Jewish Health

Telling people

The decision to tell others about a serious illness can be daunting and it is a very personal choice. Some people may become more open about their condition over time as they adjust to their diagnosis and a different way of living. Others may enjoy the occasional respite of moving amongst people who are unaware that they have an illness, even when they appreciate the support of friends and family who are ‘in the know’. Deciding not to tell can therefore be a way of preserving normality in some areas of life.
Many people we spoke to worried about others’ reactions when telling them about their illness. The desire not to worry people and the fear of being stigmatised within the wider community were equally prominent concerns. When there was a genetic component, personal feelings could be compounded by concern for other family members. But there was also a sense of responsibility in that knowledge about a familial condition might help to protect those who are currently not aware of it from becoming ill. (See Genetics and inheritance 1 and 2)
The people we interviewed varied greatly in how openly they would discuss their condition with others. For a couple, their spouse and their doctor were the only ones who knew about their illness. At the other extreme, one man with Crohn’s disease had built his early career as a stand-up comedian on an act in which he joked about his illness with large audiences and even showed off his arterial feed line during performances.
Some people mentioned altruistic reasons for telling others. One man with Crohn’s described himself as a positive role model and said he liked to advise others on managing the condition, emphasising the importance of a positive attitude. A definite pay-off of being open was finding out about others who had the same condition. For example, the mother of a son with Crohn’s disease discovered over time that several other children in her community also had the disease and made contact with other mothers for mutual support.
For others, the decision to tell others about their illness was led more by practical considerations. A couple of people with Crohns’ disease decided to tell friends and family about their condition to account for their frequent visits to the toilet or their special dietary requirements. Needing time off work for treatment or check-up appointments were triggers for deciding to tell colleagues and employers. However, some people felt more comfortable keeping their condition to themselves, and those who decided to tell were conscious of the effects this information might have on other people.
For those who lived in tight-knit orthodox communities there were additional fears that rumours about a disease running in the family might put off candidates for a marriage introduction.
In the case of conditions that have physical manifestations, the decision to tell is not about ‘sharing the secret’ but about ‘explaining the obvious’. One man with torsion dystonia felt that once he had moved away from the kibbutz in which he grew up, there was a greater pressure on him to account for his impaired gait because people had not seen its gradual development.
Finding the right time and place to tell others is an important consideration. One woman described how she had waited until after her niece’s Bat Mitzvah before telling her siblings about her diagnosis of ovarian cancer because she did not want to ruin the family party. Another woman who tested positive for the BRCA1 mutation made sure she set aside some quiet time during a family gathering to give the news to her sister. Family members who hear about an illness for the first time might react with shock and need some time to catch up before moving on to consider the wider consequences or discuss treatment options.
Once the decision to tell has been made, it can be difficult to know how much detail to go into. People may have heard the name of a condition without knowing exactly what it involves and how best to support someone with the condition. A few people had developed shorthand explanations that served the purpose of accounting for their additional health needs without necessarily revealing the full story. One man with Gaucher disease who also had diabetes and Parkinson’s disease, said he would often tell people about the secondary illness of Parkinson’s rather than the Gaucher disease which he saw as the underlying cause, because people were more likely to be familiar with Parkinson’s disease. A couple of people with Crohn’s disease were reluctant to go into great detail about what they saw as very embarrassing aspects of the condition.

Many people acknowledged the tensions between the desire for privacy and the potential benefits that openness about one’s condition could also bring. There was a concern among a few people that efforts to keep a condition to oneself – especially in a tight-knit communities or a large family - might result in rumours and speculation that could do much more damage than factual information in the long-term. 

Last reviewed May 2019.


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