By Melodie McCullough
Six years ago Lisa Burns took her then almost-17-year-old daughter, possibly suffering with anorexia, to the family doctor. The advice given by the doctor upon diagnosing an eating disorder?
“Send her to Africa, so she will see what starving children really look like.”
Burns knew it was time to get a new doctor.
“It’s unfortunate,” said Burns. “But that’s one of the old, stereotypical ideas around eating disorders — that they affect only white, middle class girls, who are pretty and social and it’s just one more thing for them to try on for size. This couldn’t be further from the truth.”
Burns wants people to know an eating disorder (ED) is a serious and complex biological and brain-based mental illness with no boundaries, affecting all ages, ethnicities, sizes, weights, abilities, sexual orientations, genders, cultures, and socio-economic levels. It affects one in five women and girls and one in 10 men and boys. The number of boys/men may be significantly higher, however — due to the stigma around eating disorders many men are still highly reluctant to come forward.
And someone with an eating disorder does not start with the aim to stop eating. While negative media images may be an environmental trigger and one of many factors – like dieting – that contribute to the illness, they are definitely not a cause. One must be genetically pre-disposed.
Anoxeria nervosa, bulimia nervosa and binge-eating are the most common types of eating disorders. (See below for definitions)
Lisa Burns knows a few other things.
“Eating disorders are treatable. Recovery is possible and so, so worth it,” she said in an interview. “The genetic, biologic link cannot be ignored. Families and parenting are NOT to blame! Know that support is available, even when treatment isn’t.”
Burns, 51, of Orangeville, Ontario, is now an eating disorder advocate. She’s one of the co-founders of Eating Disorder Parent Support, an online peer-to-peer facebook support group for those caring for a loved one with an eating disorder. She was also on the steering committee of the inaugural World Eating Disorder Action Day in 2016 and was its outreach team lead for Canada.
But before all that came about and before she knew so much of what she now knows, she travelled a long and painful journey to, literally, save her daughter’s life.
On Sept. 17, 2011, her daughter -we’ll call her Mary — one month and one day shy of her 17th birthday was diagnosed with anorexia, binge purge subtype. She had lost one third of her body weight.
In both of her parents’ families there is much history of mental health illness. In retrospect there were signs of mental health illness going back to when Mary was eight or nine years old, but an eating disorder was never on the radar, said Burns.
The initial treatment advice was “make her eat”. Easy, right?
“Except she did not eat. For months and months, she did not eat. She would sit at the table for endless hours not touching a single piece of food,” Burns said.
At the same time, a social worker explained to Burns and her husband that “they” were the problem. They were not allowing her to mature and be independent and they needed to back away completely, they were told. If not, Mary would leave home and they would never see her again.
For months, Burns navigated through the illness as it morphed from anorexia to bulimia and back again. They tried a day hospital program, but with virtually no support for themselves on how to care for her, Mary was removed after 40 days because she was worsening and suicidal. She remained adamant that she was not ill, that she was fine, fighting tooth and nail their efforts to get her to eat.
Eating disorders are not about a fear of being fat. They may begin that way, but to the souls who suffer from this — all of which are comprised of different body types and weights — the starving, the bingeing, the purging are the weapons with which we fight off the demons of inadequacy who grab us by the throat daily, look into our vacant eyes, and tell us we are nothing until we’ve proven that we are the conquerors of our destinies, which sadly, revolves around an ability to control a disorder meant, in the end, to kill us.
When Mary turned 18 she began receiving Ontario Disability Support Program benefits, which gave her financial independence. Now she was eating, but continued to deteriorate, bingeing and purging hundreds of dollars a week in groceries.
Mary was too ill* to understand how ill she was, said Burns, but she knew that restricting her diet calmed her anxiety and gave her peace. Bingeing and purging was like a drug that numbed the depression and the feelings that hurt so much.
(*Anosognosia is the condition that does not allow the affected individual to understand they are ill and affects almost every single person who has an eating disorder, https://www.merriam-webster.com/medical/anosognosia This condition begins to change with weight restoration and on-going therapeutic support by highly trained clinicians.)
By April, 2013, Burns and her husband had learned about Family Based Therapy. But after one day of following a strict regimen of eating meals together and monitoring Mary’s behaviour, Mary packed up and left.
That was three years ago. At one point, Mary got a bed at an inpatient treatment centre, but was discharged after four days for “non-compliance”. Burns made the tough decision that she could not take her back if she did not follow the dietary/therapeutic rules of the house.
Burns says Mary, now 22, is doing better, and “still trying”, although with no formal treatment. A placement with a community agency has been beneficial. Their once fragmented relationship has, fortunately, improved.
But Burns has strong words about ED treatment parent supports in Ontario. She said there are only approximately 100 beds in Canada dedicated to eating disorders, and most of those are designated for adolescents, leaving adults with virtually no services. She also said, “waiting lists are horrifyingly long.”
“The government spends millions of dollars annually to send our most-ill patients to the United States. However, when they come home there is virtually no support, so the risk of immediate relapse is high.”
