What it feels like: Living with an eating disorder

Thirty-nine year old Anne lost her children because of an eating disorder. Here's what she wants you to know.

Vanessa Hrvatin April 14, 2021
anorexia nervosa

Anne shares her story about living with an eating disorder. Getty

Warning: This article discusses in detail the real-life experience of a person living with an eating disorder, which some people might find difficult to read.  

Anne* still remembers the name of her elementary school teacher who peered into her lunch pail, the food inside sitting untouched. He said nothing, but that night Anne’s mother took her to the grocery store for the first time and offered to buy her anything she wanted. Anne remembers walking up and down the grocery store aisle and picking nothing — there was nothing she wanted to eat. It wasn’t until she was 28 that she was diagnosed with anorexia nervosa.

One million Canadians are thought to be living with an eating disorder, although this is likely an underestimate as many people struggle for years without receiving a diagnosis or treatment, and there is no national database tracking these disorders. The term itself encompasses many different diagnoses including anorexia nervosa, bulimia, binge eating disorder and avoidant/restrictive food intake disorder.

Healthing recently explored the eating disorders landscape in Canada, which is underfunded, under-resourced and difficult for many people to navigate.

Anne shares her story about what it’s been like to be a 39-year-old woman living with anorexia nervosa. Like many areas of mental health, eating disorders are heavily stigmatized, so her name has been changed to protect her privacy.

This interview has been edited for length and clarity.

 What is your earliest memory of restricting food?
The earliest memory I have of restricting is from when I was eight years old. I just wouldn’t eat anything that my mother was sending to school and the only thing I would eat was saltine crackers.

When were you diagnosed?
I was diagnosed with anorexia purge subtype in May 2010 when I was 28 years old, but I still thought it was just normal behaviour. I was in denial until I had my first heart attack in June 2010. At that point I was scared because what I thought I had control over I realized had control over me. My eating disorder had compromised my job, my family, my children — it compromised every single aspect of my life that I thought I had control over.

The symptoms of eating disorders often morph over time. I had been restricting food since I was a kid, but after I had my second son at 24, I also started to purge anything I’d eat.

I’ve also been diagnosed with complex post-traumatic stress disorder, major depressive disorder and general anxiety disorder.

What has your treatment experience been like?
My first time in treatment was in September 2010 and it was in British Columbia. I’ve been in treatment every single year since. I would sometimes try to get my name on a waitlist for outpatient support, but the waitlist is so long that by the time my name came up, I’d be too sick. If I had been able to access care sooner, it might not have gotten to that point. I think people think you can just go to the hospital and get help, but you can’t.

I would love it if there was an option for me to get help in the community. Obviously inpatient treatment (where you’re admitted to an eating disorders program in hospital) isn’t working. I just spent two weeks in treatment and seven out of the ten of us in the program knew each other because we’ve been in treatment so many times. It would be so much better if there was a place where we could drop in and get support with meals, or if the groups that are run during inpatient care (like meal planning groups and counselling) were offered in the community. Whenever I’m in a program, I do what I’m told and my symptoms go away, so sure I can do it in hospital, but I have yet to apply what I’ve learned in hospital to my daily life.

What does it feel like when you relapse after leaving treatment?
I go into denial. Every time I leave treatment I feel better, I’m happier and my brain feels like it’s functioning better. But then as soon as I leave, I start thinking I’m only going to lose 10 pounds and then I think okay I’m only going to lose five more pounds and the number keeps going down to the point where I’m like, ‘how did I get here?’

What does a day in your life look like?
I haven’t worked since June 2010 which is when I had my first heart attack (Anne went on to have two more in 2019) and my kids were taken away a few years ago by Children’s Aid. Right now, I walk for four hours a day. I normally do six hours, but I’m so tired lately that I can only get in four hours. It’s really about the number for me, I have to hit 10 km a day. I guess you could call it a requirement of my eating disorder.

After walking I’ll come home and nap or watch some TV. I’m also volunteering three times a week in the afternoons. At night I’ll watch some more TV, make a small meal, purge the meal and then go to bed.

What are some of your coping strategies ?
I sew masks and bring them to local schools. The days that I do my volunteering go by fast and I have less symptoms. When I volunteer, I feel like I’m helping out — like I’m actually contributing and that I’m part of the world. Sometimes I make meals for a neighbour … stuff like that to make me feel like I am actually part of something.

What do you wish people understood about eating disorders?
I really want people to understand that eating disorders don’t have a “look.” Pretty much anyone who thinks of eating disorders thinks of anorexia — they don’t consider any of the other disordered eating that is out there. There’s also this perception that with anorexia you have to be emaciated all the time, which isn’t true. Before my diagnosis, I hid my eating disorder from my doctor for five years.

We know eating disorders are a mental illness. What would you say to people who still mistakenly see them as a choice?
It’s easy to look at this as a choice, but the reality is that it’s torment. Your brain is yelling at you 24/7 — even if you’re starving and want to eat so badly — your brain is yelling at you that you can’t eat anything. It seems like it’s an easy fix to just eat something, but it’s the mental illness part that makes this not easy. People sometimes think it’s a phase or a diet gone wrong, but it’s really just a coping mechanism and for me, it started as a way to cope with the trauma I experienced as a child.


 

What advice would you give to people who are struggling with an eating disorder?
I think I would say that the first time in treatment is your best bet. I tell people they need to finish school and date whoever they want to date, have kids if they want to, get married if they want to, travel the world. You don’t’ get any of that with your eating disorder. I’ve lost everything because of mine. 

What would you say to family and friends who suspect a loved one has an eating disorder? 
Don’t give in to the eating disorder voice. When your loved one gets angry it’s not them, it’s their eating disorder lashing out, so don’t take it personally and don’t stop trying to get them help. 

If you or someone you know is struggling with an eating disorder, you can visit the National Eating Disorder Information Centre, which has information on where to find help. You can also find information by visiting the National Initiative for Eating Disorders.

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