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Transcript – Programme 60: Pain in the Family: Young adults 2 of 2

How pain affects the rela­tion­ship between adults and young peo­ple and tips from a fam­i­ly therapist 

To lis­ten to this pro­gramme, please click here.

In the sec­ond of our two pro­grammes focus­ing on young car­ers for peo­ple in pain, we hear about the effect of pain on rela­tion­ships between par­ents and children.

Fam­i­ly ther­a­pist Liz For­bat explains how pain can dis­rupt tran­si­tions from child­hood to inde­pen­dent adult­hood, espe­cial­ly dur­ing those dif­fi­cult teenage years. She dis­cuss­es with pre­sen­ter Paul Evan’s his ‘mar­tyr­dom’ approach to man­ag­ing chron­ic pain – he recalls keep­ing his chil­dren at a dis­tance from it – and the dan­gers of build­ing bar­ri­ers between fam­i­ly mem­bers in a bid to pro­tect them from the effects of the pain.

We hear the young person’s per­spec­tive from Kim Radtke, who grew up with a father often made irri­ta­ble and emo­tion­al­ly unavail­able by his anky­los­ing spondyli­tis. The sit­u­a­tion was exac­er­bat­ed, Kim says, because she and her broth­er did not ful­ly under­stand the con­di­tion and were there­fore unable to empathise and com­mu­ni­cate with their father about it. Only as an adult has she been able to make the step – so impor­tant, accord­ing to Liz For­bat – of sep­a­rat­ing the pain from the person.

Issues cov­ered in this pro­gramme include: Fam­i­ly ther­a­py, chil­dren and young peo­ple, rela­tion­ships, par­ents, young car­ers, anky­los­ing spondyli­tis, psy­chol­o­gy, com­mu­ni­cat­ing pain, sib­lings, school, anger, frus­tra­tion and feel­ings of martyrdom.

Paul Evans: You’re lis­ten­ing to Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, a UK-based char­i­ty work­ing to help sup­port and inform peo­ple liv­ing with pain and health­care pro­fes­sion­als. This edi­tion has been fund­ed by the City of Edin­burgh Coun­cil and NHS Loth­i­an through their self-direct­ed sup­port inno­va­tion fund.

Now, this is the sec­ond pro­gramme look­ing at issues faced by young adults when a fam­i­ly mem­ber has chron­ic pain. Pre­vi­ous­ly we heard Erin McGuigan’s sto­ry of how her con­di­tion impact­ed on the lives of her sib­lings. We also heard how mem­bers of the Scot­tish Youth Par­lia­ment are push­ing for change in the sup­port received by young car­ers through their Care, Fair, Share cam­paign. In this edi­tion, I’ll be look­ing at the impor­tance of good com­mu­ni­ca­tion when that gen­er­a­tion gap seems too wide to bridge.

Liz For­bat: Teenager­hood is the most dif­fi­cult devel­op­men­tal stage, it’s the most dif­fi­cult stage of life. They’ve a great capac­i­ty, I think, to feel and to begin to under­stand their place in the world.

Kim Radtke: We kind of had an idea that, you know, that he had a lot of pain, and things like that, but the actu­al scale of it and how much of an impact… was real­ly dif­fi­cult to understand.

For­bat: They’re in the posi­tion of not being chil­dren, not being adults, but expe­ri­enc­ing these big issues, with a par­ent or a sib­ling, that’s impact­ed by pain. Whether you con­ceive that as dif­fi­cul­ties in hav­ing atten­tion tak­en away from them, or just about this extra lump of dif­fi­cult life stuff to deal with, on top of being a teenag­er; I think it’s a real­ly tricky posi­tion for them and for the par­ents and oth­er siblings.

Evans: Liz For­bat is a research psy­chol­o­gist and fam­i­ly psy­chother­a­pist. She research­es into phys­i­cal health prob­lems at the Uni­ver­si­ty of Stir­ling and works as a ther­a­pist with fam­i­lies, indi­vid­u­als and cou­ples whose lives are impact­ed by those phys­i­cal health problems.

