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.

25 Thoughts as to how we can be a cohesive team to support my loved one in their recovery from an eating disorder

An Open Letter to all eating disorder treatment centers and their employees, eating disorder professionals, sufferers, and families of loved ones with an eating disorder …
 
Dear Treatment Center,
I want to thank you in advance for your time, investment, and dedication to help my loved one recover from their eating disorder. Words cannot express how thankful I am for the time and energy you will devote. I know we all share a common goal and dream for my loved one… that goal is RECOVERY.  Please know that I love my child deeply and would go to the ends of the earth to help them find recovery and support them in their recovery. We are attending your program because we want to have hope. You are our HOPE.

As you and I travel this journey together,  I think it’s imperative that we support each other and collaborate. After all, the more we work together as a team, the greater the chance for success - the greater the chance of saving my loved one’s life and setting them free. As you and I learn to work together, I wanted to share some thoughts and ideas to ensure we develop a strong working relationship and provide my child with the best opportunity for recovery.

1. The keyword is COMMUNICATION! COMMUNICATION! COMMUNICATION! If everyone communicates openly, honestly and frequently, ED cannot hide in the dark! That needs to be the cardinal rule. Together, at admission, let’s develop a communication plan including frequency, medium, and how you should be contacted if there is an urgent, life threatening situation or I feel my loved one is at risk of harm. This will help alleviate my concerns and fears.
    
2. Let’s empower each other. My goal is not to challenge you or to be adversarial. My goal is to help you understand my child as best as you can and to give you as much information as possible. I have witnessed their battle. Just as you consider yourself an expert on eating disorders, I consider myself an expert on my child. Please respect the fact that I have vital knowledge, and use me as an essential resource and an integral part of the team.
    
3. Please include me as part of the equation. If my child is 18 or over and I accept financial responsibility, please require my child to sign an ROI for me with no exclusions or exceptions. I should not be expected to be financially obligated, which often includes emptying my retirement account or savings accounts, obtaining first or second mortgages on my home, selling my home, or working additional jobs, but not be able to be involved in or have any other knowledge of treatment progress, struggles, or decisions. I am more than just a bank. I have willingly made sacrifices so that my loved one can undergo treatment. Just as I am integral to the equation financially, I am also integral to the equation from the standpoint that I am their mother and I will likely be the one supporting them when they discharge from your treatment program. It is important for me to have all the facts so that I can assist my loved one in making knowledgeable, life-sustaining decisions. Oftentimes there are multiple issues or co-morbidities, such as unknown eating disorder behaviors, trauma, suicidal ideation or attempts, alcohol, drugs, etc. Without this knowledge, I may unknowingly allow or support decisions or make comments that jeopardize their recovery or, more importantly, their life. It is important for the family to have the entire picture so we can keep our loved one safe, and support them effectively. 
    
4. Teach me that there cannot be a crack in the window. Teach me not to undermine the treatment team in front of my loved one. If I have concerns or questions, encourage me to come directly to the treatment team without giving the appearance that I am aligning with my child, and allowing ED to jump through the gaping hole as a result. If my child has concerns or questions, teach me how to not jump on the merry-go-round. Teach me to tell my child that I hear and understand their concerns and I think they should discuss those with their treatment team.
    
5. Please listen to my concerns when I contact you. Please don’t immediately dismiss me as an enmeshed or over controlling mother. Please remember that I know my loved one best. Oftentimes I have knowledge or gut instincts that need to be heard. Mommy intuition. It’s rarely wrong.
    
6. Tell me and please recognize that my child's brain is malnourished, even though they have BN, BED or OSFED, and that they are going to distort things. Just as we will hear things about the treatment center that is my loved one’s (ED’s) distorted version of reality, you will likely hear my loved one say disturbing things about me or what happened in our home that are a distortion of the facts. PLEASE take the time to check in with me, the rest of the family, and have separate family sessions to ascertain what the truth is. This is essential to move forward and promote healing for my loved one, for me, and my family. It is also important to recognize that treatment is not open-ended and is expensive. To waste time, months upon months, discussing issues that never happened, is diverting energy and time from the real topics that need to be discussed.
    
7. Teach me how not to enable the eating disorder. Teach me the words to say. If my child calls complaining about the treatment center, crying, hysterical, angry, telling me they don't belong there, they're not sick enough, promising the world if I just let them come home… Guide me to tell them that I love them and they are exactly where they need to be. Encourage me to receive outside training or therapy on how to set boundaries and how not to enable the eating disorder. I know I did not cause my child’s eating disorder, but I need to learn how not to contribute to it or enable it. I need solid tools. I need to learn how to show my love for my child, even when maintaining boundaries. Please know that I do not want to enable the eating disorder. I just love my child and want to see them recover. Please give me the knowledge and tools to accomplish this.
    
