on Sunday, August 4th. While Matt fought vigorously for many years, his illnesses had grown more and more debilitating over the past 18 months or so, and though he tried hard not to show it, his daily suffering increased significantly and was ultimately more than he could bear. Our hearts are broken, but we take comfort in the knowledge that he has finally been “Healed” and will suffer no more.

Matt was an amazing young man with many talents, but most importantly he had a sensitive spirit and heart of gold and touched people’s lives all around him. In true Matt Ryd fashion, he left an open message for his friends, fans and others who supported his dream of being a musician that he asked us to share with all of you. His message reads as follows:

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“To all the people who have taken time to listen to my music and support my dream, even though it stops here before I become a big shot and get to prove that I won’t lose touch with my frans: Thank you. Thank you for the joy that you brought into my life. Because there have been absolutely no times that I have been happier than when I’ve been onstage, than when I’ve watched comments roll in on YouTube videos, or when I’ve had simple Facebook conversations with people halfway around the world. You are all wonderful and amazing and I thank you so so much for your time and your attention. I’m just happy that I’ve been able to make any impact in your lives. I truly regret that the music has to stop along with me.”

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Matt lived to write and play music and was always overwhelmed and humbled by the tremendous support that he received from so many of you. Thank you to all of you for being a part of his life and providing him with such unbridled joy in the midst of all of his struggles. He will be missed greatly by us all, but we think his passion for music will continue on – in the words and lyrics of the other wonderfully talented singer/songwriters that play nightly across the Chicago landscape and beyond – and we know that is what he would want.

There will be a memorial service in a few weeks to celebrate Matt’s life and the music he loved so dearly in a way that he would have wanted. More information will be posted as it is determined. Matt also very humbly requested that any remembrances be made to either ANAD (www.anad.org) or NEDA (www.neda.org) which are two eating disorder support organizations that were important part of Matt’s life for many years.

Thank you again for the part that each of you played in Matt’s life. We will always cherish the happy moments and memories that being a musician provided for Matt over the years.

Steve and Joani Ryd

Right now I can’t even read through the entire message because I’m crying too hard. I want to watch the video again that he made last year, but the moment the music comes on I know I can’t.

On March 5, 2013, he shared the following message on his Facebook page:

Hey everyone,

As National Eating Disorder Awareness Week has drawn to its close, and having finished an overwhelmingly successful fundraiser (for which I owe you all of the credit), I feel like the time is right to make an announcement.

I’m going back into residential treatment for my own eating disorder for a while. Actually, I’ve been in residential for the past week, but didn’t want to distract from the fundraiser until it was complete.

Some of you are probably thinking: “Wait a second… wasn’t he *just* in residential treatment?” Well… yes and no. Yes, I left residential treatment about 5 months ago when my insurance ran out. 5 months is a relatively short amount of time, but can also be an eternity when you’re left with unresolved issues. In my case, as the eating disorder symptoms stopped being a problem, that led to intense anxiety. That anxiety, in turn, led to a pretty bad bout of depression. And that depression led me to turn back to my eating disorder.

In technical terms, I relapsed. It’s not uncommon. Statistics vary, but it’s generally believed that somewhere around 50% of patients tend to relapse in their first year after spending time at an inpatient/residential facility. Unfortunately, though I tried very hard not to fall under this statistic, as I’ve said before: eating disorders are sneaky little bastards, and they can come creeping in and take over your life before you even know it is happening.

I have no clue how long this stay will be. I do know that, this time, I’m staying here until I’ve worked through the underlying issues that lead me to turn to my disorder. Last time, I essentially cured the symptoms without fixing the disease. Or, to get all metaphorical on you, I tore up the weeds in the garden without managing to dig up the roots, and, as is expected, the weeds grew back.

In the meantime, I’ll obviously be taking a hiatus from music and production while in the recovery process. But I’ll also be taking a sabbatical from social networks (Facebook, Twitter, my blog… and I’ll try really really hard not to Instagram the pictures my parents send me of my cat). I’ll do my best to respond to personal messages on any of those platforms, but I won’t be responding to or making any wall posts, @ replies, or anything like that.

