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Living with multiple health problems

The personal impact of multiple health problems

Some health problems are more serious than others and conditions affect people in different ways. The impact that multiple health problems have on individuals might vary according to how well their conditions are controlled. The causes of a person’s illnesses, whether they can be explained or not, might also influence the impact on them. Having multiple health conditions can affect people’s ability to work and limit what they can do in their social lives. Things like pain, low mood, mobility, finance problems, fatigue, etc. can all be made worse with multiple conditions. It may be possible to cope well with one or two conditions but because everything mounts up, it makes each smaller thing so much harder to cope with. Multiple contacts with the health service might also put people at increased risk of harm or unintended consequences (‘Risks and potential harms for patients’). The people who spoke to us varied in their attitudes to their illnesses and whether they were able to accept and adapt to them (or not). 

A family history of illness was reported by Nigel (diabetes), Anne X (heart trouble) and Lottie (epilepsy). Lottie felt that it was unfair that she had inherited high cholesterol rather than her brother, especially when she already had epilepsy. Other people did not have family histories (or were not aware of them). Another key issue seemed to be whether people had always lived with health problems or whether they appeared later in life. Gogs became ill after retirement whereas Val had health problems since childhood. They reported very different experiences.
 

Gogs had always been well. When she fell ill in her 70s she was angry that she could not do not do the things she used to. After 2 years, she has not come to terms with her illness.

Gogs had always been well. When she fell ill in her 70s she was angry that she could not do not do the things she used to. After 2 years, she has not come to terms with her illness.

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So I’m, kind of, interested in your, kind of, self-identity, if you like, because you were someone who was very fit into your seventies and then all of a sudden you find yourself in this, kind of, protracted business with the Health Service.

Yes.

And I, kind of, wonder how that…how that…how that affected you?

Well I think I was angry, I was angry that my… for a start, that my health had let me down and that everything I did and thought I would be going to continue doing I can’t do and I was… and I was angry with my husband for having a stroke, there’s no…it’s not rational, but I was, you know, how dare you? How dare you have something that demands more help from me than I’m able to give? So we, you know, because I couldn’t look after him, I… we got carers in for a bit and that’s a minefield that I don’t want to go into, you know, you pay out for these people and they’re just… it’s horrible. I would say that even today, two years later, I haven’t come to terms with the rheumatoid, it has stopped everything that I did, absolutely everything. I used to sculpt and, paint, do lots of things like that, but with my hands, they’re just, you know, just… they’re just too painful, I can’t lift for any length of time now because of the pain in my wrists. I used to walk, real, you know, proper hiking stuff and loved, absolutely adored it, I can’t do that now, you know, because my lungs make me very breathless after I’ve been walking for, you know. 

Well I actually had some lung tests done just the other day, and it’s a six minute walk, among other things, that you do there and I was… I was pretty jiggered at the end of the six minutes, you know.
 

Val sees herself as someone who used to be a competitive person who wanted to get things done. As she has got older she has changed her personality so as not to make her pain worse.

Val sees herself as someone who used to be a competitive person who wanted to get things done. As she has got older she has changed her personality so as not to make her pain worse.

Age at interview: 70
Sex: Female
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I was always what they would call an A-type personality, so if I wanted something done I wanted it done yesterday, not tomorrow. And I think that’s partly getting older, I mean, I’m 70, so I think that as you get older you realise that things like that aren’t as important as you might have thought they were when you were young. But, no, I tolerate all sorts of things now that I would never have been able to tolerate when I was younger. Because, I was quite driven, I was… I’ve always been very competitive, so, yes. But, now, no, I don’t, if it’s going to cause me pain, and I don’t need to do it, I don’t do it.
Although people live with multiple health problems at all stages of life, the numbers increase with age such that most people over 65 years old have 2 or more long-term disorders*. This was reflected in the people we interviewed, with most being older rather than younger. However, the experience can be very different. Amy was hospitalised for a serious illness in her early 20s and came out with a range of health problems. Mohammed was hospitalised following a heart attack in his 50s and found to also have diabetes.
 

Amy tries to be positive but worries that things will get worse in the future. She tries to keep her thoughts to herself rather than discussing them with family members.

Amy tries to be positive but worries that things will get worse in the future. She tries to keep her thoughts to herself rather than discussing them with family members.

