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Living with multiple health problems

Peer Support

Support from others can be crucial in helping people to cope with illness. This topic is about people using their social contacts to help them manage their conditions or ill health. Such social contacts could be anybody from a partner or family member through to a community contact or somebody found via a patient support group or disease society. It is known from previous research*,** that pets can also help people manage long term health conditions, so we included them in our definition of ‘people’ who might provide social support for somebody.

Anne X spoke about social isolation and the loss of traditional communities. She missed the support of a “decent” Parish church. People with health problems can find themselves coping alone (or with a partner struggling to care). In light of this, Anne X spoke about the benefits of group activities for people with multiple health problems, such as singing therapy. Many people find useful advice and one-to-one support from other people via the Internet. Amy, one of the youngest people interviewed, described how she adapts tips from online support groups to her own circumstances. Many people received support from patient or disease charities or support groups and benefitted from learning how other people managed their condition(s). For Lottie, attending such a group spurred her on to demand specialist input to her care. Michael Y and his wife Pauline used to attend an epilepsy support group, but it had closed down. Pauline was hoping to find support through a carer’s forum.
 

Amy found a friendly support group online through which she has made friends.

Amy found a friendly support group online through which she has made friends.

Age at interview: 25
Sex: Female
Age at diagnosis: 22
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On Facebook there’s a pancreatitis UK and Ireland group, and it’s basically it adds people who’ve had pancreatitis or relatives, and you can go… If I’m having a bad day I can put it on there, and everybody in the group will kind of comment and give you advice, and we all kind of… well, it’s kind of like a little group of friends, we all kind of advise each other and… sometimes even if you just want to have a moan you can just have a moan, and people are like, oh, I know. And it’s… it’s nice like that. It’s kind of like support but in a friendly way, in a kind of more personal way; and even I’ve met a lot of friends through it as well.

I think you learn things from other people as well, kind of like you learn about certain things; with the support group for instance, they’ll tell you things, they’ll put recipes up, they’re like, you know, kind of friendly when it comes to low fat and your diabetes and things like that; so you just pick things up and adapt it to your…your day-to-day life. Mm.
 

Lottie was inspired by a member of Epilepsy Action to be more questioning of consultants and assertive in her demands for specialist epilepsy input.

Lottie was inspired by a member of Epilepsy Action to be more questioning of consultants and assertive in her demands for specialist epilepsy input.

Age at interview: 37
Sex: Female
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My neurologist, I’ve felt, has always been fairly dismissive. For many, many years, I have four types of epilepsy. I have full tonic-clonic seizures.

I have absence seizures, I have auras, I also have non-epileptic attack disorder. He has always been fairly dismissive and always believed that my seizures were non-epileptic and brought on by psychological problems. He then changed his mind and thought that some of the them were epileptic, some of them non-epileptic but has, I suppose, what, one of the one of the chaps that I suppose I suppose has got me spurred on to kind of constantly question and badger consultants has been from the from the Epilepsy Action group.

He’s, I suppose I’ve been trusting of what he’s got to say because he lost a son to epilepsy, and his youngest has epilepsy and he also works for Epilepsy Action, so he does actually know what he’s talking about. And that’s kind of, you know, he’s, and it was him that got me kind of actually questioning and be able to feel that I was allowed to question what my consultant was doing. And that’s only really happened in the last couple of years.

I think, up until then, there, I was very much of the belief that these, that you didn’t question, you didn’t ask questions, you just did as you were told, that they knew what they were talking about, so just go with what they were saying and do what they told you to do. Only recently have I felt I was able to actually question why and the consultant that I had been referred to, the epilepsy specialist, at one point, because I was, I was completely unaware that brain surgery was even an option.
 

Anne X is concerned about loneliness in older people given the fragmentation of families nowadays.

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Anne X is concerned about loneliness in older people given the fragmentation of families nowadays.

