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Jewish Health

Effect on life

We asked people about the effects their health condition had on their day to day lives. Some of the conditions people experienced were more life-limiting than others in terms of symptoms and treatment regimes. Nevertheless, even those who ‘only’ carried a faulty gene and had not experienced acute health problems from this said that knowledge of their condition or genetic make-up had made them think differently about certain aspects of their lives.
 
For a few people, the main effect of finding out about their condition was a heightened sense of awareness and watchfulness. Those with Factor X1 Deficiency would make sure to tell doctors and dentists about their higher risk of excessive bleeding and carry a card for emergencies, but their day to day lives remained mostly unaffected.
 

Helen was advised that it was all right for her to continue to donate blood after being diagnosed...

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Helen was advised that it was all right for her to continue to donate blood after being diagnosed...

Age at interview: 77
Sex: Female
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And our uncle as well yes. By that time I had been a blood donor for 30 years. So I knew that I didn’t have a particular problem with the level that I had. I did of course get in touch with the National Blood Service straight away because I was slightly more concerned that I might be giving people blood that was actually doing them, as much harm as good. I was reassured by the National Blood Service that this wasn’t the case. The doctor I spoke to had not actually come across the condition before, which gives an indication as to how uncommon it is. However, he told me that I would not be doing anybody any harm, because people would not be receiving my blood in sufficient quantities to dilute their natural Factor XI level. So they were happy for me to go on donating blood as long as it was not causing me any problems. It never has done and I continue to donate regularly. 

For those carrying a BRCA mutation, the knowledge that they had a greatly increased risk of developing breast and ovarian cancer persuaded most women to have preventive surgery. However, worries about the cancer returning or passing on the gene to future generations remained.
 

Having her ovaries removed hasn’t affected Hayley much, but she feels unsure about having a...

Having her ovaries removed hasn’t affected Hayley much, but she feels unsure about having a...

Age at interview: 39
Sex: Female
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Do you feel different not having your ovaries do you think?
 
Not at all. Absolutely not at all, I think it’s like, because I knew, I had already decided not to have any more children. And children, I thought, no not at all. Makes no difference, they don’t weigh anything; I didn’t come out any lighter. The size of olives. Whenever I think of olives, whenever I see olives, I do think of my ovaries, and having, I mean I’ve got so many stretch marks and God knows what. There’s no scars or anything particularly, well I hardly have, you know, so it was, and they don’t even stitch you, they glue you.
 
So I went to the GP who like you know, and they said, “How often you often do check your breasts. I said, “Oh, nearly every other day.” And she checked. She said, “There’s nothing wrong with you.” I said, “What are those two nodules?” She said, “[name], they’re your ribs.” And I just needed that just to think I could get a bit of perspective on this. Just because, I don’t smoke, yes I drink, but not, you know, addictively, you know. Since I started work it’s increased, but you know what I mean I’m not an alco… and I just needed that, just to, as I say put things in perspective, but I’m not going to get breast cancer overnight.
 
It’s not just going to wake up with this huge lump, you know, or huge pea sized, you know, but I have read up on it. I know how to check my breasts. I know as best as I think I know, you know, using which bit of the hand. I do my best. And of course, when you go to the clinic, you know, have, it’s really odd, you have like this young doctor, who is chatting to you, pressing your boobs, you know, and saying, “Well one’s lower than the other.” “Well yes, okay. I’m not perfect,” [laughs] you know, and that kind of thing. You know.

But I think once you’ve had kids I think your bodies like a piece of meat anyway. I don’t think it really matters. 

Several people described how finding out that they had a potentially life-threatening illness had changed their attitude and made them reassess their priorities in life. For a few people, this meant ‘living life at double speed’' being more active and doing more things than they otherwise would have done. A few people who had cancer or had recovered from cancer talked about ‘bucket lists’ - things they wanted to do – and had done - while they still could.
 

Harriet lived her life at double speed as she was never sure how much time she would have left.

Harriet lived her life at double speed as she was never sure how much time she would have left.

Age at interview: 55
Sex: Female
Age at diagnosis: 20
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I had a pretty wild life. I had a lot of fun. I married and I came to live in England and I eventually got divorced, and then I had a number of interesting relationships and partied hard, and worked hard and built a career. I felt that I was doing everything double-time though. I felt like life could be very short. There was a constant Sword of Damocles hanging over me. Every year I’d go for these checkups, well initially it was more frequently than a year, but then after five years, it was annual for about twenty years.
 
