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Transcript — Programme 103: Pain and Relationships

How pain’s unpre­dictabil­i­ty can affect inter­per­son­al rela­tion­ships, and recog­nis­ing help when it appears

To lis­ten to this pro­gramme, please click here.

This edi­tion of Air­ing Pain is fund­ed by the JTH Char­i­ta­ble Trust and the Per­su­la Foundation.

With between one third and one half of peo­ple liv­ing with chron­ic pain in the UK alone, the num­ber of peo­ple expe­ri­enc­ing the effects of pain explodes when con­sid­er­ing fam­i­ly and friend­ships.*  For some of these peo­ple, life can become a cycle of hos­pi­tal vis­its, blood tests, and scans. So, what can be done to ease these relationships?

In this edi­tion of Air­ing Pain, Paul Evans and emi­nent psy­chother­a­pist Dr Bar­ry Mason speak about their per­son­al expe­ri­ences with fibromyal­gia and anky­los­ing spondylitis. 

With many chron­ic pain con­di­tions being “invis­i­ble”, explain­ing your pain may seem impos­si­ble, and as the family’s “unin­vit­ed guest”, it can cause peo­ple to close up to those look­ing to help. Dr Mason explains that not speak­ing about this uncom­fort­able top­ic can lead to fur­ther issues, and how open­ing up can lead to bet­ter fam­i­ly teamwork. 

Issues cov­ered in this pro­gramme include: Anky­los­ing spondyli­tis, can­cer, chil­dren and young peo­ple, chron­ic pri­ma­ry pain, chron­ic pain as a con­di­tion in its own right, com­mu­ni­cat­ing pain, cou­ple’s ther­a­py, explain­ing pain to chil­dren, fam­i­ly ther­a­py, fibromyal­gia, friends and relationships.

http://bmjopen.bmj.comcontent/6/6/e010364

Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain, and for health care pro­fes­sion­als. I’m Paul Evans, and this edition’s been fund­ed by the JTH Char­i­ta­ble Trust  and the Per­su­la Foundation.

Dr Bar­ry Mason: When peo­ple are in pain I make a dis­tinc­tion between a pri­ma­ry rela­tion­ship with pain, and a sec­ondary rela­tion­ship with pain. A pri­ma­ry rela­tion­ship with pain is where pain tends to dom­i­nate your life. But it’s not just that it may dom­i­nate the life of the per­son with the con­di­tion, it can also dom­i­nate the lives of those you are clos­est to. Pain is there­fore in the fore­ground of their lives, and get­ting on with life tends to then be in the back­ground. A sec­ondary rela­tion­ship with pain would be where get­ting on with life, for those with the con­di­tion and oth­ers close to you get­ting on with life is in the fore­ground of your life, and the pain, although there, you man­age to keep in the background.

Evans: In a lec­ture to the Insti­tute of Fam­i­ly Ther­a­py in 2016, the emi­nent fam­i­ly psy­chother­a­pist Dr. Bar­ry Mason talked about his research into the effect of chron­ic pain on sig­nif­i­cant rela­tion­ships and con­verse­ly, the effect of those rela­tion­ships on chron­ic pain. His recent research is on the man­age­ment of fibromyal­gia but in 1972 he was diag­nosed with anky­los­ing spondyli­tis, that’s an inflam­ma­to­ry con­di­tion that affects the joints of the spine. Now, it’s impor­tant to say that in the inter­est of con­fi­den­tial­i­ty cer­tain clin­i­cal details have been changed in our con­ver­sa­tion that fol­lows, but it was his diag­no­sis of AS that inspired his ini­tial research.

Mason: What I was told at that time, that it was a chron­ic condition–it would devel­op over time—that the impact it had on me was beyond just me. It was about, I’ll lose my job, and of course it was affect­ing not only me, but it was hav­ing an impact on my per­son­al rela­tion­ships, how I was, and some­times I dealt with it by going into myself, which is not unusu­al with peo­ple with chron­ic pain con­di­tions. That was the way you coped with dif­fi­cult times. And so I was very aware, not just of what was going on with me, but also about how oth­er peo­ple were relat­ing to me, and that in itself affect­ed how I man­aged my condition.