Age at interview: 79
Sex: Female
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So I’ve had a very stressful, bad period since I’ve lived here actually and I badly miss a decent parish. I’ve been used to really supportive parish priests and this one, hmm, what can I say.

Didn’t seem to care when my husband had a heart attack. He’s lost an awful lot of parishioners.

And I miss a decent parish life. I’ll be frank with you.

So I love singing, but the voice is a bit grot and I suppose it’s the reflux. I don’t know, and it’s also getting laryngitis a couple of weeks ago but I’m hoping I’ll get it back, but it’s so lovely, it’s such fun to sing. Whether you’re a good singer, doesn’t matter if you’re out of tune, if you enjoy it, just sing and it’s the company. It’s the fun of it all, you know, and it’s meeting other people and having a laugh. It makes such a difference to people so you actually don’t want to talk about the ills, your ailments particularly. You can do that often enough in other places. You don’t really want to use it to relax, which is what we’re really trying to do, because older people can be lonely, because families are not as they were. They’re fragmented. Gone are the days when you lived amongst aunts and uncles and children and etcetera etcetera.

Now there are very few that have all their family. I’ve got one abroad and one quite far in the lower part of England and just one close who’s absolutely wonderful. But, you know, it’s not the same. The trouble is you need you need friends, old friends that you knew years ago. It’s difficult to make friends in a new area, when you’re not young. I’ve got many lovely acquaintances and one very good friend and, unfortunately, she is very ill and is going to move closer to her family. So that’s what you miss and I think that they, if they thought of facilities for things you could do. I mean they had a drop in centre in [name] Street for people who were on their own and for older people or young people, anybody where every day of the week you could get a cup of tea and a biscuit and a chat. But they closed it down, whoever owned it, and I think they’re building places for younger people. Well, you know, younger people don’t have to live right close to all amenities. They’ve got health and feet and it’s good for them to walk, but older people, they’re slow and they don’t want to be a long way from things like that. They’re getting a bit long in the tooth, you know.

You know, and this is what you miss out not having close family ties and units and a decent faith and church. Because the church used to play a huge part in this, certainly did when I grew up, and we’ve come to a really terrible time in history actually of sort of semi-neglect in all sorts of areas.

And that is what they need geeing up on, learn exactly that there’d be less people in the doctors’ and less things wrong with them if they had pursuits that interested them and other people. It’s vital to people. We were not meant to be alone, we’re meant to be in community really. This is what life was supposed to be. We were never supposed to be alone.

In either a family community and then a wider community, but not this solitary business that people have. And I’m lucky, but I feel so very sorry for so many people, because I’m the one who tended to go and have coffee with them from time to time because haven’t seen anyone for days. You know, and there’s something sadly lacking somewhere, when you are so desperate you have to lower your pride and ask someone you barely know if they’ll have a cup of coffee with you, so that they can talk to somebody. And it’s a terrible indictment on society. I’ve stood on my box now and that’s all I’ve got to say on it.
Several people had used the Internet in various ways to help manage their health problems. Some simply used it as a means of finding relevant groups that could be attended ‘offline’ in face-to-face meetings. As with Amy, above, others used online support groups, e.g. via ‘chat’ forums or Facebook pages, etc. Lee had used such forums to find dietary advice in relation to diabetes. However, because she is Type II, she did not feel that all the information on the forums was relevant to her. When he experienced problems with his balance, Graham went on a specialist website and was able to devise his own home exercise treatment plan.
 

When Graham thought that he had labyrinthitis he did not find his GP much help. He followed the advice on a specialist web site.

When Graham thought that he had labyrinthitis he did not find his GP much help. He followed the advice on a specialist web site.

Age at interview: 66
Sex: Male
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Now you said that you didn’t go for help with that for quite some time. What did you think was…was going on with you, before you went to see anybody about it?

