The History of Eating Disorders Awareness Week (EDAW)

The year was 1986. Around 40 people gathered from all over the United States, Canada and the UK to talk about organizing an international Eating Disorders Awareness Week (EDAW). NIED Co-founder Patti Perry was at that meeting along with three other Canadians, Dick and Mary Moriarty, who would go on to found the Bulimia Anorexia Nervosa Association (BANA), and the first Executive Director of the National Eating Disorder Information Centre (NEDIC),. “The idea was to increase awareness, to identify people who were struggling and to look at the needs of individuals in terms of treatment, because in 1986 there wasn’t a whole lot going on [in the Eating Disorder community], or people were just getting started,” Patti remembers.

At the meeting it was decided that attendees would go back to their cities, states and provinces to push to get EDAW recognized. Unfortunately, they found that getting even a day declared as EDAW was not as easy as they had hoped. “In 1986 it really wasn’t simple at all,” Patti says.

In 1988 NEDIC became the national coordinator for EDAW and various Eating Disorder advocacy groups, professionals and treatment centres in Canada started recognizing it yearly during the first week in February. Through the advocacy of NEDIC and other groups across the country EDAW slowly started to be officially recognized by municipalities, provinces and territories across the country. The Yukon, British Columbia, Alberta, Saskatchewan, Nova Scotia, Newfoundland & Labrador, and most recently Ontario have all proclaimed EDAW.

Suzanne Phillips of NEDIC says it was an almost six-year journey to get EDAW proclaimed in Canada’s largest province, Ontario. The first thing they focused on was creating set dates nationally for EDAW, because previously they were floating dates starting on the first Sunday in February. “We had to build a case with everyone across the country to say look, we’ll have an easier time getting something [proclaimed] federally, provincially, if we can have set dates for EDAW,” Suzanne says. “We got everybody on board with that, so that was the first hurdle that we passed.”

In July 2015 both NEDIC and NIED started writing letters to MPPs and getting letters of support for the proclamation in Ontario. “It was a lot of calls, a lot of emails building up the number of people in Ontario and other community groups to also get on board with posing this ask,” Suzanne says.

Co-founders of NIED, Wendy Preskow and Lynne Koss, met with many MPPs to try and get them to take on the proclamation of EDAW as a private members bill. Although meetings went well, it seemed like all the MPPs had other priorities and EDAW never made it to the house. “It was very hard to find an MPP who did not already have a private member’s bill in the works,” Wendy says.

In 2018 Jill Andrew was elected to provincial parliament. Jill had been a long-time supporter of NEDIC and is the Co-founder of Body Confidence Canada, an organization that advocates for equitable and inclusive images, messages, practices and policies supporting body diversity. In 2018 Jill first championed Bill 61, to get EDAW proclaimed officially in Ontario, however it didn’t make it through the house. “There was that disappointment of getting things so far and then having what felt like a bit of a step back,” Suzanne remembers.

However, Jill didn’t give up. She brought Bill 61 back to parliament in 2020 and it passed unanimously across party lines on December 3, 2020, almost 35 years after the first meeting in Baltimore. “I believed EDAW would help bring attention to the diversity of people who experience Eating Disorders, including Black, and racialized women and girls, queer people, transgender people, disabled people and fat people,” Jill said in a press release after Bill 61 received Royal assent on December 8, 2020. “It will promote the ongoing need for culturally responsive resources for the treatment and prevention of Eating Disorders.”

Both Wendy and Suzanne agree that the proclamation of EDAW in Ontario from February 1-7 every year was a fantastic moment for Eating Disorder advocacy in the province. “It felt like everybody’s hard work was recognized.” Suzanne says. “It felt like individuals who are impacted by Eating Disorders had what they rightfully deserve, which is recognition. It’s a first step, and I think it was a very necessary good first step to give us the energy to keep going.”

