The dangers of hiding diabetes and the Haredi community

The Haredi community faces the medical challenges of diabetes

The discreet haredi focused JDRF conference (photo credit: JDRF ISRAEL)
The discreet haredi focused JDRF conference
(photo credit: JDRF ISRAEL)
As the parent of a 16-year-old diabetic daughter, I have attended conferences sponsored by the Juvenile Diabetes Research Foundation (JDRF), Israel’s only non-profit organization focused solely on people with type 1 diabetes and their specific needs.
Usually, these conferences are large, bright, colorful affairs, where doctors and scientists are the featured headliners. However, I recently found myself at a JDRF conference that was much smaller, more modest and low-key, discreetly tucked away in a corner of Jerusalem’s Shaare Zedek Medical Center.
Even more unusual, the event’s first speaker, instead of quoting from the latest medical research, began his remarks by quoting from material written more than 400 years ago. He was not wearing a doctor’s traditional white lab coat; his was black. I was indeed at the JDRF Conference – but it was the annual conference held specifically for the haredi community.
While the outward trappings followed ultra-Orthodox practice – separate snack tables for men and women, separate seating at the main session; men wearing frock coats and black hats, and bewigged women with long sleeves – the content was that of a standard conference.
Participants listened attentively to lectures from medical professionals about treatment, nutrition and new developments in diabetes research. The hallways outside the auditorium were lined with booths manned by medical companies promoting their products, including insulin pumps, glucometers and nutritional materials.
TYPE 1 diabetes, also known as juvenile diabetes, is a chronic condition in which the pancreas stops producing insulin, a hormone needed to allow sugar (glucose) to enter cells to produce energy. When there is no insulin to process sugar, the glucose level in the blood rises and the cells do not get needed energy.
Until the early 20th century, diabetes was a deadly illness. With the discovery of insulin in 1921 and its production for human use, diabetes became treatable.
Maddy Jacobson, CEO of Israel’s Juvenile Diabetes Research Foundation, explained the need for a conference for the haredi community.
“We organized a separate conference,” she says, “because people from the haredi sector of the population wanted one. They wouldn’t come to regular conferences.
because there is no separate seating, and they also find the style of dress at the regular conference to be inappropriate. They feel uncomfortable. They don’t take the brochures displayed, because the pictures are not appropriate for them.”
In addition, she says, the general conference does not meet the unique needs of the haredi community, including a discussion of issues pertaining to Jewish law and diabetes, which is a central part of the ultra- Orthodox conference.
“The haredi community is like a sponge, thirsting for information,” Jacobson adds. “There is a need to provide information and to discuss things.”
Jacobson explains that, while there is a great desire to better treat diabetes in the haredi community, there is also a natural desire to hide and conceal the illness from others. In the ultra-Orthodox communities, finding a shidduch (match) for one’s children is of primary importance.
Within this world, illnesses or ailments, either physical or mental, are often considered impediments to finding a proper match and some families will hide the fact that one of their children is diabetic, so as not to affect his or her prospects for marriage or those of other family members.
Jacobson reports that there have been reports of diabetic yeshiva students studying at seminaries away from home, who did not inject themselves with insulin, for fear that their roommates would notice, which would ultimately hurt their chances of receiving a proper match.
Rabbi Avraham Yeshaya Karelitz, the well-known haredi rabbi and educator from Bnei Brak, is perhaps the ultra-Orthodox community’s most outspoken and energetic advocate for diabetics and their families.
“Diabetes should not be thought of as a sickness, or an illness,” he says. “It is a medical condition that affects certain individuals.”
How did Rabbi Karelitz become familiar with diabetes, such that the haredi community in Israel turns to him for advice in all manner of issues relating to the subject? In his case, it comes from personal experience.
Some 10 years ago, Karelitz’s six-year-old son became diabetic. About a year later, his 17-year-old son also became diabetic. In the interim, Karelitz himself became ill with Parkinson’s disease. Since that time, he has become closely involved with type 1 diabetics in the haredi community, and fields queries daily from diabetics and their families.
Callers ask about subjects ranging from issues of Jewish law and diabetes, to discussions about appropriate matches for diabetic sons and daughters, to questions about disclosure of their child’s illness to the community.
In addition, Karelitz spearheaded the publication of a Hebrew booklet, Remember Us for Life, that discusses halachic issues for diabetics. It covers subjects such as fasting on Yom Kippur, use of medical devices on Shabbat and holidays and general instructions.
But perhaps one of the most important roles that Karelitz and other rabbinic leaders provide to the haredi diabetic community is encouragement, inspiration and hope in the face of a challenging medical condition. At the conference, both Karelitz and Rabbi Eliyahu Schlesinger, the rabbi of Jerusalem’s Gilo neighborhood, delivered words of guidance.
Karelitz, addressing whether it is preferable to disclose or conceal one’s diabetic condition, said that if hiding the fact negatively affects one’s medical condition, it is preferable to disclose the illness to the community.