There was a movie out recently called the “The Bucket List”, well I was making bucket lists long before that movie, I made a list of all the things I wanted to do and the people I wanted to see and acted on it before I kicked the bucket. Some of them were very simple things like being with my family, which I always knew was really important. What comes very much to the fore is the people you love; they are more important than anything, for me. 
 
There were some experiences that I wanted to have. I wanted to see the Grand Canyon and so I did. I wanted to see the two big Botticelli paintings that I’ve adored all my life again. And I did. And so on. So I had lists like that but, after that year I started to take the years for granted.
 
 

Karen has got a visit to Auschwitz off her “bucket list”.

Karen has got a visit to Auschwitz off her “bucket list”.

Age at interview: 48
Sex: Female
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Something I’ve always wanted to, don’t ask me why, well I know why because both my girls went with the school to Auschwitz and I was very intere… obviously being Jewish, very interested in it, and once I heard what they had to say about it and everything, I thought I want to do that, and I think every Jewish person should do it, that hasn’t been, because it’s just, now I’ve been, I just, it’s just ‘oh my God how that ever happened?’ And to anyone, regardless of colour, faith, whatever they are, it should never happen again. And unfortunately in the world, even now genocide is happening and I just think it’s just, it’s just awful, really awful, and it really got me. 
 
But I did think to myself, building up to going to Poland because when we came out the room, when I was told I was in remission and the professor had said about doing everything now, but at that point, I think my brother would have paid for anything, because he was just so happy because we’re very close because I was okay. I could have said the Seychelles. I could have said I’ve never been to Dubai, I haven’t been to India. I could have said anything. No I said Poland for the day [laughs]. But I’m glad I’ve been. Now I’ve done it I’m really glad that I said that, because probably prom… because he wanted to do it for me, it did make me do it, so I’m glad. I’ve got that off my bucket list.
 
 

David and his wife try and visit places at short notice as much as possible between tests and...

David and his wife try and visit places at short notice as much as possible between tests and...

Age at interview: 66
Sex: Male
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Well it’s changed our lives insofar as, we just get on with things. I mean, I suppose when you’re in your sixties you’re, normally you sort of relax and let things happen, and maybe don’t plan things quite as well as, as one might, but we, I recognise that there are things, places to go, things to do. And we just get on and do it. We’re more active than we would have been. We actually make things happen and go to theatres and go and visit places and do things probably more than we would have done.
 
And the problem is that we can’t really book anything in advance, this is the... we can’t travel, I can’t, as a result of I can’t, we can’t get travel insurance. Not without paying a ridiculous amount of money. So we don’t book anything, because I’m always only subject to, I’m only as good as my next blood test. So we’ve never been able to book any holiday at any length of notice. But we book short term, and we go away. We’ve been away, I think we’ve been to about seven or eight countries in the last three years but always at short notice. But it’s not a problem. For example, we went to South Africa in January, but I booked on December 31st and went on the 5th January, because I knew that my next appointment was late January, so I squeezed in three weeks holiday in South Africa, before the next appointment.
 
One man who developed Crohn’s disease in his early twenties said that having his health taken away had fed his recklessness as it made him realise that a large part of his well-being was out of his control. Some people also said it had made them re-evaluate their relationships, bringing them closer to a partner, or finding out who their friends really were.
 

JP got on with his life despite the debilitating effects Crohn’s disease had on him, but he felt...

JP got on with his life despite the debilitating effects Crohn’s disease had on him, but he felt...

Age at interview: 45
Sex: Male
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This certainly coloured my life. I have been much better in the last ten years. I have been able to do things like go to the gym which I certainly wouldn’t have been able to do previously when I was going to the loo ten times a day, and, I suppose made me sufficiently angry that I’d been ill that I would smoke and party a lot, because I just figured that your health was not within your own gift in any event.
 
So it was hugely debilitating for many years, but you crack on, and you get on with it, and it doesn’t give me any difficulties at all anymore.
 
I mean in terms of employment or relationships what sort of effect did that have on your life?
 
You get on with it to be honest. It doesn’t make any difference. I don’t think… it didn’t stop me being employed, and the lifestyle I was leading at the time, I was partying hard, so you know, I was in no way invalided by going to the toilet ten times a day. And at the time I think it just shows how you are in life, you get on with what you get on with it, you don’t actually acknowledge that you have a great, you know, that you have a great difficulty. I mean yes, there’d be some days... there’d be some days when I’m sure, my functioning, the utility, the only way I could work was hampered by, I’d frequently go to the toilet six or eight times a day. I’d frequently have about twenty minutes feeling weak after I’ve been to the toilet. But it doesn’t actually stop you doing it.
 