Age at interview: 25
Sex: Female
Age at diagnosis: 22
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I try to be as positive as I can, but then at the same time I know that with age things are going to get harder, because I’m going to have kind of more pain as I grow up, and sometimes I use my walking stick, but I try not to use it at all, because I can’t… I don’t know why, I kind of fight it; it helps me so much, it gives me a lot of support, but I have… it’s this big wooden one, and I just feel embarrassed when I’m walking around with it; so I sometimes… my pain can be awful, just because I’m too proud to walk round with a wooden walking stick.

I do feel that sometimes…sometimes I feel that I’ll never be able to work again, that scares me, because even, oh, growing up, I’ve volunteered. I’ve volunteered since I was about 11, to 18, so I’m used to working and kind of doing… and courses and things like that. So now with… with my brain injury I kind of… I strug-, I used to love reading, I did English literature for my A-levels, and I kind of every ten pages I’ll have to go back five to know what happened, to remember what happened again; and that kind… it’s kind of… And I always worry if that’s going to get worse, so… You see these horrible stories sometimes, like I’m… if your diabetes isn’t the best, if you carry on with it not being good, there are people that have kind of like lost their feet, and things like that, and it’s a bit [pause] it’s a bit scary. It’s… because I think I’m scared because I don’t… I’m positive but I’m scared because I don’t know what’s going to happen in the future. Mm. That scares me a bit.

And I have… and one of the reasons I go to my counsellor is because I found that if I’m going downstairs in my house, before I go to the… down the stairs my instant thought would be, you’re going to fall down there and then you’ll break your neck. And when I closes the door, when I go… if I go out, I’ve kind of half… going to fall down these steps. So I’ve got this constant… kind of like a constant voice in my head, with all these worst-case scenarios, and then I do touch wood, and I do that about 20 times a day, touch wood. Because I’m so… because I know how bad I can get, because I… I was basically dead twice during it, I’m very aware of how things can change. Like when I went into A&E they kind of were like, oh, there’s a four-hour wait; and I said, I’ve got some chest pains as well; and I got seen straightaway, and three hours after that I was being put in the High… HDU and being sent to ITU. So it’s quite mad that if I hadn’t have told a white lie I kind of… I probably wouldn’t be here now.

So because I’m used to the worst-case scenarios I always kind of have that fear. And I… and now that I’m never going to work, and things like that. But I try not to… I try to keep that to myself because if you… if you tell your… if you talk to your mum, that you feel like that, and your family members, and your support groups and things, no, it doesn’t just affect you, it affects the whole family, when you’ve a mental health condition and kind of with any health condition, so I try to keep… That’s probably when my depression is worse than it is, because I keep my fears inside and… I’m positive, but there’s always that person at the back of my mind saying, you shouldn’t be… it’s kind of like a little devil.
 

Mohammed believes that people have to recognise their age and adapt accordingly. He compares the body to a motor car where an old one cannot perform as well as a new one.

Mohammed believes that people have to recognise their age and adapt accordingly. He compares the body to a motor car where an old one cannot perform as well as a new one.

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And do you feel, your conditions, have they caused you to live your life differently? I appreciate that with the diabetes you perhaps modify diet and that type of thing, but you mentioned that it’s in the back of your mind.

Yes, of course, you know. Yes, of course, but I think a combination of both. You have to recognise your age. You have to recognise that you have certain difficulties and adapt your life around it. You can’t simply go in and have two stents and so on and come back and say nothing has happened. Whether they will cause any stress or damage you don’t know, but it’s always in the back of your mind because very much like you sit in a clapped out car and you know that there’s limitation. You know, it’s pointless putting it on a motorway and putting your foot down knowing that it is just not capable of doing that, and I think that applies with your own body as well. Simplest way I can put it.
The issues of stigma and whether people looked ill or not also had an impact on how they coped with their health problems. Amy was embarrassed about using a walking stick so preferred to endure more pain instead. Farza’s tics presented problems in public. Kevin had been made fun of for having a limp and using a walking stick. On the other hand, John said that people didn’t think he was ill as there were no visible signs. Nigel said that he looked well but felt terrible. He had lived with depression for most of his adult life and was diagnosed with numerous physical conditions in his 40s.

Some conditions were seen as more stigmatising than others by the people we interviewed including; epilepsy and mental health problems. Also with epilepsy, people might look completely healthy unless having a seizure. Lottie felt that she had to justify herself all of the time for not being able to do things because of her epilepsy.
 

Nigel thinks other people do not understand how unwell he feels because his conditions cannot be seen. He says people need to keep faith, fight the symptoms and carry on with things.

Nigel thinks other people do not understand how unwell he feels because his conditions cannot be seen. He says people need to keep faith, fight the symptoms and carry on with things.

