Nobody can afford to wait for treatment for an Eating Disorder. On World Eating Disorders Action Day 2019, Amy Cunningham and June Alexander, together with Kathy and Michael Cortese, explain why, and what we can all do about it. Today.
A parent accessing a reputable online eating disorders support site for families and caregivers will read: “We are so sorry that you had to find us, but happy you did.” The parent, desperate for information and advice, is then welcomed into a community of family members, where experienced parents/caregivers give support in navigating the challenges of recovery. Social media has allowed us to connect, to learn, to share and to advocate for change. World Eating Disorders Action Day is a way to deepen understanding, and to push for broad policy change. The many social media platforms our volunteer collective uses is a weapon against misinformation and an opportunity for healing, solutions and policy changes.
My Story: A Family Affair
My name is Amy Cunningham. I am a parent of five amazing children, two of whom developed eating disorders (ED) in adolescence. One in 2010 at age 15 and the other in 2013 at age 11. My older three children from my first marriage did not develop ED, yet the younger two from the second relationship did, underscoring how that genetic mix influenced ED’s development. Many others in my family have also developed eating disorders in past generations. I am an affected person. I developed anorexia at the age of 17, with warning signs from around age 13. It morphed into Binge Eating Disorder and then Bulimia, which I lived with for more than 20 years. I self-diagnosed as a teenager, reading about my illness in the local library in the 1980s, and internalizing the information that was then available, now known to be incorrect. And while I saw many ‘therapists’ none really had the scientific understanding or training to assist me, a highly functioning person with an entrenched eating disorder. My recovery was long and slow and painful, and frankly I am very lucky to be here – healthy and recovered.
About Family Based Treatment
The contrast between my personal experience with ED and that of my children is thankfully worlds apart. However, only through the healing of my youngest child who was ‘hit’ by ED at age 11 in 2013, did we really have the information, tools and skills to help treat her. She benefitted from Family Based Treatment (FBT) which is today the only evidence-based treatment approach to anorexia and bulimia. I treated her at home, with the support of an FBT trained therapist, and the support of my many virtual friends and colleagues across the globe on social media. Her treatment involved re-feeding for rapid weight restoration, generally 4000-5000 calories a day, until she was both at an acceptable weight but more importantly until her ED symptoms were no longer present. The weight restoration took about six months, as it is a moving target with a growing child. The full dissipation of ED ‘thoughts’ and symptoms took over two years. Today she is happy and healthy, and while she occasionally experiences some ED ‘thoughts’, she has the skills and tools to understand them and address them.
Early Intervention is a Key to Early Recovery
One of the defining factors of my youngest daughter’s recovery is EARLY INTERVENTION with evidence-based treatment. Within four months of her symptoms beginning (food group restriction, becoming vegetarian, skipping meals, and rapid weight loss due to a bout of food poisoning) we were able to get a diagnosis at UNC Center of Excellence for Eating Disorders in Chapel Hill, North Carolina. With the wonderful Dr. Stephanie Zerwas our family learned that ED is a genetically linked biological brain disorder, learned how we needed to intervene quickly, and that our family could support the refeeding as a priority. There was no ‘talk therapy’, only support to help this 11-year-old eat. By the way, therapy was done primarily via video chat as my daughter and I lived in Tanzania and our therapist Adrianna Rodriguez and Emma’s father live in the US.
Today my daughter is a happy, soon-to-graduate high school, healthy young woman. Far from the child ED terrorized for months, she ‘graduated’ from our weekly therapy sessions in 2016. She has also helped many of her friends and their families identify ED in the early stages – a function of being highly attuned to ED behaviours. She also knows what to look out for in her own thoughts and actions, and asks for help when she feels that ED ‘thoughts’ are recurring. Thankfully, because of early intervention and correct treatment, she recovered quickly and is not likely to face the struggle I did or others with long term EDs do. .
Eating Disorders: We Can’t Afford To Wait!
The theme for this year’s World Eating Disorders Action Day is “Eating Disorders: We Can’t Afford to Wait!” This theme evolved from our Canadian activists who adopted it as the call to action in their 2019 Eating Disorders Awareness Week. It is important because too many families and caregivers WAIT TOO LONG to get their loved one into treatment. Affected people WAIT to get help when an ED occurs or reoccurs in adulthood. Families and even professionals WAIT under the incorrect thinking that the sufferer must want to get better. The result can be dangerous and even deadly. Too many medical professionals lack ED training and do not advise families to seek treatment early on. How can this change?
