|The logo shows the internal illogic imposed by the stigma of mood disorders.|
A person who has a mood disorder has a chronic, manageable condition.
She is not lazy, not immoral, not self-indulgent. She is not suffering from some embarrassing unmentionable syndrome. She is just one of a large number of people whose body chemistry plunges her into the black hole of depression, or is one of the smaller but not insignificant group of people who swing between that hole and a fierce but unsustainable elation that takes them up into the blue sky until they crash again.
There is a stigma attached to having a mood disorder, though, that makes it hard to address, to attack, to subdue, to co-exist with.
Dena Cohen of Teaneck, a writer, editor, and social activist who writes under her maiden name, Dena Croog, knows this territory well. An op ed contributor to this newspaper, she introduced it to our readers on February 13, when her column, “I have bipolar disorder,” was printed and almost immediately went viral.
|Dena Croog Cohen is the creator of Refa’enu.|
She has created an organization, Refa’enu – or “heal us,” a plea directed at God many times during daily prayers – that will begin by launching support groups locally. It is modeled after the Mood Disorder Support Group of New York. Ms. Cohen started going to groups there as a participant; now she is a facilitator. Her work there has shown her that the simple fact of having a similar mood disorder – of being able to feel like other people, instead of always somehow different – is a powerful way to allow people to trust and help each other.
She is refining that idea by creating support groups for Jews.
The New York organization offers four support groups – one for people with depression, another for people with bipolar disorder, the third for friends and family of people with either disorder, and the final one for people under 30 who suffer from either.
Refa’enu, which is open to everyone across the Jewish world – and for that matter, from outside it, because no one will be checking credentials – would like to offer those four eventually, but it will begin by offering two groups, one for people with any mood disorder and the other for their family and friends. The groups, which will meet at Ben Porat Yosef in Paramus, will run for an hour and a half. (For more information, see the accompanying box.)
“It’s not group therapy,” Ms. Cohen said. “It’s support. People really are there for each other.
‘”No one is coming to offer advice. They’re coming because they have similar experiences.
“The amazing thing that I’ve found with MDSG is that just being in a room with someone who gets it – even if you’re from an entirely different walk of life – there is a lot of comfort there.”
The groups are peer rather than professionally led. “We have some training for the facilitators, but they have to fall under the group’s category as well,” she said. “You don’t have to have a degree in mental health. Some do. Most don’t. Facilitators just really have to make sure that everyone gets a chance to speak, that everyone is respectful of each other, and that the dialogue keeps going.”
The groups are specifically Jewish, Ms. Cohen said, “because the feeling of community is very important. People feel more comfortable when they are in their own comfort zone, with people who share similar experiences. There are certain cultural issues and experiences that people have as Jews that are different.” Every demographic group will have its own set of specific cultural references, she added.
In particular, she said, people worry about marrying into families with mood disorders, or about having a harder time finding a partner because of the stigma such a disorder in the family carries. There also might be some biases that come out of specific religious world views, she added.
Although Refa’enu will begin with just two support groups, Ms. Cohen’s plan is more ambitious and far-reaching. “We are developing a three-pronged program for Jewish high schools – for the students, either 12th graders or 11th graders and seniors; the faculty, and the parents,” she said. Each of those groups will have the chance to learn about the medical aspects of mood disorders, including the statistics that show them to be surprisingly widespread. The specifics of the message, which in general is the same across all three groups, will be tailored to be most relevant and effective for each one. “We also will have a panel of a few people who have experienced mood disorders, mostly in high school,” she said. That panel would speak to students; “the faculty might hear from someone who was really upset about how they went through high school and their illness wasn’t taken seriously.
“You might not want to put that person in front of the students,” she continued. “You don’t want to sugar-coat anything, but you want to give them something positive. There’s a tight balance between sugar-coating and being positive, but there are ways of taking an experience and showing what you’ve learned from it to make it a positive thing, even if originally it was negative. Someone can say, ‘I wish that this is what had happened when I was in school. It might have helped me – and it might help you.'”
