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.
This article was written by a volunteer, KC, that addresses the theme – Eating Disorders Can’t Afford to Wait – What Happened While we Waited. KC is a young adult who has lived under/in/against/with anorexia for nearly a decade. I live in BC amongst big trees, wild ocean, my very special dogs, and my wonderful family and friends. I have a BA in anthropology and am active in paid, volunteer, and community roles related to health research, social justice, and community activism.
When you read the sentence “What happened while we waited,” you may imagine a group of people sitting in a waiting room, signing their names on a wait list, or standing in a line to board a ferry. Waiting is often associated with stillness, patience, and expectation. But when you enter the world of an Eating Disorder, you do not step into anything like an orderly terminal. Instead, you are thrown out to sea.
What happens when you get thrown into an unfamiliar, threatening sea with no land in sight? For the first half a decade of my Eating Disorder, my mom would often tell practitioners that we were just managing to hold our heads above water. For her, keeping afloat was a constant struggle: A struggle to keep me alive and safe, to bear with the litany of challenges and pain, and to find understanding and help.
For me, I had forsaken any expectations of reaching something better. I was not in a place of active waiting for return or arrival. In this metaphorical sea, I was swimming just “to get out,” all while other people screamed at me that I was going into deeper, rougher waters. I no longer wanted to get to the land I had left or to any new land people tried to promise me, I just wanted out of the sea I was in.
People do many things when they are thrown out to sea – metaphorical or real. They may cry out, search, fight, try, give up, try again…But they don’t wait.
We are being told to wait: Wait for assessments, appointments, beds, funding, better research, better treatments. Many of us are forced to wait even when it may seem that adequate supports exist: wait for your weight to change so you can meet eligibility criteria, wait for available providers to take you seriously, wait some length of time until those providers realize the current approach is not working at all, wait in the ER while one practitioner tells you you’re close to dying and the next tells you you’re overreacting, wait until the caring nurse relieves the punitive one, wait a requisite time and duration of weight gain to be discharged from a harmful system, wait in worsening psychological and physical decline until something might change and work.
Eating Disorders don’t wait. You can’t put an Eating Disorder on hold like we have in this pandemic with social contacts, working in the office, going to the gym, or travelling. An unmanaged eating disorder rages and infiltrates a person’s brain, body, life, family, and community.
So, as we are told to wait and as policymakers, health authorities, and practitioners look at case files and available beds, people with Eating Disorders and their loved ones are grappling, flailing, striving, suffering, and trying to survive.
There is immense suffering in life with an unmanaged Eating Disorder that cannot be captured in needs reports or wait lists. Eating Disorders tear at relationships, commitments, bodies, and even a person’s own sense of self. While people focus on weight loss, there is an underappreciation for the loss of one’s passions, physical abilities, competencies, ease in the world, caring mutual relationships, and vitality. A person with an Eating Disorder may experience utterly foreign sensations, urges, and feelings, which can be terrifying and distressing. There can be rage, fear, and despair at a level the person did not know was possible. Loved ones often feel the wrath of this rage, the harmful consequences of this fear, and the heavy blanket of numbness from the despair. As we continue to wait for meaningful understanding and support, those with Eating Disorders and their loved ones continue suffering.
The vast complexity and value of the lives that we all continue living with Eating Disorders is likewise not captured by reports and statistics.
The deep pain and fleeting times of relief, moments of pure joy and dark despair, meaningful victories and devastating defeats, daily habits and absurd coincidences, moving new connections and tragic losses continue to exist. As individuals, with diverse and rich attributes beyond “anorexic” or “bulimic,” we continue to be and interact with the world (albeit often more restrictedly) as our unique selves. In the depths of an unmanaged Eating Disorder, I have seen people kiss a newborn niece, graduate from university, tenderly care for seniors as a volunteer in long-term care, and speak articulately at an event for a cause that mattered to them. We are not BMIs to increase, beds to empty, diagnoses to resolve, and checkboxes to tick off.
As we continue to wait, people with Eating Disorders often resort to what has been done for decades, even centuries: lacking an available, accurate, and usable understanding of the disorder or any treatments, we and our loved ones guess, try, fail, try again, and hope to reach a point of sustainable life. There is such a lack of recognition of the important ways people with eating disorders and our loved ones create our own ways to cope and live meaningfully with this illness. This is one of the most important things we are doing right now while we wait: We stop waiting on the system.
But endurance, trial and error, and sacrifice as the status quo is unreasonable and dangerous. It took 8 years of my life, significant costs and damage, and incalculable suffering to get afloat. It was only because of immense support and privilege that I reached a place of stability. And, stability in the Eating Disorder sea can still be precarious.