Evans: Because they talk about pain as the unin­vit­ed, unwel­come guest into the fam­i­ly, don’t they? It impacts on absolute­ly every­body, all relationships.

Mason: Yes, close rela­tion­ships you have, work rela­tion­ships. Cop­ing, keep­ing going. And some­times you have bad episodes and the pain is worse than oth­er times. One of the words I think fits very well for chron­ic pain con­di­tions is that it’s unpre­dictable, that it’s there some­times, then all of a sud­den it’s not.

I always remem­ber for quite a while hav­ing con­tin­u­ous pain, and then I had a remis­sion, and I remem­ber think­ing I always knew there was a state of being pain free, but I’ve only just  re-expe­ri­enced the dis­tinc­tion between being pain free and hav­ing pain. And of course then you think, per­haps it’s over, per­haps that’s it. And of course it wasn’t, it comes back.

And I start­ed also to, as a way of peo­ple not ask­ing me too much about, how’s your back Bar­ry?, because after a while it can actu­al­ly get a bit bor­ing, but they were con­cerned, and then to help peo­ple not get into that I actu­al­ly found myself wear­ing suits and look­ing smarter in the hope that peo­ple would, this is pathet­ic in a way—I laugh at it now, that peo­ple would think, oh, he looks good. And it was all about the phys­i­cal appear­ance, because you know, you show it in your face at times, as you know. And you try to not do that, but it’s very hard at times.

Evans: In my own expe­ri­ence, I have fibromyal­gia, one of the worst things that peo­ple can say to you is, how are you today?

Mason: The dan­ger is, on the one hand there is a wish for them to be con­cerned, gen­uine­ly con­cerned, but it rather fix­es you as a per­son with a con­di­tion. It feels at times as though you are the con­di­tion, rather than a per­son with a con­di­tion. I remem­ber say­ing, it’s like I’m not Bar­ry, I’m Bar­ry the back.

Also, I’ll stress that peo­ple are gen­uine­ly very con­cerned about you, so how do you man­age that con­cern with­out get­ting fed up with the con­cern, if you see what I mean, does that make sense?

Evans: It does, but many peo­ple feel that if they tell the truth all the time about their pain, peo­ple will stop ask­ing. We don’t want to come across as miseries.

Mason: Yes, well that’s the dif­fi­cul­ty, that they would say how’s your back? And I would say it’s fine, when it wasn’t. But then they might pick up that it prob­a­bly wasn’t fine, and be left with, should I take this fur­ther or not. It’s almost like it was a pat­tern, they were try­ing to be con­cerned and you were try­ing to deflect.

Evans: And the oth­er thing about that, it might be cyn­i­cal of me to say it, is that when some­body says how are you, they don’t real­ly want an answer, it’s a politeness.

Mason: It’s a polite­ness yes, and like you’d say to anybody.

Evans: So how did your rela­tion­ship change when the anky­los­ing spondyli­tis started?

Mason: This was 1972. I came out when I was told by the rheuma­tol­o­gist, and I sat out­side the con­sult­ing room, and I got real­ly down, and I said this is ter­ri­ble. And I went away to the library and got a book, and it said, well you can just bend over and some­times it can kill you. Rather dra­mat­i­cal­ly I thought, oh well I’ll prob­a­bly last till I’m 35. It was all rather dra­mat­ic. And the oth­er thing was, that well I’ll just have to get on with it, as that’s how I dealt with things anyway.

And my rela­tion­ships in some ways didn’t change that much, because being a per­son who got on with things was how peo­ple knew me to be. But at times of course the pain was quite bad.

Evans: How did your wife’s rela­tion­ship with you change? You have the pain, but she has to deal with a dif­fer­ent you in many ways.