For­bat: Ordi­nar­i­ly I think, health ser­vices are organ­ised around indi­vid­u­als with the dis­ease. And we see that in the Nation­al Health Ser­vice and in pri­vate care, where it’s the indi­vid­ual that receives the ser­vice. But actu­al­ly we can only real­ly under­stand the impact of the ill health if we’re look­ing at the fam­i­ly more widely.

So, when­ev­er a diag­no­sis comes into a fam­i­ly, you see rip­ple effects on every­body else with­in that. So if some­body receives a diag­no­sis of can­cer, for exam­ple, or has per­sis­tent pain, chron­ic pain, what you’ll see is that that impacts not just on the indi­vid­ual, but oth­er fam­i­ly mem­bers. So that might mean that it restricts activ­i­ties, not just for the indi­vid­ual but for the wider fam­i­ly. Or it may be in terms of how they relate to one anoth­er and what becomes impor­tant with­in that relationship.

We’ve done work around chil­dren with life-lim­it­ing con­di­tions where pain’s very often a part of that. What you do see, and what’s very clear­ly evi­denced in the research lit­er­a­ture, is that sib­lings are put in a posi­tion where they’re grow­ing up faster. So they might be old beyond their years.

In fam­i­lies where that becomes dif­fi­cult, and it can for all sorts of rea­sons, you might see sib­lings adopt­ing all sorts of dif­fer­ent ways of com­mu­ni­cat­ing how that impacts on them. So you might see, for exam­ple, school refusal com­ing into play. And that comes about for a num­ber of dif­fer­ent rea­sons. So, for exam­ple, if you’ve got a child, a young per­son with some sort of pain con­di­tion, per­sis­tent chron­ic pain, and oth­er sib­lings in the fam­i­ly tak­ing on a role of look­ing after them…

Now that may not be phys­i­cal­ly look­ing after them. It may not be what as adults we iden­ti­fy as being a ‘car­er’ role as such. But where a young per­son starts to feel like they are respon­si­ble for the emo­tion­al or phys­i­cal well-being of some­one else and tak­ing on that role – and what you might end up see­ing, what we’ve seen in research and some­what in clin­i­cal prac­tice – is that sib­lings may start to say they don’t want to go to school, and to find ways of stay­ing at home. And that’s not nec­es­sar­i­ly because school is dread­ful and awful, but it’s because they real­ly like they’re tied to the home and tied to the sib­ling, so that they can offer that ongo­ing care and support.

We’ve done work with sib­lings where the well sib­ling has gone into school and basi­cal­ly can’t con­cen­trate all day, and spends the entire time think­ing about what’s going on at home – are they [the ill sib­ling] get­ting the nur­tur­ing and care and sup­port that they need?

And that’s regard­less of whether or not there are adults around that can man­age that, you know, but it’s the respon­si­bil­i­ty that’s inter­nalised and then act­ed upon by these sib­lings. So it has a pro­found effect on all sorts of things. It might come out as school refusal or school avoid­ance or what­ev­er, but actu­al­ly, what we know from the evi­dence from clin­i­cal and from research evi­dence is that that comes from a way of relat­ing to and want­i­ng to relate to the per­son with the pain condition.

Evans: Kim Radtke, orig­i­nal­ly from the Unit­ed States, now lives in Edin­burgh. Her father has anky­los­ing spondyli­tis and rheuma­toid arthritis.

Radtke: He’s had it for at least 20 years, which means that I was about six or sev­en when he was ini­tial­ly diag­nosed. And for a long time, it real­ly didn’t make any sense to me. It was very dif­fi­cult to under­stand why he was so angry all the time, because he always was, he was very angry. And again, when he worked nights, we wouldn’t go to a child­care cen­tre or some­thing dur­ing the day, we’d just stay at home in the sum­mer time when school was out and kind of creep around the house qui­et­ly. It was kind of this game of ‘don’t wake the bear’, where if you woke him up he would be just so angry – dis­pro­por­tion­ate­ly angry – and as chil­dren that was just real­ly dif­fi­cult because you didn’t under­stand what you had done wrong nec­es­sar­i­ly or why he was so mad. And it was, you know, it was very hurtful.