It would be a bit more difficult to reach parents, because attendance at an assembly about mood disorders could not be made mandatory, but it is likely that many parents would be interested nonetheless, Ms. Cohen said. And because mood disorders are highly inheritable, “there is a chance that if someone has a child with a mood disorder, they might look more closely at their own struggles.”
This program is still under development; no schools have signed onto it so far, but some have made clear that they are interested.
Refa’enu might be run on a shoestring, but not even shoestrings are free. “No one is being paid, but we need money for operational costs, for rent for the support groups, for the training process, and for materials,” Ms. Cohen said. “We have to be insured. And there are always unanticipated costs.”
Refa’enu has raised funds and a matching grant from the Good People Fund via a joint effort with a Jewish fundraising platform, Jewcer.com. The campaign is meant to spur nonprofits in their own fundraising. Facing a challenge to raise at least $1,800 from at least 30 contributors to receive a $3,200 grant from the Good People Fund, “after two days of fundraising, we reached that goal,” Ms. Cohen said. Another group reached it as well, and also received a $3,200 grant, so another goal to the campaign was set. “Whoever was first to reach $5,000 from at least 60 contributors gets their grant changed to a matching $5,000 from the Good People fund,” she added.
“It’s very helpful for a start-up.”
Refa’enu is one of six groups in the contest. To learn more about it, go to www.jewcer.com/moodyjews. (Yes, the name is brilliant. “We had to have a word that people can spell,” Ms. Cohen said. That word is not Refa’enu.)
Ruth Roth of Teaneck is the director of admissions at Ben Porat Yosef, where the support groups will meet, and she sits on Refa’enu’s board. “I do have a personal interest in Refa’enu,” she said. “He had an undiagnosed mental illness,” she said about her son, Jonathan Roth, who died. “What really impresses me about Refa’enu is the idea that as a community, we should not hide from mental illness, because when you hide from it, you don’t get better.
“It is an opportunity to help people and families help themselves. If any parents can get any help from what happened, then at least that would be – I don’t want to say consolation – but at least it might add some meaning.
“If there had been a resource like this available, my son could have learned that he was not alone. What he had would not have been a source of shame, but just another illness.
“No one would have said that my son was ill. He looked fine and he said he was fine, he said everything was great. He had a lot of friends, but he suffered in silence.
“It’s like cancer used to be. Someone would walk by, and you’d whisper ‘Cancer.’ We have to destigmatize depression, show that it is like any other illness.
“That’s why we don’t say, ‘Do you have depression?’ in our flyer. We just say, ‘Is life too hard? Is it too difficult for you or for a family member? Come to the group.”
Dr. Hannah Rothstein of Teaneck, another Refae’nu board member, is a professor of organizational psychology at Baruch College. Like Ms. Roth, she is the mother of a son who died. “Dena asked me to be on the board because she was a good friend of my late son, Yosef, who killed himself 11 years ago, when he was 25,” Dr. Rothstein said.
Indeed, Ms. Cohen said that she originally thought of starting a group like Refae’nu 11 years ago, when she was newly diagnosed with bipolar disorder and a good friend committed suicide. “When that happened to my friend, I finally saw the illness outside of myself,” Ms. Cohen said. It was with that far-too-dear-at-the-price distance and clarity that she was able to create Refae’nu.
Like Ms. Cohen and Ms. Roth, Dr. Rothstein said that it is vital to remove the stigma attached to mood disorders. “One of my favorite billboards is the one that says depression is not a flaw of character, it is a flaw of chemistry,” she said. “A lot of well-meaning people still don’t get the biological and biochemical basis of it, and think that it is somehow different from cancer or diabetes.”
The group will meet an underserved need, she added. “Sometimes people just need to come in and talk. We want this to be a safe space. We want to make sure that what happens in the meetings stays in the meetings.”
Participants need not have a diagnosis to be allowed into the group. “The group doesn’t want to be a diagnostician, but there is nothing wrong with coming in and asking if what you’re feeling is run of the mill, or is it depression,” Dr. Roth said.
And if it is depression or bipolar disorder, knowing that they are among friends, seen with understanding rather than dismay, distrust, or disgust, is a good way for people to begin to learn how to treat it, understand it, and live with it.