Over the past eight years NIED has been committed to helping to disseminate quality information about Eating Disorders to caregivers, healthcare professionals and those with lived experience. NIED’s educational efforts began with symposia, which touched on everything from Eating Disorder signs, symptoms and treatment modalities, to putting a spotlight on Eating Disorders in underrepresented groups. Over the past few years, the symposia have also been broadcast online, reaching people affected by Eating Disorders all over the world. “We’ve heard so much amazing life changing impact from individuals about what it’s meant to them being able to participate in a number of these symposia either as participants, in terms of audience, but also in terms of co-presenters as well,” says NIED Chairman Mark Ferdinand. “We received feedback from people in the Middle East and Japan with regard to these symposia with people asking for support.”
Through the symposia and other outreach efforts, including a caregiver survey done in 2018, NIED has now consulted with over 10,000 people looking for help, support and guidance related to addressing Eating Disorders. Through this engagement NIED has learned that there are many ways that Canada can do better in supporting recovery within our healthcare system. With the groundwork created by our symposia, and a recent partnership with Body Brave, NIED has committed to creating several educational programs meant to help bolster the treatment of Eating Disorders across the country.
Through this engagement with so many people with Eating Disorders and their caregivers, NIED has found that negative interactions with healthcare professionals is a key barrier for many getting the help they need. NIED Communications is meant to not only teach primary care providers what to say when talking to someone with an Eating Disorder but also how to say it in a way that will support recovery. So many resources and standards explain ‘what to do’ to support better communication or collaboration in care, but few, if any, resources clearly explain ‘how to effectively implement these standards’ in different settings, with different people and in different situations. Learning how to apply various communication and collaboration skills during very different, individual recovery journeys takes patience, good training and adaptability.
Conversely, NIED Communications will also focus on helping those with Eating Disorders navigate the healthcare system while teaching them things like what to do when meeting a care provider for the first time and how to navigate transitioning between different levels of care. “We’re really focused this year on improving people’s ability to communicate in a much more empathic way with people seeking care, as well as with their caregivers and other professionals,” Ferdinand says.
Given that Eating Disorders are a mental illness that can also affect every organ of the body, it is very important that various healthcare specialities know how to work together. This also includes caregivers and people with Eating Disorders themselves, both of whom play an integral role in the recovery process. “Having an ability to collaborate effectively is associated with higher chances of recovery and improves well-being,” Ferdinand says. NIED Collaboration is focused on teaching key skills and approaches that help establish and maintain a productive therapeutic alliance between care providers, individuals and their caregivers.
When it comes to helping those with Eating Disorders, Canada’s healthcare system is disjointed at best. Many primary care providers face challenges in referring patients to specialists or further treatment, and even then, the wait times are often months long. This is why NIED Connections is focused on helping people learn how to navigate health and social services to get effective, evidence-based and evidence-informed care and support. This includes things like: what to do/how to cope when waiting for a specialist appointment or higher level of care and what to do when navigating health care, social services and community care and how to do it. “We know that not everyone’s recovery journey is the same and so people require different types of supports and different types of relationships, potentially across different providers,” Ferdinand says. “Helping people better connect with the right levels of care and support is extremely important to us.”
Inspired by feedback that NIED has received regarding experiences with care from people with Eating Disorders, caregivers, professionals and providers over the past 4 years, NIED is committed to preparing a set of guidelines meant to standardize the quality of care for people with Eating Disorders across the County. “NIED Quality is about improving programs and services for people affected by Eating Disorders so that’s more of a system level and possibly an organizational level type focus,” Ferdinand says. “We know it’s going to take that many more stakeholders and collaboration in order to establish what we think is needed in Canada, which is higher quality standards of care for people with Eating Disorders.” NIED will begin engaging with stakeholders in 2021 to create Quality Eating Disorders Care and Support Standards for Canada, which will then form the NIED Quality programming in late 2021.
NIED Communication, NIED Collaboration and NIED Connections will be disseminated in both informational materials and online courses aimed at healthcare professionals, caregivers and people with Eating Disorders. Download our new fact sheets based on these three initiatives here.
It’s Mental Illness Awareness Week in Canada. Established in 1992 by the Canadian Psychiatric Association, it is a national public campaign meant to help open the eyes of Canadians to the realities of mental illness.
During Mental Illness Awareness Week, it would be remiss not to highlight the significant impact that Eating Disorders have on approximately one million people (Stats Canada 2016) across the country. Eating Disorders have the highest mortality rate of any mental illness. It is estimated that 10-15% of individuals with Anorexia Nervosa will die within 10 years of the onset of the disorder.
Twenty percent of people with Anorexia and 25-35 per cent of people with Bulimia Nervosa may attempt suicide in their lifetime. For females age 15-24, the mortality rate associated with Anorexia is 12 times greater than all other causes of death combined.