It was very dif­fi­cult for my moth­er. A lot of times, for fam­i­ly func­tions or things like that, we would try and plan in advance things to do, and then he wouldn’t be able to fol­low through on a com­mit­ment he had made, or just being able to go to things. I real­ly didn’t under­stand as a child why my par­ents didn’t sep­a­rate, because I always saw my mum being real­ly sad or upset with the way that things played out and I just couldn’t under­stand why she would put up with that and why she, or how she, could still love him, despite him being, you know, real­ly dif­fi­cult and angry and let­ting her down like that.

And it took me until I was an adult to real­ly under­stand that the frus­tra­tion involved in that whole process of let­ting peo­ple down – it’s not just the anger that you [feel] or the frus­tra­tion that’s from the oth­er peo­ple around you, but it’s also, you’re frus­trat­ed [laugh] because there are things that, you know, you want to be doing these things, you want to be able to make com­mit­ments, and it’s not just the things that are impor­tant to oth­er peo­ple that you end up miss­ing out on, it’s things that are impor­tant to you as well.

Evans: And anger is an instant thing, it’s a now thing. But resent­ment festers.

Radtke: Yeah. And I think that’s some­thing that’s very marked in my fam­i­ly as well, because my broth­er hasn’t been able to form the kind of rela­tion­ship with my father that I’ve man­aged to get. And part of that is because he left the house­hold – he’s a few years old­er than me – so he left the house­hold a few years before I did. And it wasn’t until I was kind of in my mid-teens – and about the time that my broth­er left the house – that they final­ly got an effec­tive treat­ment regime for some of his pain. Once he start­ed that, there was for him some­thing of a marked dif­fer­ence in his abil­i­ty to actu­al­ly just par­tic­i­pate in our lives a bit more.

But, because I had those cou­ple of extra years in the house, over­all, now even, my rela­tion­ship with our father is much bet­ter, because my broth­er nev­er had that chance to live with him when he wasn’t in that kind of reac­tionary mode, where, you know – ‘I’m in pain, this is…’ – you know, that reac­tion, where my broth­er still has a lot more of that kind of lin­ger­ing resent­ment of, ‘you’re always angry for no reason’.

Evans: But you’re talk­ing as if the drugs have cured the problem

Radtke: They haven’t, they haven’t cured the prob­lem. It was the first thing that actu­al­ly made an impact on his pain and that was a decade after being diag­nosed. He final­ly got some­thing that for a cou­ple of years made a dif­fer­ence. But hav­ing that cou­ple of years where he was in less pain and able to do bet­ter man­ag­ing his pain did make a big dif­fer­ence in our abil­i­ty to form a rela­tion­ship and I’m quite sad that my broth­er didn’t have that chance or that expe­ri­ence as well.

Evans: Kim Radtke. Now, at the start of this pro­gramme, Liz For­bat described the teenage years as the most dif­fi­cult stage of life. Par­ents might argue that it can be as dif­fi­cult to live with a teenag­er as it is to be one. There may also be younger chil­dren in the fam­i­ly. So, how would a fam­i­ly ther­a­pist deal with the dif­fer­ent and maybe com­pet­ing issues of each age group?

For­bat: One of the lens­es which fam­i­ly ther­a­pists use is to think about life cycle issues. And by life cycle issues, I mean that you’d approach the fam­i­ly and each mem­ber with­in the fam­i­ly and try and under­stand what was going on for them in terms of their usu­al devel­op­men­tal cycles. So for exam­ple, you’d expect age five to be head­ing into school, age 16 to 18 head­ing out of school and then some­where around ear­ly adult­hood, maybe enter­ing uni­ver­si­ty or the work­place and that sort of stuff.

