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Living with multiple health problems

Causes of health problems: certain and uncertain

Dealing with any illness can be easier when the reason for it is understood. Health problems can be caused by a person’s genetic make-up, lifestyle behaviours (e.g. smoking), exposure to toxic substances (e.g. asbestos) or other reasons. With multiple health problems, one illness or its treatment might lead to another.  The reason for a disease might become clear after a long period of uncertainty, perhaps involving a large number of tests and investigations or being referred to many different health professionals. Sometimes people never know why they have one or more illnesses. If a medical reason cannot be found, then a person might form their own ideas, such as it being down to “bad luck.” 

Occasionally  the people we interviewed were able to attach a cause for an individual health problem. Andrew linked his heart disease to smoking. Sue had been told that her colitis was caused by slimming drinks. It was suggested to Graham that an irregular heart beat might have been caused by excess alcohol consumption. Following his own experience and research, he had also found that flare ups of rheumatoid arthritis were associated with stress. Barry thought his COPD (Chronic Obstructive Pulmonary Disease) could have been caused by occupational exposure to asbestos. Nigel said that his diabetes and the “small strokes” he has had are linked to each other. Tammy’s epilepsy came on at an unusual age. This made it more difficult for her to understand why she had it.
 

Barry used to work with asbestos and he wonders whether that caused his health problems. He also smoked for forty years.

Barry used to work with asbestos and he wonders whether that caused his health problems. He also smoked for forty years.

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And I know you mentioned earlier that you worked as a bricklayer and you were exposed to asbestos.

Yes.

And they don’t know if there’s any link.

No, I used to, when it was raining, today you get you get paid, but when it was raining, you never got paid if it, which means you work in all the elements. So we used to keep one house for dry weather, for wet weather and one, and we used to go and nail asbestos garage roofs on inside the garage. And if it was very cold, we’d shut the door and you’d be in the garage working, sawing asbestos and you might put a blanket across your nose, you might and I often look back at that stage and think, “I wonder if that’s what caused it?” Because it wasn’t until forty years later that this came on.

And I think before we started, your wife mentioned as well that you’d given up smoking by that point or?

Yeah, I used to smoke quite heavy until I had my stroke. I smoked I smoked from when I was about ten and I used to roll my own, and I smoked until ‘97 so it was about forty years I suppose of smoking.
 

Sue’s asthma is mainly affected by weather conditions. The only explanation available for her colitis lies in the use of powdered slimming drinks in her twenties.

Sue’s asthma is mainly affected by weather conditions. The only explanation available for her colitis lies in the use of powdered slimming drinks in her twenties.

Age at interview: 50
Sex: Female
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When I when I first started with asthma, which I guess was my late teens, early twenties, I used to play netball with some friends at a local sports centre. As a young child, I had suffered with bronchitis and from memory; I think my GP might have connected that with the asthma. So from my sort of early twenties, the asthma has been there and I just, like I say, take the salbutamol or the Ventolin. I know when it’s a cold, damp morning that I need to sort of take a booster on the old inhalers because, obviously, it affects the chest a little more. The colitis, when was that? I think again I might have been in my twenties and I was doing the, I had been doing the Cambridge diet.

Right.

Which was powdered slimming drinks and all that sort of thing and I when I saw my consultant initially, he asked me if I drank coffee. He asked me if I had powdered soups, to which I don’t drink coffee. I’m a tea drinker. I have never really used powdered soups. The only thing I could think of was the Cambridge diet that I, you know, I had changed in my lifestyle, shall we say. And it was just to start with, it was called non-specific proctitis and, over the years, because I’ve had flare-ups it was getting to the stage where I was having a flare-up every twelve months before I had the stroke.
When there was a history of a particular disease within a family this offered a clear explanation for people. However both Gogs and Pat lacked information about their family history which made ruling an inherited cause in or out difficult. Ronald only found out that an aunt also had diabetes after his own diagnosis. With multiple conditions, one cause might be genetic but another could come without explanation. Lee contrasted her type II diabetes—which was caused by a “wonky gene”—with a lifetime history of asthma for which there was no apparent explanation.
 

There is a history of heart conditions in Ronald’s family. Since being diagnosed with diabetes he has found out that 2 other family members also have it.

There is a history of heart conditions in Ronald’s family. Since being diagnosed with diabetes he has found out that 2 other family members also have it.