In the absence of accessible, suitable, compassionate, effective services, people with Eating Disorders will continue to be thrown out to sea. Without acknowledgement of these gaps and inadequacies in the current understanding, treatment, and support of eating disorders, people will continue to suffer and to die in that sea. We can’t afford the pain, all the losses and sacrifices, all the damage, and all the life being lost that is incurred as we are told to wait. So, as EDAW underlines, we simply can’t afford to wait.https://nied.ca/the-history-of-eating-disorders-awareness-week-edaw/
EDAW 2021: Eating Disorders Can’t Afford to Wait – What Happened While We WaitedHilary Thomson2021-03-03T20:19:04-05:00
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)Hilary Thomson2021-01-27T09:35:57-05:00
Sarah Thomson was diagnosed with Anorexia Nervosa when she was 16 years old. Her Eating Disorder developed quite quickly, and she soon found herself lost in a world of weight loss and restriction that seemed impossible to escape. “At first I was protective and got some thrill out of ED,” she remembers. “I knew using it wasn’t an effective coping strategy, but I didn’t know how else to cope.”
Despite numerous treatment attempts, Sarah couldn’t seem to kick the Eating Disorder mindset. It seemed unlikely to her that she would ever be able to live her life in a way that didn’t revolve around calories, food and her body. “It was like an abusive relationship that I couldn’t seem to cut ties with,” she says.
In March 2010 she was admitted to Homewood Health Centre for the last time. This was her second time at Homewood, and she was desperate to make it work. “My heart was like if this doesn’t work this is the end,” she says.
Sarah made it through the program at Homewood and was discharged in the summer of 2010. She says she did well in the artificial setting of treatment; but once she was back in the real world she started to struggle. “I went back to university and I didn’t relapse per se in my head, but I lost a lot of weight again,” she says. “But I think what kept me going is I still really wanted recovery.”
Sarah remembers trying to be as engaged in life as much as she could, while still in a place of quasi-recovery. She kept herself afloat by using all her supports, like seeing a doctor, dietitian and counsellor regularly, to remind herself of what she wanted.
In the summer of 2011, she decided to take a huge leap out of her comfort zone and take a job teaching English at a camp in Spain. At first Sarah says it was terrible. Her Eating Disorder was raging, and her other mental illnesses rose to the surface. “I was not in a good place at all,” she remembers.
She saw a doctor, talked to her boss and her father was even ready to get on a plane and take her home. But Sarah knew that wasn’t what she wanted. “It was sink or swim,” she says. “I knew I could continue down this path or I could choose something different because I knew if I came back to Canada it would be just terrible. I knew I would be so disappointed my myself and it would further reinforce the Eating Disorder place in my head that I’m not worthy and I can’t do things and I’m going to be sick my whole life.”
So Sarah swam. She leaned into the structure of the camp and ate the food that was placed in front of her at every meal. “I had a hard time but then I got into a stride of just not even focusing on the food kind of thing, focusing on the other stuff and that just kind of flew by,” she says.
The momentum that she picked up in Spain didn’t waiver when she got back to Canada. She had a renewed sense of confidence and the feeling that she could rely on herself to make the right decisions when things got tough. “That was really important for me. Even though it was so uncomfortable to rely on myself and my own choices I realized I can get through things without anybody,” she says. “It gave me a good sense of myself.”
Sarah continued on with recovery while finishing a degree in microbiology at Guelph University. She also started speaking publicly about her experience with an Eating Disorder which helped her make peace with her past while also giving her motivation to continue on with recovery.
Sarah says she attributes her recovery to the small choices she made every day that pushed her towards the freedom she now has around food. Meeting her husband was another turning point for her as she was able to make the decision to prioritize her relationship with him over the Eating Disorder. “I was taking ownership of my recovery but asking for support when I needed it,” she says. “Life had already really opened up and so life essentially become more important than the restriction and the rules and the body image.”
Sarah now lives in Guelph with her husband and two children. While she sometimes still hears the Eating Disorder voice in the background, it is largely drowned out by the “Sarah” voice that she has worked extremely hard to strengthen. “I’ve learned to listen to my body about what my body wants,” she says. “That’s such a better relationship than following all the rules and everything.”
If she could give advice to someone who is in quasi-recovery, it’s not to stop half-way. “[Full recovery] is possible, but you have to take steps,” she says. “When you’re given opportunities to step outside your comfort zone, take them and try and take steps every day to make your life worth living because if you do that then eventually your life might be just more important than your Eating Disorder.”
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
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 firstname.lastname@example.org.
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 MovemberHilary Thomson2020-11-23T09:09:34-05:00
Caregivers are so important. For many, including people with Eating Disorders, having someone to lean on for support means the difference between life and death. Caregivers are hard working, selfless, brave and unwaveringly kind. That is why, on World Kindness Day we are outlining 5 reasons why caregivers are real-life heroes.