These statistics are frightening to be sure, but they are just statistics. They highlight the seriousness and prevalence of Eating Disorders but do little to show the significant and lifelong impacts they can have on both the sufferer and their friends and loved ones, even more so now with the isolation and lack of face-to-face support because of COVID 19. Throughout my many years of treatment I have met people who have lost jobs, relationships and even their freedom as a result of their Eating Disorders. The effect of Eating Disorders on a person’s physical body can cause irreversible damage, leading to lifelong medical issues and, as mentioned, death. This really hit home for me last year when three people whom I met through my journey in treatment died from the effects of their Eating Disorder within a few months. I already knew the statistics; but it can be hard to face the reality until a person who you once sat next to waiting for an appointment suddenly isn’t there anymore.
Eating Disorders are extremely complex as many people with Eating Disorders also suffer from other types of mental illnesses including Generalized Anxiety Disorder, Major Depressive Disorder, Bipolar Disorder, addiction and more. I have never met someone who didn’t have some underlying mental illness that played a role in the development their Eating Disorder, disproving the myth that Eating Disorders are just about being thin. Although Eating Disorders can be triggered by diet culture and a desire to lose weight, they are much more complex and need to be treated by a multidisciplinary team that can look after both the physical affects of the Disorder, as well as the underlying issues that drive a person’s desire to manipulate food and their body. This makes Eating Disorders notoriously difficult to treat as there often needs to be a period of nutritional rehabilitation before a professional can even attempt to help the person with the Eating Disorder cope with any other mental illnesses. In fact, intensive inpatient treatment, which may help save someone’s life in the short term, often ends with nutritional rehabilitation without even scratching the surface of the underlying issues that caused the Eating Disorder in the first place. This can set the stage for relapse and can cause a “revolving door” effect that is common in many treatment programs across the country.
Eating Disorders can affect anyone, no matter their race, gender, sexual orientation, ethnicity or socio-economic background. The statistic is that one million people in Canada are suffering from an Eating Disorder right now; but I would argue that that number is low. I believe there are many people in Canada that have Eating Disorders that have not been diagnosed, as symptoms can often fly under the radar, especially with how pervasive diet culture is in our society. Most people have had a brush with some type of disordered eating in their lifetime, whether it turned into a diagnosed Eating Disorder or not.
Eating Disorders are not a phase, a diet, choice or a lifestyle. They are serious mental illnesses that need highly qualified professionals to treat. They are deadly and need to be addressed and taken seriously. Not just during Mental Illness Awareness Week, but every day.
Shine a light on Eating Disorders during Mental Illness Awareness WeekHilary Thomson2020-10-05T22:38:51-04:00
Revolutionizing Recovery. That is the focus of this year’s virtual Body Peace conference coming in November.
Body Peace is a first-of-its-kind international virtual body image and Eating Disorders conference. In its second year, Body Peace creates a space where people can gather and learn about Eating Disorders and recovery through engrossing keynotes, knowledgeable speakers, accredited trainings and pertinent panel discussions. The conference is unique in that it brings together Eating Disorder survivors, caregivers and medical professionals in a supportive atmosphere where they can not only learn from the conference materials, but also from each other.
This year’s theme ‘Revolutionizing Recovery’ will highlight the vast array of experiences people with Eating Disorders have dealt with on their recovery journey. Participants will hear from those representing the Black, LGBTQ+, indigenous, fat acceptance and disabled communities, all of whom have very different perceptions when it comes to Eating Disorders and recovery. Body Peace also aims to review the mistakes different treatment modalities and professionals have made in the past, and how healthcare systems across the globe can actively advance in a way that is more supportive and inclusive of all people needing support.
This year Body Peace will also be offering accredited trainings for family physicians, dietitians and psychotherapists who want to learn more about how they can support people with Eating Disorders in their practice. For caregivers there will be an opportunity to attend a training focused on Emotion Focused Family Therapy (EFFT) which will help them both practically and emotionally support their loved one’s needs in recovery.
Body Peace 2020 will be held on November 19 and 20 over Zoom. It is open to anyone who is interested in learning more about Eating Disorders and is a non-profit event organized by charitable organization Body Brave, and with support from NIED, Eating Disorders Nova Scotia and Bridgepoint Centre for Eating Disorders in Saskatchewan. All proceeds from the conference go towards life-saving treatment to those affected by Eating Disorders. Registration is offered on a sliding scale, and group rates are also available.
To register and learn more about the jam-packed schedule and thought-provoking speakers visit the Body Peace conference website.
Save the date for Body Peace 2020!Hilary Thomson2020-10-05T20:51:46-04:00
On July 8, 2020 the government of Manitoba announced an additional $1.1 million to fight Eating Disorders in the province. The funding will help reduce wait times for intensive treatment in Manitoba and ensure that more people with Eating Disorders in the province are able to access treatment closer to home.