But I’m not dropping off the face of the earth. If you’d like to reach me for any reason, I’ll still be checking and doing my best to respond to emails at matt@mattryd.com. If you have my personal cell phone number, I’ll be doing my best to respond to any texts that I get, and if you don’t have my personal cell, you can text my work phone at (773) 980-6793. I do have to emphasize that I will *try* (and will try very very hard) to respond to everything. But, just to put things in perspective, I have *very* little free time, so I apologize in advance if some communication falls through the cracks. I promise, I will read everything, and that emails and texts from the outside world are greatly appreciated, as I’m a little bit sequestered at the moment.

Let me just say thank you to you all for your support and for sticking by me during my struggles. I promise that, when the time is right and when I am healthy, I will be back, and will be better than ever. I’ll be putting out albums left and right, producing like crazy, hanging out with as many of you as possible… and best of all, I’ll be doing it without an eating disorder. If you thought that I was able to do cool stuff before, just wait until you see me when I’m healthy. I plan to be a force to be reckoned with.

I love you all dearly, and will miss you while I’m gone, but I know that this is for the best. And when it’s all done, you’ll have an even better Matt than you’ve ever had before. And hopefully that’s something for us all to look forward to.

Your friend,
Matt

Even though we never met, I felt a connection to Matt. I think it was his sincerity and honesty, even while he was struggling. I could just tell that his candidness and hopefulness were going to give others hope, too, and maybe the impetus to seek their own recovery and support.

So if you’re reading this and you’re struggling, or you know someone who is: it’s time to do something about it. Eating disorders are serious, deadly illnesses, and you (and me, and Matt, and everyone) deserve to be healthy and happy.

Here’s the video that Matt made again. Please watch it, and share this with anyone who needs to hear it.

I wish I could have met you. Rest in peace, Matt.

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Eating Disorders: Not Just a Woman Thing – Huffington Post Live 7/31/13

The only way we’re going to change the landscape of mental health and eating disorders is to keep talking about it, which is why I’m so thrilled that The Huffington Post covers this topic fairly regularly. I joined their live segment on 7/31 along with Dr. Ted Weltzin, and eating disorder survivors Bryan Piperno and Brian Cuban (who’s first book is about to come out – congrats Brian!)

Here’s the full segment:

I took the opportunity to talk about the most important avenues to create change  - policy reform. Men aren’t always included in eating disorder studies for a variety of reasons. Men are less likely to seek help, to be diagnosed with an eating disorder, and most inpatient facilities don’t accept male patients. All of these factors make it harder to actually identify and locate patients to participate in research. That, and most large studies are funded through public money, and currently there are very little research dollars available for eating disorder research.

That’s one of the reasons I’ve been working and volunteering with the Eating Disorders Coalition for the past 7 years. The EDC advocates on Capitol Hill for mental health policy reform, and we always need more people to come and share their stories. If you’ve been  personally impacted by an eating disorder, whether suffering from one personally, watching a loved one struggle, or in your professional life, we want you to join us! Check out http://www.eatingdisorderscoalition.org for more info.

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No More Gender Bias – EDC Congressional Briefing, April 2011

In April 2011, I was given the honor of presenting at the Eating Disorders Coalition’s Congressional Briefing. I can’t believe it’s already been two years – this was before I had even started this blog! Until recently, this video (along with the other speakers) had been sitting on a hard drive somewhere, but it’s finally made it online. Below are some excepts, or just scroll to the end for the full video.