No task is too much
For caregivers no job is too difficult or mundane. Whether it be helping a loved one with grocery shopping or sitting with them as they complete their first full meal in months, caregivers are always there to provide resolute support. Some people with Eating Disorders have a hard time expressing their gratitude, especially if they are deep in the throws of their disorder; but caregivers continue to show up no matter how difficult it was the day before. This takes immense strength, bravery and perseverance. They know that the person in their care is suffering and they are willing to do whatever it takes to help them get through the day, and hopefully further towards recovery.
They provide emotional support
Caregivers are often the first line of defense when it comes to their loved one’s emotional needs. They are there to comfort and support when times are tough and provide encouragement when motivation wavers. They often act as a strong, steady force, ready to take on whatever the Eating Disorder throws at them. Many people with Eating Disorders have deep emotional needs and caregivers often have to learn how to address them, while remaining a constant reminder of recovery. It can be a steep learning curve; but one that caregivers remain committed to time and time again, showing their strength and tenacity in the face of hardship.
They become experts in medical care
Eating Disorders can come with many medical complications, many of which are life threatening. Caregivers often become experts in their loved one’s medical care, especially if they are unable to make sound decisions for themselves. Learning how to talk to doctors and address the medical issues that can arise from an Eating Disorder is like learning a new language. Yet caregivers take it on in stride knowing that being educated is the best way they can help the person in their care.
They take care of business
While caregivers provide lots of emotional support, they also keep things organized and on track. They maintain eating schedules to ensure their loved one is getting everything they need at each meal and snack. They often help handle daily living tasks like cleaning, putting garbage out and grocery shopping. These tasks can be difficult to do for some people with mental illness and caregivers are always there to help take some of that burden away.
They are unwavering advocates
Caregivers are the most dedicated advocates. They make phones calls, send emails and even knock on doors to get their loved one the help they need. They are their voice when they can’t advocate for themselves. And that…right there is priceless.
Caregivers truly are heroes; but sometimes they need support too. If you are a caregiver who is giving everything you have to support someone with an Eating Disorder, don’t be afraid to reach out. Check out F.E.A.S.T (www.feast-ed.org) or NEDIC (www.nedic.ca) for resources on how to help your loved one and to also get support for yourself.
5 reasons why caregivers are real-life heroesHilary Thomson2020-11-13T15:18:45-05:00
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.
Eating Disorders are extremely hard to detect. With many different diagnoses including Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, Orthorexia, Otherwise Specified Feeding and Eating Disorder (OSFED) and Avoidant/Restrictive Food Intake Disorder (ARFID), there are a variety of signs and symptoms which might signal that someone is starting to struggle with an Eating Disorder. This can make them particularly hard to diagnose, especially in a world that is rife with diet culture.
For parents and caregivers this can be extremely unnerving. Looking back at the start of my Eating Disorder there were definitely some indicators early on that I was developing an unhealthy relationship with food. My experience is with Anorexia, although I did develop some bulimic behaviours over the course of my Eating Disorder. That being said, from my experience to onset of many Eating Disorders is quite similar, no matter what the diagnosis ends up being. Here are some of the signs I wish my family had been aware of when I was a teen developing an Eating Disorder.
This is an easy one to fly under the radar. I come from a family that enjoys food, so it wasn’t odd for us to be talking about what we were going to make for dinner at breakfast time. However, when I was first developing Anorexia, the food obsession was incessant. I got much more interested in cooking for the family and my sister, who also developed an Eating Disorder, even decided she wanted to become a chef and asked for cookbooks for Christmas. The food obsession thing is tricky. There are many people that have a healthy relationship with food who find a passion for cooking. But I would say that if your teen or someone in your family suddenly seems to become obsessed with food, when they weren’t as interested in it before, it is a cause for concern.
Not only did I become obsessed with food, I became extremely inflexible with it as well. I stopped letting my parents make my meals, except for dinner. Dinner was the holy grail of my day and if plans changed at all I would get extremely upset. I remember one time throwing a tantrum because my Dad decided to make something different than the tofu stir fry I was expecting. This type of inflexibility is a common sign of an Eating Disorder and can manifest in many forms. Maybe, like me, your loved one is suddenly the only one who can prepare their meals; or they get extremely upset about any changes of plan surrounding food. Others may be more deliberate in their choices, like suddenly becoming a vegan out of the blue. Any significant change in diet; or change in the way someone interacts with food can be an important early sign of an Eating Disorder and should be addressed.