For more information and/or support visit www.nied.ca

The History of Eating Disorders Awareness Week (EDAW)2021-01-27T09:35:57-05:00

Holidays and Eating Disorders

Holidays can be a tricky time for many people with Eating Disorders.

I know for me Christmas when I was 16 was the time when my family really noticed something was wrong. My grandmother used to do all this wonderful baking, shortbread cookies, mince meat tarts (very British), lemon curd and rum balls were some of our family favourites (still are). I love pastry and as strange as it may sound to some, my grandmother would often bake up the extra and save it especially for me. She has told me since then that she knew something was wrong when my extra special piece of pastry went uneaten for the first time in history.

For a long time, Christmas was stressful. I desperately wanted to join in on the festivities; but was also petrified of all the food. When I met my husband and started going to his family’s Christmas dinners, I found them chaotic and difficult. I tried to act normally while still calculating every morsel of food that I ate, often still feeling incredibly guilty after the holiday meal. Last year I celebrated with both my family and my husband’s family, which meant four holiday meals (Christmas Eve and Christmas Day x2) and even though I consider myself to be farther along in recovery than I have ever been I still found that challenging. Eating Disorders thrive in isolation and rigidity and the holidays are all about connection, flexibility and celebrating by straying from your normal routine. These things can be hard to reconcile for anyone struggling with an Eating Disorder, no matter how far along they are in their recovery journey.

My experience is with Christmas, but I know there are holidays in other faiths that can also put a huge strain on those with Eating Disorders. Chanukah, like many Jewish holidays, is celebrated with food. Although it differs from many other holidays in the Jewish faith in that there aren’t any set rituals around food, the types of foods eaten can be challenging for people with Eating Disorders. Jewish people celebrate Chanukah to commemorate a miracle of oil lasting eight days longer than expected, so it is traditionally celebrated with fried foods like latkes and jelly doughnuts.

Jewish dietitian, Bracha Kopstick says eating theses foods can become even for challenging for people with Eating Disorders because of the comments made around the Chanukah table. People often comment on how unhealthy these foods are and how much weight they are going to gain over the holiday. Recipe developers make up “less guilty” and “low-carb” versions of traditional foods, while others say enjoy the holiday and “make up for it” afterwards. “Parties and get togethers can be quite toxic with diet talk fueled by belief of these ‘bad’ foods, while simultaneously eating them to celebrate the holiday,” Bracha says.

Many western holidays like Christmas and Chanukah are triggering for people with Eating Disorders because of the abundance of food and diet talk. However, holidays that involve periods of restrictive eating can be just as triggering for people with Eating Disorders. Ramadan is the most sacred time of year for those of the Islamic faith, observed according to the lunar calendar at a different time each year. Muslims observe Ramadan by fasting during the daylight hours for an entire month, to remember the month that their holy book, the Qur’an, was revealed to the Prophet Muhammad.

Researchers have studied that affect of Ramadan fasting on the presence of disordered eating behaviours and the development of Eating Disorders. A study in the International Journal of Eating Disorders found the monthlong fasting caused an increase in adolescent hospitalizations during or shortly after Ramadan. Of those admitted 50 per cent were diagnosed with an Eating Disorder.

The results of the study confirm that this drastic change in eating patterns might trigger the development of Eating Disorders in already vulnerable populations, and/or exacerbated symptoms of a pre-existing Eating Disorder.

Holidays in any culture or religion are difficult for those with Eating Disorders. If you or a loved one is struggling don’t be afraid to reach out. The National Eating Disorder Information Centre (NEDIC) website is a great resource for those looking for help in Canada. www.nedic.ca

Holidays and Eating Disorders2020-12-17T10:52:35-05:00

Hand Knit Hope gives back

NIED is giving back to the wider community this holiday season and beyond through their Hand Knit Hope initiative.

Hand Knit Hope was started by one of NIED’s early volunteers, Alex, who realized the therapeutic nature of knitting and crocheting through her own Eating Disorder treatment in Toronto. “I started the program because I was inspired by the women I met in treatment,” she says. “We starting knitting in the kitchen together after mealtimes and gifting finished items to new patients coming into the program.”