This is a big win for Elaine Stevenson, who has been advocating for better treatment for Eating Disorders in Manitoba for the past 30 years. She began her career as an advocate when her daughter Alyssa was diagnosed with an Eating Disorder at only 12 years old. “It was a deeply personal need to find Eating Disorder treatment in Manitoba for our daughter,” she says. “And after talking to some parents it quickly became evident to me that the need was much much wider and stronger than just our own individual needs as a family.”
Stevenson has played an integral role in achieving several other big wins for Eating Disorder treatment in Manitoba, including the creation of the Child and Adolescent Eating Disorders Service at the Health Sciences Centre in Winnipeg in 2001, and the Provincial Eating Disorder Prevention and Recovery Program at the Women’s Health Clinic in Winnipeg in 2009. She was one of the founding members of the Eating Disorders Association of Manitoba and she served as their Vice President for seven years before she left to start the Alyssa Stevenson Eating Disorder Memorial Trust in memory of Alyssa who lost her battle with her Eating Disorder in 2002. “My husband and I really wanted to just concentrate on advocacy,” she says.
With a long career in advocacy under her belt Stevenson has a lot to share about how to advocate and raise awareness for Eating Disorders in Canada. Here are some of her key tips for being a sustainable and successful advocate.
Stevenson says the first step to becoming and advocate is to get educated. Stevenson had lots of first hand experience with Eating Disorders because of Alyssa, but has also relied heavily on the National Eating Disorder Information Centre (NEDIC) over the years to provide her with up to date information and statistics that she could use in letters and bring to meetings with elected officials. “If I asked for pertinent statistical information to back me up on a certain cause they were fabulous,” she says. She also makes an effort to keep on top of the news, current research and what it going on in Eating Disorder treatment across the country. “It’s keeping abreast of what’s happening and when it’s pertinent and it’s information that I can use I am going to take that to the key decision makers,” she says.
According to Stevenson one of the most important things to do if you want to be successful as an advocate is to align yourself with like-minded organizations and people. For Stevenson that was other Eating Disorder organizations like NIED, FEAST and The Looking Glass Foundation; but also, other groups and people that were supportive of women’s causes like the Provincial Council of Women and various cabinet ministers. She also made a point to get to know some of the Eating Disorder program coordinators and organizers in both Manitoba and the other provinces to get their perspective on things. “It’s so important to extend yourself,” she says. “I don’t have all the answers.”
Stevenson also loves to celebrate the wins of other Eating Disorder groups and organizations across the county. She was even in Toronto to support NIED when they announced the National Eating Disorder Strategy last year. “It’s that respect for what they’re doing and respect for what I’m doing,” she says. “You get all these people together across the country and what a powerful voice.”
Figure out who to talk to
Stevenson says that while it is important to get in front of ministers of health both provincially and federally, there are also other people that need to be on your radar. For her it’s getting her message across to senior healthcare staff who are the ones making recommendations to the ministers. “It’s important to make contact with the minister to establish yourself as an advocate for what your needs are,” she says. “But it’s also good to follow up with the key senior staff that are in charge of mental health and addictions in those departments.”
Have a vision
Once you have figured out who you want to get in front of Stevenson says it is important to be targeted with your message. “Don’t be all over the place,” she says. “If you keep coming every time with a different message they are not going to take you seriously.” One of her key messages has been how unacceptable and dangerous long wait lists for treatment are in Manitoba. Consistent messaging played a key role in the government’s most recent funding announcement which will cut wait times for outpatient treatment in Winnipeg from months to weeks.
Stevenson says that as an advocate you need to have a lot of patience but also persistence. She says she is constantly pushing to get her cards in the game. “You’re competing with so many other causes,” she says. “You’ve got to do whatever you can so that they don’t forget about you.” Getting to know local media can be one way that can help you remain relevant, especially if you are giving them interesting things to talk about. However, Stevenson warns about being too pushy. “Be respectful because if you’re always just bothering them, then they’re not going to think it’s really newsworthy,” she says.
Stevenson says that as an advocate it is important to speak up if there is something that is detrimental to your cause, especially in the media. She says she has written many letters to the editor expressing her opinions about what look like well researched news articles but are really ads promoting a certain diet or weight loss. “As an advocate I feel very strongly about speaking up about that kind of stuff,” she says. “There’s a plethora of information out there that is not healthy, inaccurate and potentially very dangerous.”
Take care of yourself
Being an advocate can be exhausting and Stevenson says it is extremely important to recognize when you are getting burnt out. It is not uncommon to feel inadequate and like you aren’t doing enough, especially if it seems like no one is listening. “Sometimes you just have to put the computer down, don’t answer the phone and take time for yourself,” she says. “Renew, relax and just take care of yourself because your own mental health is so important.”
