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Transcript – Programme 27: Arthritis: Challenging perceptions

Set­ting the record straight on arthri­tis, and prac­ti­cal tips on liv­ing with the condition

To lis­ten to this pro­gramme, please click here.

In this pro­gramme we tack­le the issue, raised by Judy on our forum, of how peo­ple with arthri­tis – which often has no obvi­ous phys­i­cal symp­toms – can get help in explain­ing their con­di­tion to those around them. Pro­fes­sor David Walsh explains about the dif­fer­ent kinds of arthri­tis. Jo Cum­ming, Kate Llewellyn and Minal Smith of Arthri­tis Care talk about their own expe­ri­ences of the chal­lenges of liv­ing with pain and how the infor­ma­tion the char­i­ty pro­vides can help peo­ple like them.

Although arthri­tis is com­mon­ly thought to be a con­di­tion which only affects the elder­ly it can affect peo­ple of all ages – even babies. Kate Llewellyn, who devel­oped arthri­tis at a young age, tells us about Arthri­tis Care’s book­let for par­ents, which pro­vides strate­gies on how to adapt fam­i­ly life when a child is diag­nosed with a form of the disease.

Issues cov­ered in this pro­gramme include: Arthri­tis, mis­con­cep­tions, explain­ing pain, flare-up, joint pain, inflam­ma­to­ry arthri­tis, osteoarthri­tis, exer­cise, rela­tion­ships, hate crime, lack of under­stand­ing, pain beliefs, invis­i­ble dis­abil­i­ty, school, chil­dren and young peo­ple, depres­sion and elder­ly people.

Paul Evans: Hel­lo, I’m Paul Evans and wel­come to Air­ing Pain, a pro­gramme brought to you by Pain Con­cern; the UK char­i­ty that pro­vides infor­ma­tion and sup­port for those of us who live with pain. This edi­tion is made pos­si­ble by Pain Concern’s sup­port­ers and friends. More infor­ma­tion on fundrais­ing efforts is avail­able on our Just Giv­ing page at painconcern.org.uk.

Jo Cum­ming: When arthri­tis flares up, espe­cial­ly for the inflam­ma­to­ry forms of arthri­tis, it is excru­ci­at­ing – you do not sleep.

Lexi Bar­ber: ‘Oh you are look­ing bet­ter’ is one of the worst things some­one can say. They mean it is a com­pli­ment but, actu­al­ly, it’s like ‘I might look fine, but I real­ly hurt right about now.’

Kate Llew­lyn: ‘Oh, you are too young to have arthri­tis’ and you spend your life going, ‘Well, actu­al­ly no I am not’. Babies can be diag­nosed with arthri­tis. It can hap­pen at any age to anybody.

Evans: In today’s edi­tion of Air­ing Pain, we are com­ing to grips with a ques­tion by Judy on Pain Concern’s mes­sage board. It relates to the 10 mil­lion or so peo­ple in the UK who have arthri­tis and of course their fam­i­lies, each affect­ed in a unique way. This is what she says:

‘My hus­band has arthri­tis and has recent­ly suf­fered a very bad flare up. I think one of the issues for peo­ple with pain is the lack of under­stand­ing in those around them of what they are going through. I know that in my husband’s case, he has the “just need to get on with it” atti­tude, which can often be mis­read. So they also have to take on the bur­den of edu­cat­ing those around them, of what liv­ing with pain is like and how they may pro­vide a bet­ter sup­port­ing role. What resources are there to help peo­ple in this situation?’

Well, Judy, today we are look­ing at one such resource pro­vid­ed by the char­i­ty Arthri­tis Care, but before that we need to know what arthri­tis is. David Walsh is Asso­ciate Pro­fes­sor in Rheuma­tol­ogy at the Uni­ver­si­ty of Not­ting­ham and he is Direc­tor of the Arthri­tis Research UK Pain Centre.

Pro­fes­sor David Walsh:Arthri­tis’ is an over­rid­ing term used to describe a whole series of con­di­tions that affect the joints, rang­ing from what is the com­mon­est form of arthri­tis, osteoarthri­tis – which I tend to think of as a repair response in the joints – through to con­di­tions such as rheuma­toid arthri­tis, which are inflam­ma­to­ry con­di­tions, which erode and dam­age the joints. Osteoarthri­tis prob­a­bly affects every­body at some stage in their life. Con­di­tions such as rheuma­toid arthri­tis are much less com­mon, but are very impor­tant, because they cause a lot of prob­lems, maybe, two per cent of the pop­u­la­tion in the UK, may have rheuma­toid arthri­tis. There are some oth­er forms of arthri­tis which are much rar­er than that. One of the fac­tors that is com­mon across all forms of arthri­tis is that they cause pain.

Cum­ming: My pain is always there, it is like a sub­text going on.

Evans: This is Jo Cum­ming of Arthri­tis Care.

