Living With Diabetes and an Eating Disorder: A Personal Reflection

In recognition of World Diabetes Day on November 14, 2021, Erin Fenlon graciously contributed this NIED Blog.


When I was diagnosed with Type 1 diabetes at age 8, I thought the worst part was going to be the needles. After a few months of daily insulin injections and finger pokes, it turned out the needles were the easiest part to adapt to. The hardest part was my new reality around food. In the beginning I followed a specific meal plan and stayed within certain mealtimes and counted my carbohydrates to stay within a certain range. At 8 years old, I could read a nutrition label with ease. Being able to be more flexible with my food didn’t make things simpler, in fact it required more calculations and paying more attention to blood sugars and corrections and exercise. I longed for the days when I could just grab a snack without a second thought.

Then there was the dreaded “food police” which were those that would single me out while eating something like a cupcake with their well-intentioned “Should you be eating that?” For me personally this always brought about feelings of shame and guilt.

With so much direct focus on food and exercise and counting, is it really surprising that so many diabetics end up with an Eating Disorder or disordered eating? Studies show that individuals with Type 1 diabetes are more than two times more likely to develop an Eating Disorder than those without diabetes.

Many people with diabetes and Eating Disorders engage in insulin restriction or omission, which is a behaviour that can cause dangerously high blood sugars and can result in a person going into diabetic ketoacidosis (DKA), which can be fatal. Identifying an Eating Disorder with diabetes can be challenging. There’s often a lot of shame around this symptom, as individuals often label themselves as ‘bad diabetics’. In addition to this, many doctors and endocrinologists simply write off high blood sugars as non-compliance, not recognizing it can be a sign of something else going on. What is really needed is for endocrinologists and ER doctors to be informed of the signs of Eating Disorders in those with diabetes. These signs include high blood sugars, the individual being secretive about their blood sugars, and frequent episodes of DKA. All are indicators that something deeper is going on.

When supporting someone with diabetes and an ED, I think it’s important to recognize diabetics know what we’re doing is dangerous and illogical. Most of us have heard about the terrifying long-term complications that we’re up against…but omitting insulin can become a compulsion or addiction, similar to any other Eating Disorder symptom. Being supportive means being willing to listen, being a cheerleader when needed, and to just be there for the person and not give up on them.

Managing diabetes is already a full-time job with no breaks or vacation. It’s constant planning, counting, adjusting, measuring, and a lot of frustrating trial and error moments. Next there’s recovery, which is also a full-time job and together, all this creates an intimidating challenge. But while being a challenge, recovery from an Eating Disorder while managing diabetes is possible.

It absolutely will not be a perfect journey, blood sugars will still have their up and down moments and urges to engage in ED symptoms will still be present. But slowly, as the confidence builds, it becomes easier to respond to the bad blood sugar days and easier to ignore the ED voice. What can really make a difference is having a team of professionals–including an endocrinologist, dietician, psychiatrist and therapist–who work collaboratively.

Having open communication between not only just the specialists in diabetes and Eating Disorders, but also with the individual in recovery can provide the ideal support needed for recovery.

Living With Diabetes and an Eating Disorder: A Personal Reflection2021-11-11T16:13:10-05:00

UK Animated Video Aims To Help People With Eating Disorders Safely Navigate Social Media

Researchers from Loughborough University in the UK have teamed up with UK Eating Disorder charity Beat to create an animated video that explores how social media affects people with an Eating Disorder.

The short film looks at how social media can be both harmful and helpful, and provides useful advice for those being negatively affected by what they see online and to support recovery.

The video is based on research by Loughborough University’s Dr Paula Saukko in collaboration with Dr Val Mitchell, and Dr Helen Malson, of Eating Disorders Health Integration Team in Bristol, UK. After interviewing 31 people with diverse Eating Disorders during the pandemic – a period that has seen a surge in both social media use and mental health issues – the team then worked with Beat to translate the research findings into a video.

The video gives top tips on how to keep boundaries on social media by unfollowing content on diets, or content that fuel negative thoughts and moderating consumption and interaction with friends by muting or switching off when feeling overwhelmed.

Dr Saukko explains:

“Using the easy multi-media possibilities of social media to chat is vital for keeping in touch and receiving support when not feeling well, especially since Eating Disorders are often socially isolating.

“However, social media encourages users to compare themselves to others in terms of looks or success and foments constant engagement, replies, and insecurities when others are not responding or reacting.”

Colette Mullings, Head of Marketing at Beat, said:

“Social media has been both a help and hindrance for those we support: we know that irresponsible content can be very damaging for those unwell or vulnerable to Eating Disorders, but at the same time we often hear of people benefiting from supportive recovery communities, especially during the pandemic.