While the question of disclosure is a non-issue in today’s vastly more open general society, it remains an important issue in the haredi world. The fact that he mentioned it at the conference was significant.
Prof. Ram Weiss, an endocrinologist who has been affiliated with Hadassah University Medical Center since 2005, and Rambam Medical Center in Haifa since July, has treated many haredi diabetics and agrees with this assessment.
“The rabbis have a spiritual authority within the haredi community,” he says. “When they speak, the audience listens. It would be difficult to find this at the secular conference. At secular conferences, we try to bring diabetics who are role models in the general society.”
Weiss, a Haifa native, holds a PhD from Yale in the field in addition to his degree from the Hebrew University.
He explains that the ultra-Orthodox diabetic faces essentially the same challenges as other diabetics.
“We are all human beings,” he says, “and diabetes requires a lot from a supportive family. In this respect, they are not different than anyone else.”
Nevertheless, he points out, there are some differences in the treatment of diabetes in the haredi community.
Large families with six or more children are commonplace and it can be difficult to maintain good nutrition in such families.
The situation can be even more difficult in yeshiva dormitories, where the menus are often loaded with foods high in carbohydrates, such as rice, potatoes and bread. It is essential that diabetics maintain a diet low in carbohydrates, as foods that are high in carbohydrates can lead to high blood sugar.
Weiss also says that exercise is particularly important for diabetics in reducing blood sugar levels and controlling weight. The value of taking time from one’s studies for exercise, he says, is not widely accepted in the haredi world.
ONE OBVIOUS advantage that diabetics in the non-haredi community do have, according to Weiss, is the ability to use social media with smartphones and computers to set up self-help groups on Facebook and WhatsApp. There are many kinds of groups and forums for diabetics within these frameworks.
In the haredi world, where the use of smartphones and the Internet is discouraged, these types of groups are not present. Nevertheless, he says, the haredim have compensated by setting up support groups for mothers of children with diabetes, mother-daughter get-togethers for diabetic girls, and father-and-son activities for boys with diabetes.
“Those who do this work of creating groups and discussion groups, are doing avodat kodesh [holy work],” he says. “The personal connection is very important.”
Tova and Rabbi Aharon Lang, Jerusalem residents, perform the type of holy work described by Weiss.
Originally from Switzerland – she is from Basel and he is from Zurich – their son developed diabetes when he was 13 months old. Says Mrs. Lang, “I wanted to speak to other mothers of diabetics, but I didn’t know of many others.”
She put an ad in the local haredi newspaper advertising the formation of a support group for mothers of diabetics.
Seven mothers came to that first meeting, she says, which began at 8 p.m. and didn’t end until 1 a.m.
Clearly, there was a need for a group in which mothers could share their thoughts, ideas and knowledge.
The organization Matok B’Yachad (Sweet Together) was born. Eventually, the meetings began to be held monthly. The mothers then decided that it would be beneficial if their children could meet as well.
Every few months there are social events for mothers and their diabetic daughters, and separate events are held for fathers and their diabetic sons as well. Lang’s husband is also active in this work and helped organize the creation of the booklet on Jewish law and diabetes, together with Karelitz.
Matok B’Yachad even has a free-loan organization that lends all types of equipment for diabetics in need.
Avraham Dickman of Betar Illit first became aware of diabetes when his 13-year-old son was hospitalized a year and a half ago. Dickman, a self-professed auto-didact, went home that evening and spent the night learning about diabetes.
“I understood that I couldn’t remain ignorant. I went home and studied on the Internet for seven hours. I learned all about diabetes, and by the next day I had become a ‘professor’ of diabetes.”
Dickman feels that when it comes to ultra-Orthodox families concealing information about diabetes, one needs to distinguish between reasons of general medical confidentiality, which is present in all societies, and a desire for secrecy that he says is a type of obsessive behavior.
“In the haredi community,” he says, “there is a culture of secrecy, which is the fear of being labeled as a ‘problem’ and which can end up giving a family a ‘bad’ name. This can make haredi diabetics ‘hostages’ to their community, which imposes a form of obsessive secrecy and concealment.”
Dickman adds that obsessive hiding and concealment of diabetes will inevitably lead to poor management of the disease. Treatment of type 1 diabetes requires discipline and effort on the part of diabetics in order to maintain a healthy lifestyle.
Yet, says Weiss, “Unlike other illnesses, with type 1 diabetes the results are dictated by the patient. In most other illnesses doctors attempt to control the illness, but they can’t completely do so. With diabetes, however, once the treatment team gives the patient the tools, it is then up to the patient… The future is not written. What you do is what will be.”
The efforts of leaders of the haredi community, as well as the cooperative work that is being done with the Juvenile Diabetes Research Foundation to better inform, educate, and treat diabetics, will ultimately lead to a healthier society.
In the words of Tova Lang, “With diabetes, knowledge is the key to understanding and living with the disease.”