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What We Wish Eating Disorder Professionals Would Consider Before Recommending That My Loved One Attend College

8/8/2017

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by Cherie' Monarch
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12 Things for Professionals and Families to contemplate before supporting that your patient or loved one attend college

An Open Letter to all eating disorder professionals, treatment centers, therapists, dietitians, medical doctors, providers, and families of a loved one with an eating disorder...

Dear Treatment Provider,

My child has been battling an eating disorder and may be a patient of yours, may be in a treatment facility for eating disorders, may have been recently discharged from the treatment facility, or may be undergoing outpatient treatment.  I might have sat in your office or in your treatment program desperate for your guidance on whether to allow my child to start or go back to college. I might have even been pleading for you to encourage my child to take a gap year or postpone college. I appreciate how much you care for my child and want to see my child live a full life. With that in mind, please allow me to share these 12 things from our experience as mothers of young adults with eating disorders as you consider whether to encourage or recommend that my child attend college, especially if they are attending college away from home or for the first time. If I am the one failing to recognize these things, please teach me and help me understand that college may not be appropriate for my loved one at this time.

1. My loved one needs to recover in a supported environment. As you well know my child has been diagnosed with and is struggling with a life-threatening illness, an illness that has the highest mortality rate of any other mental illness. Recovery from an eating disorder is no different than battling cancer. We wouldn’t recommend that a young adult who was battling cancer attend college hours away from their family where they cannot be closely monitored for physical and mental decompensation, supported, and cared for. It is no different for someone recovering from an eating disorder. In fact, it is even more critical that someone recovering from an eating disorder be closely monitored and supported since they can attain medical stability and still be very mentally compromised. Unfortunately, despite one’s best efforts and skill, it may not be possible to accurately ascertain in a 50 minute session every week or two while they are at college or in a phone call to home whether or not there has been physical or mental impairment...especially for a young adult early in recovery who is not totally invested in their recovery. Please encourage my loved one to remain in an environment where they are closely monitored and supported.

2. My loved one deserves and requires time to recover. TIME. Recovery takes time. Solid recovery takes time and practice. It takes walking through the fire every single day. It requires making difficult choices every day. It requires exposure. It requires failing one day and getting up and starting all over the next day. If my loved one is encouraged to attend college two weeks after discharging from a treatment program, or four months after discharging, or is still actively engaging in their eating disorder, or still uncertain as to what recovery looks like, how can they be expected to attend and thrive in college? The truth is they can’t. Attending college prematurely is not a recipe for success, but a recipe for failure.

3. The college environment as a whole does not promote recovery. Sending someone to college when their legs are still "wobbly" will likely cause them to collapse rather than strengthen. College students are faced with a whole new level of stressors and triggers around diet and exercise that they can’t escape... which are endorsed by roommates, college professors, student population, clubs, and fraternities and sororities. Typical and constant conversation on college campuses revolve around dieting, cleansing, "clean" eating, wanting to lose a few pounds, constant discussion of what others consider good and bad foods, constant judgment and commentary as to what food you choose to put on your plate, and direct line of questioning such as "How can you eat that? I could never eat that! I would weigh 500 pounds if I ate that!" College is an environment that promotes missed meals, unhealthy exercise, etc. all in the name of good health and staying fit. Actions and comments that are prevalent on college campuses will test and challenge even those in the strongest recovery. As you know, it takes a very long time for body image struggles to abate, making these comments even more triggering and dangerous. My loved one should remain in an environment that promotes health and recovery until they are flourishing.

4. Anxiety typically reaches a heightened state in a college environment. Many of our loved ones are plagued with anxiety and OCD, co-morbids that often times fuel the eating disorder. College will add more stress and anxiety rather than alleviate it. Especially for a new college freshman. We know that the increased pressure and anxiety of leaving home can lead to mental health challenges even for those not struggling with an eating disorder. Data from the 2013 National College Health Assessment II indicate that about one-third of college students across the United States had problems functioning because of depression in the last 12 months; almost half said they had felt overwhelming anxiety in the last year, 20 percent said they had seriously considered suicide in their lifetime, and 5.8 percent said they had attempted suicide. College students are trying to navigate a high-pressure academic environment, are faced with difficult social nuances including trying to establish friend groups, and trying to eat in the college environment where everybody is obsessed with dieting, thinness, exercise, constant talk of unwanted pounds and how to get rid of them. This is extremely challenging even in the best of circumstances. Self-care rarely makes the radar in these conditions.  Encouraging patients who are trying to recover, many who are plagued by perfectionism, to enter an environment that is riddled with anxiety and stress does not promote recovery and often times cripples them and will result in relapse or decompensation.

