Linda - Interview 13

Age at interview: 50

Age at diagnosis: 15

Brief Outline: Linda was diagnosed with Crohn's Disease, aged 15. She has been on medication since and has largely controlled any flare ups with rest and occasional periods on steroids. Linda feels very well supported by her husband and medical team.

Background: Linda is married. Ethnic background/nationality: Jewish British

More about me...

 Linda was hospitalised when she was 15 and eventually diagnosed with Crohn’s Disease. She was put on medication and has managed to largely control any flare ups through bed rest and the occasional course of steroids. For Linda, Crohn’s hasn’t greatly affected her life but has always been a part of it and she wonders whether her decision to work from home in a self employed capacity is related to the difficulties Crohn’s can cause. Now she has reached her fifties, Linda is more accepting of her Crohn’s but also self aware of the possible side effects of the long term medication.

Linda is very well supported by her medical team and her husband. She identifies very strongly with her Jewish background and feels that her cultural background has influenced the way she has dealt with her condition. 

Linda was diagnosed with Crohn's as a young girl and contrary to what her mother had been told it...

And one thing that sticks in my mind particularly all these years down the line, is that my mother must have been told by some medic or another at some point, that it would be difficult for me to have children as a result of having Crohn's Disease. I didn’t know she’d been told that and nobody had ever said it to me. And when I got married in the early eighties and a few years later thought about having children, I just ploughed into this as any person would and when I told my mother I was pregnant she was absolutely amazed [laughs] and it was only then she’d told me that she’d been worrying all these years about the fact that that it might be difficult for me to have children. It turned out not to be the case at all.

 

Do you tell, I mean do you talk to your partner about…?

 

Yes.

 

You’re very open about the whole thing?

 

Yes, yes. Yes. I am. I’m a bit protective of him. But actually neither of us can cope with the way our lives are if we don’t talk about things. He has various health issues, different things. He says it’s not so serious. Perhaps he’s right, but we don’t look at it in terms, it’s a competition. So yes, I do talk about it. And because of the nature of my illness, he needs to know about it, because otherwise we couldn’t travel together, we couldn’t, you know, it would be shutting off a big part of life in a way. Even possibly, in the most extremely possibly meaning not sharing a bedroom even. So, I mean, not that there’s any real implications in that, but I could imagine, you know, a situation where you could feel so uncomfortable at night and perhaps getting up so often in the night, disturbing somebody else that that might have to, if you didn’t talk about the problem that could become a big issue. 

Linda realises that she probably chose to be self-employed because it was "safer" in terms of...

I think that subconsciously the choice of work that I’ve done, low key, administrative business stuff, and then when the opportunity to work for myself at home came up 23, 24 years ago, it, that I’m sure that was part of my decision to do it, that it’s safer somehow. Working for myself, the thought of being ill and having to take regular time off from an employer, you know, the diffi… yes, I have worked outside the home and I’ve had full time employment, you know, but I think that running my own business where I have control over when I work was definitely part of having Crohn's Disease.

Linda's not convinced that the Jewish diet is a factor in Crohn's disease.

Can we talk about your being Jewish and whether that’s had an impact on your health in any way, or any significance would you say?

 

I think, I don’t think it’s had a major impact, but I’m very, I identify very strongly as being Jewish. I always have done, that was my upbringing. And looking back now I think I can see that I always had the attitude that having Crohn’s, there’s a lot worse things that could happen then having Crohn's Disease, especially for me, because although I’ve had periods of illness, there are a lot worse things, and I think that’s tied up with my Jewish history and Jewish culture, cultural background. Illness is something that I was aware of in families and so on. I was aware of Jewish and non Jewish children who were disabled or something like that. So I think I always had it in context, no in proportion and I think that’s got something to do with my heritage. But as I said to you before, there’s nobody else in the family that’s had it, don’t know that many people who have it. The people I do know that have Crohn's Disease are Jewish, but that’s because I know more Jewish people than non Jewish people probably. Or I certainly know more Jewish people well enough to have that conversation. Yes. I often wonder, you know, about the prevalence of it in the Jewish community because that piece of information did come my way quite early on in being, in having Crohn's Disease but I don’t know. I mean if it’s connected with food that doesn’t really work because we’ve all had such varied diets and Crohn's Disease is still being diagnosed probably in, with more frequency now, than it was when I first had it, and our diets have become even more diverse in that time. And if it’s to do with stress, then, well maybe, but then why isn’t it as prevalent in communities that have high stress levels or – I mean we joke about it, but obviously there are, you know, groups of people living under certain conditions or who have it in their history, their background where guilt and stress are kind of part of the psyche, part of the makeup. So I don’t know. If it is stress related then that makes more sense to me, and perhaps that is part of my Jewishness and the illness. But I definitely think the way of dealing with it is part of my Jewishness.

