Starving for help in Squamish

Eating disorder sufferers say the wait for care is too long, help is too far away

Squamish’s Rachel Anne Farquharson, 35, has battled for almost 20 years with an eating disorder that has at times brought her to the brink.

Farquharson and other local eating disorder sufferers are advocating for more treatment options in Squamish.

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They say that it is particularly hard in the district to access comprehensive, adequate, publicly funded care.

To get that care, you have to travel outside the district, they say, which is a barrier to recovery. They want to make things better for others in Squamish who come after them.

“The thing about eating disorders is that it does encourage secrecy because you feel shame. The way to dismantle that is to have good [local] healthcare providers because what they do teach you is to have compassion for yourself,” Farquharson told The Chief.

Despite her anorexia, Farquharson has earned two undergraduate and two graduate degrees, and currently works as an architect.

Anorexia is a complex mental illness that, for Farquharson, manifested after a series of traumas including her father’s death by suicide and her stepfather’s subsequent sudden death from a heart attack.

She recalls when she was 17 years old living at her family home in Cobourg, Ontario and her sister — a nurse — called the ambulance to come and get her.

“I was sitting upstairs writing an essay,” she recalled. “I was like, ‘I am fine. I am fine.’ My heartbeat was 23 beats per minute. I should have been dead.”

But instead of realizing the situation she was in, Farquharson went to the kitchen and started shoving food into her mouth to prove she was OK.

Her sister told her this wouldn’t cut it.

Farquharson was admitted to the cardiac ward. She later had a three-month in-patient stay to treat her anorexia.

Years later, Farquharson moved to Squamish and has continued to battle the illness off and on.

She spent time in Squamish General Hospital in April due to her eating disorder.

Though she describes herself as healthy and happy now, she goes to about seven different medical appointments per week.

“The silver lining is that when you learn that you want to live, you want to live,” she said, of her determination to get well.

She stresses great people work in the eating disorder field and she has had supportive counsellors in Squamish and received invaluable help from the Howe Sound Women’s Centre, from her husband and others.

But she said the months-long wait times to be assessed or to move on to in-patient and out-patient care, and that those options are located outside of Squamish, make things harder than they need to be for people who are already suffering.

“It would be... wonderful for us to conglomerate these things into a [Squamish] clinic and a centre so that women in need, men in need, can get some help,” Farquharson said.

The other patients who reached out to The Chief agreed waits and distance are issues.

“It is great if you have access to transportation and the financial means to take a day off work to get down there and pay for fuel and that kind of thing. But that isn’t the reality for everyone,” a Squamish resident said.

The Chief is protecting this person’s identity due to potential repercussions at their work.

This local has been on a wait list for more intensive care through St. Paul’s Hospital since July, and later in the summer was hospitalized for a stretch to stabilize them in the interim.

“We have some incredible healthcare providers in Squamish, but they can’t make something from nothing. The onus is on both the province and our regional health authority to ensure that this stops. Had I not been given the luxury of paid medical leave from work, along with friends who stepped in and fought for me when I couldn’t, this newspaper would surely have published my obituary by now.”

Stephanie’s story

Squamish’s Stephanie Stewart is also funnelling years of struggling with an eating disorder into advocacy.

“I wish I had somebody like this,” she said, referring to speaking out about her battle.

“The stigma needs to end.”

Stewart, 29, traces her anorexia back to when she was seven years old and her parents were assaulted in Squamish. She wasn’t there during the assault and her parents were OK, but as an only child who has always been very close to her parents, she was very shaken by the incident.

It made her feel out of control, she said, but she could control her intake of food.

She can’t remember having a healthy relationship with eating since then.

She was the sickest at 17 after her grandpa died.

“I struggled severely after that,” she said.

She moved to England at 23 and had her two children there.

After her son, she said she realized she couldn’t carry on with disordered eating and sought help. But she found support insufficient or non-existent overseas.

And she acknowledges on her own it was hard to give up the way she approached food for so long.

“I almost felt like it was the only thing I was good at. I was good at keeping that secret. I was good at keeping the calories low or not eating at all. That was the only thing I was good at it.”

She and her family returned to Squamish a year ago and she sought help once again. She’s had some great assistance in Squamish, but too speaks of the lack of consistent resources close by. The day Stewart met with The Chief, she was supposed to be at an outpatient support group in Vancouver where they meet and share a meal, but she couldn’t make it due to the heavy snow. It was the second session she missed due to road conditions on the Sea to Sky Highway.

