A Survivor's Story of How Words Can Help or Hurt

by Kylie Jensen
Dietetics Student Senior WMU ED Survivor

When I was in high school, my mom would pack me the most beautiful salads you have ever seen. The lunch ladies used to compliment how beautiful and healthy the salads looked and early in my junior year, one lunch lady had asked me if I was trying to lose weight. A minor thing to discuss really, since my struggle with orthorexia, anorexia nervosa, and then bulimia nervosa have been promoted, like most, from a multitude of things.

Many of people have interviewed me about my experience and many fellow classmates and friends have asked for my story. And they always ask, “What started it.”

I hold all the traits of the typical ED survivor:

  • Genetics: a bad relationship with food and eating disorders run in my family.
  • Competitive sport: I was a competitive dancer for 16 years.
  • Intellectually inclined: I graduated high school with a 4.6.

I could continue to list off some of these characteristics, but I think you get the point.

So when I began to open up about my story and reflect on what really did ‘start’ it, I began to notice patterns. My struggle began with a repeat of one simple comment, “have you lost some weight? You look so good.” Now I am sure a lot of people would just love to have someone ask them this, but this type of comment makes me sick.

As humans, we are already so fragile and when Ana began to control my body and mind, I reached my breaking point. I lived two separate lives. The “good” life where I went to school smiling about the new way I looked, telling everyone about how healthy I ate and how good it has made me feel, and preaching about my new amazing way of life on social media. This kept the compliments coming, and Ana happy. But then when I was home alone in my room, running my hands up and down my chest noticing bones I have never before, Google searching and Instagram searching “anorexia” and shaking it off, wiping the tears away, I was living the “bad” life.

Ana left me in constant debate with myself. The devil on my shoulder grew big and strong screaming in my ear, “you look great, but not great enough. You are better now, but not the best.” While the angel on my shoulder shrunk smaller and smaller whispering, “you are stronger than this. You are not okay. You are not yourself.”

Now, as I finished my Junior year of College, four years later, I can’t help but think how things would have been different if that lunch lady had asked how I felt instead of if I was trying to lose weight. Maybe, I would have told her I wasn’t. Maybe I would have told her I felt great but she wouldn’t believe me, and get me help. Maybe, my struggle would have ended a lot sooner.

If we stopped commenting on other people’s weight loss/gain and asked instead, “hey how do you feel? How you doing lately?” could we help eliminate ED? If we notice people really restricting themselves nutritionally, judging their body in the bathroom mirror, and asked them this simple question, we could change someone’s life. We could help them when their little angel on their shoulder is crying out for help.

I am trying to be the person I wish I had. It does not take a toll on someone to just ask them if they are okay and really listen. I hope that any one who reads this will understand how greatly our words and actions impact everyone around us. Be the person who takes ten seconds to ask someone if they are okay. Be the person to notice that maybe they’re not. Be the person you would have wanted yourself to have when there was a moment in life where you were at your breaking point.

 

My Son Has an Eating Disorder

In the beginning...

by Lynne

As I sit here trying to write my first BLOG ever, I have all these emotions and feelings swirling around in my head. What do I say and where do I begin?

Four years ago my son, who was a freshman in high school, was diagnosed with an eating disorder. I was numb. How could this happen? What did I do wrong? He was always such a good kid. Well liked, good grades, thoughtful and honest. My happy go lucky kid never showed any signs of the turmoil that was brewing inside of him. I remember thinking "but he's a boy; this only happens to girls." I soon found out that ED has no gender preference and that there is a rise in eating disorders among males.

Our son came to me one day and told me that he thought something was wrong. Ever since watching the 2012 Summer Olympics, he had been cutting out fat and sugar from his diet in an attempt to become more healthy, but he was losing weight and strength. Tiny little hairs had appeared on his arms and the back of his neck. Apparently, this new hair, called lanugo, was a way for the body to keep warm. He also had patches of very dry skin.

After our conversation, I went on the Internet and did some research. As I researched, I realized that what my son was saying pointed to an eating disorder. I went into his room and told him that I looked online and that he should do the same. He was not very receptive and told me to leave. The next day he came to me and said he did look online and he realized that he had most of the symptoms of anorexia nervosa. We decided to visit his pediatrician. He referred us to a doctor who specialized in eating disorders. I now realize how important it is to have a good medical team consisting of a doctor, therapist, and a dietician. All three should specialize in eating disorders and communicate on a regular basis regarding the patient.

