Telling people – Jewish health

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.

Harveys teacher colleagues were unaware that he had Crohns disease because he did not let it…

Age at interview 63

Gender Male

Age at diagnosis 56

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Are they aware that you had Crohn’s throughout your working life?

I don’t think so, no [laughs]. I really don’t. I suppose they knew that sometimes I was away ill, but no one ever went into… and I suppose the only time they really sat up and took notice was when I actually ended up in the hospital and was off work for a year and then had to retire. That’s when they suddenly realised and maybe not even then, they just thought oh he’s got cancer and that’s it, boom, boom, boom. I don’t think anyone was aware that, because I tried to continue to do my work to the best of my ability. And I suppose maybe I got away with it.

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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)

Members of Karins family kept quiet about carrying the BRCA1 gene and this caused a rift within…

Age at interview 39

Gender Female

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Why do you think your family, members of your family kept, just kept quiet about carrying the gene?

I don’t know. Because… I don’t know. Because maybe they thought, if they kept quiet it wouldn’t happen. It hurt a lot of people. It could have been a… my sister may… hindsight’s a wonderful thing. My sister may have gone on a screening process, and she may have not had it. But then they may have caught the cancer earlier. They may not. It’s not, it’s like you have a scan every so often and the tumour grows, you could just miss it anyway. So, one doesn’t know. But I mean we don’t talk to the cousins that withheld the information, no longer talk to them. Round about the same time, another cousin, who was 27 was diagnosed with breast cancer as well.

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Dr Koch explains why there is more stigma attached to female Tay Sachs carriers than male.

Gender Male

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You said there’s a stigma for girls, for the parents, for the mothers of girls?

Yes. Well the mothers believe it’s a stigma. You see when a girl wants to get married and she now knows she’s got, she’s a carrier, the mother feels this is going to be a liability towards the child, the girl finding a suitable partner, because people think, oh what a terrible thing, what’s this thing? They don’t know about it. She’s got this you see. Well she hasn’t got anything. She’s a carrier. I mean if you listed the carriers that you probably are, the things you’re carrying, you’d be amazed, absolutely shattered, in fact I think you’d be distraught. But it’s best if you don’t know. But it is a consideration.

But the boys there’s far less stigma. In fact I don’t know if there is a stigma for boys, they just think well if they don’t want it done it’s because of ignorance. Something we try hard but we don’t succeed a 100%. After the stigma about being a girl and you know, it’s a stigma blah blah blah. The next stigma is well there’s no tachs say Tay Sachs in our family, therefore it doesn’t affect us. Well there was no Tay Sachs in my wife and I’s family that we ever knew of and thatAfter we found out and after we got the test we tested one side of the family and there were carriers galore. So I mean it was there but everybody had been lucky and been of the four, that was either one of the two carriers and one not anything and no Tay Sachs, no Tay Sachs was evident. But that’s another one we have to fight hard against. There’s no Tay Sachs in our family, therefore we don’t have to worry about it.

And another of them is well we’re not Ashkenazi we’re Sephardic, that’s another sect. Therefore there’s no problem. Well Sephardic instead of being one in twenty potential carriers in the Ashkenazi group, the Sephardic are approximately one in ninety to one in a hundred. So they’re not zero. In fact everybody, all else, everybody in the world, by analysis and I don’t know how anybody ever did this. I certainly didn’t do this work. And I don’t know how they got the answers. it’s estimated at one in 250 is a carrier of any religious race or whatever. One in 250. That means if two come together it’s going to be one in 60,000 or something. A huge figure I believe. it’s a massive figure anyway. So, that’s what it is 250 squared plus about, plus another 250 or something I forget the mathematics of it now. it’s a huge figure.

But there are, there are other sects in the world that are carriers. As I said there’s the French Canadians in Quebec at 36%. There’s the people in Louisana, they are about 10%, and there are bits and pieces all over the place of other people. So it’s, it’s widespread. But still rare.