Well, I thought it was labyrinthitis, because I’m an expert patient tutor, so I tutor people, teach people over a six week course, you know, how to cope with, you know, what’s wrong with them. So, yeah, I get a bit annoyed with the doctor didn’t come out to see me, and didn’t even follow-up afterwards. And as I say, I went on this labyrinthitis website, and I found it very good. They told me to stop taking the antipsychotic drugs because they didn’t help, they didn’t, you know, they just alter your mind so that you, you know, you [laugh] you don’t notice [laugh] that you’ve got problems. They said the thing… the best thing you could do was, you know, try these. And there’s a specific set of exercises you have to do, and they outline those, you know, well, they named them, and then I went on another website and found where they were. And simple things like sitting on the bed with your eyes closed, and then standing up, you know, I couldn’t do that for three months, but after the three months I’ve gradually been able to close my eyes and stand up straight without falling over.
 

Lee attended a diet course for diabetics but those attending were diverse and she didn’t get what she wanted from it.

Lee attended a diet course for diabetics but those attending were diverse and she didn’t get what she wanted from it.

Age at interview: 49
Sex: Female
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A dietician came and saw groups of groups of patients. However it’s a mixture of mixture of people such that we were too diverse to really make the most of it. So we had some people who simply didn’t want to know. We had some people who lacked any understanding of basic nutrition. We had some who didn’t even know what drugs they were on and generally, it was it was pitched at a level that I found not desperately helpful to me.

Right.

But that’s not the fault of the person. It was the fault of whoever set up these things I think in not finding out a bit more about the delegates and beyond that, the only bit of advice food-wise I’ve been given from the practice nurses is never have fruit juice, don’t eat grapes and lose weight. Which actually is the lose weight bit is very good advice but without specific information, particularly about carbohydrate. That was something I discovered for myself using the forums that that you came across me on.

Really. 

That’s really helpful because diabetics of all kinds, but a lot of the focus in the discussion boards is about carbohydrate and knowing what you have and what the reaction to it is. So all of that information that I’ve gathered from that, not all of it is relevant to me as a person who has type two diabetes.

But it’s interesting to know what approach different diabetics take for their particular case.
Most people did not seem to be involved in general community groups (e.g. churches, coffee mornings, clubs and societies), or if they were they did not mention them during the interviews which suggests they did not see a relevance to health. Fred spoke of the need for a face-to-face community group where older people could share information. He believed there used to be a group and also wondered if maybe he wasn’t out mixing with people enough. Similar to parts of Anne X’s experiences, Jean reported feeling like an outsider where she lived as she was a recent arrival into a community where everyone knew everybody else. A lady from Age Concern did take her out to tea occasionally. The most striking example of where there had been interaction between a person with multiple health problems and the local community was in Lottie’s case, where her daughter’s school had given epilepsy awareness training to the pupils and some said they were raising money for epilepsy charities.

By contrast, help and support from partners, family members and friends was a common theme. Leonard, Barry and Fiona all pointed to the help that they had from wives or husbands. In addition, Sue and Lottie also mentioned support from their children acting as young carers. However, David, who had lived alone since his wife died, said that he found it easier to cope with difficulties without somebody else “fussing about it.” Others mentioned feeling guilty about the impact their condition could have on other people close to them. For instance, Angela was concerned that she was an extra burden on her parents who already had care responsibilities for others.
 

Jeffrey does not get any help around the house but he pays for a cleaner as his father used to do.

Jeffrey does not get any help around the house but he pays for a cleaner as his father used to do.

Age at interview: 66
Sex: Male
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Okay and in terms of the amount of help that you get, would you say that that’s about right or would you like more support from the GP or?

Oh no, I think the GP is very, very good. I just, you know, I don’t have any home help or anything else. I don’t need that you see. I hope I never do have to get any of it. [Cleaner] who I talked about is on the form, I she comes in Tuesday and she’ll be in again Friday. There’s a there’s a small amount paying for her services, which is understandable. It’s what my father used to do so I’m doing exactly the same and she’s a lovely person.
 

After he had a stroke, Barry was able to rely on his wife for reminders about things he had forgotten.

