Category: Sept 30 2014

Join the Virtual March Against Eating Disorders with Me on 9-30

9/28/2014

by Nancy Gruver

I wish I could be in DC at the #MarchAgainstED on Sept. 30 at noon - 5pm eastern time. I know and love many people who've been hurt, even killed, by eating disorders. That's why I've been volunteering to help people learn about the march and #edclobbyday.

I will do whatever I can to:

raise awareness of EDs,
increase scientific knowledge about EDs,
make effective treatment and support available to everyone who needs them,
build and spread ED prevention that works.

I know there are lots of people who wish we could be there in person. So let's get together online to join the march and lobby day and bring them live to social media! We'll have fun, connect with others who share our commitment, and we'll spread the message to even more new people.

People lucky enough to be in DC will be posting photos, highlights and videos to FB and Twitter and I'll repost them to this blog.

Post and connect at noon-5pm eastern time for the 9-30 march at any of these places:

Twitter - use hashtag #marchagainsted
Retweet posts with the hashtag and from @marchagainsted
Facebook - https://www.facebook.com/MarchAgainstED
March website - http://www.marchagainsted.com/updates

For EDC Lobby Day on 10-1 see how to participate virtually between 9am-5pm eastern time.

See you online at noon on Sept 30!!

0 Comments

Why I March: For One Voice. One Demand. To Save Lives.

9/22/2014

12 Comments

When asked to write this blog about why I March, a plethora of reasons ran through my mind. Of course, there is the obvious and most important reason why I March - for my beloved daughter and for my family. Anorexia ripped through our house like a category five hurricane. It took my youngest daughter as prisoner. It descended upon her, sucked her up, and spun her into thinking that she was not worthy, that she was not loved, that she was not beautiful, and stole years from her life. It leveled our house to its foundation. But we are among the fortunate. We were able to rebuild. My daughter is now strong. She has learned tools and is constructed of materials to withstand the winds and the storm of anorexia. But many are not so fortunate.

My first vision of this March came almost six years ago when I lobbied in DC for eating disorder legislation with my then 16-year-old daughter. At the end of that day the only thing that went through my mind was that our legislators just do not “get” it. They don't understand the hell that sufferers and families go through when battling eating disorders. At that moment, I realized that it would take a bunch of angry moms and families “marching” on Capitol Hill in order to create change. It is going to take eating disorder organizations to quit pursuing independent strategies, to collaborate, to join hands and unify their voices into one powerful voice that will not take no for an answer. Our legislators need to understand that early diagnosis and treatment is vital; that eating disorders do not have to be a life sentence and are survivable. Legislation needs to be enacted that requires the medical community to be educated on eating disorders, that compels insurance companies to swiftly cover treatment, and that provides funding for research.

So, why do I March? I March for those that have lost and those who still suffer. I March for those that have survived, but still have battle wounds. I March for the phone calls I receive every day from mothers crying that their child is very sick and no one will listen. I March for the families that have children lying in hospitals and can't convince insurance companies to pay for treatment. I March for the sufferers who have been seeking treatment for decades but are told repeatedly that they are not sick enough or aren't worthy. I March for the men and boys that suffer, but can't receive treatment because “males don't get eating disorders”. I March for the children that can't put food to their lips, but the moms are told they are just picky eaters. I March for the young woman in Texas that had 13 moms battle Texas Medicaid for five months so that she could receive life-saving treatment. I March for all those like her that are still suffering. I March for my friends that have had to watch their children die and were told: “…you are to blame for your child's eating disorder…” I March for my friends who can’t March because their children are still suffering and need to be supported at every single meal. I March for those that are too sick to March for themselves. I March because the stories need to be told and they need to be heard. I March because we all need to go to Capitol Hill, stand up, and shout “No more!” I March because if we don't fight for our children and for ourselves, who will?

It is time to unite all the fragmented voices across our country. All of the eating disorder organizations need to stand strong with moms, families, advocates, and sufferers. Together, we must send a powerful message to our legislators that we are unified and are of one voice, one stance, and one mission. As of this date, 31 non-profits have joined hands to help deliver this message. This is unprecedented and a huge step forward. Please be a part of the change and join us on October 27 at 3 pm in Washington D.C. to use YOUR voice at the federal level. Together we can make a difference!

This is why I March!

