Coping with the emotional impact of chronic pain
Pain does not just affect the body. It also affects how people feel emotionally. People can experience many losses because of pain, for example jobs, finances and home life, which sometimes leads to loss of confidence and low self-esteem.
Thought patterns can become negative, low and full of frustration. Pain can take over, disrupting sleep, making tempers short and memory and concentration poor. Such feelings can also affect peoples' ability to cope with pain and even the levels of pain experienced (see also 'Sleep, stress and environmental factors').
Nearly all of the people that we talked to said that pain affected them emotionally. The worst time for many people was going through the frustrating and often unsuccessful process of searching for a diagnosis and treatment for their pain. In the early stages people were anxious about the cause of pain and frightened at the prospect of worsening pain, particularly when they experienced a flare-up. (See also 'Coping with flare-up').
Often people felt disbelieved by the medical profession and even doubted themselves. One woman described how she stopped taking her medication to see if it was all in her head.
Started wondering whether she was imagining the pain so stopped talking her medication and found...
I've had it four years, I'm going to have it for another sixty or however many years I live' and, you know 'And I've lost my job because of it. I've lost friends because of it' and I had enough.
It was almost as though I think that sort of around that time, coming up to around the fourth year, for some reason that was a time it really hit me what having chronic pain actually meant. Which is then, when I looked back at what I was saying in the first year of 'Oh yes I can cope with this, it's fine' and as I say, three years later I wasn't. But, amazingly, I mean my antidepressant medication was changed, and I was very lucky.
My GP was very, very good and my pain was managed reasonably during this time. Although it's strange, I often find the times when your mood drops is the time that you start questioning yourself as well. 'Have I really got pain? Am I making it up? Is it in my head? Maybe everybody else is right, maybe I'm wrong'. And it is, it is nearly always at the times when you're really bad and it just does.
And then I go through these times of where I've stopped taking my medication, just, not so much the antidepressants, but my painkillers, proving to myself it was in my head. But of course I was very lucky if I got past sort six or seven hours, at which point I would be in excruciating agony, you'd have to take them and then it would take another two or three days to get back on top of the pain again. And at that point then you can convince yourself, yes okay, it's the pain medication that was working or is it a sensible level.
But, even now, I still have days like that, where you still sit there and you think 'Is it in my head?' And I know it's not, I mean, I'm not stupid, I know it's there and I know I have it all the time, but I still question it. But it was, it was definitely worse then at that point. I think, as I say, just because I was so depressed.
Many people experienced feelings of “Why me?” “What have I done to deserve this?” although some offset this by saying that it could happen to anyone and there were people worse off than them. However, these feelings could resurface when people were having a particularly bad time. A man who sometimes felt this way tried to avoid a downward spiral by thinking positively.
Says you have to challenge the "why me" thoughts with "I can cope" and "it will feel better in...
Positive thinking, I mean to give you an example, if I'm out on one of the rare occasions, maybe I'd go for a drink or something like that and we're in the pub, having a few pints with the lads, and if my pain comes on, they wouldn't know. They'd notice me fidgeting about but I suffer it to the extent that I think if I get through the night, fine it's okay but if I'm getting to the extent that I can't handle it anymore I'll just say 'See you's later'. I phone a taxi and go home.
But there is nothing you can really do to get rid of your pain, you've just actually have a wee bit 'oh it'll be okay in the morning'. A bit of positive thinking helps and it puts you in a better frame of mind and when you do wake up the next morning and you feel a wee bit better, your positive thinking keeps on going.
It's when you get into the downwards spiral a wee bit of depression and thinking this is just going to get worse, it's never going to get better that can make you worse. It's just a bit of self healing in itself, self help like you know.
Those who had been injured were often angry with the person or organisation responsible. A man who felt angry towards his employers was helped by a psychologist to come to terms with his accident and move on with his life. A woman came to accept that her injury was an accident that could have happened to anyone.
Was bitter with his employers but the psychologist helped him realise that he needed to accept...
Well I thought, the first just sort of reaction was they think this is all in my head, they think I'm daft, so I said. 'So why am I going to a psychologist', they said 'Well they can help you speaking about your problems and all the rest of it'. And I wasn't too keen at first and then my wife said to me 'Look go and see what can be done, see if it helps you'.
After, I don't know if I was going there a year I can't really mind. But after a period with her of actually just speaking she gave me, she gave me time to explain how I felt and then she gave me different sort of ways of just sort of looking at myself. And the first thing she said 'The only way you're going to over come this is by accepting what's happened to you, accept it that you've actually had a bang on the head, accept its done and dusted, and just get on with your life'.
