Impact on the family
Chronic pain can have a profound influence on family life and relationships. Many of the people that we talked to were very grateful to their families, who helped to keep them going and gave them pleasure in life (see also 'Relationships and sex life' and 'Parenting, children and grandchildren').
Families can go through a bewildering and emotional time watching the person suffer and feeling frustrated that they cannot do anything to help, especially when treatments don't work. One woman felt that her close friends and family had to go through a natural grieving process over the loss of the person she had been.
Many people felt that there was not enough support for families, although NHS Pain Management Programmes or support groups had sometimes run helpful sessions for families.
Most of the people we talked to said that chronic pain sometimes makes them self-centred, moody and intolerant and that often they took their pain out on those closest to them by being snappy, and even aggressive. Sometimes it was best to be alone at these times, although some explained that they did not always realise what they were doing. Many felt guilty about what they put their families through and had tried to make it up to them.
- Age at interview:
- Medically retired maintenance plumber; married; 2 children.
The thing about, you see the thing about the aggression never went away I can't get rid of the aggression, sometimes I'm so quick tempered its out before, its out before you realise it and the thing is, that hurts me, you're hurting the people that actually have done a lot for you, your wife and your family, you're hurting them.
I reckon they'll be hurt even more than what I have in the accident because they've been more the mental torture of me going through all these different phases. And I think if anything, I think your family deserves a bit better than, than what I gave them.
But again I didn't realise I was doing it, there's no, there's no good me saying that I did know I was doing it, I didn't know, it was just the way I felt at the time. Just the way the pain was actually affecting me.
And not being able to work that was the killer, that was the bit the killed me, not being able to go out and do your normal days work.
What advice would you give to somebody about how you are with your family?
Well the only thing that you can do is just actually, is just wait until you're better and actually you've just got to make it up to them. Because sometimes actually when you're in pain it takes over, it takes over your mind itself because you are actually too self centred in your pain, you're too just sort of conscious of your pain to bother about anybody else's feelings.
You become self centred you become just me me me, deal with me. If you're getting that way and you're able to walk and you're causing a lot of bother, just get up and go for a walk, just go out the house and go a walk. Because its not all families that will stick by you actually when you give them abuse. But I think I'm one of the fortunate ones that had a good family that understood what I was going through and they've helped me through it. And its now my turn to pay them back.
- Age at interview:
- Retired agricultural worker; married; 4 children.
What affect has it had on the family? Virtually they have they've been very, very good, I have to admit they've been very good. At times I know I've been really horrid with them, and I mean they don't come oft... visit very, very oft... I mean don't get me wrong, we're a close-knit family, my four boys and my wife and myself, we are very close together nothing can happen to one that the rest are not involved in, you know what I mean, because I could go on a long story with that, especially when I had my heart attacks I could tell you a lot of things about that but, that's a different story.
No what I resented most about the pain was I was doing something that I would never ever normally do, I'd bark, I'd be aggressive with my family, even my own wife, she often says to me, 'Oh there's no sense speaking to you like you are today', and that's the stage that I was at, for they knew what kind of an answer they were going to get from me because the pain was so intense that I just didn't have any time for anybody.
I just wanted to be on my own and left to see if I could get some kind of relief so I could come back and talk to them for a while before they went away, but it never ever, it never always worked out that way, touch wood at the moment.
And I did come to the stage where I said to them, I said, I have to try and get this under control because its going to lead to friction, its going to cause a lot of problems if I do not pull together, and I'm going to cause my family to stay away, they are not going to come and see me, and I'll no see my grandchildren and I can't afford to do that because they are my grandchildren, and I'm only here for a certain amount of time.
And I don't want them growing up to think that I'm a, I've been like this all me life sort of thing or all their life sort of thing, a continual person that you cannot talk to, a person that's always grumpy when you come and see them, a person that's always in a bad mood, sort of thing, I don't want that for my grandchildren.
My boys they're enough, they're old enough to, they know now that I've been a dad and all like, but just like in the past couple of years I would think that they've come to realise, they've got to know that I was in a lot of pain and I've been suffering a lot of pain for a few years, and like I said, I've got a control now where they can come in and sit and talk and have a laugh and that with them, and I don't let anything bother me.
Some preferred not to talk about their pain or hid it from their family because it could become a “nag”. Others commented that, whilst they didn't talk about it, their family could sense that they were in pain. Some people who lived apart from their families didn't want to burden them. A woman who'd moved away from her home country said her family had enough other things to worry about.
- Age at interview:
- Age at diagnosis:
I also think about my, what's left from my family, they're back in my country, they also complain from pain. So whenever they call me 'How are you?'. 'I'm all right' I say 'I'm all right', I don't want to complain and increase the worry, their worry about me more.
So 'I'm all right' I say 'I'm okay'. 'How is your health?'. I say 'I'm okay'. I don't say 'I'm not well' or 'I have headache' or this or that because like today I have headache, tomorrow I'll be better. Why should I make them worry and think about me.