Register: www.MarchAgainstED.com

Video: https://www.youtube.com/watch?v=4xfXK7fRkGk

12 Comments

I Will March Because I'm Recovered

9/22/2014

3 Comments

by Rachael Rifkin

In May of 2012, I officially admitted myself into residential treatment for struggling with bulimia nervosa. What I did not know was that the next eight months were going to change my life forever; those unexpected eight months saved my one and only life.

I knew I was sick, but I was never told I looked sick. If anything I was told the opposite at my sickest, which made my eating disorder only grow stronger. My perfectionism peaked and my people pleasing skills were at their prime. My life appeared effortless and joyful on the outside, when on the inside I was anxious and depressed.

These personality traits that got me so far in life became my biggest challenge in treatment. I had to simply “let go” of what I thought I “should” or “should not” be doing. That task is very difficult to accomplish when insurance is telling you that you do not need treatment because you comply with treatment and are not underweight. How are you supposed to recover when you supposedly “look” recovered? It did not look like I had developed severe osteopenia in my bones at age 20. It did not look like eating disorders ran in my family genetics either. That’s the twist with this psychological illness people do not understand; it’s never what it looks like when it comes to eating disorders.

I was lucky to have continued treatment as long as I needed to; I was willing to change my path of planning and perfectionism if it meant to continue a path at all. I was/am beyond grateful for the support of my family and friends, and was able to fulfill residential treatment, transitional treatment, and outpatient treatment, but that is not often the case for many people struggling. Many people simply cannot receive the care they need because they do not look sick enough; many people get denied further treatment because they look too sick. Who knew there was the perfect amount of sick to get that perfect recovery that does not exist?!

I am proud to say I am recovered today. I am happy, as well as many other emotions that are not as pleasant as happiness. I am bright, funny, a bit awkward, but most importantly healthy. People forget that healthy and happy are not synonymous in meaning; they might go well together, but healthy goes well with every emotion.

On September 30th I will march in Washington D.C. as a survivor of eating disorders and an advocate for change in how society views eating disorder treatment. I will march with The Alliance For Eating Disorders Awareness and other organizations that support more eating disorders research. I will march for those who cannot and for those ashamed of an illness they did not choose. I will march to prove that recovery does exist.

3 Comments

When Others Believe in Our Recovery - Why I Will March Sept 30

9/20/2014

8 Comments

by Jenn Friedman

When I was 16, I sat down to figure out the piano music for a song I'd written. I became very frustrated and so I said to my mom, "Maybe I'll just write lyrics and sing and have someone else play the music," to which she replied, "But isn't that what you do?" So I went back to figuring it out.

When I was 28 and in the grips of an eating disordered relapse, I woke up on my parents' living room couch. My mom asked how my nutritionist appointment had gone the day before. I told her the highlights, to which she responded, "You're calling out of work today and calling treatment places." I said - and believed - that I didn't need to; that I was fine. She implied that I would not survive if I kept going the way I was going. So, I called out of work and started the process.

When starting to create a recovery book and music project, I told myself, "Jenn, this could be so much easier if you just make it a book. The recording piece is going to be so much extra work!" to which I responded, "But isn't that what you do?"

While in recovery, I asked myself how I wanted to identify - to which I responded, "Recovered," because I trusted that in time I could become free.

And in the wake of recovering fully, I reinstate to myself that I'd rather align with my advocacy than my eating disorder because, as an advocate, I recognize myself in the mirror.

Today I have my music intact, my project in full, and my recovery as a self-sustaining incentive for the former two.

I have been able to rebuild and expand upon my livelihood because I have had support. I have had support because I have used my voice to speak my truth in spite of my eating disorder's adverse wishes.

My eating disorder nested in my isolation. It took root in my hiding. It blossomed at the core of my shame. I saw no way out for a while. In fact, I didn't know that I even wanted to see a way out.

And when it came time to decide between my life and what I knew would result in my death, at first I merely chose survival. But in time - and with work, practice, and trust - I chose life. I wanted more of what was welling up within me. I wanted more of the world on which I had been sorely missing out.

I am marching for those who might not be ready to choose life just yet; I am marching for those who have chosen and are living life, and I am marching in honor of those who didn't get the chance to make that choice for themselves.

When we are sick, we often cannot discern, we often cannot make rational decisions all on our own. We need others to step in much of the time. And that is where these warriors come in. Thank you all for marching on behalf of a collective potential yet to be realized. Thank you all for marching on behalf of your families and friends. Thank you all for marching in honor of your selves because this fight can be cruel and you won't back down and you can say that with certainty.