Mason: Yes, the fact that I’m an indi­vid­ual with a pain con­di­tion, but that pain con­di­tion has par­tic­u­lar effects on me. The pain draws you in, if you with­draw, what do peo­ple close to you do? And that’s one of the things also that peo­ple often don’t get into. Cer­tain­ly in my research around peo­ple with fibromyal­gia one of the issues that came up was  peo­ple not being sure, let’s say there’s a per­son with fibromyal­gia, the part­ner, say, wasn’t very sure about, well, should I ask you whether you want help, or should I wait for you to ask me. Because the per­son with the con­di­tion usu­al­ly wants to main­tain their inde­pen­dence. For some peo­ple with the con­di­tion, main­tain­ing inde­pen­dence means I will ask you if I need help. Oth­er peo­ple would see it in a dif­fer­ent way, and say I would pre­fer you to ask if you think I need help. What I found was that, that nev­er gets talked about. So when I’ve seen peo­ple I’ve checked out with them: when you need help do you want your part­ner or fam­i­ly mem­ber to vol­un­teer, or would you pre­fer them to wait and you ask them? That can be very dif­fi­cult; if you get it wrong it can cre­ate tension.

Evans: It’s quite inter­est­ing because me, and pos­si­ble oth­er peo­ple with fibromyal­gia and oth­er long term con­di­tions, we want to be in con­trol of it our­selves, but actu­al­ly we do want some­body to be pas­sive, pas­sive­ly look after us, although we’re in control.

Mason: Yes. One of the ques­tions I do ask peo­ple who have a chron­ic pain con­di­tion is, how easy or dif­fi­cult is it for you to not do things as well as you used to do them, because some­times peo­ple force them­selves to be like they were before, of course that can be worse. And then I might ask some­body in the fam­i­ly, how dif­fi­cult is it for you to say to your part­ner, or your father, or who­ev­er: look you’re over­do­ing it. And are those things talked about, or are they thought, well they’re almost not con­scious of those issues that might be use­ful for discussion.

Evans: What quite often hap­pens with me and my wife is that I will be going down­hill, and get­ting more and more dif­fi­cult to live with. And she will say, Paul you’re in trou­ble now, stop. And it’s like there’s a traf­fic light say­ing you can stop and start again, we know where we are, we’ve flagged up where you are and we can start again.

Mason: What’s inter­est­ing to me is then, what’s the sto­ry of how she felt able to do that with you, and you being able to find that use­ful. So there must have been some­thing that was around, either because you know each oth­er, as to, at that point she said, well I’m going to come in here and you find­ing that useful.

Evans: Often it’s an argu­ment, and you had to draw the line and say, this is why we’re argu­ing, it’s because you don’t feel very well.

Mason: And then it depends, to some extent, on the his­to­ry of your rela­tion­ship just doesn’t exist in iso­la­tion. You are pre­sum­ably acknowl­edg­ing that your wife has some exper­tise in help­ing you.

Evans: Absolute­ly, she can see me bet­ter than I can see myself.

Mason: Because you know you can’t see the for­est for the trees, and when you have a bad episode it’s like you’re on a zoom lens and you can’t take it out onto a wide angle lens and see the broad­er picture.

But it is about being, are we open to being chal­lenged about how we’re cop­ing with our con­di­tion. You have to have that idea of, I’ve got my own views about how I should han­dle this, but I also need to be open to that idea that some­body else could come up with a use­ful idea about how I should han­dle this at this point.

Evans: You’re not an island, you are a unit, that works as a unit.

Mason: Although I think it’s also impor­tant to add that you get peo­ple who have a chron­ic pain con­di­tion who are on their own, they live on their own, but they have friends. So it’s still ‘fam­i­ly’, it’s rela­tion­ships: how do our rela­tion­ships help us, or con­strain us, in how we man­age our condition.

I think that what I try to do is help peo­ple talk about what they haven’t been talk­ing about. So I can remem­ber a sit­u­a­tion where I worked with a cou­ple, and they were in their six­ties. The woman had a long stand­ing chron­ic pain con­di­tion, about 25 years, had been to a pain man­age­ment clin­ic. The hus­band was very sup­port­ive in con­crete ways, but she said that he wasn’t very good in terms of talk­ing about how she was feel­ing. And he came with her to the appoint­ment, and he was a bit reluc­tant to get into it, he was there for her.

