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.
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.
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.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.
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.
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.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.
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.
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. 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.
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.
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.
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.
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.
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.
Copyright © 2024 University of Oxford. All rights reserved.