So what you’d be look­ing at is, does this exis­tence of per­sis­tent pain with­in the fam­i­ly, does that impact on any of these life cycle tran­si­tions? So in ear­ly adult­hood, you’d be look­ing at, does the exis­tence of this pain con­di­tion and the dif­fi­cul­ties around that, is that pulling that young adult back into the fam­i­ly and is it dis­rupt­ing reg­u­lar life cycle pat­terns that you’d expect to see?

John Rol­land, who works in the States in Chica­go, talks about cen­trifu­gal and cen­tripetal forces. And I don’t know if you remem­ber any of that lan­guage from chem­istry at school

Evans: The cen­trifuge push­es every­thing to the outside.

For­bat: Yeah, exact­ly. So cen­trifuge is a kind of, splat every­thing out with, and cen­tripetal kind of pulls things towards the mid­dle. So if you imag­ine a cylin­der, and fam­i­ly mem­bers with­in the cylin­der, and forces either push peo­ple away to the out­side of the cylin­der or into the cen­tre of it – that becomes the centripetal/centrifugal forces. So this mod­el helps us think about what hap­pens when ill­ness and pain comes into the fam­i­ly: does it push peo­ple away or does it pull them in? And often what we see in young adults is that they get pulled back in, and they get pulled back in to the cen­tre of the fam­i­ly and around the indi­vid­ual with the phys­i­cal health prob­lem. And that that might be seen as unhelp­ful­ly dis­rupt­ing some of the reg­u­lar pat­terns that you’d see, with some­body leav­ing home and going off to uni­ver­si­ty, or maybe set­ting up their own fam­i­ly and so on.

So that might be one dis­rup­tion. I guess anoth­er dis­rup­tion might be at oth­er points in time with these forces, about a cen­tripetal force, where peo­ple get pushed away. And that might be with the ongo­ing pres­ence of per­sis­tent pain, that it becomes a real dif­fi­cul­ty for oth­er peo­ple to con­tin­ue to wit­ness it and to often feel very pow­er­less to do any­thing about it and to feel like they can do any­thing to inter­vene and light­en this for the indi­vid­ual. So you might see that also at those crit­i­cal life junc­tures that peo­ple feel like they’re being pushed away. So you might see some­body mak­ing a deci­sion to not live and work and study or get a job in the local area but sud­den­ly feel­ing like they want to go as far as they can.

Evans: Fam­i­ly ther­a­pists talk about cen­trifu­gal and cen­tripetal effects in fam­i­lies, where the cen­trifu­gal force push­es things out to the out­side; the cen­tripetal force drags things into the cen­tre. It sounds to me as if you and your broth­er are one and the oth­er of those.

Radtke: I would def­i­nite­ly agree with that. And it plays out in our larg­er fam­i­ly as well, where my mother’s fam­i­ly, so her broth­ers and sis­ters, her par­ents, they real­ly had a much bet­ter grasp, I think because my moth­er spoke with them, about what was going on and they had a much bet­ter com­mu­ni­ca­tion thing. So, they were much more accept­ing of – ‘yeah, he can’t be here today’ – and were gonna be for­giv­ing of that. Where his fam­i­ly, prob­a­bly part­ly because he didn’t com­mu­ni­cate with them in the same way as I’m say­ing my moth­er did, they didn’t get it and they were quite hard on him.

Evans: You talked about won­der­ing why your moth­er didn’t leave your father. That may the lev­el of under­stand­ing of a child look­ing at their par­ents. In ret­ro­spect, can you see why your moth­er didn’t leave your father?

Radtke: Yeah, I can. They have a very com­mit­ted rela­tion­ship because – he was quite young, he was in his mid-twen­ties when he was diag­nosed with rheuma­toid arthri­tis – so it was, you know, accept­ing this as a part of him. But also, through­out the process of com­ing to under­stand his pain and being able to sep­a­rate that from who he was; as chil­dren, that was just some­thing that we couldn’t under­stand. And being able to see who my father was when he was being him­self and being pain-free, and being able to see the pain as a sep­a­rate part of him, dif­fer­ent from his per­son­al­i­ty, dif­fer­ent from his nor­mal thought process, that, as I’ve become an adult, it’s some­thing I’ve been much more able to appre­ci­ate. And again, as a child, I just didn’t have that con­cept: he was who he was. Obvi­ous­ly her under­stand­ing of that was much better.