5. Recovery takes commitment and accountability. Many sufferers enter treatment after the spring semester. They know they need support but don't want to dedicate the time and energy necessary to attain recovery. They want a quick admission to a residential treatment center where they can be "patched" or receive a "quick fix" so they can get back to the life of doing college. They are not committed nor are they invested in their treatment. Their only motivation is to "get back to school or start school on time". This singular goal defines the length of treatment, type of treatment, and is the focus of the treatment team and often times the family. What would it be like if they actually committed to treatment and recovery and invested in themselves? If they actually remained in treatment for the recommended length of stay based on their physical and mental condition. If they actually made the commitment to be "present" in their treatment, to actually put recovery on their priority list rather then on the back burner. It is important for professionals to not let the client "drive" the timeline especially when their goals are not recovery minded and do not promote health and wellness.

6. My loved one must be able to properly and adequately nourish themselves before they attend college. Learning this skill takes a tremendous amount of time, practice, and exposure to different environments. Many of your patients who are recovering from an eating disorder have been doing so under the watchful eye of their family. Many still do not eat in restaurants, still try to skip snacks and meals, do not eat with friends or family, do not self-serve adequate portions without supervision, eat only their "safe" foods as a matter of routine, only drink water except for the occasional coffee or diet drink, have a very structured food regimen, would never ingest a food for which they do not know the caloric content, and left to their own devices their meal plan would look like a patient with orthorexia. My child may tell you they're following the meal plan prescribed to them and eating every bite, but the reality is often quite different. My loved one may "look" physically healthy, or could be underweight, or could be considered overweight, but does not have the capability to properly and continually nourish themselves without oversight. How can a patient who is terrified to eat in a restaurant enter a college cafeteria or a local college hang out and be expected to consume the nutrition their body needs for months on end without oversight and encouragement?

7. It is Imperative that my loved one have completely restored mental "state" and well practiced coping skills in order to thrive academically. Students must be in a state of physical, psychological, emotional, intellectual, social, and spiritual well-being before attending college. It is imperative that the mind, body, and brain be healed so that they have the opportunity to have a positive experience at college. Learning at the college level requires strong physical and mental health. Anxiety, OCD, stress, and depression, which often accompany eating disorders, are rampant on college campuses and will cripple and impair learning. My child might be weight restored and have complete healing of physical state, but is still mentally compromised. It is critical that my loved one practice and excel at coping skills to navigate increased anxiety and depression that often escalate when attending college. Unmanaged and overwhelming levels of stress, anxiety and depression are detrimental to academic performance and success.

8. My loved one needs time to mature. Due to the fact they were saddled with an eating disorder while an adolescent their development has been stunted. They may be 18 years old or a presidential scholar, but they do not possess the mental capacity and social experiences to live on their own. Although my loved one is physically healed, they may be unable to have a rational conversation without emotional escalation; they may not possess the maturity or social skills of their peers; they may not have the life skills to navigate living on their own; they may not have had the opportunity to experience social relationships with peers and may develop additional behavioral health problems as a consequence. Unhealthy maladaptive strategies to cope with the additional stress and anxiety of college can include binge drinking, drug use, cutting, self harm, pornography, gambling and sexual promiscuity. Several of these behaviors, such as binge drinking, are reinforced and supported in the social culture of the college environment. These maladaptive coping strategies can lead to significant personal, social, and community consequences from regretted actions while intoxicated such as "hooking up", sexual assault, rape, “soft” prostitution, and crime. These actions can change the trajectory of their entire life. Postponing college to allow my loved one to heal, to mature, to develop mental strength and stamina, and to learn to employ healthy coping skills is the only answer. Please support my loved one’s mental health and encourage them to honor themselves and their recovery by postponing college.

9. Delaying my loved one’s college plans has nothing to do with separation anxiety.  It can look like families want to defer their child attending college because they are not emotionally ready for them to leave home. Some may think we are "enmeshed". My child may complain to you that we are trying to “control” them by not allowing them to launch yet.  I assure you that is far from the reality.  While it is sad to see our children grow up and leave home, the sadness lasts only for a moment. This is part of the normal growth process in life. I have actually dreamt of the moment when my loved one would become a young adult and have the opportunity to dream their own dreams, to make their path in the world. The fact my loved one is not physically and/or mentally ready to attend college actually breaks my heart. My only hope is that they can spend the next year healing and attaining solid recovery so they can go on and pursue their dreams.  My job is to launch my child, but not until they are ready to do so without self-destructing. My loved one needs your support to understand this.

10. A contract will not guarantee that they enter or stay in recovery.  A contract is a critical "tool" to solidify and clarify what everyone's expectations are -- the patient, the family, the treatment team. However when my loved one is away at college it is extremely difficult to put enough adequate provisions in the contract to ensure that my loved one remains medically, physically, and mentally stable. Certainly you can put provisions in that they must see a treatment team, that they must maintain a certain weight, no eating disorder behaviors, and no mental decompensation. But who is going to properly monitor that there is no change in physical and mental state when they are hours away from home? A weekly or biweekly visit with a therapist or dietitian will likely not be adequate enough to properly assess their physical and mental status. And let's face it, often times patients aren't totally honest especially when they are not yet solidly in recovery.  They can say they are eating their meal plan, but are they? They can say they are not using behaviors, but are they? They can even maintain their weight, but that doesn’t mean that their eating is not very disordered. Things can change in the months between family visits. Drastically. Waiting until patients are solidly in recovery … Six months or year can make a huge impact. Maybe before entering into a contract that dictates what needs to happen for my child to stay in college a better idea would be to first write a contract agreeing that if my child remains solidly in recovery for one year that they then can attend college – with a new contract.