They're already thinking about me and about my loss and so I just don't complain to them at all. Yeah. I know they have, they have enough there and they don't need more. But I just don't say to them. But close friends here, of course, know what I suffered.
Many people talked about the positive support from their families including understanding, tolerance of their moods, belief of their pain, or a good shoulder to cry on. Several felt that their pain had actually brought them closer to a family member, most often a parent but sometimes a brother or sister.
Some had relatives who were healthcare professionals, or who had their own health problems, and found they were particularly understanding and supportive. A few men suggested that because they were not working they had spent more time with their children, which had brought them closer together.
- Age at interview:
- Retired university teacher and author; married; 3 children.
Yes, use to talk about this a lot, particularly with my youngest child. He was 14 I think it was when I really had that collapse. And it so happened that, that collapse coincided, well it led to us being thrown together a lot. He was at High School and he went on a skiing trip the same winter as I had my collapse. He went with the school and he got a broken knee while he was skiing and his cruciate ligaments were torn and so he was home for nearly three months because he wasn't allowed to put his foot to the floor.
We really, that was the, I suppose, if there was a bonus at all, from me having my problem, it was the relationship that we welded together at that time. Because I became his teacher. He had stuff sent from school and he'd never been confident in school work. But we spent two hours each day, I suppose this kept me alert and alive and stopped me getting depressed, we spent two hours each day doing his school work.
And we talked a lot at that time about the effects of my illness and he saw it as a positive thing because he'd got something out of me that he never thought he ever would. We had this very close relationship which, which still continues. That's not to say we don't have a close relationship with the others.
People often relied on their parents, children or wider family for practical help with the housework, DIY and even personal care. Whilst support with daily activities was appreciated, occasionally people felt that their relatives were inclined to overprotect or 'wrap them up in cotton wool'. Communication was vital in getting the right balance of still doing things and asking for help when it was needed.
- Age at interview:
- Age at diagnosis:
- Medically retired care officer; married; 3 children.
Yes well, normally I don't like anybody in my kitchen, I prefer to do my own cooking. But there is times I have got to give up and it's a case of if I know that I'm going to be any sorer than I am when I walk into the kitchen somebody else needs to do it for me.
There is a time when well meaning relatives and your husband or your wife you're glad of them, they are there. They over compensate for your pain and they think they're being wonderful for you because they're doing it for you, and it's a hard thing to try and sit your family down and say to them look alright 'I'm in chronic pain but I've still got to live. I've still got to do things on my own and I'll do as much as I can without hurting myself, and then I'll ask. If I need your help I will ask for it'.
And believe you me, its harder for them to sit and watch you doing it than actually asking them for help. And it's a case of they think you're going to be, you're going to do so much you're going to be really sore. But when you get to the stage that you've done your relaxation and your pacing and your things that you do with the Pain Association it means that you know your limitations.
So therefore there is sometimes, yes definitely there is sometimes that somebody else has to do something for you and you've got to be gracious enough to ask. But you have to ask you don't want everybody doing everything for you because if they, if you start that you're down a slippery slope, you end up sitting in a wee corner, feeling sorry for yourself, you can't do anything and the less you do the less you can do. You know, so it's a vicious circle, you do what you can and what you can't do you ask for help. And that's another hard lesson to learn as well, is asking for help.
Often a partner had to take on more responsibility, or there had been a change in what they did in the family (see also 'Relationships and sex life'). People with older relatives were sometimes concerned that they were not capable of looking after them.
- Age at interview:
- Unemployed; divorced; 2 children.
Well, my mother's at the age now, normally somebody at that age would not really need looked after but she doesn't really need looking after, she's quite independent. But she's in a lot of pain as well.
She's got a dodgy back, arthritis, asthma, bronchitis, whatever it is and she really needs to be taken out otherwise she gets static stuck in the house all the time. I mean I think it was about 2 years ago she stopped going on holidays abroad or anywhere because she was in too much pain. She didn't want to go anywhere. She's 'I'm better off at home' and it's her way of thinking like. So she just stopped going on every holiday and when she gets something wrong she's like 2 or 3 months at time before she actually gets back into the swing of things and gets moving about.
But she's just coping with life the best she knows. And I feel a bit annoyed at times because sometimes you want to help them. Do things for them and all the rest of it and I can't. I'm stuck. I've got my pain. I do as much as I can, when I can but obviously if she's needing a job done about the house she's now actually got to pick up the phone and get a tradesperson out to pay for it and to do the job and pay for it. Whereas before it was like she'd phone me up and I'd come along whenever I could and do the job that needed done like. You miss things like that but such is life.
Some people that we spoke to felt that some members of their family did not understand or believe their pain. This was upsetting, but because it is an invisible disability and can vary so much from day to day it can be hard for others to understand. People who didn't have family support often relied more on close friends or healthcare professionals (see also 'Impact on friends and reaction of others').
Last reviewed May 2015.