Impact on friends and reaction of others
It is perhaps not surprising that friendships sometimes become difficult to keep up or simply end. However, many people considered themselves very lucky to have good friends who had shown great kindness and support.
It can be hard for friends to know how to behave with someone with chronic pain - should they ask about the pain? Some people noted that over time friends stopped asking how they were, or that people asked, “How are you?” without seeming interested in the answer.
Some said they hated being asked about their pain, while others were happy to talk about it with some friends but enjoyed 'normal' conversations with others. One woman suggested that it would be better if people asked whether you wanted to talk about the pain. Others felt it was important, at least initially, to try to explain to friends how the pain affected their life.
- Age at interview:
- Research student; single.
I've got friends who I think all understand differently and all act differently and they've got their different approaches to it all. I've got some friends who will ask me probably every time they see me 'How's your pain? How are you?' like really outright question and then I've got other friends who never ever ask but I think most of them do really appreciate what it, what it is that I'm going through I think some of them don't, but I've found people to be very, very supportive all the way through.
And it's like a real help when people do just say 'How's your pain?' and like okay sometimes you are not really in the mood for it because you're just out enjoying yourself or something but it's just really nice to have someone be just so honest and upfront about it because a lot of the time it feels like you're just going through this thing secretly.
It's like, sometimes I've felt that I've got this secret little world that no one else knows about because you, I don't mention it usually and they don't mention it and it's like we are pretending nothing's actually going on. But I've got, I think I've just got different relationships with different people and it's quite nice to have a variety of approaches to it all. Like it's nice sometimes to be with a friend who doesn't ever ask because then you can just kind of get on with things and feel like you're just you and you're not your pain.
- Age at interview:
- Age at diagnosis:
- Administrator (trained as nurse); single.
I think friends and how they react to you, it's strange. It's actually changed over the years as to how I want and need them to be with me. I mean, in those early days, I really did need so much support, I mean, especially when I had to stop nursing.
And, you know I didn't know about a lot of these other places now I can get information from and you do need somebody to support you but also to be realistic. 'Cos it's amazing how, in the early days, my friends they were 'Oh you'll get better, you'll be fine' and it is the advice you kind of automatically give out to people, but it wasn't what I wanted to hear. I needed almost, I think it is almost like having that permission that I am allowed to get really angry with it. I don't have to put on a brave face and say 'Yes, I'm okay, when I'm not' and I think some people did think I was faking it.
And then, you know, sort of, my friends knew that it was going to be long term and carry on and suddenly it was like 'We won't ask you about it ever again'. And I do have some people I know who won't ask me about it, ever. You know, I don't know whether it's a case of their hoping it's a thing in the past, or they'll think 'Oh she'll tell me anyway, what's the point of asking?' I don't know what it is.
But it is almost as though it's one of those issues that we'd better not talk about. And I don't know, I don't like that personally because, I think if you're with friends, you need sometimes permission to explain to them exactly how it is for you and the fact that it does have implications for you, you know, especially if you're going to go out socialising.
One of my big things for a long time would be when I'd go out shopping, after ten, fifteen minutes I have to sit down for half an hour and some friends just hated that. They just couldn't believe how bad I'd become. I mean, I'm lucky now, I can walk a lot more. But, you know, it is almost like 'Well, she's that bad, we'd better not talk about it just in case. Maybe she'll start crying on us'. And you just think 'Hang on a minute, ask me. Ask me what I want, how I want this to be in the relationship, not how you want it to be' and I think that's very much where you get into that you start thinking about everybody else's feelings.
And it's something that I put up from such an early time, because of the reaction I was getting from people, that I just thought 'Fine, I will lie to them'. And so you just, there are certain friends that I know who have been brilliant, who've been with me throughout the whole journey, and they're the people who know. But there are some people who I've lied to and I will say 'Yes I'm okay thank you'. It's very much like one of those standard responses that just comes out without you thinking.
You know, sometimes there are people there who will say 'how are you' and you think 'why the heck did you ask me that question 'cos you really don't care'. You just know, as soon as they've asked they're not really bothered, 'cos they're thinking several things ahead. And, you know, I don't like false sympathy, people doing it just for the sake of doing it, to say they've been sympathetic.
You know, I'm very much you either ask or you don't. But I do think you should really sort of say to the person, you know 'What do you want, do you want me to talk about it or not?' And a lot of the time I don't want to talk about it because your life becomes almost focussed on it. But then there are times when yes, you need to.