Evans: They obvi­ous­ly talked to each oth­er. They com­mu­ni­cat­ed well.

Radtke: They did com­mu­ni­cate. I mean you have to, you have to be able to work togeth­er, or the rela­tion­ship wouldn’t have worked out.

Evans: It sounds to me that pain was in the house. And maybe your par­ents were deal­ing with it, but they didn’t realise that their chil­dren, you and your broth­er, weren’t deal­ing with it.

Radtke: Yeah. I would say that that’s prob­a­bly true.

For­bat: Com­mu­ni­cat­ing with each oth­er about the pain, the impact on every­body with­in the fam­i­ly sys­tem is an impor­tant thing to do. That’s not to say that the same kind of com­mu­ni­ca­tion is the right thing in every fam­i­ly – I know my fam­i­ly com­mu­ni­cates in a dif­fer­ent way than my husband’s fam­i­ly and that that’s right for my fam­i­ly and his family’s ver­sion is right for them – so I don’t think there’s a cor­rect way of man­ag­ing that. And the deci­sions around that would have to be based on each indi­vid­ual family’s his­to­ry of how they talk about ill­ness, how they talk about sup­port­ing each oth­er – what their his­tor­i­cal approach to car­ing for each oth­er looks like. So I think mak­ing sure that fam­i­ly mem­bers feel like they can talk about it and get it out in the open, rather than being some­thing that only one indi­vid­ual has to cope and man­age and deal with on their own. To make it some­thing that the fam­i­ly own as a whole and can man­age as a whole is impor­tant, but I don’t think there’s one right way of doing that.

Evans: You see, with my expe­ri­ence – I have chron­ic pain and have had so for 25 years… and my chil­dren have grown up through it – look­ing back at how I dealt with it, I kept it very per­son­al to myself, but it did break out in anger. They had to push me over that tip­ping point and I would explode and cre­ate an atmos­phere and then it would be gone, at least I thought. Is that a cor­rect way of going on with it?

For­bat: Well like I say, I don’t think there’s a cor­rect way. It sounds like if you’re labelling it as anger, then it didn’t feel right in ret­ro­spect. Look­ing back, it sounds as though you think there might have been oth­er ways of man­ag­ing that. I guess what you’re talk­ing about is some­thing that’s very typ­i­cal of fam­i­lies affect­ed by ill health, per­sis­tent pain being one of those ele­ments, which is, the per­son with the con­di­tion holds the stress of that for them­selves and they’ve worked real­ly hard on pro­tect­ing their fam­i­ly mem­bers from know­ing about it.

Evans: It’s my con­di­tion, I’m going to man­age it.

For­bat: Yep. And some of that’s about own­er­ship of it and some of it’s about pro­tect­ing oth­er peo­ple and think­ing, par­tic­u­lar­ly with chil­dren – and spous­es I think too – that the indi­vid­ual with the con­di­tion wants to just man­age that on them­selves. And there’s a label for that.

Evans: Mar­tyr­dom?

For­bat: [Laughs] Well mar­tyr­dom works! The psy­cho­log­i­cal label’s a bit dif­fer­ent. We refer to that as ‘psy­cho­log­i­cal buffer­ing’. We all know what buffers are and it’s a way of pro­tect­ing and cre­at­ing some space between… And we see that a lot in ther­a­peu­tic prac­tice, where the indi­vid­ual with the con­di­tion tries to pro­tect oth­er peo­ple from it. But what that doesn’t recog­nise is, oth­er peo­ple with­in the fam­i­ly are impact­ed and that the buffer­ing actu­al­ly just cre­ates a bar­ri­er rather than a pro­tec­tive bar­ri­er. And so the anger response is from when things get high­er than the buffer is. So if the buffer is 6ft or 60ft tall and sud­den­ly the bur­den and the pres­sure of the ill­ness is just a mil­lime­tre above that, that’s when that pores over into anger.