11. College is a large financial commitment, one that should not be taken lightly. Let's be honest. Treating an eating disorder is very expensive. Many families have suffered a large financial loss as a result of the expenses associated with eating disorder treatment. Many families have received limited to no coverage for eating disorder treatment centers, therapists, and dietitians. Families have emptied savings accounts, college funds, retirement accounts, taken second mortgages, gotten second jobs, and sold their homes in an effort to pay the expenses associated with securing eating disorder treatment for their loved one. Recommending that my loved one attend college when they are not solidly in recovery or on the brink of recovery could saddle our family with additional financial hardship. College tuition, room and board, and textbooks equate to tens of thousands of dollars every single semester. Putting this at risk by encouraging my loved one to attend college prematurely may potentially eliminate our ability to assist them financially and may create undo financial hardship on our family. My loved one needs your help to understand that attending college at their parent’s expense is a privilege, and while it is something we may want to provide for our child, we want to do so only when we feel they are ready to thrive in college.

12. The risk is not worth the potential reward. It has been stated that the relapse rate for sufferers that attend college is 50%. This is for patients who are reported to be in recovery. I'm certain the relapse rate for those just stepping into recovery, or trying to, is much higher. So one has to ask… Why risk it? Why risk the financial investment by the family. Why risk damaging the college experience? Why risk recovery itself? Why risk their life? Is attending college prematurely worth the small potential reward? It makes more sense to spend the next year getting feet firmly planted on the ground and solidly in recovery. If, once they are solidly in recovery, it is determined that college is a good fit and one of their goals, why not take this path? There is no timeline and there is no mandate that loved ones have to attend college immediately after high school. In fact, taking a gap year helps many to know what field they want to pursue. So as a treatment professional, we ask you to recommend to your patients that they put self-care as number one on their priority list.  Advise them to take the time that is necessary to practice recovery so that in the future they may have the opportunity to attend college and truly have "the college experience".  Help them to have the experience the way they dreamed college would be and not an experience riddled with unmanageable anxiety, regrettable choices and experiences, decompensation, and frustration.

As families, we often  lean on you to guide us as we help our loved ones recover from an eating disorder. Many times we are not completely EDucated as to what recovery looks like. We want to believe that our child can have a “normal” life. That our child can follow the timeline that appears to be mandated by society. Sometimes our intuition is telling us or we may not recognize that it's premature. That our child is not ready. That they should not be taking on the additional anxiety and stress by attending college when they're not completely physically and mentally restored. We look to you, the experts, to guide us. To help point our loved one and our family in the right direction.  To make the recommendation that does not leave us picking up the pieces. To help ensure that we are making the right decision. Ultimately, the decision is ours. But the problem therein lies in the fact that many of us do not have all of the information to make an educated decision. So most will go with the recommendation of the eating disorder professional. If this were your son or daughter who has battled this life threatening illness, what would you recommend? If this were a patient just receiving their final chemo treatment, what would you recommend? As families, we are asking you to make the recommendation that best supports and reinforces their recovery. After all, if our loved one has the opportunity to truly experience college solidly in recovery they may be the one that discovers the cure for cancer. Shouldn't they have that chance?

We thank you for your continued and dedicated support of our loved ones. Words cannot express our gratitude for your investment and commitment to our child's well-being.
 
With deepest gratitude,

Families Everywhere
 
Written by Cherie’ Monarch. A mom who lived this journey.

To contact the author: email [email protected] or phone 727-422-3668 

If you are caring for a loved one with an eating disorder, please contact Eating Disorder Family Support Network - Mom2Mom and Dad2Dad
on facebook.  No one should walk this journey alone.

Contact Alliance for Eating Disorders Awareness for support at (866) 662.1235 toll free or [email protected]. The Alliance for Eating Disorders Awareness ("The Alliance") is nonprofit organization dedicated to providing programs and activities aimed at outreach, education, and early intervention for all eating disorders. The Alliance creates a bridge for those needing and seeking help by connecting people with resources and information to assist them in their recovery.

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

9/28/2014

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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!!

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I Will March Because I'm Recovered

9/22/2014

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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.  



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

9/20/2014

8 Comments

 
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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.


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

9/16/2014

8 Comments

 
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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

 
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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.



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

8/28/2014

1 Comment

 
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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

 
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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. 


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