Any­way as their ses­sion went along I thought there was an ele­phant in the room, and the ele­phant, because she’d also had a triple heart bypass, the ele­phant was his fear of her dying. And I thought for about ten min­utes, should I go into this or not, it’s the first ses­sion. Any­way I decid­ed to take the risk of doing it, and I rather over­did it, it’s rather embar­rass­ing to say. But I said to him, do you have a wor­ry that your wife is going to have anoth­er heart attack, stop breath­ing, drop dead. It was rather over the top, and he didn’t bat an eye­lid, he said no, I think about it all the time. It was the first time he’d said it, and it went on, and I said at one point, how come you haven’t said this, and he said, well, if you say it to some­body else you give it to some­body else. And I thought that’s very interesting.

And when we went into it, when he was grow­ing up he had a three year old broth­er that died when he was four. His father died a few years lat­er, and he had a sis­ter who died a few years after that. He’d grown up with this idea that how you cope with dif­fi­cult times in life, is you just get on with it. She’d grown up in a fam­i­ly where you talk about things. So what they’d begun to see was that there was a log­ic as to how each of them behaved, based on their expe­ri­ences from a fair­ly ear­ly age. She saw the log­ic of why he didn’t want to talk about things, and he saw the log­ic of why she did want to talk about things. This came out after about 40 years togeth­er, nev­er said it before, nev­er realised it.

When the work fin­ished, they got on much bet­ter after this, and I saw them for about six, sev­en ses­sions, and at the end of the work I said, what’s come out of this for you? And he said– it was like a lan­guage of anoth­er gen­er­a­tion– he said, I’ve realised one thing, the women, they like you to talk. It was a sort of beau­ti­ful moment, and I saw out the cor­ner of my eyes his wife beaming.

But it was also based on a ques­tion I ask of peo­ple, which is relat­ed to the work I do as a ther­a­pist, try and get a pic­ture of what was hap­pen­ing when they were grow­ing up, about the mes­sages they picked up about how to cope with dif­fi­cult times. Because all of us grow up and I think we pick up mes­sages; in my fam­i­ly I picked up that you just get on with things. So I ask this ques­tion: when we’re grow­ing up in our fam­i­lies, com­mu­ni­ties, we pick up mes­sages about how to cope with dif­fi­cult times in life. What were the mes­sages you picked up when you were grow­ing up? And he said well, you’ve just got to get on with things, and she said well, talk about things. And then peo­ple can see there is a log­ic to their dif­fer­ences, not an illog­i­cal­i­ty. And it’s a ques­tion you don’t get nor­mal­ly asked, you don’t go to the super­mar­ket, and you see a friend, and you go over to the friend by the veg­eta­bles, and you say how have things been, they don’t tend to say, well you know I’ve been think­ing about my pat­terns in cop­ing with adver­si­ty. And you’re prob­a­bly unlike­ly to say, you know I’ve been think­ing the same thing. My job is to come at things from a dif­fer­ent angle, and how do I help take peo­ple off autopi­lot, so they become curi­ous about their own process that they’re going through.

Evans: I pre­sume in a sit­u­a­tion like that, he who keeps every­thing to him­self, and she who wants to talk about every­thing, do you come to a point in the mid­dle or do they skew to one side?

Mason: I take the view that there are dif­fer­ent ways of see­ing things, that’s what we do. So peo­ple come and they may have a fixed view, that this is how I see it, and it may be that they think there is no oth­er way of see­ing it except this. So what I try to do is not to force a view on them, but to try and work with them in such a way so they, in a way, start to think there are oth­er ways of see­ing this. Because the act of speak­ing is the act of hear­ing your­self speak, you speak and you have a rela­tion­ship with what you hear your­self say.

Like I said to that man when he clear­ly said, I’ve nev­er said this before, I said to him, what’s it like hear­ing your­self say that? And he said it’s a relief, I’m glad I said it in front of my wife. When I asked her, what’s it like for you hear­ing this? She indi­cat­ed it was real­ly good. I remem­ber her say­ing, I didn’t know he cared. So she had the idea that he cared, it wasn’t that he didn’t care, it’s just that his view of how he should cope with dif­fi­cult times clashed with hers. But then it came out, and then they could see.