Radtke: Right now, one of my biggest con­cerns about my father is with the pro­longed use of steroids. He has put on quite a bit of weight, he’s had dif­fi­cul­ty man­ag­ing his weight, and so I do wor­ry that he will devel­op dia­betes or have a heart attack or some­thing like that. And so I do try and dis­cuss that with my broth­er and he’s very much less will­ing to com­mu­ni­cate with my father about any­thing regard­ing his health. They’re not part of the way he inter­acts with our parents.

Evans: But con­ver­sa­tions aren’t just one way. I can remem­ber with my own moth­er, who had very, very bad pain at the end of her life, and sit­ting down with my moth­er, know­ing full well that she was dying and in a lot of pain – but my father hav­ing been for­bid­den to speak to me and my broth­er about what was wrong – and sit­ting down with my moth­er as we are now, eye­ball to eye­ball: ‘Mum, what is wrong? Can I help?’ And she say­ing, ‘No, noth­ing wrong.’ Many par­ents do find it dif­fi­cult to talk to their sons; daugh­ters are easier.

Radtke: Yeah. [Laughs] And again that kind of gets into our gen­der stereo­types of how we actu­al­ly inter­act, but that may be a big part of it. My par­ents don’t broach the sub­ject with him either, because they know that I have a lot more inter­est in find­ing out about it and keep­ing up to date and being able to be there for them, they do now talk to me a bit more about it.

Evans: So they accept you being there for them.

Radtke: Yes. They do now. You know, if my mum’s hav­ing a real­ly hard day, being able to put up with him being cranky or some­thing like that, she’ll call and just have a bit of a whinge about it. Because you do need to, as some­one who is the car­er, have that space to be able to talk about it. And I’ve real­ly spent some time push­ing my mum to talk about it with some­one. Obvi­ous­ly you need to have sup­port for your­self as a carer.

Evans: It can be very cru­el – and I use that word advis­ed­ly – it can be very cru­el on a young adult car­er, on a son or a daugh­ter, when they’re frozen out of their parent’s pain con­di­tion – for the best pos­si­ble rea­sons – to pro­tect the chil­dren. But it can be very cru­el for the child, in my opinion

Radtke: I would agree with that and I think, par­tic­u­lar­ly my father and my broth­er, would do some of those typ­i­cal father/son bond­ing expe­ri­ences; they were both sports­men so they would go fish­ing quite a bit. And so I think it was real­ly dif­fi­cult for my broth­er as a young adult when my father and my broth­er would plan some sort of activ­i­ty, like plan to go fish­ing or some­thing like that, and my father would be hav­ing a bad day and he wouldn’t be able to get into a boat and sit there for hours… Because they didn’t have that kind of com­mu­ni­ca­tion, you know, my broth­er, he would feel reject­ed – and I think he still car­ries a lot of that with him and if they had talked about it more, I know that their rela­tion­ship now would be better.

Evans: I used the term ‘mar­tyr­dom’, ‘mar­tyr’, and we both had a laugh about it – but it is a seri­ous com­ment isn’t it? If I were com­ing to you with this issue, how would you start with me?

For­bat: The start would be to under­stand the his­to­ry of pain. And some of the ways in which I might start a con­ver­sa­tion around that would be to ask you – when did pain first arrive in your life? when is pain at its strongest? when does pain find itself to be most pow­er­ful in your life and rela­tion­ships? And if you were com­ing with your fam­i­ly, that would be some­thing that we could open up to oth­er peo­ple. So, who is it in the fam­i­ly that notices when pain is most dif­fi­cult for you?