People valued friends who were able to pick up when the person was in pain without having to ask, perhaps by noticing a facial expression, or a particular posture. They were also prepared to be flexible about plans, perhaps by arranging social evenings at home, realising that favours might not always be returned, and being willing to take regular rest breaks when out and about.
It also meant being tolerant when the pain was bad and accepting last minute cancellations (see also 'Social life and special occasions'). One woman's friends were happy for her to make herself comfortable when she visited and were always offering to help. Another explained that her friends knew she needed to stop regularly when they were out shopping.
- Age at interview:
- Secretary; widowed; 2 children.
How do your friends react to your pain?
Well they're fine and I can you know, I just put my feet up on the settee or whatever and you know they're fine and if they can do anything for me they would. I guess in some ways I'm, I just, I'm too independent really because I don't like asking people to do anything if I can help it, if I can do it myself.
I guess sometimes I have unnecessary pain because I haven't asked someone to help. But I know they would if I asked but you know the great relief when I go to friends is that you know they know that I've got the pain and if I have to get up and walk around, that's fine or if I put my feet up on the settee that's fine. So you know it's much more relaxing.
I have been to a couple of meetings that I particularly wanted to go to, you know and sitting on hard chairs I find it very difficult and I had to stand up and then you find that the whole room seems to look at you wondering why you are standing and it's, I find it very embarrassing.
Friendships could sometimes feel one-sided, although some people said they had become better listeners. One pointed out that because she was at home in the day she could help by waiting in for deliveries, or making phone calls or internet enquiries for her housemate.
Pain can dominate people's thoughts and many were aware that it was potentially boring or depressing for others to hear about, or as one man put it 'the most negative thing you can do'. They made a conscious decision not to talk about it and sometimes described putting on a mask or veneer with all but a few close friends and family.
Some felt it was more appropriate to talk to people who could understand their pain, perhaps a professional, or people they met through support groups or on the Internet (see also 'Support groups').
Making new friends was sometimes difficult as it meant telling their story and explaining their limitations. However one woman felt that, in some ways, it was easier because new friends accepted her for what she was, not what she used to be. A few people commented that greeting people could be awkward because they found shaking hands or hugging painful.
- Age at interview:
- Retired airline customer service representative; single.
I don't go out as much as I would like. I really don't but, I... and I'm still frightened of... I'm still very frightened, like when we were... one of the things that I would love someone to tell me and this is some, one reason I'm going to go along to the support group is, how can I communicate to someone, 'Excuse me, I won't shake your hand because it hurts me so much'.
How can I say that without making myself sound like a whinger? I don't know, I've never come up with a suggestion. With friends, close friends I give them a hug. It inhibits me as far as mixing with the opposite sex is concerned. I don't really feel comfortable about... I'm alright speaking on a surface level with them, men, but the very thought of telling someone that I'm just one big ache.
You'll have to, you'll have to bear with me if I suddenly can't move or something like that. It's just frightening to me. That really bothers me. The social aspect or the lack of social aspect is very difficult and I have no family so but I do have good friends. But it is still very difficult.
People said they frequently came across negative attitudes from strangers and sometimes from friends. Because pain is invisible and variable some commented on the stigma of being thought to be a “malingerer”, faking it, or getting funny looks or comments when using a disabled parking space.
- Age at interview:
- Age at diagnosis:
- Writer/driver; married; 2 children.
I think it's hard for anybody. The basic problem is that I look perfectly normal, you know, to all intents and purposes I can do most things. I can drive a car, I can do the shopping, I can meet trains. I mean I can, I look perfectly normal. I walk, I could walk upstairs. Okay I pull on the handrails to get upstairs but to... I'm a complete physical specimen.
If I'd lost a leg, one often feels that pain, people with chronic pain often use a walking stick because they want people to understand that there's something wrong and that it can't be seen. Pain can't be seen. It's sometimes it's very difficult. It's particularly difficult because when I'd been walking for a bit, because the endorphins are flowing, I can walk more or less normally.
And so for example I get out of my car in the disabled spot, I have a disabled badge, when I get out of a car, to get me out of the car is intensely painful and you, you sort of creaking upright and getting back into gear, you know, but after I walk round Tesco I'm back, you know I can look like a normal human being and so you get a sense sometimes as it were 'Nought wrong with him', you know. 'Nothing wrong with that fellow. He's a phoney.' And I'm pretty impervious to it but you don't like to be thought a phoney.
And I think even with close personal relationships, when they see you being completely normal because you're in full distraction mode. You are absolutely not thinking about the pain. It's hard for them to believe that there's actually anything the matter with you.