When Alex started volunteering with NIED she asked founder, Wendy Preskow if they could start the Hand Knit Hope program under the NIED umbrella. “She came up with a logo, created a website and started hosting circles of friends and family just to start knitting or crocheting,” Wendy says. Over the years people ages 6 to 90 have been involved in the program.

The ultimate goal was to donate finished items to people in treatment centres, support groups and anyone on their recovery journey who needed a bit of warmth and love on their path to wellness. The initiative has only grown from there with Wendy and some of her friends and family members knitting hundreds of items a year. The Hand Knit Hope program also expanded into doctors’ and dentists’ offices, with Wendy leaving a knitting basket in waiting rooms, encouraging patients to knit a row while waiting for their appointment. “When we were hosting in-person symposiums we would also speak about our little Hand Knit Hope project and I would take baskets of knitting needles and wool and give to it anybody there who wanted to take it to their doctor or dentist,” Wendy says.

Since the start of Hand Knit Hope Wendy has not stopped knitting and many of her family members and friends have also continued to be dedicated to the initiative. Up until 2019 Wendy was able to send loads of headbands, scarves, neck warmers, and even gloves to treatment centres and programs in Ontario, Manitoba, Alberta, Nova Scotia, Saskatchewan, Newfoundland and Labrador, British Colombia and Quebec. “It’s amazing to see how the sentiment has grown Canada-wide with NIED,” Alex says.

Unfortunately, the COVID-19 pandemic has wreaked havoc on many Eating Disorder treatment programs across the country. Since the COVID-19 shut down Wendy and another friend of hers have made 100 items each; but they were having a hard time finding a place to send them with many programs closed down, operating virtually or at a limited capacity. “I was sitting with all this stuff and not knowing what to do with it because programs have shut, there are no more outpatient programs, and inpatient programs are collapsing,” she says. “Even in B.C. I spoke to the Looking Glass Foundation the other day and they can accommodate 14 clients in the residential program, however  because of COVID only  up to 6 in order to keep people apart. So then what?”

Fortunately, Wendy was able to reconnect with the Eating Disorder Foundation of Newfoundland and Labrador where she sent another parcel of 60 items for them to distribute to the programs that were still running for people with Eating Disorders needing support in their province. Inspired by the season of giving Wendy decided to do something different with the rest of the Hand Knit Hope items and donate them to charities in need outside of the Eating Disorder recovery space. Through NIED’s Executive Director, Michelle D’Amico, she sent 20 items to an organization in Ottawa called Restoring Hope Ministries, which provides a safe space for street-engaged youth aged 16-25.

Wendy then donated over 135 items to Ve’ahavta, a Jewish humanitarian organization that gives food and clothing to homeless people in downtown Toronto. “I don’t want to stop doing do this just because programs are closed, because I just love doing it,” Wendy says. “This is our way of giving back.”

Wendy says Hand Knit Hope is an ongoing project and it is clear that COVID-19 will not stop her or any of the other dedicated volunteers. “As long as I, and a handful of others can continue and create it will not stop,” she says.

If you’re interested in participating, or are in need of a warm comfortable item contact wendy@nied.ca.

Hand Knit Hope gives back2020-12-12T08:03:13-05:00

“It affects everyone” – Highlighting male Eating Disorders throughout Movember

Movember is a worldwide initiative to raise awareness for men’s health which is run throughout the month of November every year. Many men all across the globe grow mustaches to raise awareness for men’s health issues such as prostate cancer, testicular cancer and men’s suicide.

This Movember NIED would like to shed some light on another men’s health issue that isn’t widely discussed. Eating Disorders have historically been labelled as a young women’s disease and the idea that men can be just as affected by these deadly disorders is something that is only now making into the mainstream. The National Eating Disorders Organization (NEDA) states that 1 in 3 people struggling with an Eating Disorder is male, but due in large part to cultural bias, they are much less likely to seek treatment. In a recent BBC documentary called “Living with Bulimia” famous cricket player, Freddie Flintoff, shares his experience with an Eating Disorder, which he kept hidden from his family, friends, and the world for decades.