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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.

Gareth describes how showing his central line tube during a performance at the Edinburgh festival…

Gender Male

Age at diagnosis 13

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I think it’s about how you deliver it. If I said to someone, Oh there’s this really dangerous tube in me chest, and So most people’s reaction to it is positive, and I think I am apt to get a bit confrontational with it if anything, you know. And I actually do, if I talk, I don’t always talk about it in my stand up, and in fact I’m trying to move away from it now. But when I do do the health stuff in my stand up, I actually lift my top to show the line, so the audience knows it’s true. And it’s a really good tool for stand up because 2 oclock in the morning in Edinburgh I remember doing a gig called Spank, which is a big gig up in Edinburgh. And 2 oclock in the morning, the audience is really drunk. They’re loud, they’re boisterous, they’re shouting. I went on stage and did a couple of lines, got some response, and then I just lifted my shirt, and went, Do you want to hear something? Do you want to hear about this? And 200 odd people, 300 odd people, you shut them up, and sat back and listened and then laughed because they knew it was all true. So on some of them it’s been a great tool, you know.

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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.

Hinda felt bad asking for a plain sauce when her daughter-in-law had gone to the effort of…

Age at interview 54

Gender Female

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Well something, I suppose it’s obvious, it’s always in the back of your mind, but I don’t even, I try not to think about it. I try my best not to even think about it. The only time, I would think about it, as I said, was I’m going out for a meal or something like that, and then sometimes if people say to me, Come to me for dinner. And I sort of panic, because I have to explain to them, That well I can’t eat this, and I can’t eat that. Or my son’s wife, now, it’s really, you know, because last week, I’d gone there last Monday night, and I went in and she was cooking, and I said, What are you making? And she, I knew, I mean she probably thinks, this one’s in catering, you know, but anyway, she was making this sauce for the chicken and I said, Can I just have mine plain? And she said, Yes, no problem. But I knew, she’d gone to all the trouble of making this sauce, and I felt bad. She said to me, Would you give me a list of things you can and can’t eat. I just didn’t want to go down that road.

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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.

Nicole & Katy talk about how the Tay Sachs gene running in the family was ‘brushed under the…

Age at interview 54

Gender Female

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When you say it’s not talked about, you obviously talk about it to people?

Nicole’Yes, but I think in that generation it wasn’t, they didn’t talk about it. I think that, you know, they sort of brushed it under the carpet. I mean maybe they were frightened that nobody would want to marry into their family if they knew that there was something going on. You know, and on the other hand I mean maybe that they didn’t know the, the implications of it, you know, they could have had no idea. You know, I would actually think that they would have had, you know, no idea of the implications of it. I mean, my husband’s father came to this country in the early 1900s, and you know, probably it was from a little tiny town in, somewhere in Southern Poland and I wouldn’t have thought they would have known anything, you know, more than a little bit medical at all. You know, the town largely of Jews. But there were many Jews there. And I would think it was something that they just didn’t talk about.

Katy’ Well you wouldn’t think of it in olden days as it were. In fact in a lot of ways the screening is making it worse, because… I mean natural selection would say that if you have children with Tay Sachs then you wouldn’t have children, and then therefore that gene would die away. But now, obviously that’s not the case, because people are purposely marrying people that don’t have it

Nicole’Well no.

Katy’ So that they can pass on the gene without having… so they can pass on the gene without actually having the Tay Sachs which is actually perpetuated this, what is going to be described as faulty gene. So it’s
Sorry what sort of gene?

Katy’ it’s a faulty gene.

Oh a faulty gene, yes.

Katy’ Yes, because clearly you know, whereas now I’ve passed it on. Whereas God forbid I had not known and I had met someone with Tay Sachs then we wouldn’t have been able to have children and therefore we would have eradicated that line.

Nicole’Well you would, you would be able to, it’s only a one in four chance.

Katy’ Yes, I’m not sure I would have kept going. It takes a very brave person.