Eating Disorders can be very difficult to diagnose and often go unnoticed for years by friends, family and healthcare professionals.
Many family doctors, who are the first point of contact for people with Eating Disorders, have no idea what to look for because they get very little training in Eating Disorders throughout their medical education. Program Director at Body Brave (www.bodybrave.com), a support centre for those with Eating Disorders, Dr. Karen Trollope-Kumar says this is an issue because most family physicians don’t feel comfortable diagnosing or treating Eating Disorders, allowing them to fly under the radar.
Trollope-Kumar encourages all physicians to take the typical signs and symptoms of an Eating Disorder seriously. This includes:
Sudden change in weight (either up or down)
Changes in mood (like heightened anxiety or depression)
Changes in eating patterns like going on a restrictive diet (paleo, keto, vegan)
Even if these symptoms seem benign at first, ask more questions. Someone who says they are going vegan to protect the environment may still have an underlying motivation to manipulate their body size or shape in an unhealthy way.
Trollope-Kumar says another issue is that family physicians often don’t know where to turn, even if they expect that their patient has an Eating Disorder. Many areas across the country do not have specialized care for people with Eating Disorders, and even those that do (usually in larger city centres) have waiting lists that are months long.
Many family physicians will find themselves supporting a patient who is waiting months for a higher level of care. In this situation Trollope-Kumar says communication is key. Be supportive, non-judgemental and understand that Eating Disorders are complex illnesses, not a fad or lifestyle choice.
It is also important to understand how to properly monitor patients while they are waiting for treatment. The National Eating Disorder Information Centre (NEDIC) (www.nedic.ca) has some great resources on their website outlining what to check and monitor in an Eating Disorder patient. NEDIC is also a great place for any physician who wants to learn more about diagnosing, treating and caring for a person with an Eating Disorder.
Trollope-Kumar says in an ideal world doctors would get more information on Eating Disorders during their medical training. However last year Body Brave and NIED co-hosted the first-ever virtual annual e-conference on Eating Disorders called BodyPeace and together with other organizations across Canada will be launching be launching Eating Disorders University (edU) – another first for Canada. As part of its new education strategy NIED (ww.nied.ca) is focusing on providing skills-based educational programs and resources through this new learning and engagement platform. Check this space for more information as it becomes available.
As a primary physician what would you like to learn about Eating Disorders? If you are a patient, what do you wish your doctor knew?
What you need to know about Eating Disorders as a family physicianHilary Thomson2020-07-20T13:44:40-04:00
Firstly, let me introduce myself. My name is Hilary Thomson and I am a journalist and writer based in Kemptville, Ontario. I was diagnosed with anorexia when I was 16 and the past 15 years has been a whirlwind of hospital admissions and treatment attempts. I have been in steady recovery now for three years and while I don’t consider myself fully recovered; I am definitely on my way.
So, what am I doing here? Having struggled with my mental and physical health for so long I am passionate about raising awareness for Eating Disorders and helping others on their recovery journey. I have known about NIED ever since they launched in 2012 and always felt that one day I wanted to get involved. I started out on NIED’s education committee, helping to organize symposiums, but I soon got the opportunity to get involved with their communications team. My training is in journalism, so it felt like a perfect fit.
I am so excited to have this platform to further NIED’s mission to provide access to educational, informational, and recovery-oriented resources related to the treatment and prevention of eating disorders in Canada. The goal of this blog is to provide engaging and well-researched content geared towards people with Eating Disorders, their caregivers and healthcare professionals. It will include everything from useful recovery tips to interviews with people with Eating Disorders from diverse backgrounds, knowledgeable Eating Disorder treatment professionals and advocates. The goal is to represent the reality of Eating Disorders and treatment in Canada and provide a platform for insightful perspectives and conversations.
NIED is thrilled to be launching this blog on World Eating Disorders Action Day, an initiative that unites activists across the globe to expand global awareness of Eating Disorders. There are roughly 1 million people struggling with Eating Disorders in Canada alone right now, many of whom are suffering silently and without proper support or treatment. Eating Disorders thrive in isolation and the more people speak out about their experience the more likely we are to see change. On this day of action we are asking you to consider telling your story. If you are not sure how we have prepared a document which outlines how to tell your story responsibly, without putting you or anyone else at risk. You can download the pdf here.
We would love to see this blog morph and grow into something that is driven by our community. We want this to be a welcoming and informative space for anyone looking for support in their own recovery or help in supporting a loved one or patient/client. We are extremely interested in hearing what you would like to see. Is there a topic you want us to cover? A person you would like to see interviewed? Do you want a platform to help tell your own story? We would love to help.
Contact us here and let us know what you think. What do you think is missing from the Eating Disorder recovery space?