by Cherie Monarch.
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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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 Against Eating Disorders - MAED
With inspiration from Mothers Against Eating Disorders, a Facebook group of 1200+ mothers who have lived this journey.
If you are caring for a loved one with an eating disorder, please join Mothers Against Eating Disorders orFathers Against Eating Disorders on Facebook. No one should walk this journey alone. If you are an eating disorder professional, please join MAED Professionals where professionals and mothers 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 firstname.lastname@example.org.