After he had a stroke, Barry was able to rely on his wife for reminders about things he had forgotten.

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And that affected you in terms of your speech, and did it affect your mobility as well?

Yes, I had a stroke, as I said, in 1997 and, at the time, I couldn’t speak or I spoke double dutch, mobility was pretty poor down one side. Memory loss was complete. I was rendered deaf. And, luckily enough, I knew my wife for fifty years I think I’ve known her, well, she knows virtually everything I know so I could I could fall back on the information and then it would come flooding back. Because one lady I met in a local supermarket and she and she started talking to me and I said, “Excuse me, do you mind telling me who you are?” Shock, well, she said, “I’ve known you this last thirteen years.” 
 

Fiona doesn’t feel she needs counselling right now as she has a supportive family. Ideally, she would like to meet other people face-to-face who have both diabetes and epilepsy.

Fiona doesn’t feel she needs counselling right now as she has a supportive family. Ideally, she would like to meet other people face-to-face who have both diabetes and epilepsy.

Age at interview: 25
Sex: Female
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but I mean there had never really been any sort of offer of counselling really. I mean the services, they say the services are so stretched it’s more sort of if you want counselling, you’ve got to go out and find it yourself really.

Right. Right.

I mean I’ve been lucky. I’ve got a very supportive family and a very supportive husband so I don’t feel that I’ve had to go out and seek counselling at the moment.

My husband has epilepsy as well.

Right. Right.

So it sort of hit me because I’ve seen how, because he, his is worse than mine, and I’ve seen how bad it can get and it sort of things, how am I going to cope with trying to control diabetes and trying to control epilepsy as well? I mean I’m lucky. I’ve managed to sort of deal with it in my stride really and I have a really great support system from my husband and from my family, but some people don’t have that and there needs to be more emotional support, even if it’s sort of online, you know, a local online thing where you can talk to people locally.

And be able to arrange meet-ups because, you know, I’ve, I mean I’ve spoken, most I sort of speak to people online but I mean I’ve yet to sort of meet someone with both diabetes and epilepsy really.

So I can meet someone who understands one condition but not the other and it sort of, it can get quite lonely at times and I think there definitely needs to be more emotional support.
Tammy and Pat both had husbands who worked (or had worked) in medicine and could be called upon for advice or to accompany them to health appointments. Pat and Val both had daughters who would accompany them to potentially problematic health appointments. However, support wasn’t always forthcoming from friends and family from whom it might be expected. Derrick felt his immediate family “didn’t want to know” when he had a stroke. Chris had a similar experience in relation to his friends. Farza’s parents found it difficult to accept a mental health diagnosis, which led Farza to social isolation and coping alone.
 

Chris doesn’t feel people want to know about him having a stroke. Although this hasn’t depressed him, he focuses on making the most of his life and enjoying what he can.

Chris doesn’t feel people want to know about him having a stroke. Although this hasn’t depressed him, he focuses on making the most of his life and enjoying what he can.

Age at interview: 68
Sex: Male
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I took quite a bit of explaining by the doctor to see exactly what had happened to me. I found, I’ve recently had a letter from my surgery asking if I’d been depressed by the stroke or diabetes and hadn’t even thought about it but philosophically, I think there’s not much you can do about it and I find that, whereas most friends are pretty sympathetic, when I explain to my friends that I walk with a limp and my voice had slightly slurred, they said, “Well, nothing had changed.” Which I thought was pretty unkind but they really, when you explain your condition to your men people in the pub and so forth, when it really comes to it, they don’t really want to know because they don’t want it to happen to them. And it’s probably best not to mention it and just carry on living your living your life as such. Actually, I certainly haven’t been depressed about it. I find that you’ve just to make the most of what you’ve got and enjoy, probably makes you concentrate a bit more on enjoying life and making the most of what what’s happening that you’re still alive. [laughs] What else can I say?
 

Derrick found little support after he left hospital following a stroke. The main help came from his wife and the Stroke Association.