Can you remember how you felt at that time, experiencing that?
 
Well I mean physically you felt exhausted after a horrible session on the toilet like that, you just want to go and lie down for half an hour. And I don’t, I mean I feel I’ve used the word angry before, but I don’t think I was angry about it, but I smoked cigarettes and partied. And I just thought, oh fuck it. [small laugh] I definitely, it definitely fed my recklessness because I considered that my health had been taken away from me in any event, so I might as well just enjoy life as I choose. 
 

After surviving breast cancer, Simone decided not to get ‘stressed out over silly little things’...

After surviving breast cancer, Simone decided not to get ‘stressed out over silly little things’...

Age at interview: 44
Sex: Female
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Have you changed any part of your lifestyle, sort of the way you’ve lived your life as an outcome of this experience?
 
One of the main things was the way I treated certain people. I really found out who my true friends were at that time, and they were absolutely fantastic. But there were a few people who I felt just weren’t there or went out of their way not to be there as such. And I, I, don’t need them in my life [laughs]. I mean they weren’t close people that I saw that much of, but I just thought well no, you know, if it had been them, I would have been there for them. I wasn’t expecting them to do anything. Just the occasional phone call that sort of thing. And that was one thing, it did change how I related to some people.
 
And also to start with, I decided I wasn’t going to get stressed over silly little things anymore, you know, just be thankful to be alive etc. And I kept that up for about eighteen months which I think is pretty good going [laughs] because I do get stressed quite easily. 
 
 

Carol was 'knocked sideways' by having an operation for Crohn's disease as a young person.

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Carol was 'knocked sideways' by having an operation for Crohn's disease as a young person.

Age at interview: 66
Sex: Female
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Emotionally how long did it take you to recover from that period of time?
 
I think it knocked me sideways having such a major operation at such a tenderish age. I was the first in my family of all my cousins of which there are many, to have such a serious occurrence. I was singled out for special treatment by my family inasmuch as ‘don’t do this’, ‘I’ll do this’, ‘don’t lift that’, ‘I’ll lift that’. Everybody sort of walked around me with cotton wool and its something that I wasn’t used to. So emotionally… that’s a good question. I would say for the best part of nine months I wouldn’t go out. I did have a social life before all this happened. I had friends of course. We would go dancing or wherever we would go mixing in London’s Jewish social scene. But this knocked my confidence and it was very difficult. And friends move on if you are not in contact with them and at the age of 26 it was really difficult to… they found boyfriends and husbands and I was not even stepping the toe on the dance floor.
 
So it did take me quite a while to get back into actually where I was. I returned to work and obviously you have office friendship, but they’re not the same as personal friendships. It did take me I would have thought, coming up to a year to get myself back to where I was. And that was a big thing.
 
 

Linda explains why she feels her Crohn’s disease is always a part of her and how this has become...

Linda explains why she feels her Crohn’s disease is always a part of her and how this has become...

Age at interview: 50
Sex: Female
Age at diagnosis: 15
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And those courses of steroids have taken their toll on me in other ways that are probably just becoming to come out now in middle age. Oh I’m middle aged. That’s a thought. [laughs] But I haven’t been taking steroids constantly over the years. I’ve probably in 35 years only taken for a total of about five years. So at a guess. So …But once I had those, the steroids and the other medication I did recover very quickly I think, because they do work very quickly. And I certainly was able to go back to school, do my O levels, and didn’t really look back in any serious way after that. Although it’s always there in the background.
 
Can I just ask you, you say it’s always there. But it hasn’t affected your life greatly since that period in your teens?
 
Right.
 
Can you explain what you mean by it’s always there?
 
Sure. It’s never stopped me from doing a job. I’ve never wanted to do the kind of job where perhaps having Crohn's Disease would be a problem. I should imagine in an active, very active kind of job it might have more of an impact. But it’s hard to describe, it’s a part of you which is always there, and you can ignore it for most, in my case, I can ignore it for most of the time. 
 
Every now and again some people say to me, “Oh you have Crohn's Disease don’t you?” And I have to think, oh yes, that’s right, I do. And I think as I’ve got older that its become, its come more to the front of my consciousness, than when I was younger. But it’s always there in the sense its part of you. Even though you may not feel ill, it’s not something that goes away. So, it’s a bit like having a foreign body in you. When somebody suffers with cancer they, they say the same thing, there’s something in there, they may not be feeling ill on that day, or they may be in a period of remission or whatever it is, but it’s still in there, and you can forget about it for some of the time.
 