“We are eagerly awaiting the results, and hope that the video gives viewers encouragement to continue engaging with positive communities, but also to switch off when needed.”

Dr Saukko’s team, together with Beat, will evaluate the impact of the video in terms of engagement and experience of users.

View the Animated Video

View the full Loughborough University Press Release

Related NIED Blogs:

Social Media and Eating Disorders

Does Media Perpetuate Eating Disorder Stereotypes?

UK Animated Video Aims To Help People With Eating Disorders Safely Navigate Social Media2021-10-04T14:47:24-04:00

Eating Disorders and Substance Abuse

Witnessing a loved one struggling with an Eating Disorder is devastating enough, but when combined with substance use like alcohol or drugs, it becomes catastrophic.

Many individuals affected by an Eating Disorder are also dealing with some form of substance use1. This can occur before, during or after the Eating Disorder. When the substance abuse happens concurrently with an Eating Disorder, it can be a method to further lose weight or numb the psychological torture of the disease. Starting after can be a way to replace the feelings of comfort that the disease gave.

The commonality of both disorders is that they originate in similar areas of the brain, as well as more likely to affect those with decreased self-esteem, depression, anxiety or compulsive behaviour. Concurrent substance abuse can lead to a more severe Eating Disorder and potentially, a more severe impairment1.

Treatment for an Eating Disorder becomes more difficult than it already is when you add substance abuse. In my experience, not only is there a lack of integrated treatment, there are also few, if any, centres that will take in a client who presents with both disorders.

I have witnessed this with my adult daughter who for years (some unknown to me) abused alcohol as a method of dealing with her severe bulimia, anxiety, and obsessive compulsion. She was refused by numerous treatment venues due to their not treating alcohol dependence concurrently with her Eating Disorder.

It was a very difficult combination to witness as a mother and caregiver. You find yourself asking: Which condition is the more urgent to treat? And…Is what I am witnessing driven by the Eating Disorder or the alcohol?

Both conditions are secretive and caused her to lie, hide effects and generally become more depressed, obstinate, and unreasonable when it came to treatment options. The concurrent substance disorder, by nature, made her more unwilling to seek treatment.  She was at a high risk for falls and injury to a body already weak and abused from her Eating Disorder.

She was a shell of herself.

With firm boundaries she has since stopped drinking but still suffers from bulimia. She attends outpatient counselling and is making slow progress.  She is a different person.  Yes, her Eating Disorder symptoms have increased to compensate, but she can deal with them better.

This has been a long journey for her (and us), but one that is easier to plod through without the ugly head of alcohol abuse. We love her and are proud of her and support all her efforts BUT without the influence of alcohol.

1 Woodside, D.B., Garfinkel, P.E., Lin, E., Goering, P., Kaplan, A.S., Goldbloom, D.S., et al. (2001). Comparisons of men with full or partial eating disorders, men without eating disorders, and women with eating disorders in the community. American Journal of Psychiatry, 158(4), 570-4.
The large Ontario Mental Health Survey (Garfinkel et al., 1996; Woodside et al., 2001) referred to in the reference above provided information on co-morbidity in eating disorders where 34% of women and 15% of men with an eating disorder had a lifetime diagnosis of major depression; 37% of men and 51% of women had a lifetime diagnosis of anxiety disorders and 45% of men and 21% of women had a lifetime diagnosis of alcohol dependence.
Eating Disorders and Substance Abuse2021-10-04T14:46:33-04:00

An Eating Disorder with a disability – A story of recovery

There are many factors that go into someone developing an Eating Disorder. For some a disability might be one of the triggers that influence the development of an Eating Disorder and it may even perpetuate the illness.

Mouna Yassine was born with albinism and a visual impairment. She is very nearsighted and with an underdeveloped iris, glasses don’t help. Mouna says she didn’t really notice she was different until she went to school and kids started bullying her because of her pale skin and hair and inability to see properly. “I started to feel kind of that I was just not right. Something was wrong with me,” she remembers. “I felt a lot of lack of control in my life and my surroundings because of being hurt by others so ultimately I went to food. Food was the only thing I felt that I had control over.”

For 13-year-old Mouna the Eating Disorder felt like an escape. No matter what happened at school, like the bullying or feeling like she was an outsider, she could always go back to Eating Disorder behaviours for comfort. “In a way it just took me to a different world other than my reality,” she says.