8. Teach me how to tolerate their distress so that I do not jump on the roller coaster with them. Teach me how to endure feeling their pain. Teach me not to rescue them. Encourage me to gain skills to remain emotionally regulated and tolerate their distress. I need you to look me in the eye, connect with me, and say, "You and your husband need training to learn how to set boundaries, remain emotionally regulated, tolerate distress.  GET yourselves into weekly DBT training, preferably with other parents, so you can learn real ways to help your loved one.” So important that my loved one learns how to feel their feelings and their distress, employ coping skills, and then navigate through them without me trying to rescue them and save them from distress.
    
9. Please understand the hell that our family has likely endured before my loved one entered your treatment program. My loved one has been diagnosed with and is battling a life-threatening eating disorder. They likely have been battling for months or years before we arrived at your program. It has devastated our family and has shaken our home to its very foundation. Our family may be in ruins or struggling to survive. I have been desperately trying to save their life; setting up outpatient treatment teams, trying to nourish them, trying to get medical practitioners to listen, battling insurance companies, and trying to figure out what treatment option is best. This is a hell that no one can understand until they have lived it – 24 hours a day, 7 days per week. Please recognize that I am exhausted, scared and numb. Please show me compassion and understanding with no judgment. Please know that your treatment program is likely hours from my home. My life is in total upheaval. I am terrified. This is no different than having a child battling cancer. In fact, it’s oftentimes worse. No one is bringing me meals, cleaning my home, sending me cards, or providing respite care. Please hold my hand and help me navigate the day-to-day challenges. I am a critical piece to this equation.
    
10. Teach me that my loved one will not be magically cured. That treatment is a journey and will have many twists and turns in the road. That there is NOT a magic cure or pill.  That it cannot be solved or resolved in a few weeks or months of residential treatment and/or PHP. Help me to understand that treatment is not one-size-fits-all. That sometimes we need to change the approach or the environment. Please manage my expectations early. As hard as it is for me to hear, it’s important to know that my loved one will likely not be that one in a million for who this is just a little blip, where they will receive treatment and get right back to their life, like nothing ever happened. Tell me it may take from 2 to 10 years for my loved one to recover from their eating disorder with lapses and relapses along the way. Teach me what relapses and lapses look like so that I recognize them before things are critical. Help me understand that even after weight restoration the journey can be lengthy – that the goal is restoration of physical and mental state. Inform me before they discharge that often times the most difficult part of the journey is when they return home, to the environment where the eating disorder existed. That they will not return home magically cured. Although it pains me to hear this, I need to know this. Please be honest and tell me no matter how much I love my child I cannot save them from ED. No matter what I do, not matter how hard I try, recovery will take as long as it takes. Tell me that every step in this journey is critical and helps get to the end result. Tell me that FULL recovery is possible. I need to be able to hold on to hope while managing my expectations.  
     
11. Please update me regularly as to how things are progressing...both good steps and not so good. I need to understand the challenges, whether it is difficulties with treatment, my loved one, insurance, or psychiatric or medical stabilization. I do not want to be surprised and may be able to address some of the challenges before they escalate. Please do NOT only call when it is at crisis level. We would like to avoid a crisis if at all possible.
     
12. Please don’t assume that I am enmeshed with my child just because I want to be involved in decisions and their treatment. Whether my loved one is an adolescent or adult, I likely have been fighting to save their life. This was not by choice, but by necessity. I did not choose nor did I want to have to remove my loved one from college, from high school, from activities, from jobs, or from life. Never in my wildest dreams did I ever think I would be feeding or interrupting the behaviors of my teenager or my adult child. Never did I think that I would be faced with making difficult decisions because my loved one was unable to make decisions that promote life. You see, I had dreams for my loved one. I envisioned that they would thrive in high school, go to football games and proms, have multitudes of friends, and be living life to its fullest. I dreamt my loved one would attend college, as an independent adult, full of hopes, and creating their own dreams and goals. Never did I imagine that these would be crippled by a life-threatening illness. We likely are at your center because we have exhausted all other options and made many wrong turns. Some of these turns were most likely directed and encouraged by professionals. I may be “enmeshed” in their current life because I’ve had no other option. I have had to EDucate myself quickly in an attempt to try to save my loved one.  My beautiful child, one that I birthed and nurtured, is being held captive by a terrorist. I’ve had no choice but to fight for their life. Because of this, I am concerned and invested in decisions that are made regarding their treatment. After all, I am the one that will be left picking up the pieces if things crumble. Please let’s work together to give my loved one the best support and best skills possible to navigate this journey. I am here because I have hope and I need your help. Please DO NOT tell my child that I just wish to control them, and I am enmeshed with them. That could not be further from the truth. The only thing that I wish for my child is that they will become an independent adult living their own life. A life full of options and surprises. The only role I wish to play is to stand on the sidelines, cheering them on and watching them flourish.
     