We are not only fighting against eating disorders, but we are also rallying against the isolation upon which they thrive. When we march together, we become everything the eating disorder does not want us to be. The eating disorder's secrets are out and it has nothing on a force such as this.

I will be participating in this day in honor of my family, friends, and treatment team for instilling in me the message that I was capable of recovering fully. Thank you for believing in me with such conviction. It felt like radical conviction to me then, but I understand now that there was nothing radical about your belief in my recovery.

I will be performing because of the day my mom casually yet profoundly reinforced that, yes, "this is what I do." And I will be marching because she didn't let me march into work twelve years later - a mother's persistence for which I am eternally grateful.

8 Comments

My Family's ED Experience is Why We're Marching 9-30 in DC

9/16/2014

8 Comments

by Amy Cunningham

When asked to write this post, I spent a week thinking about what I would say. What could I write that would inspire other parents of children who have, or are, suffering from an eating disorder?

What could I say to a former sufferer (I like to say a SURVIVOR) who has fought this illness in the past or who is fighting now? How could I communicate the importance of us all coming together on the wide lawns of Capitol Hill in the United States to make a case to Congress to finally pay attention to a disease that kills up to 20 percent of its victims?

I decided to share our story – which is one that took our family from the depths of despair, to a growing sense of hope and happiness. The very fact that I have time or inclination to write this is testament to the solid place we are today in terms of fighting my daughter’s eating disorder. A year ago the picture was very different . . .

My youngest daughter Emma was hit with anorexia at the tender age of 11, just as she was on the cusp of adolescence. In a short period of time she experienced a rapid growth in height, and then loss of weight due to a bout with food poisoning. At the same time she began to be preoccupied with the thought of 'feeling fat' and checking herself in the mirror, no matter out protestations that she was an amazing girl.

Still it was hard to tell that there was a serious problem. She was so young after all – it COULDN’T be ED could it? In just a few months she almost completely stopped eating and no amount of pleading and begging helped. Worse, we live in East Africa and were cut off from ED specialists.

I thought I was hyper-attuned to eating disorders as Emma’s older sister had suffered years before, but since we didn’t do Family Based Treatment with her, I wasn’t clear on the new data and the genetic connections. Emma’s illness could one day not seem to be there, but the next seem to be more present. Too often, ED evolves in such a way that you don’t notice the subtle changes and when you do, it can be too late. Then more weight loss occurs BECAUSE of the disease – the mental illness that slowly takes control over the mind and behaviors. In our case Emma's ED took on its own personality and was a cruel and even violent being. And getting her to eat was one of the hardest things I have ever experienced as a parent.

Today we know that eating disorders – anorexia, bulimia, binge eating disorder – are biologically-based brain disorders and recognized as of psychiatric illnesses in the DSMV-5. Any weight loss can trigger ED if you are predisposed, As I look back it all makes sense: I struggled for years with an eating disorder well before anyone spoke of such things – and feel very lucky to be alive and healthy. My fourth and fifth children were hit. I believe several of my older relatives have suffered – at least I recall several aunties with ED like behaviors. To know this is great because it empowers us to tackle the illness and not the child. RIGHT! You’ve got an ED, ok we have work to do! There is no shame, only hard work and a long road.

And guess what? There is also help and there is hope. Finding a therapist who shared the research-based findings around the effectiveness of Family Based Treatment (FBT) was a godsend for us. FBT is an evidence-based therapeutic approach that empowers the family members, particularly the parent(s) to take control of feeding the child/young adult with the goal of rapid weight restoration. There is no talking about trauma or feelings per se, it’s all about getting that weight back on. One must shop, cook, prepare, feed and feed and feed, supervise meals and post-meals SIX TIMES A DAY.

The motto of parents who do FBT is ‘Life stops until you Eat” and that is what we did. No school, no computer, no activities, no TV, no friends – nothing until you eat. This might go on for months, with incentives as much as possible. It was the absolute hardest thing I have ever done as a parent - it breaks you down on every level, but you just have to continue because it is saving the life of your child. Over time, as the weight comes back (in our case it was almost 1 full year), the brain is nourished and your child slowly comes back to you. Not the same as before – perhaps a bit more tuned to vibrations around him/her, more sensitive, more aware of the fragility of life and the challenges of dealing with mental illness.

Whether families choose FBT or other forms of excellent ED treatment, the bottom line is that you need specialized help to save your child. And in my experience now as a parent/activist many Americans do not have access to ANY treatment for their child's eating disorder. We flock together on Facebook groups like MAED, FEAST, Around the Dinner Table to give and receive support. We also rally for insurance companies to cover ED and are now reaching out to our legislators to effect change. No one should be denied treatment, no family should suffer without help.