A public health approach to treating these psychosocial illnesses would prioritize:
- Training of providers to understand the basis of ED and to recognize the early warning signs;
- Educational support for families through schools and wellness programs about early warning signs of ED;
- Improved access to low cost evidence-based Family Based Treatment and support for families and caregivers during the process;
- Availability of affordable and effective treatment for adults with long term or entrenched ED.
I hope that this year’s World Eating Disorders Action Day on June 2 will spur action in the many countries we touch across the globe. Any little action you take can lead to change. Talk about Eating Disorders. Read about evidence-based treatment. Host an event. Light a monument purple. Participate in the #ShowUsYourPurple social media blitz. If you are affected, DON’T WAIT to get help. If you are a family member or friend DON’T WAIT to help someone to get help. If you are a professional, DON’T WAIT to learn more about ED, evidence based treatment and to get certified if you practice.
Why we cannot wait: Grandparents have Eating Disorders too
The time taken for research findings in the eating disorder field to seep through to where it counts, in easing suffering, is years too long. Today, many people with eating disorders continue to struggle daily, unaware they have a fully treatable illness. People are hungry for the right information. They cannot afford to wait. People die, waiting. They need the right knowledge to break out of this illness prison. Before it consumes all stages of their life. Now.
My Story: Lost and Found
My name is June Alexander and I live in Australia. I developed restrictive anorexia nervosa at age 11, in 1962. A proper diagnosis for the ED plus comorbid conditions of chronic anxiety and depression was not given until my 30s. Recovery took 25 years. I was a grandmother when, at the age of 55, I celebrated becoming ‘more me’ than ‘ED’. For the first time in 44 years I was able to eat three meals a day without feeling guilty or ashamed. I was able to start living a full and joyous life.
Sadly, some of the many losses during my incarceration with ED could not be regained. I lost my family of origin – my parents and sister had given up, labelling me as ‘the problem’ in our family. They had created a life that did not include me. I had also lost my marriage, but I did have four wonderful children who from their birth became my chief inspirers and as they grew older, joined their dad in providing support as caregivers. In recovery, my grandchildren have taken up the reins of chief inspirers.
Creating a family of choice
Upon emerging into the light from my ED in 2006, amazing things began to happen. This was a time when online support was becoming available. I had felt alone, alienated and isolated for decades. Now, in coming out, aside from my family, I began to connect with like-minded, understanding, and supportive others, including Laura Collins Lyster-Mensh and founder of the Butterfly Foundation, Claire Middleton. In these remarkable women, and with others, I found and became part of a Family of Choice that today is global. I want adults who are suffering silently today to know that help is available for them, too. I don’t want anyone to be suffering alone, or to suffer as long as me. I don’t want any more families to be destroyed. I want everyone to be able to access support. NOW.
We need to find new ways to disseminate helpful evidence-based research outcomes and get the information to where it can have positive effect. One way is to activate parents and families of origin. But not all parents can be helpful, for whatever reason, when an eating disorder develops in a family member. The result is that some families like mine become fractured, and if the person with the eating disorder grows into adulthood, they invariably live a part-life, possibly a high-functioning life, but a life nevertheless punctuated by rejection, isolation, loneliness, secrecy, shame and stigma. It is no fun being ‘the problem’ in such a family. Recovery is still possible but without family of origin love and support the path is much harder. I know, because I was one of these people.
Connection: Taking the First Step to Recovery
Today, more than half a century after I developed anorexia, people with an ED continue to feel bereft and alone. They are starving for understanding and support. This is a tragedy.
Like Amy, I was lucky. I met enough health professionals, friends, and I had children and their father, who stuck by me and encouraged the building of a family of choice. This family grew in leaps and bounds when I stepped out in 2007 and began to share my story publicly. My family grew to embrace the support, understanding, love and encouragement from people in the eating disorder field, not only in my home country but all around the world. Through reaching out and connecting, my life became rich in all things that really matter.
The experience has inspired me to continually seek ways to reach more people and let them know they are not alone and that they too, can live a fully authentic life, free of the constraints of the eating disorder. Encouraging the activation of families of choice for adults who are isolated by the illness is one way. Everyone experiencing an eating disorder deserves a village of support – personally, professionally and socially. The exciting thing is that we can make ourselves available to be chosen family to people in need, and to join hands with others in advocating for improved access to health care. It’s time to get ourselves mobilised.
Building a foundation of stability and support
I have met new family of choice members in amazing ways. For instance, I met Kathy Cortese on an elevator at a NEDA conference in Washington DC, in 2013. Kathy, with her son Michael had just become the proud new owners of the Gurze-Salucore Eating Disorders catalogue, the most widely used resource in the eating disorders field. Kathy and I rode the elevator down together and by the time we stepped off, a relationship had been formed which grows and prospers to this day.