13. Teach me how to validate their feelings effectively and how to be vulnerable. I want my loved one to be able to feel and to know that I respect their feelings and that their feelings are valid. At times I may not effectively convey this because I am exhausted, frustrated, and scared. I want them to know that they are allowed to feel what they feel, even if they perceive things differently than I do. Teach me how to support my loved one without undermining my own feelings. Also, help me to understand that it's important to show our vulnerability in front of our loved one, so that they have permission to show theirs. Often times by embracing our own vulnerability we can promote healing for our loved one and for ourselves. Help me learn how to do this effectively.
     
14. Teach me that my loved one is going to call about the food. My loved one is going to call pleading that the food is not good, or it's not healthy, that they want to go to a different treatment center that has “healthier” food, that they're being overfed, that their stomach is hurting and distended, that they're constipated. Teach me that all foods are good, that foods do not have moral value. Teach me that nutrition, and sometimes a lot of it, is key to healing. Teach me that the only way forward is through the food. It is important that I am prepared for this call. Teach me the words to say.
     
15. Please know that my child did eat cake. No matter what the food – cake, pasta, fats, or ice cream – please know that my child did likely eat them prior to developing an eating disorder. Please have the dietitian speak with the family. The patient is not always truthful with the RD. They may tell you their favorite food is their fear food (many do), to avoid working on their real fear foods. Treatment is costly and limited so it is critical that they utilize this valuable time working on actual issues and feelings surrounding the real fear foods. Please remember that I am a witness and am an asset to recovery. I likely have vital information. Please use me as a resource.
     
16. Teach me how to support and empower my loved one through meals and behaviors. When you tell me to offer support when our child eats with us, what does that look like? Role play with me to help me understand what to say or what not to say. What do I do if my child refuses to eat or is using behaviors? Do I sit in silence, paralyzed, or do I encourage? Do I attempt to distract with card games, TV shows, and family banter? It is imperative that this is discussed openly, in advance, with me and my loved one simultaneously. There needs to be a firm plan in place. Even if an adult, the family needs to know HOW to help.
     
17. Teach my loved one and my family the physical symptoms and phases of recovery. Recovery typically involves our loved one’s body transforming through some awkward stages as it heals, becomes nutritionally stable, and goes through the vital organ insulation phase. Explain how the belly and midsection will get puffy and round to heal and protect their organs. That this is normal, part of healing, and will redistribute in 6-18 months. Clarify how this typically results in a feeling of discomfort, pain and distress for the sufferer. When we don't know, we assume you are over-feeding them, because that is what the sufferer tells us. Teach us how to support them and encourage them through this phase.
     
18. Please teach me that I did not cause their eating disorder, and that they did not choose it. It is an illness. It is not for attention. Whether genetics, biology, negative energy balance, and/or environmental factors are at play, or some combination thereof, it is an illness with many underlying mechanisms, co-morbids, and co-occurrences. It is imperative that I understand that I did NOT cause this. It is also critical for my loved one to understand that they did not choose this, that the eating disorder chose them. Help us understand that it can be the ugly stepsister for anxiety, OCD, and other mental struggles. Help free both of us from the guilt and the pain.
     
19. Teach me that self-care is critical. Insist that I receive support for myself and my family outside of the treatment setting. Tell me that self-care is mandatory, even though it is counterintuitive. Explain to me that I cannot help my loved one if I am not breathing myself. Encourage me to obtain my own therapist and find peer support groups to help me learn coping skills and tools to navigate this journey with my loved one. Teach me that this is not a flaw or a sign of weakness, but this empowers me and allows me to put my oxygen mask on.
     
20. Advise me and my loved one that they cannot discharge from your program and immediately return to college. That they need time to practice recovery and employ the coping skills and tools that they have learned at your program. Tell me and my loved one NOT to entertain college before they are solidly in recovery and abstaining from ED behaviors for at least six months. Inform us both that even having an air-tight contract with a full treatment team in place at college will not protect them, especially if they are just out of treatment. Without daily supervision, the eating disorder can easily take the reins back. Parents need to know that ED can morph from one form to another. So even if you have a child that has RAN (Restrictive Anorexia Nervosa) and they go off to college, the only really "verifiable" symptom you can measure is weight. However, it is crucial to understand that they can be very disordered and struggling without losing weight. Educate us that bulimia at college is and can be just as DEADLY. That the college environment often does not promote recovery from an eating disorder, but fuels the ED. It is important that we have this information as early as possible so that expectations can be managed.
     
