Jewish Health

Support & support groups

There are numerous support groups and organisations which provide help and assistance to people diagnosed with the conditions talked about on this site. Some of them have been set up specifically with Jewish people in mind. Others are national or international organisations without an emphasis on ethnicity. To see a list of website links for some of the organisations mentioned in this summary, visit the ‘resources’ section. A good place to find out about smaller local support groups that might not have their own website is through your doctor or nurse or your local library. Some organisations also operate telephone helplines that can provide information and a sympathetic listening ear.
People differed greatly in their views and experiences of support groups. Several people were vaguely aware of a support group for their condition but had never made contact. One man with Crohn’s disease was very clear that he did not want to meet other people with the same condition as he thought it would make him feel more depressed.
However, for many people we talked to, being able to meet like-minded people with a common connection and exchanging practical tips on coping with their condition was a helpful and positive experience. Some people made good friends through local support groups and maintained these friendships after they had stopped attending the group.
 
Timing was an important issue. A couple of people had joined a group or subscribed to a newsletter soon after diagnosis but then found it difficult to cope with the sheer amount of information they received. One man with torsion dystonia described how he had not felt ready to meet others with the condition when he was most badly affected, but more recently had joined the Dystonia Society.
Several people said they attended a handful of meetings and then moved on. One woman who had tried out different support groups for women with breast cancer didn’t feel she fitted in with the women she met in the first group despite their shared experiences. A woman with Crohn’s, who attended a few meetings, found out that other people experienced worse symptoms than her and did not think anyone would want to hear how relatively well she was managing. A few people said they found attending a relevant expert talk or information event more useful than just sitting around and chatting to other patients.
On occasions, organisations might be able to provide financial help or give advice on financial matters for people whose ability to work has been affected by their condition or who need to purchase expensive items to help them live more comfortably.
Besides formal support groups, people mentioned friends and their immediate local community as important sources of support. For those who had a child with a serious health condition it was important to find supportive staff at school or in the nursery to help manage their child’s health and be aware of their special medical and dietary needs. Parents who have been diagnosed with an illness and had small children to look after found practical help from friends and family invaluable. Several people had also sought Rabbinic support, both for practical guidance and also for counselling to help them come to terms with their own or their child’s condition on a spiritual level (see Jewish identity, rituals and observances).
For many people, the most natural place to seek out help and support were partners and family members (see Relationships). Many people we spoke to had family members who were affected by the same condition, and several said they found it useful to ‘compare notes’ about diagnostic and treatment information with siblings or cousins. It was harder to talk to parents because of a concern about causing parents to feel guilty or worried.
 
Those who had family members living in other countries often found that their relatives’ healthcare experiences were quite different to their own. A few people also said they had first heard of scientific breakthroughs, tests or treatments through friends or relatives in Israel or the United States rather than their own health professionals in the UK. This was thought to be due to the larger populations of Ashkenazi Jews in these two countries, meaning that the condition was likely to have a higher profile.
 
Several people who had received a lot of support when they were unwell were keen to ‘give something back’ once they felt better and let others benefit from what they had learned about their condition.
A few people accessed one-to-one psychological support from a counsellor or psychologist with specialist knowledge about their condition. A couple of women had been able to see a counsellor through a charity, but others had to use their own initiative and pay for services privately.


Last reviewed September 2015.

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