Several people said that their condition had made their lives more unpredictable. They would experience good days and bad days, but frequently it would not be possible to know in advance. They talked about the difficulty of planning ahead and the need to take each day as it comes. A few people also mentioned difficulty in getting life insurance and travel insurance as further practical complications.
 

Stewart and Marilyn no longer plan ahead for longer periods, but instead set themselves small...

Stewart and Marilyn no longer plan ahead for longer periods, but instead set themselves small...

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Stewart' And this is how we look at life these days. Anything further than the end of the year, we don’t, we just have take it as it comes.
 
Marilyn' I was always a great future planner and I could tell you what we were doing all next year, because I work like that. I plan my years. But now, we really, can’t plan. Basically because of the tired… the tiredness that it’s left. And you just can’t plan anything. We actually went out last Sunday for two and a half hours didn’t we?
 
Stewart' Hm.
 
Marilyn' Out the blue. Because the weather was good, and when you came home you had to go to bed didn’t you?
 
Stewart' Hm.
 
Marilyn' And we’d only gone, what thirteen miles.
 
Stewart' Well we was out, I drove, what 25 miles I suppose. But it took it out of me, but it’s better than sitting at home, watching TV all the time.
 
Marilyn' Yes. We still have to think about what are we going to do? You know, and that comes up in now as second nature. If we know we’re going somewhere he’ll think well yes, okay, I can do that, but if I do that walk am I going to get back? Am I going to be really tired? So you have to think more. You really do. And, it is you take, you can’t plan. You cannot plan because we went to a wedding didn’t we, and you really had difficulty in staying there.
 
Stewart' oh yes.
 
Marilyn' And it was a day in bed the next day. You know, he’d had a rest in the afternoon, but we got to the wedding. We left at 1 o’clock. We got home about midnight. And he wouldn’t, he was totally wiped out. He was green. And people don’t understand, because they look at him and they say well he looks all right, why isn’t he going out to work? And you get to the point, you can’t say any more, but how many times can you tell people what you see isn’t what you’re getting? And I think that’s the important thing.
 
Stewart' Well I think it’s all taken so much out of me, I think what the doctor tried to explain is that because of my age, I haven’t got the years in front of me, to build up what I’ve had of the years behind me in strength and stamina which you build up over years. And because it virtually wiped me out I can’t get it back because I’m probably too old to do what I was doing 25 years ago.
 
Marilyn' It’s changed my life completely. I should have retired a year ago. I can’t see me being in a position ever to retire. I’ll get too old for my job and they’re going to ask me to retire, and that’s when I’ll retire, when I can’t do the job any longer. But it’s changed our lives hasn’t it? Completely.
 
Stewart' Oh yes.
 
Marilyn' And I think for a man that’s very hard deep down to accept. You know, he was always the provider. I was the provider for the holidays, and the cruises and the, you know, let’s go out to dinner three times a week or you know, that’s what I provided, the kids wanted something. We’re going to be grandparents for the first time in seven weeks time. That would have been, yes, we’ll go and do that. We’ll buy this, we’ll buy that. Things have changed. And it is knock on effect and people need to be aware that to me this is a hidden illness. 
 

Gareth’s ability to spend time abroad has been affected by a six week time limit on using a basic...

Gareth’s ability to spend time abroad has been affected by a six week time limit on using a basic...

Sex: Male
Age at diagnosis: 13
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The only struggle I have with it, I mean I’m lucky, I’ve had psychotherapy. I’m a stand up comedian, so I’ve been able to vent and have cathartic ways of getting rid of my feelings about it all. But I’ve accepted it that the only bugbear I have with having the line, is that I would, you know, I’m going to Australia and I’m going for six weeks, because six weeks is the maximum amount of time the hospital will let me use a generic mix of feed. Instead of using my normal nutritional feed which has to be refrigerated, because I’m travelling, I’m taking a basic generic feed, that will do the job, but it’s not as good for me as my normal feed. So they only let me go for six weeks. 
 