21. Teach my loved one that no one can recover from a life-threatening illness alone. This is no different than having open heart surgery and returning home after two weeks in hospital. It is life altering. It is imperative that they have a support system. We understand that at some point it is their choice and battle to fight, but if they have support around them – family, friends, roommate, someone they trust – they have a better chance at recovery. Encourage them to embrace and utilize their support system during and after treatment, just as a heart patient or cancer patient would do. Making a decision to discharge from treatment and live alone, across the country from family and friends, is isolating and can be deadly.
     
22. Let's design a roadmap together on what the next step looks like and assemble a support team. Please don't discharge my loved one without a solid plan in place, without an appropriate and educated outpatient team, and without appointments being scheduled. When this happens my child is sent home with little to no local support for the first couple of weeks as they are attempting to get appointments. This is a critical period. A time when they need the most support, not the least. Please let's work together, with my loved one, to have a firm plan in place. We want a recipe for success, not for failure.
     
23. Please make sure that I am informed, educated and prepared when my loved one discharges. I need to have a step-by-step plan and marching instructions, especially if my child is an adolescent or young adult. Far too often they are sent home and the parent’s role has not been solidified. I flounder because I see my loved one struggling or starting to decompensate and I'm told either by the outpatient treatment team or my loved one to-step back. I am paralyzed trying to figure out what to do next. Please give me tools. Inform me what meal plan my loved one is supposed to be following or if there is a meal plan. Is the meal plan for maintenance or restoration? Does it reflect that my child may be 12 years old, is still growing, and needs adequate nutrition to continue their development? Did my loved one discharge at goal weight? What is their target weight range? The only way for our family to provide adequate support is if we have knowledge. Continued adequate nutrition is necessary for recovery. Prepare and educate me how to ensure there is no lapse in nutrition.
     
24. Teach me how to support my loved one after discharge with a focus on RECOVERY and LIVING LIFE. The bottom line is my loved one will be discharged from your center and I will need to know how to support and encourage them. No one can recover from a life-threatening illness alone. I will need to learn to meet them where they are at and not saddle them with additional burdens and stress by making them adhere to a firm timeline.  Teach me and my child that recovery is THE top priority, that school and jobs can wait.  However, whether my child is an adolescent or an adult, it is imperative, at some point, that they reintegrate into life and start living life. Help me understand that it is not acceptable to sit in isolation trying to escape life. Teach me how to be a warm, nudging dolphin, yet provide firm, loving boundaries and support.
     
25. Please teach me how to be an asset in my child’s recovery. Empower me. Don’t worry; I am not looking for control. Please reiterate to the outpatient team that I can be an asset and an integral piece to recovery. Just as if my child had cancer, they will need support reintegrating into the environment that they left. Please do not make me appear like I am the enemy. Please don't encourage the OP treatment team to tell me to step back and not say a word. I am the one that generally has eyes and ears on my loved one. I will likely be the first one to see if they are lapsing, relapsing or decompensating in any way. Instead, guide me on what to say and how. Please ask me and listen to me when I'm sharing my concerns. Very likely my loved one – or rather, their ED – is not being truthful with you. Please allow my concerns to enter into the treatment equation. After all, I am the one left picking up the pieces when they collapse.
    

The ultimate goal is for my loved one to recover from their eating disorder and live a healthy and happy life. I have to believe that the key to making that happen is to have a cohesive treatment team and to work together to help them find recovery. The key to making this happen is open and honest communication. Let’s develop a solid plan together. I want to work with you, not against you. We are better and stronger TOGETHER!
 
With great hope,
 
Mothers Everywhere

Written by Cherie' Monarch, a mother who has lived this journey. To contact the author, please email Cherie' at [email protected] or call 727-422-3668

If you are caring for a loved one with an eating disorder, please join Eating Disorder Family Support Network - Mom2Mom or Dad2Dad on Facebook.  No one should walk this journey alone. If you are an eating disorder professional, please join Eating Disorder Family Support Network - Professionals where professionals and families can learn and grow from one another.  

If you have been affected by an eating disorder or disordered eating and would like further information or help, please Contact Alliance for Eating Disorders Awareness for support at (866) 662.1235 toll free or [email protected]

By Leah Dean, Executive Director, F.E.A.S.T.

This October, I was fortunate enough to be able to travel to Washington DC for two full days of eating disorder community and advocacy events.