So at first I was a wee bit reluctant because I didn't want to accept it because I heard that the man whose workshop I was working in was still working and he was by his retiring age. He was still working and I was just lying about in agony, in pain. I felt bitter but after a while it sunk in and I said to myself well its happened, lets get on with life, lets see where we can go from now. Its took a long, long hard road, its been a struggle, its caused a lot of heartache but as long as I can do and say and actually to my family is I'm trying to make up to them all the hurt that I caused them.
Chronic pain often stopped people doing things that they used to do, which could make them feel frustrated. Bound up with this was a sense of guilt and anxiety because they could no longer work or care for the family. Many peoples' lives had changed completely and some even said that they hated what they had become, although others emphasised that you can live a fulfilling life despite pain (see also 'Coming to terms with pain').
Chronic pain can lead to isolation and loneliness, partly because it's difficult to get out but also because people withdraw into themselves. A man said he felt vulnerable when he was out and about. Another described an experience that others had, of getting a painful muscle spasm in public and being taken for a drunk.
Had several spasms of pain in public and was embarrassed because people thought he was drunk....
The way I looked with the long hair and the beard, things like that, they just took me for a drunk and called the police and the police came and I explained my situation and they helped me into the car and took me home. So it was pretty embarrassing and after that when I got to the stage where I didn't want to go out just in case it happened again. It was an embarrassing situation to be in.
To explain something, this illness, not illness, this pain can be very, very embarrassing in front of people and it tends to make people with this similar type of pain I'd say a bit reclusive just in case they get the severe spasms again. In front of people it is really embarrassing because you just don't know what to do, It's hard to explain I mean one minute you can be fine, the next minute you can be actually rolling about the ground screaming. I wouldn't say wailing, but lying on the ground sort of screaming in agony.
But the pain is that severe at times. Luckily, in the past couple of years the pain hasn't been as that severe. You know when the pain's coming on, I can actually feel the pain coming on, and you get the wee twinges and then all of a sudden you get this severe one second spasm and that's it.
Sometimes if you don't catch it in time, you can lock up and the severe spasm can go on for 2 or 3 minutes before it actually seizes up a bit, you know loosens up, then you can move. But a couple of times I've been out with friends and the spasms came on and I can't do nothing. They had to go away and get a taxi for me to get home. So it does make you a bit on the reclusive and depressed side.
Isolation also came from a feeling that others, even friends and family, could not understand the pain. On the other hand people sometimes felt like they had pushed friends and family away because pain made them self-centred and they were often angry and aggressive towards others (see also 'Impact on the family', 'Relationships and sex life' and 'Impact on friends and reaction of others').
Explains that you can feel lonely even when your family are around because pain is very...
But, [husband's name] says that something always good comes out of bad and he thinks that both the girls have learnt not to take life for granted. And they've turned out, they're quite empathetic when people have got problems, you know, they're not like a lot of teenagers, they will actually pay attention and feel something for that person, you know. So I suppose that's one good thing that's come out of it.
But, I think the loneliness side of it was really the worst you know. I mean, even with your own husband, if I'm in another room and the pain starts getting bad and he comes and brings my pain killers and things and, it's not, it's as though he's still not there, it's just something internalised that you just feel you're, I don't know, you just feel very alone about it.
A man told us that he had turned to alcohol in the belief that it might help his pain, but realised it made him abusive and was not going solve his problems. Healthier ways of coping included exercise, meditation and yoga, or just breathing deeply.
Used to drink alcohol in the hope it would help his pain but realised it just made him abusive.
It would actually come out because my tongue was a bit looser or whatever through the alcohol. So I would say possibly I was more abusive when I had alcohol in my system and the way I can try and contain any kind of pain was kind of released, so, but, I would feel maybe the next few days, I would feel fine, I would seem to have had something off my kind of chest, I would feel relieved that I'd got something out or whatever, but I believe that I possibly caused quite a bit of damage with how it was actually put forward.
So I mean I decided that I was not going to over drink, that wasn't going to solve the kind of problem or whatever and I've just lived hoping that something could be found that could kind of ease the pain and up to now the best that I've actually had has been the TENS machine.
Feelings of anxiety, frustration, anger, low self-esteem, isolation, guilt etc. all contributed to low mood or feeling down. Many said they often felt tearful, although for some having a good cry could be therapeutic.
When she has a flare up she tries stretching and taking a bath but says that sometimes a good cry...
