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