DAY ONE: BUILDING COMMUNITY

Day one began for me as I put the finishing touches on my introduction for F.E.A.S.T.’s Lunch & Learn with Dr. Mark Warren, Chief Medical Officer of the Emily Program. Dr. Warren gave a wonderful presentation to 37 guests over lunch on evidence-based practices, levels of care, and an impromptu discussion about HIPAA rules as they apply to mental health treatment.

Many of those attending the lunch already knew each other through F.E.A.S.T.’s “Around the Dinner Table” Forum and Facebook, but most had never met in person. Every time I see ED caregivers come together face-to-face, I am amazed by how bonds forged over distance and through tragedy and struggle can equal or surpass the strength of relationships born of time and togetherness.

After lunch, we joined with hundreds more parents, professionals and patients to attend the 2nd Annual M.O.M. #MarchAgainstED on the west lawn of the US Capitol. The ED Parent Advocate community is growing and for every one person who traveled to Washington DC, there are hundreds of us who are active in online groups, forums, and non-profit organizations. Effective advocacy requires a community voice, and it was wonderful to see members of different groups coming together, in person, for common goals.  

Though chilly and threatening rain, the event brought families, professionals and patients from around the US (and the world) together to laugh, cry, dance (yes, there was a flash mob!), listen to speakers, tell their own stories and support each other.

Putting faces to the life and death concerns that families face every day, everywhere, is powerful. I was
touched by the posters with photos of loved-ones, not just because of the faces, but because of the care and focus that was involved in creating them - on-site - using only markers, glue, poster-board and messages of love.

DAY TWO: ADVOCACY & SHOWING UP

Day two began early, at Starbucks (where I ran into a fellow citizen lobbyist), and then on to the EDC Lobby Day Training. The Eating Disorder Coalition runs Lobby Days every year in the Fall and Spring. This time over 200 people registered and showed up for a full day of citizen lobbying to try and drum up support for the Anna Westin Act. It was the largest group ever at an EDC Lobby Day.

All the participants were divided into groups by state. We had an EDC trained leader and a list of appointments to keep with members of congress from our state. At each office, we were greeted by a congressional aid and invited to share our experiences and our reasons for supporting the Anna Westin Act. To me, the most important part of this act is the training component which uses existing NIMH and SAMHSA funds to provide “training for health professionals, school personnel, and the public to identify eating disorders, intervene early and prevent behaviors that may lead to eating disorders.”

One of the biggest barriers our children face is early identification, which can and should happen even before a child is brought into their doctor’s office by a worried parent. This training is so desperately needed to break down the myths about eating disorders and to identify dangerous eating and exercise behaviors that can seriously compromise the health of a growing child.

This was my second time lobbying on Capitol Hill, and the most important thing I have learned about citizen advocacy is that simply showing up is an effective and powerful tool. Showing up and speaking out isn’t easy, especially when families are exhausted from caregiving and isolated by stigma in their own communities. Yet even one personal story can create change as part of a collective voice of a community.

While I do not wish the pain and suffering of facing an eating disorder on anyone, I am grateful for the friends I have made around the world as my own family has struggled to support our daughter towards recovery. The comfort of knowing that there is a community out there ready to support me, and vice versa, is invaluable. By supporting each other, in groups, on a forum, or through advocacy makes a difference because it helps to build community and a community voice.

Look out world! The ED Parent Advocacy community is here and we are going places and making a
difference!

by Ellen Bennett, MOM, KMB for Answers

This is an event that I really wish I was not part of; I wear a green shirt.  I attend because I am one angry MAED (Mothers Against Eating Disorders)momma who is passionate about helping anyone impacted by an eating disorder.  My frustration and anger about eating disorders has sent me on a quest to learn as much as I can about ED; current practices and treatment, new research, training, awareness and engagement on a national level to advocate for mental health reform.  I have experienced everything we are fighting  for; misdiagnosis, untrained medical professionals, lack of awareness and understanding, insurance obstacles, premature discharge, parent blaming; the list is endless.  I watched my daughter slowly starve herself to death and there was nothing I could do to get her the treatment she needed.

This issue is so dear to my heart, nothing will stop me from taking time off from work, traveling to DC from upstate NY, this year I was solo; knowing that when I get there I will be surrounded by people who “get it”.  I may know them from facebook or other social media or perhaps we met at the march last year or at lobby day.  I attend because, it is a place I feel connected; I feel that I am truly making a difference, making my voice heard.  And at the same time we all feel empowered that our children’s lives mattered, that they did not suffered in vain; we will be a catalyst for change.  Our hope is that the momentum that we feel at the march will resonate through the halls of the Senate and the Legislature and this injustice of inadequate and inappropriate care will no longer be an issue.  There will be no more shame associated with ED, no more stigma associated with mental illness, brain-based illnesses will be treated the same as any other disease of the body; “the brain is part of the body” will be the norm.

