Information & Resources

Find information and resources to help manage your pain.

Get Help & Support

Find the tools you need to
help you manage your pain.

Get Involved

Help make a real difference to people
in the UK living with chronic pain.

About Us

Find out about Pain Concern and how
we can help you.

Transcript – Emotional Impact of Chronic Pain

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.


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.


Con­trib­u­tors:

  • Mar­i­on Beatson
  • Dianne Con­nor
  • Car­men Murray
  • Dr Mar­tin Dun­bar, Con­sul­tant Clin­i­cal Psychologist
  • Dr Gra­ham Kramer, GP

Comments

My com­ment is regard­ing Dr. Kramer’s com­ments regard­ing doc­tors say­ing “it’s all in your head”. For starters some doc­tors do say that, or some­thing like putting hypochon­dri­ac in your med­ical notes. I think one of the things that makes inter­ac­tions between doc­tors and patients dys­func­tion­al is the doc­tor decid­ing they know bet­ter because of their vast edu­ca­tion. For starters, while you may know many things, you don’t know every­thing, and also you’re not inside my body. I and oth­er patients have to rely on the lim­it­ed words in the Eng­lish lan­guage to explain things that often are much more com­pli­cat­ed, then there’s room for a dif­fer­ent inter­pre­ta­tion of the words by the doctor.

While I am for­tu­nate to have had decent GPs, my cousin was labelled a hypochon­dri­ac in her med­ical notes by the neu­rol­o­gist she was sent to and it was­n’t until her grand­moth­er paid out of her own pock­et for an MRI that they found a cause for her symp­toms and she went to a neurosurgeon.

I think some­times you think ‘why would the doc­tor say it’s all in your head’ because you’re the kind of doc­tor that would actu­al­ly take the time to diag­nose the patient rather than assume things, and so you assume that the major­i­ty of doc­tors are like you.

The best way to under­stand is to read forums by suf­fer­ers of chron­ic ill­ness­es like ME/CFS. This is a group most like­ly to be treat­ed in that fash­ion by doctors.

Thanks, Anthea, for that thought­ful com­ment. There can be a huge com­mu­ni­ca­tion gap between health­care pro­fes­sion­als and peo­ple in pain and I think that’s one of the things Dr Kramer is try­ing to get at there — the per­son in pain hears ‘all in your head’, but more often than not the doc­tor might be try­ing to explain some­thing to do with the rela­tion­ship between pain and thoughts or emo­tions or what’s going on in the brain and unfor­tu­nate­ly doing a pret­ty ter­ri­ble job of that.

Comments are closed.

https://painconcern.org.uk/cordless-car-vacuum-cleaner-eraclean-best-handheld-vacuum/