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/

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.”

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.

Recovery from an Eating Disorder is hard. It takes a lot of dedication, perseverance and, often, a team of professionals. This can typically include psychiatrists, psychologists, dietitians, nurses, social workers and even occupational therapists who all have a unique role to play in guiding a person on the road to recovery.

Many of these professionals work within the confines of scheduled appointments. While these appointments are integral, the vast majority of the recovery process happens in everyday life, beyond the four walls of a therapists of dietitian’s office. In fact, this is when many people in recovery need the most support. It is one thing to agree to a plan in a one hour scheduled appointment, but completely another to actual follow through with the stressors and pressures of everyday life.

In recent years a new field of Eating Disorder support professionals has opened up to fill that gap. Mia Findlay is an accredited Eating Disorder Recovery Coach based out of Sydney, Australia. She suffered with an Eating Disorder for six years before starting her recovery in 2013 and has now been fully recovered for six years. Findlay started off as an advocate, using her very successful YouTube channel called, What Mia Did Next, to raise awareness for Eating Disorders, speak out against diet culture and promote body neutrality and acceptance. Through her channel she also became an ambassador for Australia’s leading Eating Disorder charity, The Butterfly Foundation.

Findlay says that it was through her work with the Butterfly Foundation that she found her way into the recovery coaching field. After speaking on a panel, a couple of mental health professionals asked her if she worked in the recovery space for a living. At the time Findlay was working and finance and was finding her passion and drive in her advocacy work, never thinking that she would be able to make it a career. “They made me aware that coaching had opened up as a field, much like in sobriety and addiction treatment,” she says. “That’s been a really important part of that model for so long, and it’s only recently been adopted in Eating Disorder treatment.”

Findlay did some research, and, after doing some general coaching courses found the Carolyn Costin Institute coaching certification, which focused completely on training Eating Disorder coaches. “It was incredible, and I would highly recommend it to anyone wanting to go into the coaching field,” she says. “I just loved the concept of it because it was using my lived experience for something really constructive.”

Findlay has now been running her business as a recovery coach, called Beyond Body (https://www.beyondbodycoach.com/), for 2.5 years. She says she often works within a treatment team, usually with a psychologist and/or dietitian. “I’m kind of like the last step in the chain,” she says. “[My clients] are given all this great direction and information and understanding of their eating disorder and we actually turn that into actionable goals.”

Findlay sees clients on a weekly basis where they make very specific and flexible goals to help them move forward on their path to recovery. For example, if a client is consistently pushing off eating breakfast in the morning, she will help them set a goal to have breakfast 40-60 minutes after they wake up in the morning and implement it 3-5 days in the week. “It’s really flexible. We want to get away from that black or white thinking and that perfectionistic type of goal setting,” she says. “It’s more about trying to learn and get data out of how their eating disorder responds when we set these goals and we’re working on them.”

Findlay also encourages her clients to reach out to her via email of WhatsApp if they are having a hard time between sessions. “We’re strategizing in real time when difficulties pop up,” she says. For clients she sees in person, she also helps with things like grocery shopping, clothes shopping, going out to meals and cooking at home. “We’re trying to help them recover in the real world,” she says. “It’s really working on their resilience and helping them see that they can survive things that feel impossible to do.”

Findlay’s approach is very specific to each of her clients, who often have very different needs. Some may need to work on things like calorie counting and getting off the scales, while others may be struggling more with their relationship with exercise and movement. “There’s not like a formula or a set program or anything,” she says, noting that she does use the 8 Keys to Recovery from an Eating Disorder by Carolyn Costin with all her clients.

As beneficial as recovery coaching can be Findlay admits that they whole coaching field can be a little bit of the “Wild West” because it is not a protected title like other healthcare professionals. Firstly, she would recommend people make sure that any coach they hire is actually fully recovered. “I even had one yesterday sent to me who is actively recovering and also coaching, which I just don’t think is a responsible avenue to take,” she says. “It’s really important that you are able to demonstrate what [your clients] are aiming for.”

From Findlay’s perspective another important thing to look for in a recovery coach is proper accreditation. She says there is a huge difference between having a general coaching certification and one that is specific to Eating Disorders. “The difference in your preparedness, quality of your coaching and yourself as a professional is just worlds apart,” she says.

Findlay says being able to use her lived experience to help others with Eating Disorders is one of the most rewarding things about being a recovery coach. “The fact that I am able to help other people out of the same trap feels almost like a big middle finger to my Eating Disorder,” she says. “To have connection and purpose come out of that is incredible.”

Like many recovery coaches Findlay works with people all over the world. Sarah Rzemieniak (https://sarahrzemieniak.com/) is another Carolyn Costin Institute-certified Eating Disorder recovery coach, based out of Vancouver, Canada who also works with clients worldwide. Meg McCabe (http://www.meg-mccabe.com) is another a Carolyn Costin-trained Eating Disorder recovery coach, based out of Denver, Colorado.

Recovery coaching is still an up and coming field but if you are looking for a coach be sure to check out Findlay, Rzemieniak or McCabe’s websites for more information about what they offer.

Body image is a huge issue for people with Eating Disorders, especially at this time of year. Nothing is more terrifying that spending the day at the beach in a bathing suit or wearing shorts and a tank top to a family BBQ when you are fighting against your body.

Sarah K. knows these anxieties all too well. For eight years she struggled with anorexia which led her to have a deep hatred of her body. What’s more is that for six of those years no one knew because she didn’t fit the typical image of anorexia. “Though my body was suffering as result of my behaviours, my body didn’t drop below the weight identified by the DSM-IV,” she says. She eventually reached out for help and was admitted to Homewood Health Centre for treatment. “Homewood saved my life,” she says.