As we gather and share our posters, sign the card on the yellow roses, listen to speakers,  greet our sisters and brothers brought together by a common struggle, heart ache and sorrow we give each other strength, courage, hope and an overwhelming sense of peace;  we will not be silent, we will raise our collective voices to save lives.
 
There was a moment during the march when a speaker acknowledged those of us who were wearing green shirts and asked that others reach out and give us a hug.  I was overwhelmed by the number of people who came up to me to give a hug; overwhelmed and moved, a complete sense of shared deep caring and concern; I was embraced by love and understanding.  A collective shared loss, very moving and healing.

As the sun set and our candles were lit in remembrance, a sense of purpose, hope and shared commitment filled the lawn and we all dispersed into the night feeling forever changed and forever impacted by the stories, the words of Patrick Kennedy giving us a sense of collective power that an influential colleague cared enough to break the silence of secrecy to say, “NO more”; mental illness is a national issue and it should be treated with the same dignity that all other major health issues are treated.  This powerful speech gave us all a sense of sincere understanding and caring about the issues associated with ED and the importance of why we were there.  Our purpose and need to have our concerns heard was acknowledged and validated; we all left feeling a sense of accomplishment and inspired for lobbying the next day. There was a common sense of purpose, a reason to come from all across the country to say change must happen, no one should die from ED, not one should suffer for years and years; recovery is the answer. 

The MOM March 2015: a powerful and amazing experience that has inspired me to continue to fight for those we have lost and for those who struggle.  For me, it is a sense of fighting for my daughter and all the sons and daughters, moms, fathers, sisters and brothers around the world who are impacted by ED and the devastating ripple effect that is left in its wake.  Recovery is the only answer.  ED is a treatable illness, no one should die.

www.MarchAgainstED.com

It was Sunday morning, the weekend before the March.  I was sitting across from my husband sipping my coffee while he worked on his crossword puzzle.  I was scrolling through the MAED posts from the night before on my IPad when I looked up at him and said, “I need to go to the March.”  He said, “Yes, you do.”

So I got up at the crack of dawn only a few days later, on Tuesday morning, and boarded a commuter flight from New York to Washington, DC.  I found my way to the hotel where everyone was staying, all by 10 a.m!  One by one, I began to finally meet the women who I have travelled this journey with for over a year, a road that I had been walking alone for over 6 years prior to finding MAED (Mothers Against Eating Disorders), a secret Facebook group comprised of over 800 moms on this journey.  In our day to day life, how many people really understand what we are going through when our child is suffering from an eating disorder?  In an instant, I was surrounded by moms (and some dads too!), and all I had to do was to look into their eyes to know they get it.  It was magical.

As the day rolled on, we could see how much work and planning had gone into the event.  A stage appeared right there on the lawn of the Capitol.  There were posters and roses and a panel of distinguished speakers.  There was music , dancing and snacks!  As I sat on the lawn listening to the speakers, I felt a wave of emotion that stayed with me the entire afternoon.  Tears welled up and trickled down my face at random moments.  We soldier on, day in and day out, trying to keep it together, but here I was, in the presence of some who have lost everything to this horrific disease.  I was humbled by their presence.  There are moments that will stay with me forever.  Those are the moments sitting one on one with a mom while she tells you her story.  Each story was unique, each one heartbreaking.  I am privileged to have been in their company. 

We have to keep fighting so that we build knowledge and understanding.  In the old days, mothers lost their children to infections and childhood diseases that have largely been eradicated because of the advancement of medical science.  We have to keep fighting so that moms of the future don’t have to suffer the losses of our generation.  Someday there will be early intervention, comprehensive treatment and recovery support.  There will be no judgment and no stigma.  There will be better medications and science to support their use.  As Patrick Kennedy said, an illness in your brain should be treated the same as an illness anywhere else in your body. 

We cannot afford to stand still, we have to keep moving.  When I went to the March I saw how tirelessly some work on behalf of all.  Whatever havoc ED wrought in their lives, they did not turn away from it, but instead they rallied and they created this amazing event to benefit all affected by this disease.  If you ever feel cynical about how government works, come to a Mom March.  You can see how we all have access to our government officials, how they represent us and how they want to hear from us.
I boarded my plane at 10 pm that night to head back to Connecticut.  I was not able to stay for Lobby Day but I have been so impressed with the awesome reports and photos from the efforts of that day.  Thanks again to all the organizers, sponsors and partners.  See you next year – MOM MARCH 2016!