We were in the middle of baseball season and the end of soccer season. Watching my son struggle with running, kicking a soccer ball, catching and hitting a baseball was very hard to do. His body was deteriorating. He was always so strong and very athletic. Every movement he performed now seemed to be in slow motion. As parents, we all had to contribute to dinner for the team after games. Our son, who always ate anything, was now very picky and would not eat the dinners provided. He mostly stuck to granola bars. Later we found out that his baseball coach had provided him with an App to monitor fat and calories in foods. He had it on his phone and used it regularly to cut calories out of his diet. Other people noticed something was wrong. As parents, we decided to stop all sports. It was his idea to tell his coaches and team members what he was going through. We were so proud of him.

Within a few weeks, our son was hospitalized for 13 days. His heart rate and blood pressure were critically low. After his release, our real journey began. How do we help our son? What is the right thing to do? What should we do and what shouldn't we do? As a mom, I felt all alone in this process. My husband and my other son really didn't understand. I'm not sure if I understood either. All I knew was that this was very real to my son. It was really affecting his life. I missed the way he used to be and wanted to see him smile again. I read what I could on the Internet and books in search of coping skills. I had just started working a full time job and decided to go part time in order to allow me to be home more.

With summer just beginning, my son would be home all day. ED had also taken away his desire to be social. Before ED, he was always with friends and doing social things. Now he had no desire to do much of anything. Much of the day was spent in anticipation of the next time he would have to eat something. He always seemed to be in distress. Jigsaw puzzles and word puzzles helped him get through the time in between meals. I had to plan my day around being home for meals/snacks and doctor appointments. We had a meal plan to follow and he was not able, or allowed, to prepare them on his own. My whole world was now focused on getting calories and nutrition back into my son's body and getting him the psychological help he needed. I often wondered how long this journey would last. I needed to get a handle on this disorder and figure out the best way to help my son. I felt so alone and helpless. In looking back now, everything we went through was a necessary part of the healing process.

 

 

 

Recovery Heroes

by Aubrey Butts

An eating disorder is like a cocoon. Nothing can hurt you inside this cocoon. It’s the bargain that an eating disorder strikes to make giving literally everything else in your life. At least it won’t hurt. At least the outside world can’t touch you. 

I’ve come to learn I’m what I call, a “feeler.” I feel things deeply, I feel things quickly, and I sometimes feel things so erratically, I can’t quite establish its root cause. For “feelers,” this cocoon is essentially a dream. I now had a “blanket” to hide away in and my extreme feelings were now numbed. I no longer identified as a “feeler.” In fact, I nearly felt downright psychopathic, lacking any sense of empathy or longing for human contact.

I lived like this for quite awhile. Nothing could touch me.  Of course, what they don’t tell you, is the larger your cocoon becomes, the smaller the contents inside become. Both literally and figuratively. 

I no longer knew how to take up space. I was unquestionably terrified of it. My body became smaller. The way I sat took as little space as possible. Sorry’s ended my sentences like periods. My voice became quieter and quieter until I nearly lost it completely. But I was enmeshed so deeply in my cocoon, I couldn’t see this as a problem. It was, in my opinion, what I was supposed to do. Deserved to do.

The first chink into my cocoon came during my experience in a treatment center with a Skype call with my sister. Family therapy was a part of the treatment center’sprogram. My parents kindly drove up a few times for meetings, but my sister couldn’t. Instead, we were able to set up a Skype session with her to discuss her experience with my disorder, how it affected her and anything else that needed to be processed. In my worldview, my sister was Beyoncé. 

I loved her with as deep a love as I feared and envied her. Things always seemed to be so easy and perfect for her, which I now realized was only with a lot of effort and strong work ethic. But in my disordered and damaged brain, she seemed to have a life I would kill for. Plus she was blonde, beautiful, had an incredible boyfriend and could eat and drink anything she wanted without fear. 

As invincible as I felt, I knew she was more so. No way had my struggles affected her. She was hardly home when I was growing up…

And this, I learned was because of my disorder.

My disorderhad become a fire that consumed all of the time, care and attention from my parents. The fires in our home burned my parents into ash, but my sister also smelled smoke. Instead, she fled the fire like any logical person would, building a world outside of the embers. Who could blame her? But I hadn’t realized how difficult and frightening this had all been for her. 