Chris Vallee knows the stigma attached to being a man with an Eating Disorder all too well and is glad that male Eating Disorders are now being discussed more in the media. Chris was only 12 years old when he developed Anorexia Nervosa. He was a shy and anxious child which he believes contributed to the development of his Eating Disorder. That, and the stress of moving from elementary school to high school and the realization of the different societal norms that were at play as he got older, which included pressures around weight and judgement about food. “There wasn’t one specific cause of it,” he says. “It was just a multitude of things combined. But the ultimate goal, obviously, was to gain happiness by losing weight.”

Chris was first admitted for treatment when he was 12 and cycled in and out of hospital and treatment programs until he was 18. He says that up until he was about 16 or 17, he definitely felt the stigma of being a boy with an Eating Disorder, and he kept it hidden from most people. “That was extremely challenging until I was mature enough to know that no matter what gender you are, you can be affected by anything in life,” he says.

While Chris says he couldn’t always relate to all the girls he met in treatment as an adolescent, he does believe that many of the things that trigger an Eating Disorder, like depression, anxiety and societal pressures, are the same for men and women. “It’s just like depression,” he says. “The Eating Disorder sort of gets triggered by different things as well. So, whether you are a man, woman, non-binary or whatever you identify as, it affects everyone.”

He also believes that the idea of Eating Disorders being a feminine illness is detrimental to men who are suffering. Chris identifies as a gay man; but emphasizes that there are many straight men that struggle with Eating Disorders as well. “I know someone who I was in treatment with and he is doing great. He has a girlfriend, and he is very proud; but he struggled with that a lot,” he says.

Chris believes that male Eating Disorders are more prevalent than most people realize. Today’s unrealistic beauty standards don’t just touch women. There are many men out there that manipulate food and their body to try and achieve what society dictates as ideal. “I think people need to start looking around them and see that there are tons of guys who are very obsessed with the way they look,” he says. “It’s not just girls who buy full length mirrors and pose and stuff. Guys are the exact same.”

Chris says acceptance is key for any boy or man who is finding themselves struggling with food. Eating Disorders are hard enough to deal with on their own, without the added stress of fighting a diagnosis because it is a “girl’s disease.” Everyone deserves the same access to non-judgemental support and treatment, no matter their gender.

Chris has now been recovered for 3.5 years and is a mentor at Hopewell in Ottawa. He credits his recovery to his great treatment team and his very supportive family. He is adamant that everyone should find a support system in recovery, whether that be paid professionals, family or friends. “It’s really, really hard to do it on your own,” he says. “You need someone as a backbone, or someone to talk to.” He also found a lot of motivation in his friendships, hobbies and career aspirations and goals. He definitely remembers a time when he thought he would never recover; but now he believes that full recovery is possible for anyone. “There are many people out there who have fully recovered and just know that it won’t be a perfect journey and there will be slip ups here and there,” he says. “The ultimate goal is to know it is possible and to try your hardest to get there.”  For more information and resources for support check out www.nedic.ca

“It affects everyone” – Highlighting male Eating Disorders throughout Movember2020-11-23T09:09:34-05:00

NIED launches new website

The newly upgraded site highlights important new sections covering Help & Support, the launch of NIED’s new Education Programs and our new Blog. The Home Page carousel banner highlights topical information and events, without the need to scroll through the page. The Home Page features Amy Preskow’s powerful poem My Eating Disorder is Not, key facts about Eating Disorders in Canada, the Canadian Eating Disorder Strategy launched last year, our Annual Report, worldwide Eating Disorder studies, and how to support NIED in our vital work.