So this is why the March Against ED on September 30th and the EDC Lobby Day on October 1st is so important. We must come together to plead, yell, scream, challenge, and explain to our leaders that Eating Disorders are deadly serious, that we need funding for research, evidence-based treatments and prevention and education for families, schools, communities and health care workers. EDs CAN be successfully treated. Everyone deserves a chance to recover. If you can't make it to the Hill please write to your Representative here and tell them why they need to pass the FREED Act. Click on this site http://whoismyrepresentative.com/ and tell your elected officials that you want them to consider and pass the Federal Response to Eliminate Eating Disorders Act, H.R. 2101. Tell them YOUR story!

And thanks to all you warrior moms and dads - so many of you have supported me and my girls!

8 Comments

Eating Disorder Treatment Worked - Why I Will March on Sept 30

8/31/2014

2 Comments

by Jennifer Denise Ouellette

In early 2012, my happy, healthy, bright and well-loved youngest-of-four 17-yr old daughter began to lose weight rapidly and experience a lot of stomach issues—the foods on her can’t-eat-this-it-hurts-my-stomach list quickly became longer than the list of what she could eat. Our pediatrician, a savvy and sensible woman, talked to my daughter about these issues over several visits and within a couple of months, after ruling out other possible causes, came to the conclusion the diagnosis was anorexia nervosa.

The doctor told us we would be going to the topnotch UCSD Eating Disorder Center for Treatment and Research. When I asked if Aetna would cover it she said she would fight for it. She explained UCSD was the only local facility utilizing a Family Based Treatment (Maudsley) model and research showed that to have the best chance for success. Thankfully, Aetna quickly agreed to write a single-case agreement and treatment started within a week.

Recovering from anorexia nervosa is never easy; eating disorders are brutal, persistent and misunderstood by most of society. You didn’t know they are genetic, biological, brain-based disorders thought to be triggered by a period of malnutrition? You are not alone. Fighting stigma is hard when you are also fighting for your own or your child’s life.

My daughter had an early diagnosis, top-notch treatment and she still lost a semester of high school and one of college to her disease; she continues to be followed today to ensure her recovery stays solid. She fought hard to be where she is today (15-months of independent recovery and completing college out-of-state) and she and we are the lucky ones—we’ve had access to treatment that is evidence-based and that we can afford.

I have an entire tab on my blog devoted to our journey that began with this post--my daughter encouraged me to share our story and I am happy to say our openness has helped others. It is this openness that leads me to immerse myself in the world of advocacy and activism and use my experience with social media to raise my voice and help others raise theirs.

Our story is atypical; I’ve not spoken to anyone else whose path has been this direct. Most struggle with uninformed physicians which delays diagnosis. Most have to search, often fruitlessly, for a treatment program that is both evidence-based and accessible. Most have to battle their insurance company endlessly. Most have to follow paths far more rugged than ours (which was decidedly no walk in the park).

I will march because parent pioneers like Laura Collins deserve to know there are those committed to carrying on their work. I will march for the opportunity to recover my daughter had not to be an anomaly. I will march for the access to treatment every person affected by an eating disorder deserves. I will march because I know too many mothers who have lost their children and too many who face that prospect. I will march because the researchers who have taught us much in recent years need and deserve funding on par with what other diseases get. I will march so people will understand this disease has nothing to do with vanity or choice and everything to do with brain wiring. I will march to ask my representatives to pass the FREED act. I will march because eating disorders are serious and there is hope.

On Sept 30 I will be marching in the first M.O.M (mothers and others) March in Washington, DC. We must also lobby on October 1 with the Eating Disorders Coalition (EDC) so our Members of Congress and Senators hear our voices. Changes to fund ED research and treatment start with Congress. Our voices will be heard! Please register for EDC Lobby Day and join us in making a difference.

2 Comments

Will You March With Me on Sept 30? It Would Mean the World

8/28/2014

1 Comment

by Becky Henry

Why am I marching on Washington D.C. on September 30th, 2014 in the M.O.M. March Against ED and Lobbying with the EDC on October 1st?

Twice I’ve had the empowering opportunity to lobby with the Eating Disorders Coalition and share my painful stories of having a child with an eating disorder. I was blown away by the compassion and interest of my representatives when we met with them. Interestingly, each of them shared that they knew someone with an eating disorder.

