Eating disorders, as described by some of the people who suffer from them, can be some of the most isolating and misunderstood diseases. So dispelling misconceptions, eradicating the stigma and making it easier for sufferers to seek medical help without judgment is essential to making a positive impact on the prevalence of these diseases, they say.

Shevi Urbach – whose twin sister, Tammy Speisman, died at the age of 32 in 2012 after battling her eating disorders for almost two decades – said that based on her observations, many people don’t realize an eating disorder is a physical and a mental disease.

“People think, ‘They make themselves sick and can stop it any time they want.’ This is simply not true. In my sister’s case, I know she so badly wanted her disease to stop. She wanted all the symptoms to go away and all the pain, both mentally and physically, to go away,” Urbach said.

And with the misconceptions come the stigma from the community.

“My sister, in the early years of her illness, would often attend our family shul to spend time with her friends. These friends were approached by a well-respected member of the congregation, telling them to stay away from Tammy, because she was sick and a bad influence,” Urbach recalled.

“I definitely think that the leaders in the Orthodox schools and synagogues should address the community to say this is a real disease and no one should be made to feel shamed from any mental health disorder. The message needs to be heard.”

In a 2016 Times of Israel article, Judy Krasna, who lives in Beit Shemesh, Israel, with a daughter who has anorexia, wrote that the biggest issue when it comes to eating disorders in the Jewish world is that Orthodox Jewish sufferers are not getting the treatment they need.

READ: DIETING OURSELVES TO DEATH; THE JEWISH COMMUNITY AND THEIR STRUGGLE WITH EATING DISORDERS

“This is partly because the stigma, secrecy and embarrassment surrounding eating disorders dominates all else. In certain Orthodox communities, an eating disorder (or any other mental disorder) can leave a ‘black mark’ or a blemish of sorts on the family,” Krasna wrote.

“I understand the rationale behind keeping our communities insular; however, when it comes to seeking the best eating disorder treatment available, the insular culture is dangerous.”

Rabbi Chaim Strauchler – the spiritual leader of Toronto’s Orthodox Shaarei Shomayim Congregation who recently moderated a panel discussion to address the prevalence of eating disorders in the Orthodox community – is actively working to raise awareness about the issue.

“People may think it’s just in your mind, or will say, ‘Just get over it,’ and it’s an illness like other illnesses that need to be … addressed on an individual, public health and community level,” Rabbi Strauchler said.

He said he would encourage parents who may be concerned about a child who shows signs of an eating disorder to treat it as “a medical issue that requires the same kind of care you would seek if you broke an arm, or if you had a diagnosis of a growth. You get the best medical care you can and you take it seriously.

“This is not something you should feel ashamed of. It’s something many people in the community face and people you would never think of are facing it.… As a rabbi, I see those people.”

Dr. Leora Pinhas, who has been working in the field of eating disorders for about 20 years, said the stigma may be even worse in the medical community.

She said that despite the fact that eating disorders are the second most common chronic illness in adolescents, they “are the orphan illness of mental health.”

“Most mental health institutions or organizations, not only do they not provide treatment for eating disorders, they exclude people with eating disorders from their treatment for other disorders. It’s pure prejudice. I think it’s sexist. Illnesses that happen mostly to young women are not seen as real illnesses. Or they’re manipulative, or hysterical, they could just stop it, they just want attention. It’s not seen as a serious illness, even though it is actually the most fatal of mental health disorders,” Pinhas said.

“It is traditionally assumed that patients lie or cheat or manipulate and that they can’t be trusted. And the other problem, often with particularly intensive treatments, is that if you have a symptom of your disorder while you’re in treatment, it is somehow seen as a marker of a lack of motivation, rather than just a symptom of your disorder.”

Pinhas explained that in Canada, data relating to eating disorders are not tracked, so information about who gets them, and who dies from them, is hard to come by.

“When doctors bill OHIP (Ontario’s public health insurance plan), they have to include a diagnostic code (to identify) the disorder they’re treating. We don’t have diagnostic codes for eating disorders. Even though I only see patients with eating disorders, we have no way of collecting that data here. You’d have to look outside of Canada,” Pinhas said.

When it comes to seeking treatment, resources are lacking, she added.

“The vast majority of people have unmet treatment needs, and if they do get any of their treatment needs met, it tends to be the physical ones, as their family doctor tries to help them stay well. But to get mental health resources is very hard,” she said.

“In some communities, there may only be one treatment option and if that doesn’t work for you, too bad, so sad. If you have depression in Toronto, do you know how many different kinds of treatments you’d have to choose from?”

She said that in most cases, getting accepted into one of the few eating disorder programs that exist – all of which have months-long waiting lists – requires the patient to be “sick enough” to need day treatment.

“If you’re out-patient, forget it. And as an adult, it’s just non-existent. And if that particular treatment that’s offered doesn’t work for you, come back when you’re ready to do that treatment because it’s the only option. Where else does that exist?” Pinhas asked.

Throughout the country, there are a number of organizations that attempt to bridge the gap by offering resources for patients with eating disorders, including: the Toronto-based National Eating Disorder Information Centre; the Bulimia Anorexia Nervosa Association, which advocates for eating disorder awareness and treatment in southwestern Ontario; the Eating Disorder Support Network of Alberta, which serves affected people in Edmonton and Calgary; the British Columbia Eating Disorders Association, which is based in Victoria; and the Looking Glass Foundation, which offers prevention, support and recovery services and is based in Vancouver.

Urbach said that when her sister was younger, she often visited Sheena’s Place, an eating disorder support centre in Toronto, where she would participate in an art therapy program.

“It was one of her ‘safe places,’ as she would call it,” Urbach said.

“As she got older, the resources were very slim, as they definitely have more support for kids ages 12 to 16. After that, if the hospital programs don’t work for an individual, you’re basically on your own.”

Lisa Boltman, who has fought against her eating disorder for about 20 years and speaks publicly about her journey, started a blog called Skeletons In My Closet, to document her struggles and successes after she signed up for – and promptly dropped out of – a treatment program in 2015.

“I signed up and after two days, I hated it, so I left,” she said.

“Their main goal is weight restoration, which, of course, is important, but I find that 90 per cent of their goal is weight restoration. It’s like, ‘Great. You’ve put 25 pounds of weight on me. Now what? Now you’re going to send me home and now what?’ … If you put the weight on me and you don’t fix the mental, I’m just going to go backwards again.”

Boltman, who is 43 and a mother of three boys, said she realized she would have to take it upon herself to find her own treatment team.

“I haven’t found like a one-stop shop place. I found a therapist here, a dietician there, group therapy here, which is inconvenient, but it’s hard to find one place and find everybody that you mesh with, because it really is based on a relationship with a person,” she said.

“I just knew that if I didn’t get help and reach out, it was going to be (the) life I lived until it killed me.”

Pinhas said that parents must work to protect their children from external messaging that can affect their thinking about food and body image.

“If you go to school now, in every grade, your kid is going to be exposed to healthy lifestyle (curricula) that teaches them how to count calories, how to read labels, how they shouldn’t eat anything with fat or sugar, and they really transmit this idea that fat is bad under all circumstances,” Pinhas said.

“Now we have this stupid ridiculous law where all calories are displayed, which I think is a human rights violation, by the way. They’re forcing me to look at something that might hurt me. I would like to choose for myself. And people with eating disorders now can’t go into those restaurants.… It’s like putting stairs where ramps used to be for people with mental health disorders.”