“It doesn’t make sense,” she said. “I can’t imagine if I lived in Pemberton.”

The lack of adequate resources sends the message to those suffering that they are alone, when they aren’t.

“Or at least that is how I felt struggling with it.... I thought it must just be a ‘me’ problem.”

Stewart said she understands that all the same resources that are in Vancouver can’t be set up in Squamish, but says something more has to be done.

“We need to start taking steps to get this sorted, because it is leaving a lot of vulnerable people feeling very isolated and very alone and that nobody understands. If there is one thing I want to get out there is that I get it. I understand.”

Vancouver Coastal Health responds

A spokeswoman for Vancouver Coastal Health told The Chief there are many programs and services for eating disorders.

“We recognize the stress and challenges those with eating disorders face, along with their families and loved ones, and acknowledge the desire to seek treatment for this complex mental illness. The goal of eating disorder care is to help patients find the right service at the right time to best suit their needs and help them recover; however, that process is different for each person,” reads the emailed statement from Vancouver Coastal Health.

All staff with the Sea to Sky Mental Health and Substance Use team are able to assess and determine the best specialized services for people with eating disorders, refer them to the regional program in Vancouver if necessary and provide them with ongoing supports in the community when they return, according to the VCH statement.

For patients with more severe eating disorders who require specialized treatment, B.C. offers 47 beds for youth and adults, including at St. Paul’s Hospital in Vancouver, at BC Children’s Hospital, at a residential treatment facility in Vancouver and at Royal Jubilee Hospital in Victoria.

“Eating disorder clients who go through the regional program and return to their community of Squamish are encouraged to access local supports as well as follow their care through the regional program,” the spokeswoman said, adding while there no specialized eating disorder programs at Lions Gate Hospital or Squamish General Hospital, people can and do get admitted to hospital when there is an acute need.

Help for kids

For several of the people we spoke to, their eating disorder started when they were children or teens.

Dr. Dzung Vo, head of adolescent health and medicine at BC Children’s Hospital told The Chief what he wants people to understand is that eating disorders are not anyone’s fault.

“They are complex with likely many causes including genetics, and the environment. No one chooses to have an eating disorder and no parent wants their child to have an eating disorder. Eating disorders are very serious but it’s important to remember that they’re also treatable,” he said.

“For adolescents, the support of families and caregivers are key in recovery. If you’re concerned about your child, don’t wait to get help. Youth or parents can talk to their family physician and go to the Kelty Mental Health Resource website to see what resources are available in your area.”

Uniquely Squamish

The four Squamish residents, who reached out to The Chief to discuss their experience with eating disorders, noted a particular aspect of the local culture that lends itself to eating disorders and makes it harder to recover from them, they say.

“The phrase that we use in this town is ‘Hardwired for Adventure.’ Everyone is an athlete and pushes themselves hard and everyone is a perfectionist,” Farquharson said. “But it supersedes something more necessary, which is life.”

Stewart said the emphasis in Squamish on so many sports can get warped into how your weight reflects or impacts your chosen activity.

She says the fitness-focused culture also makes it easy to hide an eating disorder behind eating a certain way because a competition or event is coming up.

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Source: Pexels.com

The ‘NIED’

The perceived lack of resources in Squamish isn’t unique, according to Mark Ferdinand, executive director of the National Initiative for Eating Disorders.

The organization participated in a national survey of those with experience dealing with eating disorders, either as sufferers or caregivers, and found that while each person’s journey was unique, there were common threads from coast-to-coast.

In some provinces, people report waiting many months — sometimes 12 to 18 months — before seeing a specialist, according to the 2016  survey.

“There were themes and threads that were on the negative side — challenges to accessing care — and then there were some examples of, ‘I was able to get appropriate care through my employer-based insurance plan or university,’ as more than one indicated,” Ferdinand said.

(Out of the survey came a Canadian Eating Disorders Strategy.)

Existing problems accessing care aren’t new, he added.

The gaps in care were identified as far back as the 1960s.

Federal leadership was one of the things identified at that time. In that realm, Canada seems to be doing better in more recent years, he said.

“If I look at whether it is mental health, eating disorders in this country, we had a mental health commission established in 2007... there were a number of recommendations made. That was a positive thing,” he said.