Hearing her side of the last few years created a little crack into my cocoon. Suddenly the weight of what I had done wasn’t protected from me anymore.

The relationship with my sister has been complicated, to say the least. But the time I’m able to spend with her, the meals we’ve shared, the advice and support I’ve received, and the utter joy I get in seeing her life unfold has been one of the biggest motivators to me. Yes, she is the Beyoncé in my world, but just as Beyoncé is a role model and inspiration to so many (including me, duh…) so is my sister.

In honor of all of the important support people who have helped people during their recovery, NEDA, Project HEAL and Recovery Spark have created this wonderful video called Recovery Heroes for Eating Disorder Awareness Week. Check it out. And if you would like to contribute a blog post about and important support person who has helped you during your recovery or any other topic contact SMEDA at 123smeda@gmail.com.

28 Things Gained in Recovery

by Aubrey Butts


And yes, the pun with the word gained is intended. Because here’s the thing, the importance of weight gain in recovery from an eating disorder is a given. Even in non-restrictive type eating disorder recovery, there may be some form of weight fluctuations or maintenance required. Another way to phrase this is that in losing the attachment to weight and any notion of controlling one’s body shape one gains life. For the sake of argument, this definition is the one I mean when I discuss “gaining weight.”

With Eating Disorder Awareness Week coming up in the month of February, I wanted to reflect on a year of what may arguably be my most solid time of recovery since developing an eating disorder at age nine. Had there been slips and lapses and more? Yes. This year,  although it had its weight fluctuations, meal plans, and other indicators traditionally thought of as parts of recovery, was marked more by living, the true measure of success in recovery from an eating disorder.

So, here they are: 28 things I gained in my recovery from an eating disorder. Some are general and may hopefully resonate with you; others are personal accomplishments that can be taken as examples of what the “other side” may look like. Consider using the days leading up to Eating Disorder Awareness Week to reflect on your own “gains,” regardless of what stage of recovery you, or your loved one is in.

  1. Spring break trip to Austin, Texas full of tacos, tequila, pizza, yoga and dancing.
     
  2. Establishing two weekly yoga classes to teach.
     
  3. Giving the dream of being a roller derby girl a try.
     
  4. Actually attempting to date.
     
  5. Sitting with a “binge” or the discomfort of fullness and not engaging in compensatory behaviors.
     
  6. Enjoying an ice hockey game with my best friend and not freezing the entire time.
     
  7. Being around to see my hero and first female run for President.
     
  8. Subbing for many yoga classes a week (being trusted to do so).
     
  9. Visiting my sister and being able to go out for pizza and beer.
     
  10. Waking up in the morning, enjoying the sunrise and not having my first thoughts being consumed with B/P behaviors.
     
  11. Developing many self-care rituals.
     
  12. Increasing communication with important individuals in both day to day interactions and high stress, high conflict scenarios.
     
  13. Little moments of not just body peace, but body confidence.
     
  14. Going to the beach in the summer and wearing a bikini.
     
  15. Honesty in therapy.
     
  16. Taking on a job in food service and not being fearful the entire time.
     
  17. Learning to be a barista and being able to memorize complicated drink orders and manage stress and urges during a rush.
     
  18. Having the strength to run and the awareness when the desire to run or workout is driven by my eating disorder.
     
  19. Being asked to be my sister’s maid of honor.
     
  20. Re-establishing my relationship with my sister.
     
  21. Being honest about my past and current struggle with friends and on social media and getting the resounding sound of support.
     
  22. Recognizing toxic or damaging relationships and beginning to believe I deserve better.
     
  23. Gaining closure in a past toxic relationship, as well as being able to reestablish old friendships.
     
  24. Going back to school after much anxiety and finally finding a program and plan that works for me.
     
  25. Eating chocolate.
     
  26. Food flexibility--knowing that I can choose what to eat and be radically okay with my choices (still a process daily).
     
  27. A successful, behavior-free Thanksgiving spent with family and enjoying pumpkin pie.
     
  28. Identifying as an optimist because I had seen the darkest of days, fallen too many times to count, but have seen the kindness in others and the way the sun always comes back, to believe there is another day to try and I choose to be around for it.