But I pour a bath and get in and stretch and luckily in Scotland or in Britain in general as opposed to the United States, the bath tubs here are nice and long. Bath tubs in America are never long so... but if you, if for some reason you cannot do that, if getting into a bath tub just seems like too much of a, too much like hard work, just stretching out on your bed and especially moving your feet and, without any pain, you know, don't do it if it hurts, but just stretching anything you can to me is the best way to go.
That's the way and give in to the tears. If you are all by yourself give in to the tears. Or even if you're not by yourself if you've got a loved one that can relate to you let them see it so that they know what's going on. But, I think, tears are therapeutic.
Feelings could spiral out of control. One woman described a vicious cycle of increased pain and feeling down. She and others realised the importance of breaking this cycle. People had different ways of doing this, including spending time with friends and family, praying, talking to a professional or people from a support group, meditating, finding a distraction, challenging negative thoughts and thinking positively.
Explains that pain and how you feel are a vicious cycle and you need to find ways of breaking it.
And it's kind of, it's also like a vicious circle because you feel low because your pain's bad and then your pain gets worse because you feel bad and it just, you can get yourself into this kind of downward spiral and it's really, it can be really, really tough to get and lift yourself out of it again.
Tell me, how do you get out of it?
Just kind of, I kind of almost like talk sense into myself, I just like make sure that I do things that are good fun and see my friends and you know.
Feeling down could lead to depression, although people were keen to point out how different 'real' depression is from simply feeling low. Some found it difficult to admit they were depressed and were angry when their doctor suggested they see a psychologist or psychiatrist or take antidepressants because it felt like their pain was being labelled a psychological problem.
Found it hard to admit that she was depressed and was annoyed that her GP suggested...
But when I went to my GP, because he would like to see me about my medication when it changed etc., and he was quite abrupt with me, you know, it was almost as if, 'But you have got depression. Do you admit you've got depression?' And I was trying to say well you know 'I've got a reason for that so it's not as if it's, it's', I was trying to say 'Well okay if maybe I'm a bit down but you're not listening to me I've got pain. I'm in pain. How can I best cope with this pain?'
All he wanted to do was to give me Prozac and I was like 'Well I just don't want Prozac. I want, I want to get to the bottom of this. I want to get the appropriate medication that helps me cope. You take away my pain, you will take away my depression. You will help me, you know, don't cure the symptom, cure the cause.'
I was completely low, really low, and at that point I realised that I was off work and I thought no, this is not good. You know, I could do myself an injury. I really feel that bad. I was bouncing off the walls and just by pure chance I actually got an appointment with a new female doctor at our practice and I went to see her and we sat down and she talked to me.
And it was the first person that seemed to understand what I was juggling, my career, my home, my child, in isolation but with this chronic pain and symptoms that never got any better, they just got worse.
And she understood that all the other symptoms I was experiencing they were acute on chronic pain and then we agreed a strategy that would address the acute issues and then move on to the chronic issues. And she actually gave me my medication. We talked about Prozac and we, I agreed because I realised by that time, you know, I was very low, but she was so kind and she understood me and you know, the relief that someone understood, that all I was trying to do was to have a normal life.
Despite this, many went on to find counselling helpful, especially if the counsellor understood chronic pain. Some found antidepressants helped to get them through a particularly bad time, sometimes in combination with counselling. A few people told us that they had depression before the pain and said that either one could make the other worse.
For some, reaching a low point prompted them to seek help. A few people told us that they had thought about whether life was worth living and had contemplated suicide. They strongly advised people in that situation to contact a support group or the Samaritans.
Became completely reclusive and lay in a darkened room but then started to think about who he...
It would lead me into what I would say is like a mental stimulus overdrive, where the only recourse you have would be like when you felt your life was in threat and you'd either run from it, which I couldn't, but you would shut down all your inter-reactions so that you could pretend that they just didn't happen or they just didn't exist and found that with a combination of different anti-inflammatories and painkillers I was able to at least find a comfortable position on the floor, which I stayed in.
And I suppose I lost all my body muscles, not all my body muscles, but my body tone. I became quite, not totally incontinent, but nearly incontinent most of the time and I used to be in a darkened room most, partly asleep, holding myself in a very difficult position in order to minimise the pain in my back and I think I was deteriorating pretty fast really and I don't know what would have eventually happened to me, other than this little thought suddenly came in my mind one day about I could remember what I used to be like.
How I would go to meetings of the institute and talk to 2,000 people, how I would go and have television interviews, how I'd face 100 people who were very upset about the river being polluted or roads being blocked without feeling any fear whatsoever, and although I could remember what I was like, I couldn't deal with that at the time, but it somehow gave me a goal to aim for.