I am proof that eating disorders DO NOT discriminate.  It is not a disease of vanity. It is not a “woman’s disease.” It is not a “phase.” It is a life-threatening mental illness epidemic. Despite the data we have that demonstrate that millions of Americans – men and women alike – currently suffer from eating disorders, the shoulder-shrug excuses that are used to trivialize and dismiss eating disorders persist. Despite the fact that upwards of 20% of all anorexics will die as a direct result of their eating disorder, there is a lack of awareness in virtually every level of support that should be there to help someone. From the social level with friends and family, to health care providers, emergency room doctors, and of course, insurance companies.

When I should have been making friends, focusing on school work, and growing into the person I was going to become, I instead lost two years of my life to anorexia, two years of my life that I can’t ever get back. My senior year in high school, I had a falling out with some close friends, and fell into a deep depression. I lost my appetite, and couldn’t sleep. I didn’t know what was happening – everything occurred so quickly. Though I had visibly lost weight, it was a few months after my problems began that I ever bothered weighing myself. Co-workers who didn’t know me well would compliment me on the weight I’d lost. My friends could tell something was wrong, they just didn’t know how to approach it. Not knowing what was wrong myself, when they’d ask if I was OK I would insist that I was fine (a word that a good friend of mine refers to as ‘the real F-word’). Eventually, someone at work asked me how much weight I had lost. The thought hadn’t crossed my mind, and out of sheer curiosity I went home and weighed myself, and my bitter relationship with numbers began.

In those early months I never had ‘goal weights’ or anything else – it was all curiosity. The more I lost, though, and the more my body reflected it, the more I started to wonder how low I could actually get. It’s important to note that, at the time, you could say I was on auto-pilot. I was aware of what I was doing but I was never really in control. Our bodies depend on the intake of food and on regular sleep to function properly, and when deprived of those things your judgment and emotions can get quite disrupted, among other things. I didn’t just wakes up one morning and decide that I was going to be anorexic, any more than one might decide to become a drug addict or to have cancer.

My family and friends could tell something was wrong, but they didn’t know the right questions to ask. I skipped enough classes that my teachers started to worry, too, and even the guidance counselor checked in with me. They could all see I was losing weight very quickly, but they danced around it, wondering if I was depressed or if things were “OK at home”. Maybe they just weren’t used to screening eighteen year-old males for eating disorders. Either way it’s not as if I blame them, I was as clueless as they were. I went through my own denial, listing off all the reasons that I couldn’t be anorexic. “That only happens to models.” “You’ve just been depressed and haven’t felt like eating.” “It’s not that serious, things’ will be OK.”

… My story is not a unique one, and until we have the FREED Act, millions of others will continue to struggle. Children are being exposed to an endless stream of messages and advertising that tells them they should dislike their bodies, and dieting is becoming common among elementary school girls who haven’t even started puberty. This is a problem which is only going to get worse until there is a real intervention on the federal level.

By passing the FREED Act, Congress has the power to give health professionals the tools they need to identify, treat and prevent eating disorders effectively. They have the power to make sure no one has to go through what I went through ever again.

Congress has the power to make sure no one else has to become a statistic. I have friends who are struggling with eating disorders who I’ve encouraged to come to Capitol Hill with me for EDC National Lobby Day. Every day and every month that they don’t get the help they need to recover, I wonder if they’ll be able to make the trip to Capitol Hill with me, or if I’m going to have to bring their picture and memory instead.

And so I’m asking. I’m pleading. Pass the FREED Act. Thank you.


You can access the full speech transcript here.

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Eating Disorder Advocacy in Washington, DC – 4/17/13

I just got back from Washington, DC for another fantastic day of advocacy on Capitol Hill. I’ve been volunteering with the Eating Disorders Coalition (EDC) for six years now, and I’m honored every time to take part in it.

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All photos courtesy of Jim Knapp unless noted.

The EDC advocates for legislative reform to better improve access to treatment, advance research, and educate both professionals and the public about eating disorders. If you or someone you know have ever had to seek treatment, then you know it’s often difficult. This is because of a complicated mix of disputes over diagnosis, established guidelines, and a misunderstanding of eating disorders.