Why I Support This Cause--It's Personal

by Kristin Fiore, Down Dog Yoga Center

Yoga has provided me with a tangible tool to facilitate acceptance, self-love, and healing in my body. As Donna Farhi writes in her book Bringing Yoga to Life, “Through daily Yoga practice we become present to our own fundamental goodness and the goodness of others. It is the practice of observing clearly, listening acutely, and skillfully responding to the moment with all the compassion we can muster. And it is a homecoming with and in the body for it is only here that we can do all these things.” This connection of body, mind, and spirit is key as one begins to address different aspects of an eating disorder.

As a late teen suffering from an eating disorder, I found my way into treatment in a clinical setting where I sat in an examination room for medical tests or a chair for counseling sessions. In this way, I continued to feel detached from my body as there was a lack of physical participation in the process and I found it difficult to navigate the emotional connections I was making in counseling with the actual changing of habits in my body.

It wasn’t until I began practicing Yoga that the deeper process of healing and recovery began. I didn’t sit and talk about my feelings, I experienced them as I engaged my strength and stretched my limits. For the first time I had access to my thoughts and feelings through my body, not despite it. As movement connected with breath, I found a place inside of me that was always steady. As I developed greater awareness of the flow of prana within me, I began to feel empowered and beautiful. This quote from Nita Rubio’s essay in the book Yoga and Body Image sums it up nicely, “As you learn to move with the internal energies, you learn how to move with life’s flow. Beauty emanates from here because it is deeply rooted from within. This beauty is not one based on a standardized list of perfection. Nor does it reference an ideal. This beauty is based on feeling. Beauty is an experience.”

Yoga is an experiential practice that uses mindfulness techniques to bridge the gap between body and mind. As we begin to feel the connection between the different aspects of our being, we open ourselves up to process, change, surrender, and accept. The healing benefits of Yoga are many in my personal experience, and recent studies show Yoga may help relieve depression, anger, and anxiety and improve mood (Harvard Health Publications). Yoga also promotes greater self-awareness, self-esteem and positive body image through the cultivation of love, acceptance, non-violence, and unity. In addition, the physical poses of Yoga help the body build muscle, bone density, and aid in digestion which may be helpful during recovery from an eating disorder and for general overall health.

As we begin to explore the healing benefits of Yoga it is necessary to practice with compassion for what may arise and to seek guidance from a trusted and well informed teacher as needed. It is important to practice in a safe and non-competitive environment. Exploring the edge in a yoga pose in a healthy way, not by pushing the body but learning to stay with an uncomfortable sensation and find breath, may be useful when someone is feeling full and resisting the urge to purge or compensate or when they are experiencing strong emotion. Anastasia Nevin says, “Bringing yoga into eating disorder recovery is a way to access memories, messages, and wisdom stored in the body that are not always accessible in more traditional forms of talk therapy. The ultimate goal of recovery is in fact Yoga: re-connecting and integrating all parts of the self to live a more intuitive, peaceful, and soulful life.” (Live Fit article, “The Role of Yoga in Treating Eating Disorders”)

I have found that the routine practice of Yoga allows me to be consistent, loving, and stable in body, mind, and spirit. Throughout my years teaching and studying, I have worked with many others who also find it to be a useful therapeutic tool. Yoga poses can be modified to suit each individual’s needs depending on where one is in treatment or recovery of an eating disorder, and the use of breathing techniques, mindful meditation, and movement make this a great holistic treatment to compliment more traditional forms of therapy.

According to the National Eating Disorders Association, ten million females and one million males in the United States are struggling with an eating disorder. So what can you do? In the Kalamazoo area, SMEDA is trying to make a difference and you can support our upcoming Coffee + Compassion Fundraiser and get involved with this group. Please help us raise funds and awareness for this important cause! Share this post and feel free to reach out to me personally with any questions about SMEDA or how Yoga may be helpful in eating disorder recovery. Together we can make a difference!

Down Dog Yoga Center is selling tickets for Southwest Michigan Eating Disorders Association's fundraiser - a Coffee Tasting, Brunch, and Silent Auction on February 11 from 9:30am to Noon at the Kalamazoo Riverview Launch. Tickets are $35 and can be purchased at our front desk or online through the SMEDA website.

 

Art Hop Exhibit News: Special Deadline Extensions

Eligible individuals: Currently struggling with an ED, have recovered from an ED, family members that have been involved with the care and well being of a loved one during their struggle with an ED, and health professionals that are a part of ED care teams (The art and the accompanying paperwork needs to be submitted to one of the healthcare providers on your ED recovery team.)