And personally I love Australia and you know, there’s nothing I would like more than to travel round the world for a year or so, doing stand up in various countries and I can’t do that. So that’s where I, that’s the only thing that still grates, is just my freedom slightly being, you know, that every holiday, and even this holiday to Australia was not, it’s a working trip, but this trip to Australia, I have to pay to get the nutritional fluids sent to Australia, so that’s probably going to cost me almost the price of my ticket to go to Australia, just to get the feed sent over. So the money I earn there won’t cover my trip at all. I won’t make any money from the trip, but I’ll just get to go to Australia for six weeks, you know. I’m happy about that.
 
 

Marcel is gradually having to give up sport because Crohn’s disease has caused osteoporosis,...

Marcel is gradually having to give up sport because Crohn’s disease has caused osteoporosis,...

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So, in that six months. So I mean I was eating like there was no tomorrow. So I was playing five a side and a lot of tennis. But it still wasn’t enough to lose the weight from me eating. So I took up marathon running which I enjoyed… so that was… I became quite compulsive. And I enjoyed the pain which you get when you’ve run 15 miles. I went to New York, Berlin, Paris. I loved the big city marathons. I ran about ten London marathons and I was never told that the, having Crohn’s affects the calcium in your bones. So they were never formed properly, so therefore my body couldn’t take the pounding of pavement that I was imposing on my body. So having run twenty marathons in what fifteen years I remember my last London marathon was about seven, eight years ago. I didn’t, I didn’t realise till the last week before that marathon that I was struggling bending down doing my shoe laces, because I had terrible pains in my hips and I put it down to my shoes weren’t good enough, so I bought new training shoes. 
 
But I realised there was a problem and after the run I went to see a doctor and you’ve got osteoporosis and you’ve got arthritis, what you’re doing is no good, you’re pounding pavement, you’re running 80, 100 miles a week on pavement. I wasn’t running on soft ground in parks and yes, I went to see a specialist. I’ve got it in all my hip bones and joints from my tennis, I’ve got it in shoulders. Yes, I’m weak. I’m weak in all the joints, and that’s something else Crohn’s caused. 
 
So I had to give up marathon running. I carried on playing tennis and I played quite a good standard, a good game and I like a long hard tennis match, but the twisting and turning was hurting my hips so much, that there was one tennis match I played for three hours, really tough and I couldn’t properly walk for two days afterwards and I had to give that one up as well. So I took up cycling which I still do now. I quite enjoy it. So I do, desperately miss the sport.
 
 

Cissie has good days and bad days. On bad days she can feel quite down, on good days she likes to...

Cissie has good days and bad days. On bad days she can feel quite down, on good days she likes to...

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Well I suffer from familial dysautonomia, it’s a Jewish genetic disorder, as you’ve probably gathered. It’s a rare condition. My experience of being a sufferer has had ups and downs. It’s like going through an obstacle course. You don’t know what’s going to come next, with this condition. You can have good days, you can have bad days. I do have a degree. So I did achieve some things in my life. And I’m a volunteer in an organisation called Active Volunteering for Disabled People. It’s based in [town]. 
I’m also involved in a website for people that are disabled in the Jewish community, I set up with a friend. And so that keeps me a bit busy, and so I’ve got appointments from time to time. And they can vary in lengths and times and where they are
 
And I just get on with it. As I said there are good days and bad days, and the bad days I feel nauseous quite a lot or just feel down. And the good days I can do things, like going out. So, yes, I’ve also got a carer twice a week. So we do go to the gym together and I do exercises. And I also go to [place name] with her sometimes and I hope to go to the cinema maybe and take things from there. 
But it also depends on how I am on the day whether I do go out into town or stay in.
 
Several people with Crohn’s disease described a pre-occupation with knowing where the toilets were located wherever they went - even during periods when they felt well and were unlikely to need a ‘quick escape’. Harvey said he would still travel despite his stoma, but would choose countries which were known to have good sanitary facilities. They resented the fact that their condition had affected them psychologically as well as practically in this way.
 

Sylvia explains how a flare up of Crohn’s affects her.

Sylvia explains how a flare up of Crohn’s affects her.

Age at interview: 74
Sex: Female
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Does the Crohn’s flare up in different parts of your intestine or is it always in the same place?
 
No it’s always in the same place, sort of on my left hand side at the top, you know, sort of under my waist, and then it sort of spreads across the stomach. And, you have these griping pains. I mean the times when they’ve really been bad, they’ve felt like contractions, you know, really sort of gripping. 
 
