Pain can involve a lot of loss – of friendships, work or plans for the future. The emotional impact of these losses as well as of the pain itself often hits people hard.
People with long term pain can find themselves struggling with low mood, depression, anxiety and isolation – this can in turn make the pain worse. It’s important to tackle these emotional impacts of pain as well as treating the pain. This doesn’t mean that the pain is ‘all in the mind’.
Top tip: learn more about pain. Many people find that, like Carmen and Diane, understanding more about their pain makes them less anxious and can help them to start becoming more active.
Find out more: improve your understanding of pain by listening to Pain Concern’s interview with Lorimer Mosley, one of the authors of Explain Pain.
For a PDF of this transcript, please click here.
Marion Beatson: I happened to fall at work and landed on my coccyx. And I have nerve damage between the discs, so the left side is quite numb and the right side is starting to wither the same way. And with that comes a lot of pain.
Dianne Connor: The pain was like nothing else I had ever experienced. I used to pace the floor in the middle of the night… It was like somebody was taking a knife and stabbing my arm.
Carmen Murray: I have chronic pain because I had a tumour which was found on my spine, twisted around my spinal cord, which resulted in numerous operations. My spine eventually collapsed, then it had to be straightened again, which – all the operations and all the stress on my spine – has left me with pain.
Beatson: I had a one-year-old daughter at the time and I couldn’t lift her. I couldn’t get up with her through the night. My whole life totally changed, so my whole family’s life totally changed after I fell. And, due to having the pain, I started to get severely depressed and I had to have help with my daughter. My mum had to come over nearly every day to help me look after Chloe, which was hard to accept. The fact that I was in that pain, that I’d done it all myself, and wasn’t enjoying having a one-year-old child, and then at the fact that I couldn’t do the things for her that a mum should be able to do was hard. Very, very hard at the time.
Connor: I lost my job very early on in this, because I got ill-health retirement. So there’s a huge amount of loss involved. I lost my hobby, because I couldn’t sing and dance anymore, so everything was about loss. I’d never been an angry person, and I suddenly became this really angry person and I was really down, really depressed…
Murray: When my daughter was that age I was a lot more unwell than I am now, so… [sobs]. Sorry. I’m just gonna calm down a minute…
Martin Dunbar: I think it’s fair to say that an awful lot of people with chronic pain develop emotional problems over time, probably 50 per cent of them, I would think. They become depressed. They become anxious. They become panicky when they go out. They become socially isolated. They have difficulties within the home, within family functioning. An inability to perform their normal social roles, if you like.
Murray: Most of the time was sort of spent in the bedroom or on the couch and my daughter was brought into the bedroom with me to spend time with me. Or we would go out, with me in the wheelchair and she would run around and play. [The pain] stopped me from being the parent that I needed to be at that time. It made me quite jealous when I’d see other parents out pushing their buggies and prams, and I was unable to do that because the pain was completely debilitating at that time.
Connor: My son still wanted his mum, you know? He didn’t want his mum to be this person who was falling on the floor and couldn’t get up of the floor… So I became a person that I didn’t know anymore. I was lost, I was completely lost! And I became isolated really very quickly early on, because they were putting me on medication that made me drowsy, sluggish, I wasn’t able to drive, I was stuck in the house here.
Dunbar: When people have pain they naturally cut back on a lot of activities, so there’s the losses involved with cutting back. So they maybe don’t see friends as much, they’re maybe not doing as many things as they would that were important to them previously. But I think also just not having that degree of social contact, not having that degree of involvement, causes people to develop emotional problems. People lose their confidence in social situations.
Connor: People didn’t know how to take me, so people didn’t visit or, if they did visit, they didn’t understand who this person was that I had become, because I was cranky, I was bad-tempered or I just sat and stared into space because of the medication. So I became really socially isolated very, very quickly, very early on.