By Kitty Westin, Anna's mom, EDC Board of Director's, Fearless leader

October 27 and 28, 2015 were historic days for the eating disorders community. Hundreds of people who are affected in some way by eating disorders went to Washington DC to speak out and ask Congress to help us in our fight against them.
 
On October 27th Mothers Against Eating Disorders (MAED), the Alliance for Eating Disorders Awareness, and the Eating Disorders Coalition joined forces with 12 co-sponsors and 43 partners to bring approximately three hundred people to the west lawn of our nations Capitol. The goal was simple; to bring attention to eating disorders. The second annual MOM’s (Mother’s and Others) March on Washington brought people from across the United States and as far away as Australia to send a clear message to Congress and the public that eating disorders are serious illnesses that deserve attention.  The passionate group that gathered together to raise their voices, listened to empowering speeches, told their personal stories and supported each other. They came to Washington DC determined to tell their stories and expecting that their voices will be heard and I don't think anyone left disappointed. The overall message of the rally was; we need to pass the Anna Westin Act NOW because to many are suffering, to many are dying, and we can make change happen. Organizer Cherie Bilby Monarch said; “The only way things will change is for voices to unite and organizations to collaborate.”  I can safely say that our day on the west lawn united voices and organizations in an amazing and powerful way.
 
Following the MOM’s March, over 200 citizen activists stayed in, or traveled to, Washington D.C. to attend the Fall Eating Disorders Coalition Lobby Day on October 28th.  We had advocates from 31 States participate. We were lobbying for speedy passage of the Anna Westin Act (H.R2515 & S.1865). The AWA of 2015 is the first eating disorders legislation to receive bipartisan support at introduction in over a decade. The enactment of the Anna Westin Act will improve care for eating disorders by providing training for physicians, health professionals, school personnel, and the public as well as treatment coverage by clarifying the Mental Health Parity Bill that was passed in 2008. The House version of the bill also addresses “truth in advertising” by asking the FTC to conduct a study on the impact of using digitally altered photographs in advertisements. The results of lobby day are truly impressive. Voices were heard loud and clear and 10 new Members have signed on as co-sponsors of the bill in the first week. We are getting much needed Congressional hearings and just yesterday Congressman Lance (R-NJ) and Congresswoman Matsui (D-CA) championed a bipartisan amendment to include the provisions of the AWA in Congressman Tim Murphy’s (R-PA) comprehensive mental health reform bill, the Helping Families in Mental Health Crisis Act (HR 2646). This is truly a victory for all of us!
 
I think I speak for all who attended the MOM’s March and Lobby Day when I say; There is an energy around the Anna Westin Act that feels electric! I have hope, I believe this will happen, and I am grateful to everyone who attended the events both in person and virtually. Our champions in the House and the Senate are working hard and have prioritized getting this done.  I am proud to be one of the “warriors” with boots on the ground working toward a day when there are trained professionals, parity is enforced and we know the impact that photo shopping has on our young people.  For updates, action alerts and information go to www.eatingdisoderscoalition.org. This is a fast moving target, there is much left to do, and we continue to need your voice to make it happen.

When I first decided to go to the Mom March, I was hesitant.  Being thrust into the ED world 4 years ago has been such a frustrating and scary experience.  Could showing up for a March and attending Lobby Day really make a difference and does it matter?  Will anyone listen, will anyone care?  I don't really know any of these women, I met them online, we have barely spoken?  But I booked the hotel, flight,  and went anyway, I need to at least try and make a change, right?

The bond we all share is amazing.  I met a wonderful woman at the Airport who lived 10 minutes from me, yet we had never met before.  We had so much in common and talked the whole way there.  She lost her daughter to ED several years ago, but yet she shows up twice a year and lobbies.  Her energy and advocacy is amazing.  I now consider her my friend. 

Meeting everyone at the March was overwhelming and amazing all at once.  Many I recognized right away, some I had to be reminded who they were.  We all hugged, shared stories and bonded.  There was dancing, speeches, advocacy and of course we had fun and truly connected.  To hear Patrick Kennedy speak about all the struggles we have had with such elegancy and truth was shocking.  It was like he was telling our story, but we all know; it is all of our stories.   We all have a story, so many similarities but yet  so different and at different places in the journey.  I grieved for the lost angels and vowed to fight harder so no one else needs to experience this.  The reception after the March was another great time to connect.  To be sitting in a hotel lounge, sharing food, drinks and conversation with so many people and everyone GETS IT.  No matter what was said, there was no judgment, just general concern and compassion.  No one minces words and steps around anything that needs to be done, to get a loved one to the next step.