Wherever I go in the eating disorder field, I meet welcoming, caring people who have joined the cause for the right reasons. As someone who spent 44 years in cold isolation with my eating disorder, this comforting warmth of acceptance is something I clutch and hug like a security blanket.
The family of choice is waiting to embrace you, too. Finding ways to reach people isolated by their eating disorder drives me in what I do.
So you are busy? Listen to a podcast
You may ask, “How do I start connecting, how do I make time for healing, and how do I go about finding and creating a family of choice?”
Michael Cortese, of Gurze-Salucore, has a few ideas. He has found that most people now access their information on a mobile phone. “People are busy. They have only so much time to read so stories must be brief, but also contain the right information. It is a challenge,” Michael said.
“Podcasts are popular. With our EDMatters podcasts, each conversation runs for 20 to 25 minutes. People can listen and learn while going on a walk, or commuting, or eating lunch.”
On the Gurze-Salucore website 78 per cent of website visitors are female which Michael says “is to be expected” but he is pretty happy also that 22 per cent are male “because we know that eating disorders do not discriminate”.
The search for information – what do people want to know?
Almost 50 per cent of the website audience on Gurze-Salucore is aged between 18 and 34 and some of the main subjects searched include medical complications, bulimia and laxative abusive, anorexia and hair loss. It seems people are searching for information on how to deal with some of the complications of eating disorders.
However, we know eating disorders don’t just affect 18 to 34-year-olds, so how do we reach more older people and how do we reach more males? How do we figure out what those people are looking for, and what they need? How can we provide them with good, evidence-based information? Also, while much of the material on the Gurze-Salucore site is written by clinicians for clinicians, it seems much of the audience comprises mostly individuals seeking information for self. How do we reach more of these people?
Respecting all forms of diversity
Kathy Cortese is a clinician with more than 30 years’ experience, and she has some ideas on how we can each contribute to a global village of support.
Kathy carefully screens and checks out the content that appears on the Gurze-Salucore site. Her focus is on information that is as current as it possibly can be. She likes to hear from clinicians because there are trends – one is diversity which is kind of sad but as Kathy reminds us, eating disorders affect everyone.
“If we are not addressing the diversity on both sides and enabling people to get information and access to treatment then we are dropping the ball,” Kathy said. “For example there have been instances of micro-aggression in the treatment settings. Clinicians and treatment providers need to be aware of own biases and to be better informed so we are not actually offending people who come for help. As clinicians we need to tune into our self more, and be reflective, and ensure our doors are truly open and welcoming to everyone in need.”
Collaboration – the micro view
Woven within June’s reference to family of choice are the concepts of collaboration, support, and advancement.
In the micro view, each of us has the opportunity to “be there” for the sufferer, the family member, the professional whose goal is to further eating disorder recovery. According to Kathy, this collaborative thread may require accessing accurate information for education within this family of choice.
Collaboration may include finding the pathway to appropriate treatment and the time, finances, and energy to see this part of the journey of recovery through so that hope becomes a reality.
As supporters, Kathy says that you know the deservingness and value of your “family member”. This is important because the person who is struggling with their illness may have no idea of their worth. Also, your support people may reveal more patience, more understanding, more compassion than you knew they possessed, because you are part of a family.
“Advancing anyone forward toward their full potential can be one of the greatest gifts you can offer,” Kathy says. “To leave behind the prison of an eating disorder and walk in the joys and challenges of life allows each of us to flourish with wisdom.”
Collaboration – the macro view
As sung by John Lennon, “You may say I’m a dreamer, but I’m not the only one….” I believe we can spread the word and provide hope to those who need it.
“In the macro view, collaboration expands to provide high quality, evidenced-based information to the world, not just the field,” Kathy says. “In the social media/digital age, we do this through our website, an e-newsletter, our podcast, social media, and our magazine.
“We want to meet people ‘where they are’, hence we have a number of mediums to reach people. The important thing is the quality of the information, and while we want to reach a wide audience and have people share the information extensively, even if just one more person benefits from it, we’ve done something.
“We want to reach the masses and are working towards that. Support translates to acceptance of diversity in all areas of human life.
“As a world family, we each get to start by embracing ourselves and each other in our day-to-day selves in our day-to-day bodies in our day-to-day activities as good enough. Anyone in a position to provide funds to further research or treatment scholarships is adding support. Advancement in the macro translates to the above and getting ‘the word out’.”
The right connection builds trust and hope
Social media provides more access points and we have more ways of communicating with people – for instance, information can be accessed through websites, podcasts, Facebook, and Twitter, so there are more ways of getting information to people. In that sense social media is helpful. The down side is that there are negative sites as well. However, every person reached with a positive message is one more person who is no longer struggling alone.