Even though the American Psychiatric Association has compiled very specific and detailed guidelines for treatment, insurance companies have no obligation to follow them and often make up their own guidelines – which physicians often don’t have access to even while treating patients. So even if treatment is approved, it’s hard to know if it will be the kind of comprehensive treatment a particular patient needs.

Jeanine Cogan & Kathleen MacDonald. Jeanine is the EDC Policy Director, Kathleen is the former EDC Policy Assistant.

Jeanine Cogan & Kathleen MacDonald. Jeanine is the EDC Policy Director. Kathleen is the former EDC Policy Assistant and now applies her expertise at Kantor & Kantor LLP.

The legislation the EDC is advocating for is called the Federal Response to the Elimination of Eating Disorders (FREED) Act, and it would help address these problems. It also contains provisions for helping medical professionals know what to look for and how to treat the specific physical health problems that can threaten the lives of eating disorder patients. You can read a full summary of the FREED Act here, along with some background and history here.

[Fun fact: the idea behind FREED, the elimination of eating disorders, was also the inspiration for my blog title!]

The EDC wouldn’t exist if not for the tireless work of the advocates who make up the organization. Spring 2013 marks the first event under the leadership of new EDC President Johanna S. Kandel, author of Life Beyond Your Eating Disorder. A common statement from first-time advocates is often: “What difference does my being here make?”

Well, Johanna came to Capitol Hill ten years ago to lobby with the EDC and got a meeting with her Congressional Representative, Ted Deutch. Their meeting educated him about eating disorders and their severity, as well as putting a human face on them. We can quote statistics all day long, but sometimes a personal testimony says more than amount of data.

Now in 2013, Representative Deutch is championing the FREED Act in the House of Representatives and has made eating disorders a priority during this Congressional session – and it’s all because of Johanna’s hard work and advocacy.

Johanna Kandel (far left) with EDC board members, guest speakers, and Ted Deutch.

Johanna Kandel (far left) with EDC board members, guest speakers, and Ted Deutch.

Myself and Ted Deutch after the briefing. So grateful for his commitment to ending eating disorders & the EDC! (Also, when did my hair get so long??)

Myself and Ted Deutch after the briefing. So grateful for his commitment to FREED & the EDC!
(Also, when did my hair get so long??)

I also want to say thanks to the offices that took the time to meet with the Virginia Team: Senator Mark Warner, Senator Tim Kaine, Representative Bobby Scott, and Representative Morgan Griffith. Virginia is already a leader on eating disorders with HB1406 establishing screenings in public schools, and I’m looking forward to Virginia carrying the torch and seeing our Congressional reps take up the cause!

Our next Lobby Day is September 18, 2013. Even if you can’t make it to DC, there are plenty of ways you can make a difference and advocate for FREED! Consider doing the following:

  • contact the local offices for your Congressional Representatives in your district to meet with them and/or their staff
  • write letters to their offices and share your own stories about how eating disorders have affected your lives, asking them to support FREED
  • donate to the EDC to support their ability to advocate on Capitol Hill, or hold a fundraiser of your own

Shout-out t0 Kari Adams of The Kari Adams Show for making the trip to DC and cover the policy side of eating disorders! Below is an interview she did with Gail Schoenbach, the Executive Director of the F.R.E.E.D. Foundation and current EDC Treasurer, along with some other pictures from Lobby Day!

Some seriously perfect weather on Captiol Hill.

Some seriously perfect weather on Captiol Hill.

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Ran into the Minnesota team on our way to the briefing! (Thanks Britt for the picture!)

Team Leader meeting at the reception the night before. So honored to be working with so many amazing people! Also, I'm the only one with my eyes closed.
Team Leader meeting at the reception the night before. So honored to be working with so many amazing people! Also, I’m the only one with my eyes closed.
EDC President Johanna Kandel introducing the next speaker at the Congressional Briefing.

EDC President Johanna Kandel introducing the next speaker at the Congressional Briefing.

Team leader brainstorming!

Team leader brainstorming!