Since we have extended the deadline for several projects, we are extending the deadline to everyone. (After all, it is only fair.) However, if you will need us to provide a temporary frame for the art exhibit it will need to arrive, with the filled out form, in the next two weeks. If your work is a digital arrangement, we will need it on a flash drive, with the accompanying software if needed (and the filled out form - which can be sent electronically - but not on the flash card) within the next three weeks to make sure that we have the time to prep. If your work will already be framed or does not need to be framed, please provide it and the required paperwork to your health professional (or have them confirm your status) no latter than January 20, 2017.

Mirror project: What we see in a mirror is a social construct. We will have a group piece comprised of individual submissions. If you are local and wish to be a part of the mirror collection, along with the authorization paperwork, you need to submit an altered/enhanced mirror with positive messages on the mirror, so that as you look at the mirror you see yourself and the messages that uplift and positively support you and the reflection you see in the mirror. Though it is a group project and therefore your name will not be posted for public viewing, it will be posted on the back of your mirror so that it may be returned. Consequently, it is still important to fill out the information on how you would like to be identified, so that those setting up and dismantlement the exhibit see the identifier you choose to use.)


http://www.southwestmichiganeatingdisorders.org/art-hop-2017

 

Comfort and Joy

Comfort & Joy

One of the most heartbreaking aspects of having a loved one with an eating disorder is watching them suffer the many mental and physical pains and afflictions both large and small that this cruel disease visits on a person. So in this season of hope and new beginnings a number of caregivers in the area created this list of items that provide some measure of what we are calling “comfort and joy.” These are the items that come out of our bag of tricks to help make things more bearable, to create distractions during times of anxiety,  and to bring some comfort.

The first category of items are helpful for distraction. They include games like Uno, Bananagrams, Scategories, and Monopoly. In our home the game of choice was Bananagrams. We played it after mealtime as a distraction. Eventually no one wanted to play Bananagrams with my daughter because they knew she always won. Other helpful distractions include listening to music and watching television. A number of caregivers mentioned that coloring was a terrific distraction. All those “adult coloring books” on the market can serve as a distraction as well as a great calming activity. Artistic activities are a great ways to distract as well as express feelings. We bought our daughter a box of art supplies that she used for a variety of art projects. Suggestions for an art box include sharpie pens, playdough or modeling clay, paper, and collaging supplies. Another helpful activity is writing or journaling. Having a blank journal to write in is much appreciated, but there are also some nice books like The Ritteroo Journal for Eating Disorders Recovery that provide jumping off topics for journaling towards recovery.

Note that if you or a loved one has created a piece of art through their stages of recovery we would like to exhibit it during our upcoming Art Hop in February. For more information on exhibiting your art work click here.


Besides distraction there is the desire to provide some level of comfort for a loved one suffering from an eating disorder. Some of the big issues during recovery are discomfort during “re-feeding” and also the inability of the body to stay warm. Try extra warm and cuddly clothing as well as electric blankets and heating pads.  Electric blankets and heating pads provide both warmth and can be soothing for the stomach pain during re-feeding. Massage is also very soothing.

The idea of massage brings me to what I would consider the next level of comfort or care. As a caregiver or loved one of someone who suffers from an eating disorder knows there can be a great deal of self-loathing and feelings of unworthiness. I have seen this translate into a hesitation to be touched or to allow anyone to show affection and a lack of caring for oneself. So I view the acceptance of a massage or other “self-care” activities as progress towards recovery and healing. Talking to my daughter, she found helpful activities during the early part of her recovery included taking the time to paint her nails, face masks and wearing small “trinkets” or pretty pieces of jewelry especially bracelets or rings. All of these were pretty pick-me-ups and reinforced that she deserved to do nice things for herself, but they had the secondary reinforcement of serving as physical reminders to resist eating disorder behaviors.

Finally, I want to touch on joy. I know that individuals struggling with an eating disorder, as well as their family and friends, probably can’t even imagine the concept of “joy” but I want to provide a small glimmer of hope that joy does exist and will continue to grow stronger every day. Two things my daughter said to me recently resonate as I think about finding joy. The first was that at her sickest moments, she said that she felt so diseased, loathsome and foul that she did not want anyone near her because she was afraid she would contaminate them somehow. I imagine that is a common thought and the result was desperate loneliness that was very hard to break through. As I think back over the things that brought some joy, there were things that could break through that tremendous isolation and suffering… one of those things was animals. I think that may have been because an animal never judges them and somehow does not conform to the “rules” of their disease. The other thing my daughter recently said was that she felt like much of her childhood was stolen by her eating disorder. So now here is my secret weapon: find something that allows your loved one to fully be a child or to be a child again. For us it was a trip to Disney. We found that you just cannot stress about what you are eating when Pooh is there to hug you. So much better than any treatment center we have been to!