“Eating disorders affect the entire family,” explained Burns. “Imagine you are told your child has a very real, life-threatening illness. Then imagine you are told that treatment is largely up to you. Imagine you are told to find a treatment team by yourself. Imagine that most members on that team have almost zero education and work experience and whose knowledge about the illness — that has the potential to end your child’d life in the most horrific way imaginable — have a basic ABC after-school tv-special understanding of said illness.”
She remembers, at one point, with Mary lying on the bathroom floor begging to die, she called on the phone for professional help, only to be asked, “Have you tried taking away her cell phone?” This was the only therapeutic advice she received in a moment of extreme crisis.
“It falls on the caring parents’ shoulders to help their child . That’s what we’re up against. It’s also very hard on finances.”
“Families need and deserve to be supported fully by educated professionals. Treatment environments (when they work) will not send your child home in recovery, but the foundation is built and the rest of the work must be done at home. Patient carers must have access to training and be given information by educated professionals and/or those who walk in your shoes so they can do that work.”
Burns said she didn’t set out to become an activist or advocate, but as someone who has known “far too many” girls, boys, men and women who have died from EDs, her worst fear is that someone will walk in her shoes, unsupported, uneducated, and unheard.
“I was fortunate to find on-line support, eventually. As my education grew, understanding of what other carers needed propelled me and several others to launch Eating Disorder Parent Support in the winter of 2014. EDPS is now 1183 carers strong from all over the world. We offer a support network that is virtual 24/7. EDPS supports ‘evidenced based treatment’, and we stand virtually, and in person, with carers at all stages of navigating the illness.”
Burns’ hope is that no other family will ever be told to ‘send your child to Africa.’
Nine Truths about Eating Disorders
Truth #1: You can’t tell by looking at someone whether they have an eating disorder.
Truth #2: Families are not to blame.
Truth #3: Families can be the patients’ best allies in treatment.
Truth #4: Eating disorders are not choices, but serious biologically-influenced mental illnesses.
Truth #5: Eating disorders affect people of all genders, ages, races, ethnicities, sexual orientations, and socioeconomic statuses.
Truth #6: Eating disorders carry an increased risk for both suicide and physical/medical complications.
Truth #7: Genes play a role in eating disorders, but environment also influences their development.
Truth #8: Genes are not destiny when it comes to eating disorders.
Truth #9: Full recovery from an eating disorder is possible.
Definitions from NEDIC
A binge-eating episode is characterized by the consumption of an unusually large amount of food during a relatively short period of time, and feeling out of control over what and how much is eaten and when to stop.
Anorexia Nervosa typically begins around puberty, but can occur at any age. It is a life threatening mental illness characterized by, over a period of at least three months, by: Persistent behaviours that interfere with maintaining an adequate weight for health. Typically, these behaviours include: restricting food, compensating for food intake through intense exercise, and/or purging through self-induced vomiting or misuse of medications like laxatives, diuretics, enemas, or insulin; a powerful fear of gaining weight or becoming fat; disturbance in how the person experiences their weight and shape; the person does not fully appreciate the seriousness of their condition. Anorexia is linked with cardiac arrest, suicidality, and other causes of death.
Bulimia Nervosa is a life threatening mental illness characterized by: Recurring episodes of food restriction followed by binge eating. Recurring behaviours that follow bingeing, which are meant to “purge” the body of food and prevent weight gain. These behaviours can include excessive exercise, fasting or severe restriction, self-induced vomiting, and misuse of laxatives, diuretics, or enemas.
NEDIC Helpline open until 5 p.m. EST. Toll FREE: 1-866-633-4220. Toronto: 416-340-4156.
Eating Disorder Parent Support – https://www.facebook.com/groups/EatingDisorderParentSupport.E/
Must watch videos:
Laura Hill Ted Talk: Eating Disorders from The Inside Out https://www.youtube.com/watch?v=UEysOExcwrE
Eva Musby: Help Your Child Eat With Trust Not Logic: The Bungee Jump https://www.youtube.com/watch?v=2O9nZAWCkLc
Eating Disorders and Parenting in 2015
Ten Things I Wish Physicians Would Know About Eating Disorders
Ten Things Parents Wish Educators Knew About Eating Disorders
Families Empowered and Supporting Eating Disorder Treatment (F.E.A.S.T.) www.feast-ed.org
F.E.A.S.T. Around the Dinner Table Forum
Dr. Sarah Ravin Recovery Timeline
Throwing Starfish Across The Sea by Laura Collins and Charlotte Bevan (short, easy-to-read primer)
Brave Girl Eating by Harriet Brown (visceral descriptions of the disorder and the fight to beat it)
Eating with your Anorexic by Laura Collins
Skills Based Learning for Caring for a Loved One with an Eating Disorder by Janet
Help your Teenager Beat an Eating Disorder by James Lock and Daniel LaGrange
Anorexia and other Eating Disorders: How to help your child eat well and be well by Eva Musby
https://www.youtube.com/watch?v=YrgrIts5WV8 The 9 Truths About Eating Disorders