Sarah is now in solid recovery and has created a very popular Instagram account (sar.thrives) where she talks about Eating Disorder recovery, body acceptance and self love. She hopes that being vulnerable on social media will keep other girls from living with a devastating Eating Disorder as long as she did. Here are the top five things that has helped Sarah in her journey to body acceptance.

Redefine your values

Sarah says that a big part of her recovery and body acceptance journey was identifying her values apart from her Eating Disorder. Her Eating Disorder made her believe that if she could make herself more appealing to look at, she would be more successful. Once she started aligning her actions to her true values, she saw that her body had nothing to do with living a fulfilling and happy life. “I started being successful and it had nothing to do with what I looked like,” she says.

Radical Acceptance and Self Compassion

Radical acceptance is a dialectical behaviour therapy tool that was essential in Sarah’s body acceptance journey. She says she had to radically accept what her body looked like and realize that most people struggle to an extent with body image. The key is to be compassionate with yourself. You don’t have to love your body all the time. In fact, that is unrealistic. Sarah recommends the work of self compassion guru Kristin Neff who wrote a book on the subject and also offers guided meditations, self compassion exercises and tips for practice on her website. “[Body] acceptance isn’t far off once you consistently practice these things,” Sarah says.

Dress for the weather

Sarah says her body acceptance journey started in treatment. She was there over the summer so she would purposefully wear summer attire like shorts, dresses and t-shirts to get herself used to dressing her body appropriately. She also says it was very important for her to wear clothes that felt comfortable, which meant not covering up her body in big sweaters that would make her hot and cause discomfort. “I challenged the notion of what I thought I couldn’t wear,” she remembers. “It catapulted me into a region where I feel more comfortable with my body and myself.”

Notice different bodies around you

Sarah says that for a large part of her Eating Disorder she only noticed people who were smaller than her. A useful exercise that she used in treatment was purposefully noticing everyone around her when she was in public. “I started to realize there is more than one body type,” she says.

Surrounding yourself with all different bodies is also important online.  Make sure you are following a variety of people and unfollow those who make you feel bad. Be an active participant in your recovery and mute ads and people that don’t serve you. The more you fill up your feed with positive messages and body diversity the more you will be bolstering your own body acceptance journey.

Engage in life

Sarah says one of the key pieces of her body acceptance journey was not letting her bad body image stop her from engaging in life. No matter how hard it is, go to the beach, family BBQ or friend’s birthday. She says the more she engaged in life the less she thought about her body and the less important it became. “Go all in with body image. Do the opposite of what the ED wants you to do,” she says, “You can’t grow without discomfort and the more uncomfortable you feel the more growing you are doing.”

July 24 is National Self Care Day and here at NIED we couldn’t let it go by without talking about this important part of recovery. Self care can be challenging for anyone with mental illness, but we know that it is particularly hard for those with Eating Disorders.

Many people see self care as doing things like putting on a face mask or getting a pedicure. While these things definitely fall into the category of self care, there are lots of other ways that you can take care of yourself without breaking out a gooey face mask or the nail polish. Here are 5 ways to practice self care that are accessible to anyone with an Eating Disorder.

Have a shower or bath

This may sound simple but those who struggle with depression (like many with Eating Disorders do) it can be a real challenge to keep up with their personal hygiene. Simply stepping into the shower can take a huge amount of effort for someone who is finding it hard to get out of bed in the morning. Taking a shower or bath when you are feeling down may not fix everything, but you would be surprised how much better you feel with freshly washed hair. If you are struggling with bathing because you are avoiding your body, consider taking a bath with bubbles. That way you can still bathe without being focused on how your body looks.

Take your medication

This is another one that may sound simple but can be incredibly hard to do when you are in the depths of an Eating Disorder. It is not uncommon for people with Eating Disorders to stop taking medication that has been prescribed to them when they are feeling low. If this is your pattern there is nothing to be ashamed of. However, not taking your medication can have uncomfortable side effects that can seriously affect your mental and physical health. People who go on and off their meds regularly often experience huge highs and lows which is not good for anyone’s wellbeing. Committing to taking your medication as prescribed is an act of self care and it definitely can be achieved if you put your mind to it.

Accept help

Accepting help in itself is an act of self care for those with Eating Disorders. People with Eating Disorders often tend to push people away and refuse treatment because they don’t believe they are sick enough or deserve the care of others. If a friend, family member or treatment professional is offering their support, take it no matter how hard it is. Allowing yourself to be vulnerable and accept help from those around you is the most caring act you can do for yourself, especially if you are just starting out on your recovery journey. Eating Disorders thrive in secrecy and the more you can accept help from those around you the better it is. Recovery still won’t be easy, but having support is one of the keys to recovery and it is the ultimate act of self care to let people in.

Practice self compassion

This is a tip you will want to apply to all aspects of your recovery and life. People with Eating Disorders are often perfectionists and can be very rigid in the goals they set for themselves. There is no such thing as a perfect way to recover and realizing that is an act of self care. Be compassionate with yourself and don’t beat yourself up if you feel like you messed up. Recovery is hard and holding yourself to an impossible standard will only make it more challenging. Allow yourself to breathe, rest and take breaks. Recovery is a marathon, not a sprint and showing yourself care and compassion along the way will only bolster your recovery in the long run.

Find what works for you

When it comes to the more typical acts of self care, find what works for you. You don’t have to throw yourself a spa day if that is not what makes you feel good. There are so many options to choose from when it comes to self care – it is really about finding what feels good to you (outside of your Eating Disorder). Simple things like watching a TV show that you like or reading a good book are great options. Spending time with a good friend or playing with your dog in the backyard are also possibilities. A lot of times people with Eating Disorders have fallen out of touch with the things that bring them joy because they have been wrapped up in the Eating Disorder for so long. Take some time to play around with it. That exploration can be self care in itself.