So that is our list and we want to wish you and your family much comfort and joy this holiday season. If you do decide to make any purchases this holiday season please consider using the SMEDA Amazon Smiles link here for Amazon purchases. That way your purchases help support better treatment, outreach and education for eating disorders.

Remember if you wish to be in direct contact with a Caregiver Mentor for advice and support contact 123smeda@gmail.com and you will be put in contact with a mentor.

If you are interested in writing a guest blog as a caregiver or survivor, please contact 123smeda@gmail.com

Resources and Tips

Hi Everyone,
Here are some resources and tips that our family have found helpful. Click here for a 2 page PDF copy.

On-line Resources:

Books: (Phase I)

  • Throwing Starfish Across the Sea: A pocket-sized care package for the loved ones and caregivers of someone with an eating disorder. Written by Charlotte Bevan and Laura Collins. My favorite, played a huge role in moving from phase I to phase II of recovery.
     
  • Brave Girl Eating: A Family’s Struggle with Anorexia by Harriet Brown
     
  • Help Your Teenager Beat An Eating Disorder by James Lock, MD, Ph.D. and Daniel Le Grange, Ph.D.
     
  • Off the Cuff:  Therapist recommended and well received by other SMEDA caregivers. I liked the book and chose not to purchase it because I was already sifting through so many resources, and using strategies. The book can be ordered directly from Duke University at http://www.dukeeatingdisorders.com/#!parent-resource/xspz4
     
  • Finding your Voice Through Creativity:  The art and journaling workbook for disordered eating by Mindy Jacobsen-Levy and Maureen Foy-Tourney. My friend's daughter who had an ED and recovered found this book to be a favorite.
     
  • The Dialectic Behavior Therapy Skills Workbook for Bulimia by Ellen Astrachan-Fletcher and Michael Maslar
     
  • The Secret Language of Eating Disorders byPeggy Claude-Pierre

Books: (Phase II)

  • Why she feels fat by Johanna Marie McShane and Tony Paulson
     
  • Talking to Eating Disorders: Simple Ways to Support Someone with Anorexia, Bulimia, Binge Eating, or Body Image Issues  by Jeanne Albronda Heaton, and Claudia J. Strauss

* Please be very selective about the books and resources your loved one may have access to because they may inadvertently provide strategies for becoming better at hiding their eating disorder and/or engaging in additional self-harm.

Tips & Strategies:

  • Medical doctor who specializes in and/or has a proven track record in the eating disorders community, for working with the age and gender of your loved one.
     
  • Therapist who specializes in the treatment of individuals with anorexia, preferably one with a proven track record in the eating disorders community, for working with the age and gender of your loved one.
     
  • Dietitian who specializes in the treatment of individuals with anorexia, preferably one with a proven track record in the eating disorders community, for working with the age and gender of your loved one. If your dietitian is not providing you with meal plans, specific details regarding options and portion sizes, please seriously consider working with another dietitian. Your insurance company will most likely not cover this, and finding a good dietitian has been critical in our daughter’s recovery process. It was the best $125 we’ve ever spent, and we experienced significant results after one appointment.
     
  • Counseling for self: Seeking this service for yourself may seem like an unnecessary arduous hurdle, especially in the beginning stages of managing an eating disorder diagnosis. The therapy I have received to help me assist our daughter and other family members in understanding the illness and facilitating recovery has been immeasurable, and has played a pivotal role in our daughter’s recovery progress.