ANY weight changes
This may seem like an obvious one; but if someone isn’t aware that it may be an early sign of an Eating Disorder, this one can also go unaddressed. When I was first developing my Eating Disorder I lost some weight; but because my family was going through a difficult time with my sister I chalked it up to stress. My parents, friends, family and even my doctor seemed to accept this excuse and only caught on to the fact that I was struggling with food when I continued to lose weight, despite being told I needed to eat more. As someone who was in a naturally smaller body to begin with, it didn’t take much for me to enter into the underweight category; but for many who suffer with Anorexia, they are never clinically underweight. People developing Bulimia or Binge Eating Disorder may even gain weight as a result of their issues with food. This is why ANY change in weight should be considered a possible symptom of an Eating Disorder and should not be overlooked.
Intuitive eating has become a bit of a buzz word in health and wellness community over the past few years. Many people believe that it is as simple as eating when you are hungry and stopping when you are full, but this is only one piece of more complex puzzle that makes up the practice of intuitive eating.
Coined by Evelyn Tribole and Elyse Resch, intuitive eating is a ten-principle mind-body self-care eating framework. It takes into consideration nutrition as well as the emotional and social aspects of eating to help people make peace with food and live a healthier, happier life. These principles include:
Reject the diet mentality
Honour your hunger
Make peace with food
challenge the food police,
Discover the satisfaction factor
Feel your fullness
Cope with your emotions with kindness
Respect your body
Movement – feel the difference
Honour your health with gentle nutrition
As a dietitian who specializes in Eating Disorders, Dina Skaff believes that many of the principles of intuitive eating can be very helpful for those in recovery. She sees it as an important framework for making peace with food and body. “It’s that framework that really allows us to become in tune with our body signals and cues in order to fill our biological and psychological needs,” she says. “It also helps us identify external obstacles from being able to nourish ourselves intuitively.”
For people in recovery these obstacles can be the Eating Disorder itself but also diet culture which is everywhere in our society. Dina says sometimes diet culture can event coopt intuitive eating into a new diet that solely focuses on hunger and fullness cues and doesn’t take into account all of the other aspects of the process. “True intuitive eating is a weight inclusive health at every size approach,” she says. “It’s really about giving yourself unconditional permission to eat all foods in you’re here and now body. Not with the intention to change your body or your weight.”
One of the key principles of intuitive eating is not seeing any food as “good” or “bad.” Dina says that some people in recovery from an Eating Disorder they may find that they are craving the foods that they previously deemed off limits. This is a completely normal part of the process and it doesn’t need to be judged or scrutinized. Mental health plays a huge role in physical health and for many people eating a chocolate bar may be much healthier in the log run than another apple or handful of carrots. Following the rules of an Eating Disorder takes up a lot of mental energy which can in turn heighten anxiety and stress levels. “When we start to remove these [rules] and recognize that these obstacles are there, then we can start to remove the walls and the kind of rigidity that can happen with either following a diet or the rules of an Eating Disorder and allow that unconditional permission to eat,” she says. “Foods don’t hold a moral value. It may temporarily increase anxiety; but it actually opens up that mental space for more peace around food.”
Dina says it is important to note that for many people in recovery the “feeling your fullness” aspect of intuitive eating can be quite difficult, and it can be important to rely on a more structured way of eating at the beginning to get hunger and fullness cues on track. “It is self care to be incorporating that type of a structure when you need it,” she says. That doesn’t mean however, that you can’t implement other aspects of intuitive eating into your life like “rejecting the diet mentality” or “challenging the food police”. “There may be bits and pieces throughout the journey where you would be incorporating bits of intuitive eating without even really noticing it,” she says.
Dina is adamant that if someone with an Eating Disorder is thinking about experimenting with intuitive eating, they should always consult with a professional to make sure they are medically stable and getting the nutrition their body needs. Intuitive eating is an extremely personal journey and really diving into it requires a lot of self awareness in terms of bodily cues and the Eating Disorder voice. She stresses that some people with Eating Disorders may always need some sort of structured plan to safeguard their recovery. “Some people may be able to eventually move completely away from a meal plan and tap into their internal cues, but if there are others who can’t that’s OK,” she says. “I think there might be a lot of pressure in the Eating Disorder community in hearing about intuitive eating that it is the end goal of recovery and it is important to note that it is really individual.”
If you want to learn more about intuitive eating there is more information at www.intuitiveeating.org about each of the ten principles. Remember that everyone is on their own journey and it is important to take what will serve you and leave the rest. Intuitive eating can be a great way to make peace with food and your body; but nothing can replace the advice of a professional who knows your unique case. Check out the NEDIC website to find a service provider in your area.
What is intuitive eating – how to know when you are readyHilary Thomson2020-10-13T21:35:05-04:00