But most medical doctors receive less than five hours of training in university at the graduate level, on eating disorders.

“We know that everyone wants to do the best that they can for the person sitting in front of them... the challenge though remains that if you don’t receive the training or there are few PhDs and senior scientists in the country who are mentoring up-and-coming generations to do research in eating disorders, or to dedicate their career to treating eating disorders, then people are faced with patients who present with these complex mental illnesses.”

It may be hard for doctors without the specialized training to recognize when a patient is hiding their eating disorder behind another problem, for example, he said.

“We have funding and leadership, but now we need to go from a system level, down to a personal level and say how are these practitioners doing? How are they actually helping people with complex mental illnesses?”

B.C. is ahead of other provinces in some ways, such as the implementation of the Rapid Access to Consultative Expertise service (RACE), he said.

Through the service, primary care providers can call a phone number and choose from a selection of specialty services, including eating disorders, for real-time advice over the phone.

This allows a physician who might not know exactly the right thing to do or say faced with an eating disorder patient to get some advice and thus, improve that all-important interaction with the patient.

“That first contact with an individual can make a difference to their recovery,” Ferdinand said.

The earlier eating disorders are caught, the more likely a person is to recover from them.

NIED is focusing now on education about disorders and facilitating collaboration and conversation.

There is a lot of research and guidelines, he said, but very little on how to communicate better and how to collaborate better.

“I say this with the greatest respect for many people in the health care system, but we as a society, for decades, have valued people’s ability to know a lot of information about the clinical symptoms in regards to an illness or the indicators of recovery,” he said.

“Clinical endpoints alone don’t guarantee recovery. Just because I gained weight or my heart rate is up, those aren’t all the things we need to think about in terms of recovery. We also need to think about how the parents are approaching the loved one at home,” he said.

Another example that could see some improvement across the country is a medical office providing good, clear information so that patients know what is next, he said.

Relapses happen frequently with eating disorder patients and part of that is that there isn’t as much of a focus on the things that are being communicated to people during those transitions from either a day program or a residential program, a doctor’s office or a hospital stay, he said.

What not to say

Asked what people should say who run into Farquharson and may notice her weight, she said a two-handed handshake is welcome.

“I never comment on anyone’s body, so I hope they don’t comment on mine,” she said, adding in the past people have commented on how a dress fits her

“Not because they don’t see it. I am sure they notice that I am thin, however, it feels like a judgment.”

Click help

If you or someone you love may be struggling with an eating disorder, talk to your doctor. For research and additional information, go to the National Eating Disorder Education Centre or FEAST.

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Source: Pexels.com

Fast facts

Courtesy Dr. Dzung Vo, head of adolescent health and medicine at BC Children’s Hospital.

Estimates vary, but between 0.5% and 4% of females are diagnosed with an eating disorder.

For every 10 females, one male is diagnosed with an eating disorder, but some research suggests the actual prevalence of males with eating disorders is significantly higher.

Anorexia nervosa is the most common eating disorder treated at BC Children’s Hospital.

One frequent consequence of eating disorders is malnutrition. This can affect and damage all parts of the body and brain.

Some of the most common effects are;

Heart: the heart slows down, can have problems with its rhythm and function and strength, and in severe cases, may stop beating, which can be fatal. When the heart is not functioning at full strength, the cardiovascular system can lose its ability to maintain adequate blood pressure, and the blood pressure can become too low (especially when standing up).

Intestines: the intestines may work more slowly, become smaller and less able to handle normal amounts of nutrition.

Muscles: the muscles can become weak and lose mass. This is because the body breaks down muscle to provide energy to the body and brain.

Skin: malnutrition can cause hair to fall out. There can also be new growth of very fine hair on certain parts of the body, this is the body attempting to conserve energy and heat.

Brain: malnutrition impairs the brain’s ability to function properly, which can cause both psychiatric and neurological symptoms. Prolonged malnutrition may interfere with proper brain development during adolescence.

Reproductive system: the hormonal system that allows for reproduction will stop functioning. This can lead to delayed or missed menstrual periods, and delayed puberty.

Bones: because reproductive hormones are important in developing bone density and strength during adolescence, prolonged periods (more than six months) of significant malnutrition can lead to bones being weaker than they would usually be, which can increase the risk of broken bones in the future.

The good news is, almost all of the medical effects are completely reversible once nutrition has been restored for a sustained amount of time.

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