It is very important for people to feel they can trust the people providing the information online, so that they can cultivate hopefulness and gain the courage to reach out more to help themselves. Between us, as a family of choice and village of care, locally and globally, we can provide a great message of hope to the world. Each one of us can make a difference. Reach out. Start today. Connect. Every morsel of information you can offer will help to stem the hunger, and can help to save a life.
About the Authors
Amy is a public health professional with 20 years’ experience working and living in Africa. She currently serves as the Country Coordinator for the U.S. Government’s HIV/AIDS program in Uganda. Amy developed anorexia at age 16, and healed in adulthood after over 20 years. Two of her children developed anorexia as adolescents, and through Family Based Treatment (FBT) with a supportive, well-trained therapist, was a key facilitator in their healing. It was through the fear of losing her youngest daughter to anorexia that Amy began eating disorders activism, In 2013, she co-founded International Eating Disorders Action, which calls out organizations sharing misinformation; and in 2014 co-founded World Eating Disorders Action Day as a diverse grassroots collective seeking policy action and widespread awareness. This year, Amy wants to see the World Health Organization formally recognize June 2 as World Eating Disorders Action Day.
June has authored/co-edited 10 books on eating disorders, including her memoir, and has a PhD on the therapeutic value of non-fiction writing in recovery. She works with groups and individuals through journaling and story-telling to assist self-healing and promote self-growth for not only people with eating disorders but also their carers and other treatment team members. June has two websites, on sharing life stories and on using the journal as The Diary Healer. Having healed in adulthood from long term anorexia, plus road trauma, comorbid chronic anxiety, PTSD and depression, June thrives in the joys of mainstream living and inspires hope at every age. She won the Academy for Eating Disorders’ 2016 Meehan-Hartley Advocacy Award for public service and advocacy in the eating disorder field. June is a foundation steering committee member of the National Eating Disorders’ Collaboration in Australia, and represents the patients’ voice on national and international eating disorder advocacy organisations. June is an avid supporter of World Eating Disorders Action Day.
Kathryn Cortese, LCSW, ACSW, CEDS, began working as a psychotherapist with individuals with eating disorders in 1989. In 2013, Kathy, along with her son, Michael Cortese, purchased the Gürze Catalogue. Kathy oversees content and Michael galvanizes the business and tech operations. They offer the annual Gürze/Salucore Eating Disorders Resource Catalogue in print and digitally-interactive format, a monthly ENewsletter featuring evidence-based articles, the edcatalogue.com website, the ED Pulse, and a weekly podcast series, ED Matters.
About World Eating Disorders Action Day 2019
This year grassroots activists, volunteers, and over 250 organizations in 40+ countries are calling for caregivers to receive support, health care workers to be properly trained, and access to immediate, evidence-based treatment.
Why We Can’t Afford to Wait
- Worldwide over 70 million people are estimated to be affected by an eating disorder,
- Eating disorders have the HIGHEST MORTALITY RATE of any psychiatric illness
- Eating disorders affect people of all genders, sexual orientations, ages, socioeconomic class, abilities, races, and ethnic backgrounds. It is time to take action.
- Good news! When treated EARLY and correctly, eating disorders have the highest and fastest recovery rate!
How to support World Eating Disorders Action Day, June 2, 2019
- Join the movement, show your purple on social media! Use hashtag #ShowUsYourPurple
- Follow conversation on social media. Use hashtags #ShowUsYourPurple #WeDoActNow
- Host or attend an event. See http://www.worldeatingdisordersday.org/2019-events-2/
- Donate. To support the work see http://www.worldeatingdisordersday.org/get-involved/participating-organisations/.
- Discuss eating disorders. Through open, supportive dialogue, we can create change.
E-book release: Come as you are, eating disorders can’t wait
As a Participating Organisation supporting 2019 World Eating Disorder Action Day, The Diary Healerhas released a new ebook, . Stories from around the world illustrate that recovery from an eating disorder IS possible, at every age. The first step, is to seek help. to purchase a copy for $9.97 (AUD) – all profits support eating disorder services.
I have written nine books about eating disorders since my recovery (my “reconnection with true self”) from anorexia nervosa and other long term mental health challenges in 2006. In 2017, I graduated as a Doctor of Philosophy (Creative Writing). My contribution to the eating disorder field was recognised at the 2016 Academy for Eating Disorders International Conference in San Francisco where I was awarded the Meehan/Hartley Award for Public Service and Advocacy. I am currently a co-chair of the NEDC Steering Committee Evidence of Experience Group, a foundation steering committee member of the annual World Eating Disorders Action Day, and an Advisory Panel member for F.E.A.S.T.