Age at interview: 58
Sex: Male
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It’s just, I don’t understand how people don’t realise how poorly you feel with diabetes. You know, there’s a lot of conditions where you can’t see it but it affects you so much, and it’s not only diabetes. There’s a lot of conditions but everyone sort of says, “Oh you look well.” And yet you feel absolutely terrible and that’s the only thing I… it just seems to wear you down from inside. It’s just constantly on at you all the time. 

And do you feel you’re ever able to, if somebody says, oh you look well, do you feel you’re able to say?

Oh, yeah, I always say, “Well, I don’t feel it.”

Right.

But I will say that or I’ll say, “I wish I did feel well.” But one thing you’ve got to have is a lot of faith. You’ve got to keep at it because it will get you down if you let it, well, or the conditions, they will slowly drag you down if you let them and every day you have to say, “No, I am going to walk into town. I am going to do this. I am going to do that and I’m going to fight it.” No matter how tired you get you’ve got to fight it and carry on.
 

Farza has multiple mental health problems and life can be very hard. Farza has to cope alone because family members do not understand. Verbal tics are very embarrassing in public.

Farza has multiple mental health problems and life can be very hard. Farza has to cope alone because family members do not understand. Verbal tics are very embarrassing in public.

Age at interview: 41
Age at diagnosis: 15
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Like, I've got ADHD as well, but I've not been specially diagnosed with ADHD, because they said, you don't have, a specific, you know, diagnosis for it, but you have got ADHD. I've got OCD, ADHD [sighing], anxiety and depression. It's, life can be very hard sometimes. But I'm, I think I'm still coping. But, I feel very lonely about it, because my family don't understand it. And my sisters, brothers and sisters, they just don't understand it, that there's something wrong. But it's very hard to explain when my tics come on, because I never see anyone. Excuse me.

That's alright. And so the tics, is, do the tics come on, I don't know, if you're under stress, or something?

Under stress.

Or are they just there all the time?

No, they come on when, I'm under, severe pressure. And something triggers it on, if I'm thinking, and it's getting me all worked up, I will tic, and it's gonna, sometimes... well, everybody... no two people are the same with it. My tics are like, I make barking noises, screaming, and, it's just, releasing your anxieties, really. I have to let it off. Which is really embarrassing in public, but, I'm afraid that's me. 
 

Lottie refers to the invisible nature of her conditions and wonders what she might have achieved without them. Memory problems mean that she can’t recall key events in her life.

Lottie refers to the invisible nature of her conditions and wonders what she might have achieved without them. Memory problems mean that she can’t recall key events in her life.

Age at interview: 37
Sex: Female
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I think one of the hardest things is just constantly having to take medication to the fact that your life kind of you can’t be spontaneous, because you’ve got to suddenly think, “Ooh, we, you know, do I need to take this with me? Do I need to have this with me?” Or you can’t just kind of go off. Daft things, we, when we went on holiday last year, I think we probably spent more time trying to sort out travel insurance, letters confirming that I did need needles, the insulin, the drugs and all of that and it’s just, it weighs you down. You kind of think, I just, it would just be so nice just to walk out of the door and just go and do whatever.

And you feel very, very tired and I think it becomes, I mean currently I’m not able to work. I was due to start a new job last year and they went through the contact contract, when they found out of my, the kind of extent, I suppose, of my illnesses and to a degree, there was a discrimination but, unfortunately, at the time, I was not in the right state of mind or health to pursue it any further. But I think the problem, when you have illnesses like diabetes, like epilepsy, that because they’re not clearly visible on a day to day basis, there is this kind of people looking at you as if to say, “Well, why aren’t you working? Why aren’t you doing this? Why aren’t you doing that?” And it does become slightly frustrating that you think, “Well, actually, I have got this to contend with and, you know, at any moment I could just keel over.” And it does become very frustrating that you feel you have to justify yourself all the time. And it does define, I suppose, especially having had the epilepsy since I was mid-teens, you question sometimes what would I have done if I hadn’t have had this?

What would, where would I be? Would, you know, what could I have done with my life had this not been there?  How much of my life has been defined by having these illnesses? And it’s, you know, I pick up my prescriptions now and there’s just this huge great big bag of pills and you just, it gets, it can be very hard and you think, “Do you know what, I just don’t want to take them.” I’ve got to take them but it would just be so nice not to, not to have to remember. And that’s another problem that comes with the epilepsy, is memory. And my epilepsy.