And, this time also my bowel was twisted, so, and if I have the pain I’m aware of it when I’m walking. My inner, certainly with my left leg, I, I am aware of it. And when it’s been really, really bad, if I sort of bend over like this, it’s as though you’re sort of crushing something. Because of, you know, this is all the inflammation, plus a lot of the time, you want to go to the toilet, you have diarrhoea you know, maybe three, four, five, six times and sometimes that’s spread over a day. When I’m well I would probably want to open my bowels three or four times, usually in the mornings, then at night. So what I find, if I’m going out, I need to know where there’s a toilet because when you want to go, you want to go. It’s quite hard to control. So... and certainly when I go on holiday, you know, one of the first things you do is check out, well where are loos? And there’s always this worry, if you’re going on say a coach trip as it were, are they going to have a toilet? I mean most of the time you don’t need it, but you need to know it’s there.
 
 

Linda doesn’t like to think of herself as an ill person. Her Crohn’s is more under control these...

Linda doesn’t like to think of herself as an ill person. Her Crohn’s is more under control these...

Age at interview: 50
Sex: Female
Age at diagnosis: 15
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 Yes, I was just thinking about the emotional…
 
Yes.
 
… the emotional control.
 
Yes. That’s a difficult one, because you want to be a well person, and if 95% of the time you are well, you don’t really want to think about the other 5% of the time too much. And, when it is 95% of the time you’re well, you can actually just say, you can pretend and say, “I’m not ill. I don’t have this.” It may be lurking in the back there somewhere [laughs]. But there comes a point where you, you have to say, “Yes, I do have this. I do have to, you know, hands up to it.” And that’s taking control, I think of it. But it’s difficult. As I say you don’t really think of yourself, or you particularly don’t want to be seen as an ill person. And more in the last eight or nine years, I have more reasons for not wanting to be seen as an ill person, because my husband’s first wife was, died under very difficult circumstances and I don’t like the thought of him having another ill wife basically.
 

The real issue is the… needing to be near a toilet all the time. That is, that can be a problem. And there are other socially unacceptable symptoms, which, you know, at its worst means you really don’t feel much like going out. But it hasn’t happened to me like that for a long time, because the medication I take now, which is non steroidal, it seems to work. But if I did get a flare up I know, you know, that it’s just a case of popping some extra pills and within, as I say, a pretty short time, it’s, it would be back under control. So I might lose a day’s work, may be two. 

 

Sylvia carried an emergency toilet card from the National Association for Colitis and Crohn’s for...

Sylvia carried an emergency toilet card from the National Association for Colitis and Crohn’s for...

Age at interview: 74
Sex: Female
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Have you found any way of managing that process and the anxiety around toilets?
 
Not really. You know, unless you’re on familiar ground. I mean if I go away as I said, one of the first things that I will do is find out where there is the toilet. One of the things I used to... what is it? There’s the Crohn’s, National Crohn’s and Colitis thing and at one time, I belonged to that for a while, then decided not to continue. And one thing they did do, they would issue with a card, you with a card, saying you know, please let this person use the toilet, because you know, they have an illness and that sort of thing.
 
I never used it. I think partly the fact, I probably would feel, yes, would have felt too embarrassed to use it. But maybe, you know, if I was that desperate... I remember last summer I was in Lithuania and was staying in, in the hotel, fine, and usually it’s okay if you are in, you know, a restaurant or a café. Anyhow nothing seemed to be open, and you know, I’d gone for a walk for a while and I had the urge I needed to go to the toilet very, very quick. I sort of looked round. I thought do I knock on someone’s door and I can’t do that. Then there was some workmen and you know these portaloos? And I thought shall I ask them. Am I that desperate? Anyhow I thought, no, no I can’t do that. And I just about managed to get back to the hotel in time. But you know, it was, you do feel pretty desperate. And… so …
 
 

Less energy and difficulties eating out have affected Rosalynde’s experiences of going out.

Less energy and difficulties eating out have affected Rosalynde’s experiences of going out.

Age at interview: 70
Sex: Female
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It does affect your life a lot. It’s not just what you can’t eat or can eat, because being Jewish affects that but it’s that you are so aware of not feeling well and having pains. I’m sure this applies to people with cancer and all sorts of things. And also what I haven’t mentioned apart from the colonoscopy. One of the side effects, or one of the effects, is that it affects your bowels, so that you go through spells when you can go ten times in the day, pass motion ten times in a day and then you might get constipated. And then, so you can be caught out and that affects you too, because if you go lots of times in the day, you’re quite exhausted at the end of it [laughs]. That’s it yes. I didn’t mention that I should have done. It’s quite an important component of it.
 