Mouna started her recovery when she was 16 but says it was really hard to let go of the Eating Disorder because it had been her comfort zone for so long. Her visual impairment also continued to make her feel like an outcast…even in treatment, where everyone was supportive and welcoming. Because of all the bullying she had endured she felt like she had to keep people at a distance to protect herself. “I think that was a huge factor for me while I continued to go in and out of treatment,” she says. “I kept getting sick again and again because I couldn’t connect with everyone.”

It took Mouna 10 years and 12 rounds of treatment to finally open up about her disability, which she believes was a key component to her recovery. “I think a lot of us with disabilities kind of try to push it away in hoping that’s not the reason why I’m sick,” she says. “It’s not the whole reason for me, of course, but it definitely played a huge role.”

Mouna has been in remission from her Eating Disorder for four years now, and is starting her Masters in counselling psychology in the fall. Sometimes those feelings of inadequacy due to her disability come back, but with the skills she has learned in treatment she is able to move past them and protect her recovery. “I keep pushing through and I keep reminding myself, looking at my life now, every time I feel that way, I am able to go on,” she says. “I have accomplished a lot of things despite my visual impairment so checking those facts was really important for me to keep going.”

Mouna would encourage anyone with a disability who is entering treatment to be open to talking about how their disability has affected their life and Eating Disorder. In her experience there may be a lot of fear and shame involved in opening up, but it is an important part of the healing process. “It really opened my eyes up,” she says. “It made me realize that not everyone is going to judge me because of it. There are really good people in the world.”

In recovery it is also very important to have a support system to validate accomplishments and serve as motivation to keep going.  “Let everyone kind of support you and be there for you because that’s the whole point of treatment,” Mouna says. “Tell everyone that that’s how you feel in the moment and work from there.”

Mouna says that for her, it was important to go through a grieving process in terms of her physical limitations; but in the end she came to a point of acceptance with her visual impairment. She is now very focused on living her life to the fullest and not letting her disability or Eating Disorder get in her way. “Eventually you will get to an acceptance point of accepting yourself for who you are and then once that happens, magical things can happen” she says. “You realize that you are so capable of a lot of things.”

An Eating Disorder with a disability – A story of recovery2021-06-08T19:03:25-04:00

Eating Disorders in Pregnancy

Pregnancy and parenting require a great deal of strength, physically, mentally and emotionally. For women with a history of Eating Disorders, these challenges can be amplified as they watch their bodies change and grow.

Katherine McPhee Foster, runner up on season 5 of American Idol, recently became a new mom to a baby boy. She is one example of a woman who came close to experiencing an Eating Disorder relapse during pregnancy.

Katherine McPhee began her struggle with bulimia when she was in middle school. However, after a treatment program and therapy, she became stable for 4-5 years before her pregnancy.

This is why when Katherine began struggling with her body image during her first trimester, it came as a bit of a shock to her. To cope with these feelings, she decided to seek help from her therapist.

Ilene Fishman, board member of the National Eating Disorders Association in the USA and an Eating Disorders clinician, said that it is completely normal for thoughts of disordered eating to resurface during pregnancy as the body changes and one may feel out of control. For someone who has recovered from a past Eating Disorder, this can be especially scary.

For Katherine, her Eating Disorder stemmed from an unhealthy relationship with herself. Psychotherapy helped her develop a healthier relationship with herself which, in turn, helped her  manage her Eating Disorder throughout her pregnancy.

Here are some tips for dealing with disordered eating thoughts during pregnancy:

Seek professional help ASAP. This can be a professional you have had a good experience with in the past or someone entirely new. It is important that you feel you can be completely open and honest with them. If you find they aren’t being sensitive to your concerns, you may want to consider switching providers.

Look at it as an opportunity for growth. We live in a society that constantly challenges us. Moreover, when we age, our bodies naturally change. Overcoming these thoughts of disordered eating that may occur during pregnancy can build resilience.

Remember that there is nothing to be ashamed of when asking for help. It is the best, most courageous thing you can do for yourself and your baby in the long run. Rather than seeing yourself as a failure, look at your challenges as an opportunity for growth that will help you reach your full potential as an individual and a mother.

We have the power to raise the future generation to place their focus on good health rather than weight and physical appearance. Before we can teach our children, we need to be able to embrace these positive attitudes in ourselves.

Happy Mother’s Day!

Eating Disorders in Pregnancy2021-05-08T23:27:49-04:00

Share your Story – Parisa opens up about her Eating Disorder and recovery

Last year NIED launched our ‘Share your Story’ guidelines, meant to teach people with lived experience how to share their recovery journey responsibly.

