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.
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.
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.
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.
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.
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.
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.
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.
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. 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.
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.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.
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.
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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