Derrick found little support after he left hospital following a stroke. The main help came from his wife and the Stroke Association.

Age at interview: 61
Sex: Male
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I was in hospital must have been three or four weeks, I was in hospital.

Right.

In the in the stroke unit and it went from there then. When I came out from there, I had to go into a wheelchair. Basically, there was no support from anywhere. That’s the only disappointing thing that we found, that there wasn’t any support.

Right. Right.

My wife was talking to a friend one day and they told her about this lady in [city 2], which was to do with the Stroke Association.

Right. 

And so she got in contact with her and that was the only time then that we had a very good support off this lady and she was very good, very helpful but, apart from that, the wife was totally on her own. There was no support at all and, funny thing about it was, even the immediate family didn’t want to know, which was surprising.

You know, there was, it seemed to be like almost a stigma on somebody having a stroke.

Right. Right.

You know, that and I’ve never been the same since, you know, and I will notice how, funnily enough, I’ve got to go and see my GP next week because I noticed the going, memory going short again.
 

Farza’s parents don’t understand Tourette’s syndrome. This has led to social isolation and difficulties coping.

Farza’s parents don’t understand Tourette’s syndrome. This has led to social isolation and difficulties coping.

Age at interview: 41
Age at diagnosis: 15
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The family just don't understand it.

Right, okay.

They don't understand Tourette's.

Okay.

I don't think they're willing to understand it. My dad's not willing to accept it. My mum can't seem to understand it, she's thinks...she's never seen it before...

Okay.

...and it's something that I can control. Which is fair enough, it makes sense. But it's me living with it who has a hard battle, to live with.

And I'm very lonely and isolated with it, it's not helpful at all.

No.

But my sisters have their own lives to lead, so.

So you're kind of, completely independent then, as it were, in that you don't need, you don't need help from people, to kind of live a normal life. You don't have to have carers in, or anything, anything like that?

No. No, I don't have carers like that, no. But I can, I just about manage, I think.

Okay.

I'd say I just about manage, but no, I do have problems when I... I think, I could do a lot more sport, but I don't have the, I don't think, what is it, I don't have a social worker.

Right.

And my local C...see, I used to have a CPN, years back. And I think the rules and regulations regarding CPNs have changed. I still feel I need professional help. I feel I need my CPN, I need a CPN. And I need to see my psychiatrist more regularly, but they said to get a CPN, you've got to be severely, medically ill. That's like, you've got to be schizophrenic, and if you're not, they can't give you a CPN. Which is not fair, because I meet, I hit the borderline, with my problems. But, they still say no. Which my psychiatrist, who I've seen recently, he said, I'll see if I can get you to see a psychiatrist, I mean, a CPN, because I think you really need to, because your problems are to, you know, mingle with society. 
The companionships of pets can also help people cope with illness. Kevin was the only person in our study who specifically mentioned a pet helping him to cope with a condition; in this case, hip pain.
 

When his hip pain gets bad, Kevin is helped by lying with his cat.

When his hip pain gets bad, Kevin is helped by lying with his cat.

Age at interview: 54
Sex: Male
Age at diagnosis: 7
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Yeah, it does get on my nerves sometimes, I…when the pain gets really bad, I just, like, lean on that side…

Right.

Try and ease off the pain and the cat sits with me, because he’s on…because of the heat from him…It does my hip a bit of good.






* Helen L Brooks, Anne Rogers, Dharmi Kapadia, Jack Pilgrim, David Reeves, and Ivaylo Vassilev. Creature comforts: personal communities, pets and the work of managing a long-term condition. Chronic Illness 1742395312452620, first published on July 9, 2012 doi:10.1177/1742395312452620 
 
**. Ziebland, S., Ryan, S., 2015. On interviewing people with pets: reflections from qualitative research on people with long-term conditions. Sociology of Health and Illness. (Wiley Online Library) DOI: 10.1111/1467-9566.12176
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