Is centred on the front temporal lobe, which is to do with mood and memory. My memory is appalling. I have to have reminders everywhere, notes everywhere, I can never remember people’s names. There’s an awful lot, my wedding day, for example, is now becoming remembered only purely by the photographs. I don’t actually remember it, and I suppose it gets highlighted how bad my memory is, because my husband sucks up information and can remember everything from what he was wearing on our first date, which I have absolutely no recollection of. I’ve got about three years at college where I don’t remember at all. So it’s just impacted and you do sit and wonder how much of you is defined by the conditions and not you as a person, and it becomes very frustrating. 
Other people had problems speaking about their health problems whether or not they felt a stigma or that their conditions could not be seen by others. Pat doesn’t tell people about her diabetes unless she has to inject insulin in public. On the other hand, Anne Y had found that being open with her family and friends about her epilepsy and “joking about it” made it easier to deal with. Tammy referred to a kind of dual personality, where she would complain about her problems to family members (or health care workers) but put on a brave face for other social contacts.
 

Tammy does not mention her problems to outsiders. However, her family see a different side to her. She wonders whether it is good for her to pretend to be well in front of others.

Tammy does not mention her problems to outsiders. However, her family see a different side to her. She wonders whether it is good for her to pretend to be well in front of others.

Age at interview: 45
Sex: Female
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On one level, I am really fit, you know, and able and I wouldn’t ever sort of give that up because, obviously, it’s doing me some good somewhere. My, you know, I don’t know, heart disease and things like this are all, with any luck, you know, does have some sort of stamina build-up in there. But the yeah, the drugs themselves definitely have that sort of zapping of energy and I read the side effects, which often isn’t a good thing and I know they write absolutely everything down, but the sort of muscle fatigue as well.

You know, and things like that, and I think I feel that sometimes. On the other hand I, you know, I am very busy physically and I’ve sort of made sure that, in a sort of stubborn way, you know, I won’t let the diabetes and the epilepsy stop me, you know, being what I always was really.

Sort of quite physically fit and able. I garden a lot at the moment. I went from teaching to gardening.

I know for a fact I’ve learnt to sort of play it down so much.

Right.

And again, even with the epilepsy, this is like managing it with other people, you know, I and certainly, strangers or people I’ve  met for the first time I would never openly sort of complain about, yeah, how bad I feel or didn’t I get a lot of sleep last night because of my sugar level, you know. With this gardener, for instance, I just have to, I just choose to appear really positive, you know, and I can do anything you ask me to do because I’m as strong as the next person is and so on. And I don’t think that’s healthy, in a way, sort of psychologically, you know, I play this sort of I don’t know, it developed through the years. I almost have another me, don’t, I sort of, you know, my family see me complaining and moping around and up half the night, you know. And then this other sort of side is the gung-ho same as everyone and, you know, I just feel that that’s sort of necessary in a in a in another sense. It’s a, you know, it’s another world sort of thing. So yeah, identifying the symptoms or the fatigue that’s associated with these isn’t easy but on a, you know, I deal with it as it happens, if you see what I mean.
 

Anne feels embarrassed to go to the doctor. She finds having multiple health conditions depressing and humiliating. She tries to console herself by imagining people worse off.

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Anne feels embarrassed to go to the doctor. She finds having multiple health conditions depressing and humiliating. She tries to console herself by imagining people worse off.

Age at interview: 79
Sex: Female
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And, let’s face it, I’ve had so many diverse problems. I mean they’re not your everyday ones, not to have so much arthritis and so much everything. I’m embarrassed, actually, I’m horribly embarrassed to go to the surgery and I think, oh God, they might say, “Oh no, not you again.”

I hate it and my blood pressure must rise most definitely when I go because I don’t like having to tell people my health problems. It really stresses me.

Because I have never taken a tablet in my life. I never even took an aspirin or paracetamol or anything before my heart problem.

And it wasn’t until I had this heart problem, and started to be given tablets that I’ve had medication, although I’ve had the odd tonsillitis, but I’ve been very blessed with my health, and I realise that that I’ve been able to do most of the things I wanted. I’ve renovated old houses, renovated old boats, you name it, I’ve been able to do it. So I’ve been very blessed with reasonable health and to find myself in this sorry state is a bit depressing and, in a way, a bit humiliating as well, if I think about it. I don’t really like it.

Then I’d have to give myself a ticking off and say, “You could have been in a wheelchair since you were born, my girl. You are so very lucky.”