YouTube: (short videos)

Ten Things I Wish I Had Known About Eating Disorders

  1. What I thought I knew about eating disorders when my child was diagnosed with one could be summed up as “isn’t that that thing where a person looks in the mirror and thinks they are a different size than they really are?” Basically I knew nothing and did not understand the gravity of what we were facing. I did not know that eating disorders are a serious mental illness and that eating disorders have the highest morality rate of any mental illness. Every 62 minutes at least one person dies as a direct result from an eating disorder.
    http://www.anad.org/get-information/about-eating-disorders/eating-disorders-statistics/
     
  2. Much of what I did not understand about eating disorders revolved around who could get it. Our child was diagnosed as a teen, but I now understand from what she has told me that she had these “feelings” much younger, starting around 9 years or younger. Teen girls are not the only people who suffer from eating disorders. It is estimated that up to 1/3 of sufferers are male. (CDC, 2007)  Other groups of people at risk for eating disorders include athletes, sexual minorities, and people who have had active military duty.  http://www.anad.org/get-information/about-eating-disorders/eating-disorders-statistics/

     
  3. You would think it would be really obvious if a loved one were suffering from an eating disorder. It wasn’t. It is likely that there won’t be a lot of warning signs. For us it seemed like a slide into “healthy eating” or “vegetarianism” or “picky eating.” That, combined with clothing that may be worn to obscure weight loss and meal times that are suddenly eaten at a friends or while you were at work and all of a sudden you are in the middle of it. My child “disclosed” to me by telling me about a health concern. She told me that it took a great deal of effort to go against her eating disorder to try to signal to me that she had a problem. I almost missed it. Something about what she said just nagged at me, don’t miss the signs. SMEDA  has a Speaker’s Bureau including a parent-led talk that discusses the warning signs of eating disorders that is available for clubs, school parent groups and others. If interested in scheduling a talk, contact 123smeda@gmail.com
     
  4. Once you catch the signs, you need to move fast. Up to 20% of individuals with chronic anorexia nervosa will die as a result of their illness. Early intervention is consistently associated with higher recovery rates. https://www.nationaleatingdisorders.org/sites/default/files/Toolkits/ParentToolkit.pdf 
    Professionals, or others, who tell you as a parent or caregiver that you need to step back and stay out of your child’s recovery are wrong. Research has shown that parental involvement in a child’s eating disorder treatment can increase chances of recovery when using effective therapy methods like family-based treatment.  Here is some more info about effective treatment: http://www.southwestmichiganeatingdisorders.org/treatment/
     
  5. This brings me to the next thing I wish I had known, you need to work hard to assemble the right team of professionals around your child. Finding professionals, any professionals, who are knowledgeable and able to effectively treat someone with an eating disorder is difficult to find. Individuals who do not have experience working with this can actually do more harm than good. You can start your search by checking the SMEDA Professional Directory to find knowledgeable professionals in the areaThese are all professionals in the area who work on a regular basis with clients with eating disorders, who continue to participate in their own professional development in this field, and who are committed to working in a team setting. Treating eating disorders will take a team and on YOUR team you will want a knowledgeable medical person as well as a therapist and someone to provide nutritional counseling. All three need to be able to communicate and work together as well as work with the family.
     
  6. One thing I thought a lot about going through this were the lyrics to the Sarah McLachlan’s song Hold On – “Hold on. Hold onto yourself. This is going to hurt like hell." https://www.youtube.com/watch?v=MHBmpGLGyk8

    And it does hurt like hell. Here are some things I wished I knew. Your child will change. Your child will engage in behaviors such as lying or throwing fits during mealtimes that don’t seem like your child at all.  For our family, it became useful to remember that there was my child and then there was the eating disorder. A helpful book at this point for us was Life Without ED http://www.jennischaefer.com/books/life-without-ed/  which compares having an eating disorder to being in an abusive relationship. Your child, and his or her behavior, will become eclipsed by the eating disorder; your goal is to help them get free. For a list of other helpful books and resources, check out the SMEDA Resources.
     
  7. Speaking of books and resources, once my child was diagnosed with an eating disorder I obviously became very interested in the numerous books written on the topic. What I didn’t know was that I needed to be careful about what I brought into the home. Many of the books, especially the first person biographies, can be very triggering for people with eating disorders and can actually provide a road map for additional “tips & tricks.”  http://well.blogs.nytimes.com/2009/05/11/the-troubling-allure-of-eating-disorder-books/?_r=0   I would NEVER have allowed them in my house if I had known that.
     
  8. This brings me to an overall, catchall on how much I did not realize that I needed to be vigilant about the toxic environment surrounding my child. While it is not difficult for any child to soak in a toxic environment that is obsessed with things like “thin,” “healthy," “high performance,” “clean eating,” and of course the bugaboo of “childhood obesity,” for a child who is trying to recover from an eating disorder, it is absolutely vital that their support people help to navigate and protect them from this toxic environment as much as possible. For our family this meant removing certain types of media from our home. It meant being vigilant about our own inadvertent “fat talk” and it meant educating, and if necessary being prepared to remove, unhelpful people from their life, including coaches, health professionals, peers, even extended family members.
     