It just gave me something to fight against the pain in my back, and fight is really the wrong word, because the worst thing you ever want to do if you've got a bad back is fight against it, but I mean fight in the sense that I would try to find some way of living.
Has felt suicidal in the past and recommends picking up the phone and talking to a support group...
I know part of the fibromyalgia syndrome is depression apparently, you know, I'm saying from what I've read and that, but whatever, but if its the pain an all, and its causing depression, is having somebody there like to relieve that, the valve could save a lot of people's lives I would think, you know, because there is...
I mean I know how close I've come myself, I could have quite easily just come in and took the tablets and says, 'Right to hell with it', you know, and I'm still here, I'm still fighting on, and I would say for anybody who gets to them deep depths of despair, pick the phone up, talk to somebody, try to find out if there's a group, I mean...
Samaritans are there all the time, they're fantastic, speak to them, you know. I've used them, you know, and I think that's the only way you're going to get through because if you try to handle it, I mean, which I've tried a lot, tried to handle it on my own, you know, well I'll get better, you know, all these certificates, you know, I know how to deal with it, I can cure it, you know, but...
And I think everybody, you know, it doesn't matter how good you are and sometimes, you know, doctors, nurses, you know these things, but when it actually happens to yourself, it's when you need somebody. If you've been doing it for everybody else all the time and you tend to forget that, and I think that sometimes everybody needs somebody else just to be able to look at it in a different light, in a different way. I think they're the most important things I could say, tell anybody.
People told us about things that keep them going. Families and friends were many people's motivation in life. Others found pets gave them purpose and were a great comfort and company particularly if they were alone a lot. One woman said that her dog's joy was “infectious”. Another said that, when she had felt like ending it all, her dog had kept her going.
Explains that her dog comforts her, gets her out of the house and helped her to dismiss suicidal...
It's weird, there are some days when I'm feeling, I do feel sorry for myself and there are some days when I just, I'll just like kind of whinge to myself or cry and he comes over and he comforts me, he knows, and he'll try and do cute things to cheer me up and he does.
So having him has been an extreme source of pleasure and comfort and I highly recommend it if you can, if a person can manage it, to have some sort of, you know, a cat or a dog, because he doesn't ask much, doesn't take much to feed or look after and the amount of pleasure and source of comfort I've had from that companionship is priceless.
You know, he is my best friend, well he's completely wonderful and he saved my life in respect that there was one time when I felt like ending it all, I'd had enough. I just, I was just so low that I thought 'I can't stand it' and I, you know, did think of ending it and he caught my eye and he just gave me, you know, he was really inquisitive, he was giving me one of these, typical dog looks, like that, and I thought 'Oh, I can't do this, what am I thinking?' and I got over it.
It was, you know, pretty intense, that was a pretty intense moment but yes, so I think he saved my life, I expect. And he does, he keeps me fit, you know. If I had, the idea is, what I'm trying to do now is walk a little bit more each day.
Some days, like okay yesterday I didn't do any walking, okay I hold my hand up, but some days I feel like walking more than others and I will force myself to do it. Now, if I didn't have a dog, if I didn't have that kind of... what's the word I'm, the kind of impetus, the kind of not encouragement, what is it? Well anyway, the idea of walking the dog, I probably wouldn't do it. So it's good for both of us, you know.
Faith and support from other members of their religious community were important to some people. Some tried not to let the pain stop them from having good times like a night out or a special outing.
Accepts that sometimes he'll have pain for a few days after doing something he really wants to...
And people say 'Well that's terrible, you can't have things like that' and we say 'Well we do, because what a sod it day is all about is that you are going to do something that you know you're going to pay for, for the next few days, it's going to hurt, sometimes it hurts quite a lot, but you really enjoy yourself and you think well sod-it' and then that's all right then but then, in the future, when you're down you can look back at what you've done and it boosts you up again.
And that's really important. I went micro-lighting. And what I didn't realise was that the engine in the aircraft is behind you. Well, if you've got a broken back, to have an engine vibrating up your spine is not a good idea and I was in bed for about ten days afterwards and it really knocked me out. And yet, a few years on now, I look at the photographs of that day when I'm, you know, I'm having a bad day and I think 'I did that' and it's a lovely feeling and I'll always encourage people to sort of challenge their pain in that way, because there are lots of things you can do.
Nevertheless, even appreciating simple things in life could lift people's mood, as could laughter, which was thought to help release pain-relieving and mood-enhancing chemicals.
Last reviewed August 2018.