Since then a few people have reached out to NIED wanting to share their story, including B.C. resident and mom of two, Parisa Zaini. Parisa is originally from Iran and battled her Eating Disorder without much support for many years before she came to Canada and was able to receive specialized help.

Parisa says her fear around food probably started in high school. She remembers her classmates bringing in treats for their weekly social hour and never allowing herself to have any. However, her Eating Disorder didn’t get extremely serious until 1997, after the birth of her second child. “I had a very bad delivery,” she says. “It was a life and death situation and I had PTSD after that.”

Parisa says nobody knew what an Eating Disorder was in Iran. Everyone just thought she was weak and not eating because she wasn’t hungry. In 2002 Parisa came to Canada to stay with her uncle to see what the country was like, because it was likely that they were going to immigrate here. Her brother was living in the U.S. and came to visit for a few days during her trip. Having lived in the U.S. for 15 years, he recognized the signs of an Eating Disorder immediately. When Parisa went back to Iran, her brother phoned her parents and husband to tell them what as going on and how dangerous her situation was. “I didn’t even know what an Eating Disorder was,” Parisa remembers. “I went to the dictionary and looked up what is an Eating Disorder and I looked at it and saw the description and thought – yes- that resembles me.”

Parisa’s family found her a psychiatrist who was originally from Germany who knew about Eating Disorders. But things got so bad that she had to be admitted to a psychiatric ward in Iran for 45 days. She says her time in the hospital was horrible with little to no treatment. “It was very bad,” she says. “I was locking my door all the time because there were people that weren’t in a good situation at night.”

Six months after she was discharged from hospital Parisa moved to Vancouver, B.C. with her family. Thankfully, after she arrived in Canada she was able to get proper treatment for her Eating Disorder. She spent two weeks in an inpatient program at St Paul’s Hospital and continued to get treatment on an outpatient basis for many years after that. She had a counsellor whom she saw weekly and she used workbooks and a meditation practice to bolster her recovery. She says awareness was key in her recovery and realizing the damage that her Eating Disorder was causing in her body motivated her to make changes. “Gradually I became better,” she says. “I think those were the tools that helped me.”

Parisa now considers herself to be about 75 per cent recovered. While she is grateful for her recovery she is cognisant of what her Eating Disorder stole from her while she was sick. She is an academic at heart and her Eating Disorder caused her to drop out of a PhD program at UBC because she was too ill to study. By sharing her story Parisa hopes to keep others from suffering for as long as she did. “I have to talk about it,” she says. “It shouldn’t happen for anybody else.”

To read more about Parisa’s story check out the Share your Story section on our website. If you would like to share your own story check out our Share your Story guidelines. We would love to hear from you!

Share your Story – Parisa opens up about her Eating Disorder and recovery2021-03-05T13:07:51-05:00

Working with a Dietitian – How to Choose One (National Nutrition Month)

Did you know that the entire month of March is Nutrition Month? Every year, Nutrition Month promotes a different theme, and the theme for 2021 is: “Good for you! Dietitians help you find your healthy.” This theme emphasizes that Dietitians consider many different factors when working with clients and providing nutrition support, such as culture, traditions, preferences, and nutritional needs.

Whether or not you have been diagnosed with an Eating Disorder, you might be wondering: how do I choose a Registered Dietitian (RD) who will provide the best support for me (or my loved one)? Kudos to you for having the courage to reach out for help!

As an RD myself who specializes in Disordered Eating/Eating Disorders, I strive to provide client-centered care and nutrition counselling that is most appropriate based on the needs of the client. I continue to expand my knowledge in the field of nutrition and different client needs every day.

That being said, here are a few things to consider when choosing an RD:

What level of support do you need, and how far along are you in your recovery journey? This will ultimately influence whether you would benefit from working with an RD alone, or in combination with an interdisciplinary team comprising different healthcare practitioners (e.g. doctor, psychologist, social worker, etc.). Working with a team provides additional layers of support whereby an RD plays an integral role.

Does the RD use a weight-inclusive, anti-diet approach, and are they confident and well-informed to provide nutrition counselling services in the area of Eating Disorders? Are they compassionate towards you? Do you feel comfortable with them? While these points may seem obvious, the type of approach that they use, and your comfort level will ultimately play a big role in recovery.

Do you have other health conditions or nutritional concerns that need to be addressed (i.e. IBS, diabetes, sports nutrition for athletes)? RDs specialize in many different areas, which is why they typically have a select few niches in which they are very well-versed.