So has it changed how you are leading your life at the moment would you say?
 
Inasmuch as my husband and I like walking and I can’t walk very far because I haven’t got the energy to, so that’s changed it. We don’t eat out very much. We weren’t great eaters out but like yesterday we went to a lunch time concert in London and in the past - it finishes at two - we would have gone out for lunch. And it’s not worth it because most lunch times things are with bread, or you know, or pasta or something and it’s such a palaver, I said, “Well let’s go home.” So its affected that. And we had, we had intended to go away for the weekend to one of the cities on the continent, Budapest, but I decided if you go to a city how far do you have to walk to see anything? So it has affected our, our life in that way but not so terribly, terribly, you know. I wouldn’t book a holiday where the diet was restricted inasmuch as, you know, it would be a waste of money, a waste of time, not being able to eat things and not having, not having food that you can eat. 
 
Many people said it was important for them to feel that their lives were not dominated by their health problems. Many gave up things they had enjoyed previously, but they tried to focus instead on the things they were still able to do, and many felt proud about what they had been able to achieve despite their condition. One woman with Crohn’s described how she maintained a love of food despite her condition and would adapt recipes to suit her dietary requirements.
 

Harvey trained as a teacher and held down a high-energy job despite his Crohn’s. Over the years...

Harvey trained as a teacher and held down a high-energy job despite his Crohn’s. Over the years...

Age at interview: 63
Sex: Male
Age at diagnosis: 56
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The Crohn's Disease is still there. And the bowel works frequently so that I have to empty the stoma bag, could be somewhere between eight and twelve times in a 24 hour period. Which is a bit… well I’ve got used to it as I say. But it means that if I travel I have to be a bit careful. I have to try and make sure that I’ve got supplies, and possibly a change of clothing with me at this time. It hasn’t stopped quite drastic accidents happening which again I’ve kind of got used to dealing with. However traumatic, it’s a case of having to, and so you get on with it. 
 
 

While Gary is unable to do some of the things he used to enjoy doing, he has taken the attitude...

While Gary is unable to do some of the things he used to enjoy doing, he has taken the attitude...

Age at interview: 53
Sex: Male
Age at diagnosis: 35
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In terms of sort of general life it’s okay really, you know, I mean there are a number of things that I can’t do any more that I used to do, but I just take those as, you know, I knew that was going to happen. I mean, I used to do a lot of amateur dramatics, but I don’t do that anymore, because there’s certain, there’s no real. I used to do musicals mainly and there’s no possibility of me dancing now. So I can’t do that. 
 
And my memory is going. Although they say that my memory, the last time they tested my memory it was okay. But I mean I used to be able to get up and debate with people and remember all the words I wanted to say, and yet, now, often I forget a particular word, like dyspraxia. I couldn’t remember that. And the other thing I’ve noticed is that when I’m driving, if I drove to somewhere for the first time I would know the route after that. I would never have a problem going there again. Now, even if I’ve been that way three or four times I still can’t remember it. So … you know, that is a problem there.
 
But, so I can’t do that, and I used to play the guitar but I can’t move my fingers fast enough anymore. But apart from that, I don’t think I’m particularly restricted. I can’t walk very far. But I get I get motability allowance. So I basically I think you’ve got two ways of looking at it. You can either say okay, I’ve got all this stuff and I’m just going to sit in a chair and the world owes me now. I’m solely, you know, the world sort me out. And, and I’ll just wait for the end. Or you can say, I’m not going to let it get me. I’m going to go out there and I’m going to do everything that I can do and when I can’t do it, I’ll find something else that I can do to replace it. And that’s the view I try to take. 
 
 

M explains how torsion dystonia affected him physically and how he started to walk backwards.

M explains how torsion dystonia affected him physically and how he started to walk backwards.

Age at interview: 39
Sex: Male
Age at diagnosis: 16
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The gait was... when I looked at the letter from, from Professor A yesterday, he said, “Your gait will deteriorate, and you will be able to walk albeit it in a very bizarre way.” And I think that’s the best description. It’s a very bizarre way. It’s just walking with involuntary movement of the legs and the arms, and the trunk. It’s just all over the place, it’s shambolic. You can hardly describe it as a walk, it is like a jellyfish kind of trying to walk. It’s quite, I wouldn’t say, I’m not quite sure. I actually provided a short video of my gait, pre and post-op. If you’re interested in that obviously it’s really hard to describe in words but it’s quite dramatically odd. 
 