 

Myself and other advocates during the reception.

Myself and other advocates during the reception.

Full photo sets available on the EDC Facebook page. Videos from the briefing will be made online shortly. For past Lobby Day coverage and testimonials, click here to search for all posts tagged ‘FREED’.

So what are you waiting for? Come join us in Washington, DC and help us END eating disorders!

Like this post? Stay up to date by ‘Liking’ my blog on Facebook, following me on Twitter or Tumblr, subscribe via email, or just leave me a comment to let me know what you think!

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Quick Updates

Currently Listening: Murder by Death – Bitter Drink, Bitter Moon

It’s National Eating Disorder Awareness Week! Normally I try to have a ton of stuff to post and share, but life has been pretty crazy right now. If I did everything I wanted to do, I’d need about twelve more hours in the day and at least an eight day week!

Which is kind of a salient point for talking about NEDAW. Taking on more than you can handle or have time for can be a recipe for disaster, and I learned a long time ago that sometimes you just gotta let some things go.

Have you heard of NORMAL in Schools? They promote positive body image and eating disorder education  with a special focus on schools and universities. I’m now contributing to their blog about once a month, which means I will occasionally be dividing my writing between this site and theirs. My first post is about one of my favorite topics – gender inclusivity! It’s adapted in part from a seminar paper I worked on last year which discusses the gendering of eating disorder recovery culture:

Maybe you’ve never considered the idea that we have a gendered recovery culture. As a male who suffered from anorexia, though, I know it all too well. To create space and dialogue which is gender-inclusive means we need to examine the reasons that negative body image and eating disorders have historically been associated with women or regarded as a “women’s problem.” Given that it’s Eating Disorder Awareness Week, this seems a fitting topic. After all, we have a huge recovery culture which has a cursory awareness of eating disorders in males but rarely includes them in a visible way.
-from ‘What the Heck is Gender Inclusivity?

While you’re there, check out other great contributors like Robyn Farrell, Caroline Rothstein, Becky Henry, and Carolin Costyn! I must say, it’s seriously an honor to have my writing appearing alongside so many other awesome voices.

Stay tuned for more updates for NEDAW 2013. What are you doing this week to educate and advocate for eating disorders? For yourself?

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2012 in Review

The New Year marks almost two years that my blog has been online. 2012 saw a lot of new visitors, and as I did last year, here are some of my favorite posts of 2012!

1) January 13, 2012: Smash Your Scale (And Anything Else Holding You Back!)
One of my favorite posts, and also one of my favorite stories to tell. The avatar for my blog (the smashed scale up in the corner) isn’t some stock photo – it’s actually the scale I smashed back in 2005 behind the alley of my first apartment.
“I can’t really understate how good it felt to smash that evil contraption. It was one of the biggest enablers of the eating disorder, and there was no way I could pretend that I was going to get better and still keep it around.”

2) February 6, 2012: Continue reading

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Public Perception of Eating Disorders – Huffington Post Live

In case you missed it last night, I had a last-minute invitation by the Huffington Post to join a discussion on the public perception of eating disorders! Also featured in the video are Claire Glass, a blogger who recently shared a story about her grandmtother’s life-long eating disorder, and two treatment professionals, Kim Dennis and Laura Discipio.

You can watch below:

Claire’s story is particularly moving and important, since, along with people “like me” who don’t fit the stereotypical perception of who can have an eating disorder, elderly people are often underrepresented or invisible in the conversation. You can read the full write-up about her grandmother here.

Special thanks to Jenny Churchill and everyone at Huffington Post Live for handling this subject so seriously and taking the time to talk about it! Responsible journalism is incredibly important when talking about eating disorders, because it’s already such a sensitive subject that it can be easy to make sensationalist stories which have shock value but lack substance. Both for this segment and another article I was interviewed for last year, they have an excellent track record!

PS – I’m on Google+ now. I don’t quite get it yet, but don’t let that stop you from adding me to your circles or squares.

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