“It’s all focused on helping NIED fulfill our mission to assist people in coping with the effects of Eating Disorders by providing educational, informational and other resources relating to recovery, mental illness and Eating Disorders,” said Len Preskow who, along with art director Richard Ponsonby, are NIED’s Communication Team volunteers responsible for the NIED site.

The updated site is easy to navigate and is an in-depth and relatable resource for anyone touched by Eating Disorders. NIED is committed to helping support those affected by Eating Disorders in Canada, and we hope this website redesign helps us spread awareness, and reach and support more people across the country.

Click here to access the home page and explore the site for yourself!

NIED launches new website2020-10-05T20:52:34-04:00

The lack of mental health services across Canada is real

In an article published in the Globe and Mail earlier this year, journalist Erin Anderssen explored the lack of psychiatrists across the country, particularly in small and remote areas. According to the Globe’s analysis half of all Canadians live in parts of the country where the number of psychiatrists fall below the ratio recommended by the Canadian Psychiatric Association and 2.3 million Canadians live in areas with no permanent psychiatrist at all.

The article did a great job outlining the areas in Canada that are most underserved by the psychiatric community. While the gap lies mostly in small, remote and northern communities it does note that there are exceptions to this rule. For example, Brampton, one of the fastest growing and youngest communities in Canada, is extremely lacking in services. The city has about one psychiatrist for every 24,000 people, which is one of the worst ratios in the country.

As someone who has been struggling with an Eating Disorder for over a decade, I have seen this gap in the mental healthcare system first-hand. I have been put on many types of medication over the years meant to try and help me with my anxiety and Eating Disorder. Usually medication changes would come when I was in residential treatment or hospitalized in an inpatient setting. In those situations, I would have access to a psychiatrist who would give me a prescription based on their assessment of my needs.

However, once I was out of an inpatient setting it always fell to my family doctor to manage my medication, something that was clearly out of her wheelhouse. When I decided that my current prescription wasn’t working for me anymore, I did the responsible thing and asked for her help to either ween off the medication or find something that would work better. I could tell that she didn’t feel like she had the expertise to make recommendations, yet she also had nowhere to refer me to where I could get specialized help.

I live in Kemptville, just outside Ottawa and go into the city every week to get specialized treatment for my Eating Disorder. However, even with the roughly 20-30 psychiatrists per 100,000 people in Ottawa, on the higher end of the spectrum, my doctor still wasn’t able to refer me to someone who could help. I ended up doing some research myself and basically winning the lottery in finding a psychiatrist in Brockville who agreed to see me. Even so I waited about three months for an appointment.

Unfortunately, it is not just outpatient services that are lacking in Ontario, specifically in the world of Eating Disorder treatment. Two of the most well-respected treatment centres for Eating Disorders in Canada at The Ottawa Hospital (TOH) and Toronto General Hospital (TGH) are currently sharing a psychiatrist. Dr. Geneviève Proulx splits her time between the two programs, which makes having access to her difficult for even the most acute patients. TGH used to have five Eating Disorder specific psychiatrists on staff, all of whom left the program when it underwent restructuring last year. Both TOH and TGH have had to cut valuable therapy groups in their programs because of a lack of qualified staff.

We need more specialized care in this country for those suffering from mental illness. We live in a society that is slowly accepting the fact that mental health is just as important as physical health and the services available need to catch up.  The system is broken and we need to train and recruit young, forward-thinking doctors into the field of psychiatry. Whether it be ensuring that psychiatrists are paid the same as their counterparts or shaking up the way they see patients, it is important for the health of our country that we take this issue seriously. The stigma around mental health is melting away and the field of psychiatry needs to catch up and change with the times. It is important for the future health and well-being of the country.

Check out NIED’s letter advocating for change here. You can also do your part by writing to your provincial Health Ombudsman about the need for more psychiatrists in your area.

The lack of mental health services across Canada is real2020-10-05T20:53:09-04:00

I am so glad you are here!

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?

I am so glad you are here!2020-10-05T20:53:22-04:00
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