  9. Frequently family members will provide “meal support” to a person with eating disorders as part of their recovery journey. Here is a video on meal support https://www.youtube.com/watch?v=pPSLdUUlTWE  One other thing I never could have imagined is how much our entire family’s relationship with food would be impacted. I never would have imagined how many hours grocery shopping, preparing and making sure my child ate food would take. A trip to the grocery store suddenly stretched to hours as we looked for foods that I knew our child would eat and we avoided any “diet” or “low calorie” foods. We also had times when we would have to repackage foods out of their original packaging so food labels, especially calories, could not be read.
     
  10. Finally, the one thing I want all family members, caregivers and support people to know is that it is not their fault. Fortunately, in most cases, the theory of how eating disorders develop no longer blames the family, especially the mother, as it has in the past. See this video on myth busting on mothers and eating disorders. https://www.nimh.nih.gov/news/media/2014/eating-disorders-myths-busted-myth-3-mothers-are-to-blame.shtml   Even though I knew this, what I didn’t realize is that it is easier said than done. While the official word is you no longer need to feel guilty, it is so much harder to not feel guilty. Your child is suffering, how can this not be your fault somehow? Just remember if the illness were cancer instead of an eating disorder would there still be those niggling feelings of guilt? If, when you replace the word cancer for the word eating disorder it changes how you feel, then you might still be working under a cloud of stigma and shame that you don’t deserve. Remember, it’s not your fault.

Welcome to the Caregivers' Blog

When I was at my most frustrated, when I was worried the most, when I was the most determined to beat ”ED”(and had the time to do the research), it was often late at night, at 3 am or after a particularly bad mealtime experience! Those were the times that I had the motivation… or the time… or the courage to seek the advice of others, and the companionship of people who knew the battle I was facing. Parents who REALLY knew!

We discovered that our daughter was struggling with anorexia at the start of her junior year at high school and our world was turned upside down. I looked at websites, I read books, and I sought the wisdom of professionals. It was a long road to recovery with many bumps, and ups and downs along the way. The turning point for us, emotionally, was when we exchanged ideas and information with other parents and care-givers, who absolutely understood what it was like being on the front line of fighting “ED.”  They knew the anxiety of mealtimes, the heartache at weigh-ins and the ever-present frustration and worry. As my girl got better and became determined to beat “ED” herself, I became involved in SMEDA, and became passionate about Parent Support. Because sharing those things which I felt guilty thinking about, being able to cry out my fears and anger, with a person who also was experiencing what I was feeling, was a relief! Knowing the stories of other parents whose children were at different stages, (some who had fully recovered), gave me hope!

For a while now we have held parent support groups monthly, but I will be honest with you, over the last year I have been less than satisfied with them. The number of people attending has dropped off and I wondered if we were being effective.  I had a discussion with some other parents, who felt the same way… An evening meeting once a month at a time of night where someone is already at capacity after a day at work, and coping with a stressful mealtime, was maybe not the most appropriate or useful method of parent support. It is likely that 3am is when you most need the help, when you can’t sleep!

One of my great desires is to provide help when it is needed the most- relevant, suitable and reliable help, at convenient times.  Therefore we have made some changes to the way we will be offering parent support through SMEDA: 

First of all we will be transitioning from physical monthly meetings to an online blog. We have a team of people who have been through, or who are going through what YOU are going through. At least monthly we will be posting a blog about something appropriate and relevant to your situation. There will also be resources available for you to look up- websites, online support groups and more. 

Secondly, we do not want to leave you without a real-life person to talk to, so we have a team of “parent-mentors.” Parents who you can call to speak to. I will be one of those mentors and I promise to meet with you at a coffee shop, or speak to you on the phone however much you need me to. You can tell me your frustrations and worries, ask me questions or I can be the listening ear! Honestly I have found the best way I have helped people is one on one support like this. Contact us through the website and we will pair you up with a parent-mentor.

One final thing… We are looking for Guest Bloggers. If you have something you would like to share through this forum, then please contact us

We want you to feel supported, and we really believe that these changes will better serve you. We welcome your feedback, so please contact us if you have suggestions, and especially if you have questions you would like us to answer through one of our posts!