This chance to use our voices and share our stories is an incredible opportunity and it was made so easy because the people at the Eating Disorders Coalition know what they are doing and train us that day! I would have never done it on my own.

Here is some of what I’ll be sharing:

It took 2 years to get my daughter diagnosed with an eating disorder. THAT IS WRONG.
She is still sick. THIS IS EVEN MORE WRONG. It’s been 14 years. She no longer speaks to us.
Health Care Providers are given far too little information about eating disorders. This makes it hard to diagnose people and refer for effective treatments.

Far too many professionals have been taught outdated information about what causes eating disorders. The fact remains, NO ONE KNOWS. But many believe myths and that does HARM.

Most people do not know you cannot tell by looking at someone if they have an eating disorder.

Even professionals and advocates in the field of eating disorders can fall into believing that all really thin people have eating disorders. And many don't recognize that those of a "normal" size and larger sizes can have seriously malnourished brains and organs.

Parents have been pushed aside from treatment. Evidence shows us that when parents are included in treatment, the outcomes improve and treatment time shortens. The chemical dependency field has known this for over 3 decades. We need to catch up.

There remains far too much stigma and shame about these biological brain illnesses. And it’s time for parents to step up and speak out. We are coming out of the shadows and silence to make our voices heard. Without shame. We are changing the course of eating disorders treatment by speaking out in numbers too big to ignore anymore.

Please join me in marching and lobbying to push for mandatory education on these most deadly of all mental illnesses so that maybe we won’t ever hear another under trained therapist say, “If it weren’t for pathological parents, we wouldn’t have eating disorders.” That is doing harm and this has to stop.

You can make a difference by showing up. It would mean the world to me. I still have hope that one day our daughter will be back in our lives.

1 Comment

Anorexia Took Her Away - So I Will March Sept 30 in D.C.

8/25/2014

6 Comments

by Debra Schlesinger

My daughter and only child Nicole passed away 11 years ago due to heart failure from her long 10 year battle and struggle with anorexia nervosa. Anorexia took her away from me and everyone who loved her. She left behind her beautiful daughter Hannah, a true miracle and gift from God. Hannah does not remember her mother .

Nicole was intelligent and beautiful inside and out. She was kind and sweet with an amazing smile that would light up the room. I was truly blessed to have had her for 27 years! Nicole’s dream was to be a doctor to help those who struggle with eating disorders (ED). That dream never came true.

Nicole’s eating disorder took hold of her when she and I went on a mother-daughter bonding Weight Watchers diet. She was just entering University of California Berkeley at the time. Nicole was not overweight. My daughter looked great, but had low self-esteem and body issues. She became obsessed with dieting and exercise and the perfectionist syndrome. This was the beginning of the "demon" of ED taking hold of her life.

In the ten years Nicole suffered from anorexia, she was in and out of various treatment centers roughly ten times. The last center was Renfrew where she went after her miracle daughter was born. We had high hopes this round of treatment would save her and she would eventually recover. Nothing could have been further from the truth. She spiraled downward from that point on with the dual demands of being a new mom and her ED.

On April 6, 2003, my daughter passed away quietly at home with her husband and daughter. She woke up that morning not feeling well and decided not to exercise but get some needed rest. A few hours later her husband tried to wake her up, but she was already gone. My life as I once knew it was changed forever.

I chose to live. To be here for her daughter Hannah. And to reach out to help others as I have for the last 7 years with the Eating Disorders Research Center (EDRC). And now I'm the founder of an online Facebook Group MAED (Mothers Against Eating Disorders) which mothers can join for support.

I did not have this kind of support at the time I was dealing with Nicole’s illness. In fact, I was blamed for her eating disorder by everyone. Back then, many thought that parents caused the illness, which is wrong.

So on Sept 30, 11 years later, I will be marching in the first M.O.M (mothers and others) March in Washington, DC. I will march in memory of my daughter and in honor of everyone else who has lost someone to an eating disorder. For the families that are grieving the loss of a loved one.

We must also lobby on October 1 with the Eating Disorders Coalition (EDC) so our Members of Congress and Senators hear our voices. Change to fund ED research and treatment starts with Congress. Our voices will be heard! Please register for EDC Lobby Day and join us in making a difference. No one should lose a child to an eating disorder.

No parent should ever outlive their children.
No parent should have to bury their children.
When a child dies, the parent has two choices: to survive or to die.

I chose to live and to help others.

6 Comments

Archives