People could be laid up in bed one week and the next week could be seen exercising or gardening. This sometimes raised suspicions and unkind remarks about whether they “really had pain”. One man said he could well understand this because before his back pain started he had been sceptical about ex-colleagues who had 'conveniently' gone off work with back pain shortly before retirement. Needless to say his perspective had changed radically.
Many felt that the biggest problem was that they looked perfectly normal and often healthy. Women sometimes felt that just because they put their make up on people assumed they were fine. Similarly men commented that people equate looking strong with being fine.
- Age at interview:
- Pensions administrator; married; 2 children.
I think for the friends who really knew me, they understood what was, what was going on. For people who maybe didn't know me that well or for, you know, a stranger to recognise my pain would have been very, very difficult and I'm also sort of bringing into this sort of the medical profession as well, because very rarely did I get up in the mornings, pain or no pain, I would put my make-up on and, when I've got my sort of, my mascara on and my lipstick on, I look fairly healthy and I think if somebody walking down the street looks fairly healthy why should you think otherwise?
And I think going along to my doctor sometimes and saying, 'You know, I have this terrible pain and, you know, I find it difficult to sit and I find it difficult to walk and I find it difficult to do the next thing', but I look the picture of health and I think it's very difficult to, for people to put the two things together. They think if somebody is unwell, then they should look unwell.
It's very difficult to put together somebody who looks perfectly fine and dandy, in fact, you know, really looking well to then equate that with somebody who is in pain. Like I say, it's really only a couple of very close friends and a couple of members of my family who I think appreciate how things were. Others just did not understand the two things going together.
One man's daughter had suggested that he needed 'P' for pain painted on his forehead. People with MS and ME, which are not usually associated with pain, and a woman with depression, felt that people did not always believe them.
- Age at interview:
- Retired risk management/human resources, Voluntary work for Action on Pain; married; 2 children.
I think in terms of getting people to understand about chronic pain. First of all it's got to be an acceptance that it's there. As I said earlier, you can't see it. My daughter says 'Dad you should have the letter P stamped on your forehead so then people would know that you're in pain'. I think that's extreme, but she's got a point.
But people need to be able to talk to you freely about it, to, if they're not sure, ask don't shy away from it because it makes it more difficult for all concerned. Try and understand how it affects you. I sometimes screw my face up with pain and people think I'm smiling at them and they smile back and you think 'You don't realise what's going on.' And that's, that's the sort of thing. They have to talk to you and saying 'Okay, you're in pain, what can I do to help?'
And don't be afraid to ask if you need help. But to be able to tolerate, sometimes it slows you down and you can't do things as quickly as you want to, it wears you out, it's frustrating, and to be tolerant of it but try and understand what's behind it, that's the important thing.
As I said, it's easy to see a plaster on a leg and you think 'Yep, broken leg' good chance that you got it right. But you can't see the pain and so you need to just take that step further and it doesn't make somebody any different, they just need that little bit of understanding.
It was suggested that although the general public understands acute pain, such as a broken limb that gets better, chronic pain is poorly understood. Many felt that it was difficult to comprehend chronic pain unless you'd experienced it yourself, but suggested that there was a need for more public awareness. Some were involved in campaigns to promote awareness of chronic pain.
- Age at interview:
- Unemployed plant mechanic; married; 3 children, 2 stepchildren.
Well, it affects my relationships because I don't feel there's an understanding when I meet people or I've been introduced to people. Maybe on my behalf I don't push that forward enough to them and maybe the other friends that I'm with they're not conveying that to other people that I'm round about and maybe they don't even understand that they maybe dealt with a sore, kind of sore head or something like that or even a broken limb, but in the main these things heal up, you've got pain for a few weeks, but they heal up and that's usually the end of the pain.
But this is a thing I've been pained for almost 17 years now, and I've had other injuries and whatever on top of but this I'm carrying, but they come and go but it always come back to this original kind of pain. And I believe that new friends, I can understand them not knowing, but maybe people that's known me for a long time, I feel they don't understand that a pain can last that long.
To me it's like the same thing as a broken leg or it's a sore head, it'll be there for a wee while or 'oh there, there, that's a wee shame but it'll get better in a wee while' but they don't seem to understand that this is a lingering thing, the pain that I feel and it's a burden sort of thing.
So I find it hard for them to take it basically in, what I suffer, and the only kind of pointers they seem to see in me is if I'm quite crabbit or whatever, because I probably do try to bare a face on things and go well everything's OK and whatever and try not to complain too often but it's something that I've got and I feel, in the main, they don't have it and it's, they'll not understand it properly that this is a thing that happens to people. If they could be more understanding of this.
Last reviewed May 2015.