Age at interview: 70
Sex: Male
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Okay and do you see do you see your conditions as being related in any way? Are they connected or?

Well, my heart problem is it’s an hereditary thing on my father’s side of the family because my father is just, you know, he died, my father died when he was I think about sixty two, and there’s been a long history of heart problems in the family, and his own father died when he was fourteen years old. I don’t know what age my grandfather would have been but it stretches back quite a number of generations because my grandfather, he was a postman up in Derbyshire and so he a quite an active job walking around, and the photographs that I’ve seen, he seemed to be a real sort of sort of gentleman you would expect at that with a nice big sort of moustache. Looked a proper military man. But there always has been problems because my father, that’s what eventually killed him was heart attacks. And he was the same, he had a heart attack and had a chest pain and carried on working through it and he ignored it, didn’t seek advice and so there’s been that. That’s just the sort of thing I suppose doesn’t play on my mind, but I’m aware of it that there’s obviously some, you know, physical defect on the male side of my family, you know, and it it’s one of those things I suppose you have to sort of learn to live with, which is, you know, with genetics and things like that these days, they can probably tell exactly what gene it is that’s causing the problems. But I’ve never felt any ill effects whatsoever because the job I done was really physical. I was climbing up poles and pylons and things like that and climbing up trees, chopping down trees, just maintaining the power lines, you know, and so it’s quite a physical sort of a job, you know, and just one of those things.

So is there, do you think there’s any connection between problems with your heart and the diabetes or is that just coincidence?

I just think it’s coincidence really because it’s, when I was diagnosed, at the time, I was the only member of the family that had had diabetes so I thought. Then there’s like most families, have skeletons in their cupboards. I had an aunty that was the black sheep of the family, which we never, ever hardly see, saw at all, she was appeared on the scene and she told us that she was diabetic as well. So that’s my mother’s youngest sister, and until then I wasn’t aware that there was any sort of diabetes in the family. And now my sister, in recent years, has been diagnosed with diabetes and that was only discovered because she had an infection of the leg, which thought was an insect bite, which didn’t really sort of heal up at all. Then they discovered that the reason why it wasn’t healing was because of diabetes and that was how she was diagnosed. So that that side of the family is something totally but I don’t think it’s not related, not in my mind, but somebody of greater knowledge might tell me different but…
 

Lee has had asthma all her life. Her diabetes may have a genetic explanation, although she believes it could have been brought on early due to obesity.

Lee has had asthma all her life. Her diabetes may have a genetic explanation, although she believes it could have been brought on early due to obesity.

Age at interview: 49
Sex: Female
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I mean I’ve had one condition all my life and it was, that because that was the major thing that was only thing that was wrong with me throughout childhood and adolescence and young adulthood, that was fine. 

That was the only thing I really needed regular treatment for and the fact that I’m also diabetic is kind of incidental really. I could have had asthma for forever more and never developed diabetes, apart from this wonky gene in our family.

Okay and you mentioned there about the, I think it’s your mum and your aunty.

Yes.

Also have diabetes?

Yes.

But were you, you were the first to be diagnosed, is that correct? Or?

Well, it was all within maybe a two or three year period and I can’t remember exactly who came first.

Right.

But yeah, similar timeframe and my aunty is considerably older than my mum, who, of course, is considerably older than me so to be diagnosed all at the same time, that’s one of the factors, the reasons I’m so sure that mine is majorly insulin resistant, caused by being overweight morbidly obese as I used to be. I’m merely obese these days.

Right.

Still and then only just so yeah, I just got it sooner than I would have done, and I’m pretty certain it’s inevitable that I would have done in any case.
In some cases, people developed certain health problems when in hospital. Amy suffered a brain injury as a result of a lack of oxygen when she could not breathe properly and the doctors were trying to find out what was wrong with her. It turned out to be a rare, life threatening condition called necrotising pancreatitis. Kevin’s urinary system was damaged during a routine operation to remove a kidney stone. Fred assumed that he had picked up an infection whilst in hospital, but he had never been told exactly what was wrong and there was confusion about whether a worsening in his symptoms was linked to a heart operation or an infection acquired in hospital (see also, ‘Risks and potential harms for patients with multiple health problems').
 

Amy was admitted to hospital and eventually found to have necrotising pancreatitis, although the reason for it is not known.

Amy was admitted to hospital and eventually found to have necrotising pancreatitis, although the reason for it is not known.