 

As a young adult, Linda found being unable to eat normally, chronic diarrhoea and weight loss...

Crohn's Disease is very debilitating inasmuch as it causes chronic diarrhoea, chronic weight loss, and all the things that go along with that. For a teenager, an adolescent it’s particularly traumatic because it can mean restricting the natural growth that’s going on at that time. In my case it didn’t happen, because I think I was probably out of puberty by that time. But it can be very traumatic.

 

But I was unable to eat properly, I had no body strength, because I’d lost such a lot of weight. And very listless and lethargic and it took a long time even after I came home to build that up and be able to eat normally and not feel that you needed to be near to a toilet all the time, which socially is very, very difficult. But after a fairly, well in one way it’s a long time, because when you’re a teenager you want to be able to get on with life and do everything, but looking back now over a period from the distance of years, it probably wasn’t all that long.

 

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

 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. 

One of the steroids Linda took for Crohn's disease caused a rash and sensitivity to sunlight.

Over the last Bank Holiday weekend, the weather was not particularly good, but we drove down to Cornwall in our convertible with, the roof was open as it was dry. And we had one good day of sunshine. Not, it didn’t feel like particularly strong sunshine and we went for a lovely walk along the cliffs and in the evening I had come up in the most unbelievable rash, just one the little bits of skin that had been exposed. Anyway, I, when we came home I went to see a dermatologist, because this wasn’t just ordinary sunburn and it didn’t seem like the sun could possibly have been strong enough to cause that kind of sunburn and another rash on that… The long and the short of it is I’ve now found out from this dermatologist that one of the drugs I take for the treatment of my Crohn's Disease is most likely to be the cause of this, because it creates high sensitivity to sunlight, which I didn’t know. When I looked at the information in the table, in the pack, it says on it, do not sunbathe. Well I can swear to you that when I first started taking those tablets, it didn’t say anything like that and I have no recollection of anybody ever telling me that. And I’ve had this problem with sunlight and a rash for about four years. It’s got worse and worse. So its, that was one bit of information that didn’t come to me, and actually has had quite a big impact in the last few weeks, because we tend to go off to hot places and it’s … [laughs]. So I was really quite shocked that that had passed me by. So I started looking on the internet again, which I haven’t done for years, looking for information.

 

So you’re hoping to change that medication?

 

I spoke to the nurse practitioner at the [hospital] and she said, “Well you …” She looked at the dosage and she said, “You could halve that if you wanted to.” So that’s what I’m doing and I hope that that will reduce the impact. Whether it will do it in time for my next, for my holiday I don’t know. [laughs] But yes, it does mean I will look at the possibility of coming off that drug, and having another look, like a refresher look if you like at the side effects of that drug. You know, it has made me question whether I should stay on it any longer.

 

Linda would love to be able to find one food she could avoid that would make taking tablets...

No. Did you, have you found that changing your diet has helped?

 

No. I have never, it’s very frustrating, you always want to think to yourself, there’s one thing there, if I stop eating that I won’t need those tablets anymore, but it’s the process of eliminating the foods that could be upsetting you, to me I think is worse than the illness. I want to get on with my life, and eat sensibly and eat everything I want to. I do, there are some things that I’ve starting avoiding, but there’s nothing I’ve stopped eating. And I don’t really know how much of my avoidance is just a change in my taste and how much is a bit thinking perhaps this is inflaming my digestive system.

 

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

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.