Evans: In my own back­ground, my moth­er refused to let pain get in the way of every­thing. Even to the point of her hav­ing lung can­cer, and being in excru­ci­at­ing pain, she was fine. Now I think that had a tremen­dous effect on me and the chil­dren. First it was very dam­ag­ing that she wouldn’t tell us she was ill in the first place. But I nev­er use the word ‘pain’ with my doc­tors. Are you in pain? No, no, I ache. Well, aching is pain. But it does have a real­ly, sort of, what you’re brought up to think about pain…

Mason: Yes, you put a mean­ing to it. And that’s what peo­ple do. It’s like when you say, what lev­el of pain are you in, on a scale of naught to ten. And peo­ple will say, oh nine, well one person’s nine is anoth­er person’s six. It’s very subjective.

But what you’ve just said then, is it’s log­i­cal, that’s the point. That what you said to the doc­tors was log­i­cal based on the sto­ry that you devel­oped about your­self in rela­tion to your moth­er. It may seem illog­i­cal, but I’m think­ing about is, in what way is there a log­i­cal sto­ry to this view that this per­son has.

Evans: So why do peo­ple with chron­ic pain come to you in the first place? Sure­ly that must be some sort of indi­ca­tion that they’re accept­ing that there may be issues in the relationship.

Mason: What that ques­tion reminds me of is that for hun­dreds of years, in the his­to­ry of man­ag­ing or deal­ing with pain, it was just phys­i­o­log­i­cal. It was only in the 1960s that peo­ple start­ed to see, based on a par­tic­u­lar paper at that time, in 1965, that psy­cho­log­i­cal as well as phys­i­o­log­i­cal, and how we dealt with pain was also to do with our rela­tion­ship with it on an emo­tion­al lev­el. From that you start­ed to get psy­chol­o­gists involved, psy­chother­a­pists and oth­er peo­ple. So one of the ques­tions I usu­al­ly ask and explore is, what’s their view about com­ing to see some­one like me.

I remem­ber one per­son say­ing, I didn’t want to come because they’re obvi­ous­ly send­ing me to you because they think I’m mad. And I said no, I don’t take that posi­tion. It’s just that when peo­ple are in pain it has an effect not only on how they are phys­i­cal­ly, but how it effects on rela­tion­ships. And some­times talk­ing about things may help.

There’s a fam­i­ly I dealt with where the moth­er had severe chron­ic pain, and her way of cop­ing with it was to grit her teeth and keep going, keep going. But what came out was–because I asked about what’s the effect on your chil­dren?– there’s a 15 year old daugh­ter and they don’t real­ly talk about it, do they not talk about it because they’re not wor­ried about any­thing, or is that their way of deal­ing with it. And what hap­pened was that even­tu­al­ly the daugh­ter came out and said she was wor­ried about the moth­er com­mit­ting sui­cide. The moth­er said to her, how long have you been think­ing that? And it turned out that it was five years she’d been think­ing that, but kept it to her­self. And the moth­er said, oh my god, you’ve been think­ing that for five years and you’ve nev­er said any­thing? And I said to the daugh­ter, what’s it like for you, say­ing that here? And she said, it’s bril­liant, brilliant.

So that’s the effect that somebody’s indi­vid­ual con­di­tion can have on the way pain, or what­ev­er it is, is man­aged. So it all goes back to the rela­tion­ships. Like with fibromyal­gia, peo­ple not believ­ing me, that I’ve got this con­di­tion. One, it helps to have a diag­no­sis, and two, peo­ple find it dif­fi­cult with a con­di­tion like that to real­ly explain to oth­ers what it is. I’ve had peo­ple say to me, it dri­ves me mad, I don’t know how to explain this. And I think that one of the things that is impor­tant is that pro­fes­sion­als in the field, what­ev­er they are, medics, psy­chol­o­gists, psy­chi­a­trists, psy­chother­a­pists, what­ev­er, should help peo­ple with a con­di­tion like that to be able to talk about it and explain it to oth­ers. Because I think that by doing that, peo­ple are less like­ly to think that they are just putting it on. It frus­trates peo­ple when they can’t say, this is what my con­di­tion is. So peo­ple just need some help. So here I’d say, OK a per­son at work asks you what it is, so how are you going to explain it, it’s practising.

Evans: I want to go back to the moth­er and the 15 year old daugh­ter, and the relief of the daugh­ter being able to say open­ly, ‘I’m afraid of you dying’. Did that stay just in the room, or did the open­ness car­ry on beyond the consultancy?