Nicole’ But [name] did and this girl that I met that had the little boy who died, she then went on to have a daughter who is perfectly alright.

Katy’ it’s very brave. I mean I’m not sure without the genetyou know, the things now, you know, the genetic
Nicole’ Screening.

Katy’ screening. I’m not sure I would be brave enough to do that. I couldn’t watch several children pass away. And then also
Nicole’ Oh no, no, no. But you’re tested when you’re first pregnant or you have some form of IVF and then they test the embryos and they only implant the ones that

Katy’ But back then when your friend and dad’s cousin

Nicole’No. Well I mean I would think that she, I don’t know.

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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.

M feels out of his comfort zone when meeting strangers as he worries that they might not see the…

Age at interview 39

Gender Male

Age at diagnosis 16

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Did you say anything to people when you were out if they were staring at you?

Did I say anything? Not to… obviously my friends, and like my friends from the Kibbutz or from the Army, anywhere I travelled, they knew, I told them there was a neurological condition. It’s quite obvious there is something wrong so it’s not something that you can hide. But I didn’t wear a shirt saying, you know, because I’ve got dystonia; so forgive me because of the dystonia.

And you said it was when you left the Kibbutz you felt more disabled because within that environment people knew who you were and had grown up with you, finding out about this diagnosis.

I’m not sure I felt more disabled. But I felt more, well outside of my comfort zone because there was no question, that people… if you see the condition as it progresses slowly, gradually, beginning from perfectly able young boy to a relatively weak young, well 18 year old with some odd gait. It’s a long progress, it doesn’t happen overnight, so, there’s no questions asked. So it’s just grows, just like watching a tree grow. You don’t one day notice you’ve got a tree in the garden but when you go outside, you do, there’s gap that you have to compensate for which is under this superficial appearance there is me. And this gap has to be overcome every time you meet a new person.

So, it wasn’t like I felt more disabled, physically disabled as before, it was the interaction that was slightly more difficult with strangers.

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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.

Hayleys mother was shocked by her decision to have her ovaries removed after she tested positive…

Age at interview 39

Gender Female

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And what did your mum think?

Well you see I told… Dad knew I was being tested. I played the whole thing down, hoping… because he was going through cancer himself, which was completely… it was just like, he has got cancer of the bladder which is clear now, and that was just like an old man’s cancer, you know, it’s not anything to do with this BRCA thing, it’s just unlucky, you know, but I did think it happened for a reason, without that [cousin] probably wouldn’t have opened up her file so, you know, Dad… it was good thing, you know, in a funny old way.

Well Mum knew nothing and I was… at all, she didn’t know, because we’re not, as I say we are dysfunctional family. She knew [cousin] had cancer, but that was about it. She didn’t know what it was cancer, she wasn’t that interested, and, so, I remember I got the results on the Tuesday and I thought well I have got to tell Mum and Dad. And I was calm, I was very calm about it, I wasn’t even tearful. I was, thought ‘ugh’, you know, I could probably do with a couple of gins.

When I was on the phone, I said, Right what I’m tell you, I don’t want you to interrupt. I just want you to understand and of course Mum was in this complete… I don’t know. I told them, I said, Have you got any questions? And they said, Mum said, Well you’re alright aren’t you? I said, Yes. But the likelihood is I’m going to have an operation and have my ovaries removed. No, don’t have that. Have a second opinion. I said, They took two lots of blood, they I’m not having a second opinion. This is the deal.

But luckily my mum’s brother is gynaecologist, and she was on the phone before, you know, and he said, You know it’s a common thing. Women have ovaries removed all the time for various reasons. It’s a procedure which is, a… you know, a very straightforward procedure and made her feel better and calmed her down.

And I told Mum and Dad and Mum was like, Are you definitely sure you are going to have it. It’s a very drastic op.? And I said, Yes, I have a choice.

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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.