And I have to look at it like that because there isn’t any other way of looking at it, if you think about it, when you see some really sad cases, one’s heart bleeds to see them. People tend to tell me things and I think, “Oh wow, how on earth do they manage? Poor loves.”

And that’s how I feel about it. 
These issues were important as they were linked to people’s use of health services, or support groups, and whether they could get assistance from others as opposed to struggling to cope alone (see also ‘Peer support’). All the people that we interviewed were engaged with health services to different degrees, although Graham was an unusual case in that he had mostly refused medicines for his health conditions (rheumatoid arthritis and labyrinthitis – an ear problem that affects balance) preferring exercise programmes based on his own research. Such an account contrasts with that of people like Mohammed (see above) who instead saw his health problems largely as technical matters to be sorted out by trained health professionals. Pat, appeared wary of technological intervention and preferred to manage her conditions with diet or complementary therapies. However, in a sort of conversation with herself, she realised that her advancing age and the progressive nature of her diabetes meant that such technology might now be necessary. These issues are considered in more detail in other topics (see ‘Causes of health problems: certain and uncertain’, ‘Prioritising multiple health problems’ and ‘Strategies used to cope with multiple health problems’).
 

Graham believes that he is unusual compared with other people in that he sees it as his job to look after himself rather than leaving it to health care workers.

Graham believes that he is unusual compared with other people in that he sees it as his job to look after himself rather than leaving it to health care workers.

Age at interview: 66
Sex: Male
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Is there anything you want to add?

No. Well, just to say, I’m fully supportive of the, NHS and all the healthcare professionals in there. But, the way we done things for the last, you know, since the NHS was founded, when I was born, nineteen forty-eight, [laugh] it’s gotta change, but... Yeah, I suppose I’m a bit of an odd one me, the fact that I believe in looking after myself a lot more, I believe you know, there’s a lot more down to me than down to the health professionals. And that’s, a bit strange, isn’t it?

Do you…is that a personality thing, or did you kind of come to that realisation at some stage?

Well, I suppose it’s a bit of both, that, you know, I’ve always been inquisitive, you know, I always wanna learn more about things. Most of us walk down the road and we can’t tell what trees we’re passing. Our ancestors used to know all the trees and, little things like that, I suppose I’ve always been, you know, wanting to know a lot more.
 

Pat’s diabetes has become worse and her consultant has recommended an insulin pump. Pat doesn’t like the idea, but she realises that now she’s getting older it might be needed.

Pat’s diabetes has become worse and her consultant has recommended an insulin pump. Pat doesn’t like the idea, but she realises that now she’s getting older it might be needed.

Age at interview: 80
Sex: Female
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Is that the only time you've experienced hypos or is…?

No, it is. No, in fact I had three last week.

Right.

And I think this is why, you know, the consultant's talking about the pump.

Right.

Are they…is this the pump, it's quite a new technology?

It's fair…well, my daughter tells me they have lots of [patients] at the hospital, she's at the [name] hospital, with pumps and it's…really works very well. But I think it's, it's almost like it's another step in the progression, 'cos I know it's a progressive condition, and that's why it's not particularly… On the one hand it's very good news 'cos it…you don't have to keep stabbing yourself, 'cos I inject five times a day and test my blood.

Yeah, I was gonna ask you about the testing?

Yes. So well, that's not a problem. But I mean one gets fairly funny fingertips, but… and obviously I vary the site. So the pump would avoid most of that.

So that's the good news. I just don't like… I suppose I'd feel the same if I had to have a pacemaker, which again, I know are brilliant, I've got two friends with them and they're fantastic. But it's like introducing something into the body which wasn't supposed to be there. And I suppose if I think about it, if I think about it, it's because, in a way it's control but it's also in a way, pride is perhaps the wrong word, but you know, your body should be doing this. You shouldn't have to have some intervention to help the body to work the way it was designed to work. 

But then I have to remind myself that at my age it's quite likely that the body needs a bit of a helping hand. So I rationalise obviously when I'm faced with this sort of health issue, I look at the pros and the cons. And yes, I didn't want to go on insulin but I did and I was delighted with the, the change it made in the way I felt. And, it was much easier than medication. Tablets, you can't control in the same way that you can control insulin. So you know, I always looked… I saw the… sort of the negatives and then the positive emerge and I stick with the positives.




*Barnett, K., Mercer, S.W., Norbury, M., Watt, G., Wyke, S. and Guthrie, B., 2012. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. The Lancet, 380(9836), pp.37-43.
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