Evans: As the mar­tyr in the fam­i­ly with pain, I would say, it’s me. I would be obliv­i­ous to what is hap­pen­ing around me with my three chil­dren, with my wife, with my par­ents indeed.

For­bat: Obliv­i­ous to the impact on them, do you mean, or…

Evans: Yes. It’s my pain. I’m suf­fer­ing for this, not them.

For­bat: Yeah, and that’s a real­ly dif­fi­cult posi­tion, I think, if one per­son in the fam­i­ly feels like it’s just their bur­den. Depend­ing on what the ses­sion felt like, it may be that I would invite the per­son that was in the mar­tyr posi­tion to take a lis­ten­ing role. What I might do in that sit­u­a­tion is think about a con­ver­sa­tion with the oth­er peo­ple in the fam­i­ly that were in the room and to ask them about what was going on for them. And to invite the indi­vid­ual with the pain to sit, to lis­ten and to then maybe reflect with me about what they’ve heard. So, what that does is to open up a dif­fer­ent way of under­stand­ing what’s going on.

Now I know that can be a very dif­fi­cult and chal­leng­ing posi­tion. That wouldn’t be what I’d do in a first ses­sion. I think there would be a need to build up a rela­tion­ship with the indi­vid­ual, because I think that’s a very chal­leng­ing posi­tion to be in – just sit­ting and hear­ing what pain looks like to oth­er peo­ple. But that might well be a way of chal­leng­ing this idea that it’s just one person’s bur­den, if you like. I think, from a first ses­sion per­spec­tive, what I’d prob­a­bly do is to look at the strengths with­in the fam­i­ly and how it is that as a team, you could gang up on pain.

Evans: Gang­ing up on pain as opposed to gang­ing up on the person?

For­bat: Yeah. So we leave you out of this. And we try and sep­a­rate pain from you. You’re not pain; you have pain, but you are not pain. So tell me about the time before pain came into your life: what was life like for you at that point? Was it in your life when you met your wife? Was it in your life when you had your chil­dren? And to tell me a bit about who you were before pain arrived in your life and to map out some of that – to under­stand you as an indi­vid­ual as sep­a­rate and dis­tinct from pain. And whilst under­stand­ing that [whilst] actu­al­ly it feels very inte­grat­ed at the moment… and by doing that, by sep­a­rat­ing per­son from pain and see­ing the prob­lem as the prob­lem, not the per­son as the prob­lem, you can build up a team approach, think­ing about the strengths that oth­er peo­ple in the fam­i­ly bring, that can help get rid of pain or can help keep pain in its place

Evans: Stay­ing with a mar­tyr theme – let’s turn the tables round and the per­son with­out the pain, the young adult – whose par­ent has pain – he is now the mar­tyr. How do you deal with him or her?

For­bat: So the young per­son is the mar­tyr because their life has been so impact­ed by…

Evans: They can’t go out in the evening, they can’t go on their ski­ing hol­i­day to Aus­tria with the school, they can’t go camp­ing with their friends, can’t go to foot­ball on a Sat­ur­day after­noon. You know, they’re get­ting ham­mered by mum’s pain.

For­bat: It doesn’t real­ly make much dif­fer­ence whether or not it’s the young per­son with the pain, or the par­ent with the pain – it’s start­ing to under­stand that pain can be seen as sep­a­rate to, and impact­ing, every­body in dif­fer­ent ways.

Evans: If, with the ben­e­fit of hind­sight, we can’t take your father’s pain away from him, but we could deal with it as a fam­i­ly dif­fer­ent­ly, how would you do it now?

Radtke: I think that, when there is an ini­tial diag­no­sis, to sit us down and actu­al­ly talk over what the con­di­tion is and what it means and then just to overview what the impact will be. Because for them to say, ‘Oh, he’s got arthri­tis – and, you know, that means that he’s going to be in pain or what­ev­er’, we didn’t under­stand that that would mean that it would affect his sleep or these knock-on effects. And it took me a long time to realise how the pain effect­ed his per­son­al­i­ty and the way that he relat­ed to peo­ple, both with­in our fam­i­ly and out­side our fam­i­ly… I mean it did, it affect­ed every­thing. And just spend­ing more time mak­ing sure that every­one under­stands what that can actu­al­ly do.