One of the odd things about this condition is that, I could easily walk backward. But the second I walked backward, it was as if this condition only kicked in when I was in forward gear. As soon as I put in reverse, it’s almost like vanished. Well I wouldn’t say vanished, but I could walk backward, much better than I could walk forward. I remember going for a walk once in [town] area, with L and her family down there. And I remember walking for miles backward, it’s extraordinary but it’s true, walking backward was much easier. 
 
And I’m not the first person, when I mentioned it to the neurologist, he said, “You’re not the first person to mention it.” Absolutely no explanation or suggestion why. Why this condition kicks in a certain pattern of movement and not in others. But that’s the way it is. Even in the house I used to walk here to there, I used to walk backwards, before the second op. 
 
 

Sam explains what life is like with Familial Dysautonomia; the frustrations and the things he can...

Sam explains what life is like with Familial Dysautonomia; the frustrations and the things he can...

Age at interview: 38
Sex: Male
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I have an illness called dysautonomia which means you have trouble with your immune system. And I don’t get tears like other people do, and I have trouble, well I used to have a lot more trouble when I was younger with my oesophagus and things like that and episodes where I used to get rushed into hospital and things like that, and really life’s been….
 
In the last twenty years of my life has got much easier than it was when I was growing up, when I was a kid and a teenager and things like that. So, it wasn’t… I’m an actor and I try and do as many different able things, as able bodied people do, to try and just lead a normal life. And not, but sometimes, you I sometimes try not to think about the illness and sometimes there’s things that bring you down and you can, well I don’t know if all people with, with dysautonomia like me get depressed or gloomy. They probably do. I mean all people with dis… disabilities probably do get blue sometimes because you do get very frustrated and you can’t do things like other people do. Like you can’t just go out the house and hop on a tube and hop down to the airport and fly off somewhere without having to organise things which is a bit annoying. You wouldn’t be able to do that, so … So … that gets very frustrating.
 
Then there’s other things that you enjoy, you know what I mean, I could still go out and do things like normal people do. Have a very good life and I’ve been very fortunate with life and it’s… 
 
Overall, most people seemed to agree that mental attitude could make a big difference to their experience. Unfortunately, not everyone felt that they had received adequate psychological support from health professionals.
 

Sara's son struggled to cope with missing large chunks of school. Her request for him to see a...

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Sara's son struggled to cope with missing large chunks of school. Her request for him to see a...

Age at interview: 48
Sex: Female
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He wasn’t feeling well, so you do have to get the school involved. He’d missed lots of days, and they told us that once he was back onto the Modulen, this drink, you shouldn’t expect him to be at school full time. We were lucky in a way that it was over the school holidays. He was diagnosed in August. So we had this time. He was already on the medication before he was back in school. But during the festivals, so we don’t have school from September to half way through October there’s a lot of days off for the festivals. So it wasn’t full schooling so, from his point of view it was better. He didn’t miss so much. They didn’t expect him to be in school, you know, more than a couple of hours a day which again would have implications for the parent because you’d have to go and fetch him, somehow we would have and fetch him.
 
The school didn’t expect him to be in the school or the doctor?
 
No. The doctors. As it happened he seemed to respond very rapidly, so he was in school most days for most of the time. It went quite rapidly in school but it is a problem. 
 
This woman I phoned who went dead silent on the phone her, son was off school for months. And one way or another my son was off schoolquite a lot when he was really ill or was going to doctor’s appointments or hospital appointments. No, he missed a lot of school and that again has implications, because he falls behind and he doesn’t feel well. Psychologically he doesn’t cope with everything.
 
We wanted him to see a psychologist and I still think it should have been done, because it’s a chronic disease. You just have to learn accept it, but he needed to talk. He was talking to us, but not enough. He needed…. We did eventually get to the psychologist, we weren’t very impressed, nor was my son [laugh].
 
When we went to the second consultant, and we were saying, “We think he needs a psychologist.” He said, “He doesn’t need a psychologist, he needs his Crohn’s in a bucket,” meaning he needed surgery. But he was right in a way, because once the Crohn’s was sorted out he didn’t need a psychologist, but our thinking is, that if it’s going to be a chronic disease and it comes back again, God forbid, then he does need some psychological help, but we’ll wait [laughs]. Now that he feels better. 
 

Many people said that having supportive partners, friends and family who would share the impact of the condition on their everyday lives made things easier for them (see Relationships and Support and support groups). 

Last reviewed September 2015.

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