Dunbar: If somebody has an emotional problem to begin with, when they have an accident – for example, they hurt their back or whatever starts their pain problem – I think it makes it more likely that the course of that problem is going to be protracted. Even if somebody didn’t have an emotional problem to start with, I think emotions start to play a part in the exacerbation and maintenance of a pain problem. There’s a direct link between feeling anxious and feeling depressed and pain, so I have lots of my patients tell me that when they’re feeling stressed, their pain is a lot worse.
Graham Kramer: We often find people have pain for which there is no disease, if you like, that we can cut out or treat or make go away. And for some people, that can be very difficult – for the healthcare professional to admit that and it’s often very difficult for the person to hear that. Because all the messages they’re getting is that there’s some horrendous disease going on – pain is a danger signal – and then the less we find something perhaps people perceive that their symptoms aren’t being validated. And it may be they think the healthcare professional thinks they might be fabricating it, malingering it, or all these other sort of negative associations.
Beatson: He thought I was actually imagining it. He thought I was actually pretending. That’s the way I looked at it. And I came out one day and I just cried because of the ways he didn’t understand.
Kramer: People turn around and say ‘The doctor’s turned around to me and said “It’s all in your head!”’. And I don’t think that doctors do turn around and say ‘It’s all in your head’ but I think that’s often what people hear. And so it becomes really complex.
Beatson: I wanted to hit him, to tell you the truth, because he just did not listen to me. He just told me to keep taking ibuprofen and co-codamol. And I ended up near enough overdosing because I had to take extra to keep the pain – not at bay, but at least a little bit better, to help me cope with life and day-to-day things I wanted to do. I was taking like 12 ibuprofen and 12 co-codamol at the same time – well, in a day, rather. And he never flagged up the fact that I was getting repeat prescription after repeat prescription.
The chemist commented on it one day and she told me to go back and see him again, but when I went back he actually told me to go back to work. He signed me off as sick and went ‘go back to work’, [saying that] I’ll be a lot better when I go back to work and start moving again.
Kramer: People begin to think they’re not being heard or understood. I think it, ultimately, can easily slide into a very dysfunctional relationship and a dysfunctional experience and frustration and anger with the healthcare system that they can’t be fixed.
Beatson: He never listened to a word I said. He did not understand what I was going through.
Dunbar: It’s quite plausible to suggest that some people see depression and anxiety as a natural consequence of having pain and all the limitations that come with that. That can then prove to be a barrier to getting those emotional problems helped and treated, because health professionals might say that this is not going to improve until the underlying pain problem is resolved and I think that isn’t the case. We certainly find that people coming through these programs, where we’re not helping their pain necessarily, these approaches do help their emotional problems significantly.
Connor: I started to be attached to the pain clinics. So, it was very fragmented – I was getting an acute service, I was being treated as an acute patient, but I’d started to still be under the pain clinic, but because of the waiting lists… So during that time they told me to read the book Explain Pain and I think every patient should read that book time and time again. I actually think every patient should be given that book.
The visual description of pain, all these contorted figures describing how pain is – that’s how my pain is! And I thought ‘here’s somebody that’s understanding. It’s explaining to me why my pain is; why I’ve so many strange, odd pains; why it’s gone to different parts of my body. But that’s okay, I can understand that.’
Because if you don’t understand pain it creates fear. And when you have fear, it creates all these all these other huge negative emotions, all these chemicals releasing in the body which actually make your pain worse.
Murray: A big thing for me personally was to learn about my pain. I’ve read some books now about what pain is and that seems to help massively. You have so many doctors that are saying different things to you and sometimes you’re not really understanding what they mean when they’re saying ‘Oh, your back’s firing off signals’ or whatever, you think ‘What does that mean?!’ Whereas now I understand what that means, I understand how pain has occurred, so when I get pain it’s not so scary anymore. I feel like I can understand and I know how to move past it and deal with it now.
- Marion Beatson
- Dianne Connor
- Carmen Murray
- Dr Martin Dunbar, Consultant Clinical Psychologist
- Dr Graham Kramer, GP