Age at interview: 25
Sex: Female
Age at diagnosis: 22
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I went into a hospital in… about three years ago, and ended up having necrotising pancreatitis, and I was in hospital for about seven months, and I was in and out of ITU quite a lot; my doctors used to tell me that I died three times during it, so it’s something that people can say. But, I have chronic pain now. I have asthma, diabetes, chronic fatigue, and depression and anxiety, for I’ve got a couple of mental health problems as well. I was fine before I went into hospital but because I was so poorly I came out and a lot of my…yeah, I’ve got a bit of a slight brain injury as well, I’ve got… a lot of my pain is neuropathic pain; so I’ve got… they’re kind of looking into that at the moment and getting assessments done and things like that.

So does everything, all the conditions that you have, all stem from this…

Yeah.

…hospital episode?

Mm.

And that what…what was the reason for that in the, in…in the first place?

They don’t know, I had idiopathic – I think that’s the right word – pancreatitis, there was no reason for it. Normally I think it’s gall stones that a lot of people go in with; but they just had no idea. It took them a month to kind of diagnose that I had pancreatitis and by that point I wasn’t breathing and my… wasn’t breathing properly, I had a… a lot of lack of oxygen; and that’s kind of where the brain injury stems from. And then I was in intensive care for six weeks, and then came out for two months, and then I went back and had three spells in ITU. And I lost all my hair because of it as well, so that was quite weird.

Because of the drugs that they were pushing through me that I’d had rapid, so everything was going towards my heart, all the blood circulation, so I have, I’ve got pain in my feet and my arms and things like that now. So, yeah, it all stemmed from there. It’s quite mad that you go in hospital one day and then seven months later you come out and everything is slightly different.
 

Fred picked up an infection whilst in hospital and his health has not been the same since he came out. This has led him to be concerned about cleanliness in health facilities.

Fred picked up an infection whilst in hospital and his health has not been the same since he came out. This has led him to be concerned about cleanliness in health facilities.

Age at interview: 85
Sex: Male
Age at diagnosis: 40
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I was moved when I was taken back in, and they admitted, um, that had, I’d got contamination, and I had someone attending me who couldn’t even insert the needles for injections, and I just said, stick them in the back of my hand. But, it was rather difficult. I was in six weeks, having tests done, and I still… I still don’t know what was wrong, what the problems were. And as a consequence of this I’m still… I still think I pick up any…bugs or anything that’s going, I seem to pick them up very easily, and it doesn’t come in ones, I’m getting them in twos. I’ve had flu, passed it to my wife, she’s passed it back to me, I’ve passed it back to her, and the same with the problem I have at the moment, which is this Meniere’s Syndrome. It’s being… I’ve come out of it, I’m back with it again, and I don’t know what the long-term effects will be, I’m just hoping someone can solve the problem. But, um, getting appointments in the hospital now has become difficult, and getting an appointment with the doctor, and I’ve tried the doctor, I said, can I have an appointment next week? They said, no two weeks or maybe three weeks, depending, and for older people it isn’t very clever. I think there should be some segregation.

The other major topic, I would say is, people must… and I state, must, clean their hands walking in surgeries, and clean them coming out. There’s facilities there, and there’s… ninety nine per cent of the people going in surgeries do not abide by this cleanliness routine. I think it should be insisted on, and in the hospitals as well. The other thing I’d say about the hospitals, I think the beds are uncleanliness, people are allowed to come in from outside and they’re not being restricted, and they just wander around the wards, and I don’t think it should be done. Cleanliness in, from my experience, cleanliness in the atomic energy business, atomic, any industry, it was far cleaner than the hospitals. The hospitals couldn’t touch the atomic energy cleanliness routines, and I think it’s causing a lot of problems.

I don’t know if anything will be done about them but… they go through these things, but people just don’t abide by cleanliness, just… I think they could really do with, like a sheep dip, to walk through, to go into the wards. But, um, people come from outside, and when you’re struggling after major surgery, I think something should be done. 
The complexity of having several health problems could bring confusion and uncertainty around the symptoms or causes of illness. Seeing different health professionals, especially an expert, could help find a more definite cause as sometimes they could see what was going on where others had not (see also, ‘Continuity of care’). Farza had been on a long journey to find out what was wrong. Eventually, a doctor was consulted who knew straight away that it was Tourette’s syndrome. Gogs wouldn’t have found out that a drug she was taking for rheumatoid arthritis could activate latent tuberculosis if she had not changed consultants. However, investigations for one condition might also lead to something else turning up. Whilst Mohammed was being investigated for a heart condition he was also found to have diabetes which he had been unaware of.
 