Everyone’s needs will be chang­ing through­out the process, and you have reg­u­lar check-ins – and I think that’s one of the impor­tant things – to make sure that every­one gets a chance to say how it’s impact­ing them. Just to have a more thor­ough con­ver­sa­tion and to do it reg­u­lar­ly instead of just when something’s wrong… to check in and talk about things when they were going OK, when they were going bad and when they were going good, just to have lots of com­mu­ni­ca­tion about it.

For­bat: Ret­ro­spect – you know, hind­sight is 20/20 – but by speak­ing to the peo­ple that feel a lit­tle bit fur­ther on than you and learn­ing from them about what they would want. I guess as a fam­i­ly ther­a­pist I’d say maybe you should all think about fam­i­ly ther­a­py, maybe that would be help­ful?! That’s not for every­body, but I think cer­tain­ly being exposed to oth­er peo­ple with per­son­al expe­ri­ence – you know, peo­ple who are experts by expe­ri­ence – that’s a real­ly pow­er­ful way of enabling some of that learn­ing and to short-cir­cuit some of that for people.

Evans: How would I find a fam­i­ly ther­a­pist? Or, how would my wife find a fam­i­ly ther­a­pist? Or my children?

For­bat: Fam­i­ly ther­a­pists are ordi­nar­i­ly reg­is­tered on the UKCP, the UK Coun­cil for Psy­chother­a­py, web­site. You might also find oth­er prac­ti­tion­ers reg­is­tered on oth­er pro­fes­sion­al bod­ies. So you’d be look­ing at some­body that’s reg­is­tered as a psy­chother­a­pist and that means that they’ve under­gone appro­pri­ate train­ing, they get super­vi­sion and con­tin­ue with their pro­fes­sion­al devel­op­ment and so on. So you’d be look­ing at maybe UKCP web­sites to find fam­i­ly therapists.

Evans: That was fam­i­ly psy­chother­a­pist Liz For­bat. And the UKCP – that’s the UK Coun­cil for Psy­chother­a­py web­site – is psychotherapy.org.uk. Now, Pain Con­cern has also launched spe­cif­ic ser­vices to sup­port young adult car­ers: through these pro­grammes; its forum, where you can con­nect with your peers; arti­cles in Pain Mat­ters mag­a­zine and infor­ma­tion leaflets. All details are at our web­site, which is painconcern.org.uk

I have to remind you that, whilst Pain Con­cern believes the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound, based on the best judge­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well-being. He or she is the only per­son who knows you and your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf. Don’t for­get that you can still down­load all edi­tions of Air­ing Pain from our web­site, once again, it’s painconcern.org.uk. Or you can obtain CD copies direct from Pain Concern.

So, to end this edi­tion of Air­ing Pain, I asked Kim Radtke for her advice to young adult car­ers who find them­selves in the same sit­u­a­tion that she found her­self in…

Radtke: Try and get some infor­ma­tion for your­self. Go out and see what you can find so that you have a base knowl­edge of what’s going on. From there you can say that, you know, ‘this may not be you, this is you with pain and that is dif­fer­ent.’ We have to acknowl­edge the pres­ence of pain. Once you acknowl­edge it, you can actu­al­ly start to work on its impacts on your rela­tion­ships and on what you’re doing with your life and how you are relat­ing to every­one around you.


Con­trib­u­tors:

  • Kim Radtke
  • Liz For­bat, Fam­i­ly ther­a­pist and Read­er in Can­cer and Pal­lia­tive Care, Uni­ver­si­ty of Stirling.

More infor­ma­tion:

To find a qual­i­fied fam­i­ly ther­a­pist or for more infor­ma­tion vis­it the UK Coun­cil for Psy­chother­a­py web­site: psychotherapy.org.uk.

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