Are there financial constraints to consider? RDs working in private practice require insurance or paying directly out of pocket. If financially feasible, the benefits of choosing private practice are that clients receive individual counselling, can self-refer, and wait times are typically shorter compared to publicly funded treatment programs. Public programs are offered in hospitals and community health centers and can include individual and group counselling, whether it be through day programs or residential programs, depending on the type of treatment. While public programs are free, they typically require referral from a healthcare professional and may include longer wait times.

Last – but certainly not least – is the RD culturally competent?  A one-size-fits-all approach to treatment is like trying to use the same size collar on all types of dogs and expecting the fit to be the same. It simply does not work, as everyone comes from different ethnic backgrounds and cultural experiences, which influence our beliefs and behaviours. It is important that this be considered as part of the treatment plan.

It was philosopher Ralph Waldo Emerson who stated that, “The first wealth is health.” Are you ready to take the next step and find your healthy?

Check out the Dietitians of Canada website to find an RD in your area.

Working with a Dietitian – How to Choose One (National Nutrition Month)2021-03-03T20:17:48-05:00

More representation needed in Eating Disorder recovery spaces

Eating Disorders have historically been pegged as a mental illness that affects affluent, white women and girls. One of the first high profile cases of Anorexia Nervosa was Karen Carpenter, a white American singer who died of the illness in 1983. Since then, there have been many other famous white females who have admitted to Eating Disorder behaviours publicly (think Lady Gaga, Taylor Swift and Portia de Rossi).

While these women have definitely raised the profile of Eating Disorders across the globe, their stories promote that same age-old myth – that Eating Disorders affect white females and no one else.

Julissa Minaya is a 16-year-old mixed race girl from Dallas, Texas who is currently in recovery from an Eating Disorder that started when she was just a child. She was heavily involved in dancing, acting and figure-skating when she was younger, all of which put an immense focus on her body. “My acting coach told me that I would probably be more successful in the career if I was smaller,” she remembers. “So I went on my first diet when I was like 10 or 11 and then it just spiraled from there.”

Julissa says that going to private school in Texas also contributed to the onset and continuation of her illness. “The schools that I’ve gone to have been predominately white, so I was with a bunch of girls that didn’t look like me,” she says. “They were all really thin and tall and I wasn’t.”

When Julissa started her recovery about a year ago, she relied heavily on social media for inspiration. Unfortunately, she couldn’t find anyone in the online Eating Disorder recovery community who looked like her. “I definitely didn’t see a lot of representation, especially being mixed because I’m Dominican, Puerto Rican, Black and German,” she says. “A lot of the time with my identities I feel kind of lost, especially growing up being surrounded by so many white people and so that kind of followed me through the Instagram community. I didn’t see anyone who looked like me or anyone who was a person of colour.”

Instead of giving up Julissa made the brave decision to start her own Instagram account to share her journey through recovery as a member of the BIPOC community. “I think that my voice matters, especially bringing in the perspective of a person of colour dealing with an Eating Disorder and having one so young,” she says. “So, I definitely wanted to share a perspective that is not like everyone else’s.”

Julissa hopes that her account will help other people of colour feel more seen and heard in the Eating Disorder recovery space. She says that if she had seen more representation it would have definitely helped push her towards recovery. “My recovery probably would have started a little sooner or made me feel less alone because when I was following Instagram accounts and watching YouTube videos it was all people that just looked the same,” she says. “I just kind of felt left out because I was like, oh, I don’t identify with these people past the fact that we all have Eating Disorders.”

Julissa believes that the fact that there aren’t as many people of colour talking about mental illness online is a societal issue. As a society we are more receptive to straight sized white females talking about Eating Disorders than fat people, men or people from the BIPOC or LGBTQ+ community. She says that within BIPOC community mental illness is something that isn’t often talked about, even though statistics show that they are disproportionately affected the most. “It’s definitely an issue within our communities and within society,” she says.

Julissa’s experience putting herself out there online has been mainly positive and she is happy that she is able to be a voice in the Eating Disorder recovery space for the BIPOC community. “I love being able to know that my story could be helping at least one person,” she says.

You can find Julissa and learn more about her story on Instagram under julissas.recovery.

Are you a member of the BIPOC community? How do you feel that the Eating Disorder recovery space can better support you in your own recovery?

More representation needed in Eating Disorder recovery spaces2021-02-16T21:28:40-05:00

EDAW 2021: Eating Disorders Can’t Afford to Wait – What Happened While We Waited

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.

EDAW 2021: Eating Disorders Can’t Afford to Wait – What Happened While We Waited2021-03-03T20:19:04-05:00

Recovery is possible.

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.”

Recovery is possible.2021-01-19T20:32:02-05:00
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