When Mohammed was admitted to hospital it was found that a stent had collapsed. He was also found to have diabetes, which came as a surprise.

When Mohammed was admitted to hospital it was found that a stent had collapsed. He was also found to have diabetes, which came as a surprise.

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And four or five days later I was asked to come in to be admitted so they could have a look as to why I seemed to be quite fit, but yet the readings don’t go along with my fitness. So I was taken in, or rather I was given admission one evening, and the following morning, first in the morning they took me off to the operating theatre to see what is wrong. And what had happened, the stent they had put in had collapsed.

At that time, we had a discussion as it was done under local. He said, “We have two choices. Either we take you off the table and think about a bypass or we open up this stent and stick another stent through it giving it a little more strength. The narrowing is fairly tight and it might halt but that will leave us the option of doing bypass later on.” He said, “With age, you know, you are in your fifties, well into your fifties but physically, you seem to be a very fit person for your age.” So that is when it was done. Hence, to this day, I am, touch wood, fine, taking my medication. What was concern was the, that at my initial admission they found that I had a blood sugar of about seventeen and they said did I know I was diabetic? I said, “You surprise me because I knew nothing.” I had no indications of it. Nothing ever especially having worked in the operating theatres for fifteen, sixteen years [name] Hospital and routinely having medical tests because of the environment you work. Nothing was picked up in those days, anything, caught out of the blue. Suggestion was made that I was put on insulin injections and I said, “No, I can control this myself with just a few tablets.” And since then, I seem to have brought it down to about six, six point five regularly over the last four or five years and my GP seems to be happy that it is well under control, and that basically is the outline of my condition.
 

Farza had neurological investigations for 6 years without finding out what was wrong. Eventually, a different neurologist was able to diagnose Tourette’s syndrome at first sight.

Farza had neurological investigations for 6 years without finding out what was wrong. Eventually, a different neurologist was able to diagnose Tourette’s syndrome at first sight.

Age at interview: 41
Age at diagnosis: 15
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And then when I turned 16, I thought, I don't need my parents, don't need them there at all times, so I can see my GP myself. And I went to see my GP, and I said, this is the problem I've had at school, and I don't know what it is, but I just feel there's something wrong. And he said, yeah, I can refer you to neurology. I've been to see the neurologist, for a very long time, he did lots of things, lots of tests, biopsy, and other strange words I’d never heard before. I went to different hospitals. And [pause], well he just gave in, he says, after, I don't know, a good six years, there's nothing I can do about it, just don't know how it could be, I can refer you to my colleague and see if he's got any other ideas. And I were referred to another hospital, which was quite local. And I said, and he said... on my first visit, he just diagnosed me with Tourette's, which I'd never heard about. Which was quite upsetting as well, and distressing, because [pause]. And I was just glad to get out of hospital, and I was really quite upset about it. 
Lottie was confused as although changes in her blood sugar levels from her diabetes were identified as triggers for her seizures, there was no clear explanation as to why she had epilepsy in the first place and her epileptic seizures appeared to come out of the blue. She contrasted this with her husband who also had epilepsy caused by  a head injury in childhood. Val had been told she had fibromyalgia (a condition that causes pain all over the body), which she did not feel was a “proper” diagnosis, although another consultant had told her it might be ankylosing spondylitis (a type of arthritis that mainly affects the back). Sometimes there was a reason why she was in pain, but on other occasions pain seemed to come for no reason at all. Pat was unsure whether high blood pressure was a symptom of her other health problems or the cause of them.
 

Val finds variable pain difficult to cope with. Sometimes there doesn’t seem to be any reason for it and it is difficult to control.

Val finds variable pain difficult to cope with. Sometimes there doesn’t seem to be any reason for it and it is difficult to control.

Age at interview: 70
Sex: Female
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I know it… if I try and do some housework, I know it’s going to cause pain. On the other hand, there are… there are times when, for no reason that I can see, it’s much worse than it has been. So… and, it’s not just, sort of, daily or weekly, it can be within the same day, that it will vary enormously, and I’ve not done anything to trigger it, that I know. I mean, I might have done, but I… you know, I’m not aware of doing anything to trigger it, which makes it quite hard to deal with. Because, if you… if you know you’ve had an operation and it’s causing pain, and you need to take painkillers, you know that it will go away, you know what’s caused it. But, with chronic pain, quite often, you don’t know what’s caused it, and you… you can’t control it.
 