Mason: Yes, it was almost like it became less pow­er­ful, it wasn’t so big. It was like if you wrote it on a piece of paper, ‘Will my mum com­mit sui­cide’, it was like a big S on a piece of paper, and what hap­pened was it became a small s.

I sup­pose one of the things with the fur­ther work I did with them is just that tak­ing the chance, talk­ing about dif­fi­cult things could be help­ful. On the one hand, this moth­er, her way of deal­ing with things was to just get on with it. Now that can be very help­ful, but it also at times can be not very help­ful. And it reached a point where it tipped over into not being very help­ful. So this com­ing out not only changed the rela­tion­ship in terms of the moth­er and the daugh­ter, it changed the rela­tion­ship about talk­ing about things in gen­er­al, that when things were dif­fi­cult it was OK to talk about it.

Actu­al­ly the daugh­ter, after the work fin­ished, dropped me a post­card every so often, and said still ok, still ok. When that kind of thing hap­pens you also get bet­ter team­work, and team­work is very impor­tant. So if there is the team­work in the fam­i­ly, or the cou­ple, and there’s also the team­work with the pro­fes­sion­als. And that the per­son with the con­di­tion is part of that team, not sep­a­rate from it. And in fact I still do it, and I encour­age peo­ple to do it, when you go into a med­ical appoint­ment write down on a piece of paper what you want to say and give it to them to read in front of you. Because you go there some­times and you feel pres­sured because of time, you’re anx­ious and then you for­get what you want to say. And I still do it myself every appoint­ment with my rheuma­tol­o­gist, I write some­thing. It’s a mes­sage that I’m part of  the team.

The oth­er thing that came out of my research is that med­ica­tion is an indi­vid­ual issue, but it’s also a rela­tion­ship mat­ter. We often have var­i­ous med­ica­tions we may be tak­ing, and of course all these med­ica­tions have side effects. Some­times it’ll be my stom­ach, and some­times my fuzzy head. That then affects rela­tion­ships, because if you are a bit fuzzy, the peo­ple who are close to you, do they know whether you’re not with it because you’re just not being very com­mu­nica­tive, or do they know whether it’s like­ly to be the med­ica­tion? So it’s real­ly impor­tant from a rela­tion­al point of view that peo­ple who you live with are aware of the med­ica­tion and what they may have to expect. It’s not just the indi­vid­ual tak­ing the pill.

Evans: That’s fam­i­ly psy­chother­a­pist Dr. Bar­ry Mason. And of course, as we said ear­li­er, in the inter­est of con­fi­den­tial­i­ty cer­tain clin­i­cal details we talked about have been changed. And don’t for­get that whilst we in Pain Con­cern believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound, based on the best judg­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well­be­ing. He or she is the only per­son who knows you,  your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf.

Dr Bar­ry Mason.

Mason: There’s a love­ly say­ing by the writer Han­nah Arendt in a book she wrote in 1968. She called ill­ness and dif­fi­cult things, she called it an unbear­able sequence of sheer hap­pen­ings, where the weight of what you have to deal with almost pre­vents you from doing things. And I though about that in rela­tion to what peo­ple have to deal with when they have an ill­ness. Bood tests, hos­pi­tals, scans, GP vis­its, the weari­ness of that, and often that gets for­got­ten. For some peo­ple it’s like their social life is vis­it­ing the hos­pi­tal. It’s just tak­ing that into account, that peo­ple are tired some­times. Not just because of the effects of the med­ica­tion, but just the weari­ness of deal­ing with it all.

Evans: Ground down by the process.

Mason: Yeah, ground down by the process.

Evans: It’s fas­ci­nat­ing that you talk about, a rela­tion­ship not just with peo­ple. Every­thing in life is a relationship.

Mason: Exact­ly, spot on. If I see a chair, I don’t just see a chair, I have a rela­tion­ship with that chair, because I think, is that a good chair to sit on or not. So I’m hav­ing a rela­tion­ship with it. Yeah, that’s a per­fect way of putting it, every­thing is a relationship.


Con­trib­u­tors:

  • Dr Bar­ry Mason – Fam­i­ly Psy­chother­a­pist, Mem­ber of UK Coun­cil for Psychotherapy.

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