Lobby day was another great experience.  I was put in a group with other Wisconsinites.  None of us had met before, yet we all connected and worked together throughout the day.  Two in our group had lost their loved ones, two were recovered, and two of us had children in various stages of recovery.  Every staffer we met with was courtesy, engaging, and generally seemed to care and wanted to hear our stories.  To be walking around the halls of Congress and House of Representatives and all the beautiful architecture and history amongst us was breathtaking.  Every staffer said the same thing, "Our representatives want to hear from us, ask them to support the Anna Westin Act, tell them your story."  I do plan to follow up with each one of them to remind them we need their support so all can have access to treatment with quality professionals.  Will I go back? Absolutely, change is needed and we can make a difference.  No more green shirts.

by Joanna of the Middle Ground

​Self-reliant.

That term has stuck to me for much of my life. (That, together with my mother’s fond saying that a shark could bite off my leg and I still would refuse to cry.)

My independence is a chicken-or-the-egg kind of quality. Have I always preferred to solve my own problems? Or was the descriptor “self-reliant” innocently bestowed on me at some point during childhood, and I spent the rest of my development living up to it?

However it originated, this self-reliance ultimately became an unwitting ally for the eating disorder that developed when I was just shy of 14 years old. I don’t know why I began skipping lunch at school. All I knew was that I was in pain and confused, and I didn’t know how to tell anyone. So, I found a solitary way to cope.

Back then, I had no concept of what sort of enemy I was facing or just how vicious it would become over the next eleven years. I tried over and over again to forge a healthier relationship with food, only to slip backward and further into anorexia. Still, I told myself that there was no way my “issues” with food could be that bad.

The problem was that I didn’t know these “food issues” were actually an illness. I believed that I was to blame for incurring this hell—and therefore I deserved the pain and misery it brought me.

Of course, that is the paradox of eating disorders: The sicker you get, the harder it is to see how bad things are getting.

I finally sought help at the age of 25. But that old self-reliance followed me into recovery. Just as I’d hidden my eating disorder from my family and friends, I kept my recovery secret: I admitted to treatment without telling any of my loved ones; I assumed the burden of fighting my insurance company; I drained my savings to stay in treatment and wrest everything I could from it.

Whether help was available or not, I always preferred to do things my way—until I went to Washington on September 30, 2014.

I had decided to attend the inaugural M.O.M. March because I, like many eating disorder patients, had terrible difficulties accessing the treatment I needed. I wanted justice for myself and for others who had experienced discrimination at the hands of their insurance companies. While I did get to lobby for those issues, I also left with much, much more.

As I sat on the west lawn of the Capitol listening to the testimonies of recovered people, family members, clinicians, and advocates, I began to realize I was one member of a large community. I was in awe that so many people cared about this issue—about my issue. These people understood this strange illness, confronted the same challenges that I did, and, most consoling of all, knew just how lonely the road from an eating disorder into recovery can be.

That day I learned that countless others had walked through the same dark woods that I’d accidentally wandered into at 14, and they had made it to the other side. If I stayed close to this community, they would show me the way out.

In the end, there are many reasons that I march—among them the chance to protest the wildly unjust insurance situation that we who suffer mental illnesses face.

However, the reason I keep returning to Washington for marches and lobby days, and why I will keep coming back even after we achieve our legislative goals, is because my fellow marchers are my family. This family offers me hope—hope that help is out there, that recovery is possible, and that I’m not alone on this journey.
​
Today, October 27, 2015, hundreds of people with interweaving stories will come together, bringing the solitary among us into solidarity with us.

I can tell you all about the healing power of this kind of connection—but I think you ought to come experience it for yourself.

I’ll see you there.

No one understands the pain.

My daughter has struggled with an eating disorder for the past 10 years. She has been in various treatment centers for the past 7 years. During this time our family has expended a large amount of personal resources, that insurance companies refused to cover under the guise of medical necessity. It has ripped us emotionally to have to deal with the eating disorder and the insurance component has only added to the burden. Over the course of the past years, after visiting at many treatment centers, I have also met others struggling as well. I have seen many lose their life. There is a huge stigma attached to eating disorders that many refuse to talk about. I have found it therapeutic to talk openly about the struggles, but I find myself among the select few for a father. Most of the fathers that I have spoken to are embarrassed or feel uncomfortable discussing the illness.
 
I think it is time for Eating Disorders to be treated like any other illness.

It is time for insurance to recognize that this is not a disease of choice.

I March for my daughter as well as others struggling.

I March for all the dads. I March to end the silence!