Lottie thought it unfair that she inherited her father’s high cholesterol on top of having epilepsy.

Lottie thought it unfair that she inherited her father’s high cholesterol on top of having epilepsy.

Age at interview: 37
Sex: Female
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The high cholesterol thing, although it hasn’t had an impact as such on my life, other than it’s just another drug tapped into the list, I think the, it, what felt very unfair was there was a fifty fifty chance that it would either be me or my brother, who had inherited it. My gran had it. My dad had it spectacularly. His cholesterol reading was twenty seven.

And his doctor had to do the test five times because he felt he should really be dead with a cholesterol level that high. And I think, when I did the test, I kind of already knew it was going to be me, as opposed to my brother, but it just it just felt very unfair. And I obviously don’t wish my brother any ill at all, but it kind of felt there were times when it was just, you know, I’ve got enough to deal with. Could you not just, could he not just have had it as opposed to me, you know? Why have I just got to have all these things? So yeah, I think the mentally, it is very draining and you do question a lot of the time, and it’s very difficult not to ask the questions that you know are unanswerable. And I suppose, in a way, that that’s the other thing is my husband has, when he was thirteen, had he got hit on the head with a surf board and somewhat, ironically, on the opposite side of my head, got hit on the left side of his head, had a blood clot removed. 

And for a short while had seizures, but his were explainable. He knew why he had had them because he’d had the bang on the head. Mine just appeared out of nowhere for no apparent reason, and there’s all the questions you would normally ask, generally being why? Nobody can answer and nobody will ever be able to answer and it’s very hard, if you’re having a bad day, for those questions not to continue, just keep appearing and just kind of nag at you and niggle at you, even though the kind of rational part of you knows it can’t be answered, just stop asking them, they will continually surface and just niggle at you.
 

Although doctors had diagnosed Michael X with Chronic Obstructive Pulmonary Disease (COPD), he had doubts about this diagnosis but had never questioned his doctors about it.

Although doctors had diagnosed Michael X with Chronic Obstructive Pulmonary Disease (COPD), he had doubts about this diagnosis but had never questioned his doctors about it.

Age at interview: 82
Sex: Male
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If I could ask you, I’ve jotted down here that in 2006 you were diagnosed with COPD but you, I think you said something like, “I’m not so sure about that.” Could you tell me a little bit about your thoughts around that diagnosis?

Sorry, about the diagnosis of COPD?

Yes, yes.

Yes, well, it’s it seems to me I I’ve observed a lot of people with COPD mainly through my involvement with the British Lung Foundation local Breathe Easy group, of which I’m secretary, I’ve seen a lot of people with COPD, with very advanced symptoms on oxygen, constant oxygen and all these people, as far as I can see, have been in their past smokers, heavy smokers probably. I have never smoked.

Right.

And it seems to me that [sighs] there must be a distinction between people with what used to be called emphysema, which is I know highly disabling, and my own case, which is not. I mean my quality of life is good. I certainly do get breathless on exertion but then I’ve, that that’s been an on-going symptom through throughout my life.

Right.

More or less and so I just wonder about this umbrella diagnosis of COPD and just where I fit into it, if I do at all.

Okay and is that something that you’ve raised with a medical professional or have you challenged that, or is that not been something that you’ve done?

No, no I haven’t, in fact, raised it seriously with them, with any of the consultants. To be quite fair to them, there have been in the last what ten years three episodes of hospital hospitalisation because my breathing, my breathlessness was bad and I was I was put on steroids and so on and so forth.

Right.

But I’ve never seriously questioned it with any health professional. It and perhaps I certainly should have done because I’ve also in recent years done the NHS expert patient’s programme course.

Right. Right.

Which encourages one to ask questions.
Sometimes people will never learn why they have a particular illness. Where there is no clear reason for a disease it is known as having an “idiopathic” cause. Madelon, David and Sue all said that they did not know why they had strokes, although there are known risk factors. Where people did not feel that there was a concrete reason for having one or more illnesses, they sometimes put this down to bad luck. This was the explanation used by Amy for her necrotising pancreatitis.
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