Sylvia finds that explaining the effects of Crohns disease to friends and family can be…

Age at interview 74

Gender Female

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Do you tell people that you’re with, if you’re travelling with people or if you meeting friends out in a restaurant are they aware of this?

Normally when I go away it’s with close friends and yes, I mean, I know just after my husband, my husband died -he died, what nineteen years ago -I went with a friend to Florence and she was a good friend, she knew I had Crohn’s but we’d never been away together before, and you know, every so often I had to rush back to the hotel to go, you know, sometimes four or five times, and you know, in the end, you know, I told her. I think partly because, you know, it’s to do with bowel function and one feels sort of slightly that you don’t talk about it and things like that, rather than saying well, you know, it’s an illness, the same, the same as anything else. But I think that’s what to do, I think that’s what it’s about.

And I know, well a few years ago I was with my son and daughter and we were in Istanbul and we were in the Topkapi Palace and, you know, you do the tour there and I said to the guide, Is there a toilet in here There was no toilet in this actual place so I would have… so I ended up having to go out and missing the whole tour to sort of, to where there was a toilet. And trying to explain to children, right well, you know, I need to go to the toilet. Well can’t it wait’ and things like that. So, so yes, I think there is, you know, can be a certain amount of stigma, you know, and wondering what people will think about you and things like that and that you can’t control yourself.

And very occasionally, at night, I’m not always able to control my bowels, so sometimes there’ll be a bit of staining, which is, not good, you know, and, and I’m always worried, you know, particularly if I’m away. Fine, I can sort of change the bed here. So, so you know those worries that go on. Yes.

I mean a lot of the times when you say to people, Well I have Crohn’s Disease. A lot of people aren’t aware what it is. They have absolutely no idea and you get the stupid joke of Crohn’s Disease and, you know, what do you expect at your age? An old crone’ and things like that. [laughter in voice].

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At first Sara was reluctant to talk about her son’s Crohn’s disease but she had to tell his school.

Age at interview 48

Gender Female

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In terms of telling people, because I know you mentioned on the telephone, that you thought it’s not something that’s widely discussed within the Jewish community.

That’s right.

Why do you think that is?

[Laughs] because we’re funny people, I think there’s very much a reluctance to discuss any kind of chronic disease within the community. Part of the problem, it must be very difficult for you to understand probably, but part of the problem will be for marriage partners. You know, in the strictly Orthodox community we have arranged marriages and I think as soon as people view it as a problem, as a health risk, they don’t want to know.

That doesn’t mean to say that you would not tell people at the time, but you don’t want people to be talking because when people talk they usually get things wrong. So, I think that’s where the reluctance comes in. I think that’s what’s feeding it.

Yes. But you have been quite open about your son’s illness?

No; not at all. In the beginning we didn’t want people to talk about it. Everyone relates to it in a different way. I didn’t want to make a huge issue of it, but I knew that people talk and get things wrong and I didn’t want everyone chattering away besides which, I think, coping with it, I didn’t want people talking to me, I couldn’t cope with that, you know. I think there is a psychological aspect there, the immediate family members knew. But I didn’t need everybody driving me mad whenever I was out on the street, I couldn’t deal with all that, and nor, more importantly, could my son. He was just coping with living day to day, existing. So, that we certainly didn’t talk. We had to tell the school. That’s something you need to go through. That’s the big issue with children. We had to inform the school because he was going to need time off school, he was going to need treatment, and, you know, all sorts of things.

And what we decided to do was just to take the headmaster into our confidence and tell him exactly what it was. He asked us what to say to the other teachers; we did not want him to tell exactly what it was. We asked that he should just say he has a stomach problem and he isn’t well and leave it at that, those that perhaps picked up what it was; fine. But I didn’t want to talk. And I think that was a sensible decision in the circumstances of our community or whatever I think that worked quite well.

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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.

Relationships – Jewish health

We asked people whether they felt that the health condition they or their child were experiencing had an impact on their relationships. Most of them...