Cum­ming: My ankle is remind­ing me now, it is like a low lev­el deep pain but it is not both­er­ing me because I am used to it and I guess for me, that’s nor­mal. How­ev­er, at times, it feels like some­body has got a red hot nee­dle and they are just pok­ing away in that joint. You are winc­ing as I am telling you this.

Evans: I am.

Cum­ming: I am sure there are a lot of peo­ple who iden­ti­fy with this, then it turns into maybe a nail file that is grind­ing on the bone and that is a bit hor­ri­ble. With arthri­tis, espe­cial­ly, some­times, that sharp pain is accom­pa­nied by the noise of bone grat­ing on the bone [laughs], which is hor­ri­ble, and when you hear it – it is not so much the pain – it just makes you feel sick – ‘Ooh! There is a lot of dam­age going on there!’ [laughs] It is such a vis­cer­al reminder that things are not right.

Evans: Well, I am glad you can laugh about it. But you talk about a low lev­el pain…

Cum­ming: Yeah.

Evans: I know what a low lev­el pain is – that is fine today, I can cope with that today. You can prob­a­bly cope with it today.

Cum­ming: Yeah.

Evans: but it’s there tonight, it’s there tomor­row, it’s there tomor­row night….

Cum­ming: Yes, and it stops you sleep­ing, it affects the whole qual­i­ty of life. When arthri­tis flares up, espe­cial­ly for the inflam­ma­to­ry forms of arthri­tis, it is excru­ci­at­ing. You do not sleep, it hurts to move and yet, we tell peo­ple all the time – ‘exer­cise is great’ – and they say ‘Yeah, but it real­ly hurts’.

Walsh: How peo­ple under­stand their pain has an impor­tant impact on how they man­age it. If, for exam­ple, you under­stand that the pain in your knee is a sign that your knee is being dam­aged by what­ev­er it is that you are doing then, you will stop doing it. Now, it could be that in fact, what you are doing is the best thing in the long term and there­fore, if you stop doing it, actu­al­ly, you will do worse in the long term.

In oth­er words, some­times what we believe about what is going on, can inhib­it us, can pre­vent us from pur­su­ing a treat­ment. For exam­ple, if you twist your ankle, it hurts to walk on it and the instinc­tive under­stand­ing of that is ‘if it hurts when I am walk­ing on it, I must be doing more dam­age and, there­fore, I should stop walk­ing on it’.

And yet, we know that if you don’t walk on a twist­ed ankle until the pain has com­plete­ly gone away, then you will end up with a weak ankle. You lose the pro­tec­tive reflex­es and then you are more like­ly to go over on it again, you are more like­ly to get a twist­ed ankle again. So in fact, what we tend to advise is that, as soon as peo­ple can, they should take the painkillers, but they should try and walk as nor­mal­ly as pos­si­ble on the ankle so that it repairs in a way that it actu­al­ly does the thing that they want it to in the long term, which is in some ways counterintuitive.

The same thing applies to, for exam­ple, osteoarthri­tis of the knee. Peo­ple stop walk­ing because they have got pain in their knee, then in the short term the pain may feel bet­ter but, in the long term, as they lose the mus­cle strength round the knee and again the pro­tec­tive reflex­es, they may become more dis­abled. And, in fact, one of the cor­ner­stones of advice for osteoarthri­tis with the knee is exer­cise. It is about keep­ing the mus­cle strong. It is about main­tain­ing your activities.

Cum­ming: Some days I do not want to go on an exer­cise bike, but I know that if I do, and do it slow­ly and work through it, it will improve the qual­i­ty of my pain and help me cope. In fact, now, because I have been real­ly quite good at doing this, it has helped me lose weight, I eat bet­ter, I sleep bet­ter, I am more tired phys­i­cal­ly and it is good tired­ness. You know, it’s like you sit down and you think ‘Oh yes!’ [laughs]. And if I don’t exer­cise now, I can tell the next day, I am going to be in pain.

Swim­ming is good as well. If I get a chance with a good hot pool or a hot coun­try, I will swim and swim and swim. The exer­cise bike is 30 min­utes a day, I watch Coro­na­tion Street – why not? You know it’s 30 min­utes of my life I will nev­er get back [laughs]. You’re going to be sat there watch­ing TV, so I just get the lit­tle legs going. And also it is very impor­tant to keep the mus­cle tone. With arthri­tis, you tend to have a loss of mus­cle around the joint area. For me it’s my knees, and for most peo­ple, it’s the quadri­ceps that dete­ri­o­rate. So that keeps them nice and strong, keeps the joints sta­ble, less pain.

Evans: So is exer­cise suit­able for every­body with arthritis?

Cum­ming: You should always get some­one to assess you, and the best per­son for that is a phys­io­ther­a­pist. I am a big fan of phys­io­ther­a­pists. We have to explain to peo­ple that when they go to their phys­io­ther­a­pist and they get all these exer­cis­es, it’s not just for the 6 weeks – actu­al­ly, your exer­cise should be for life. They’re just there to teach you how to do it.

Evans: And Jo Cumming’s advice that you should always get some­one to assess you before under­tak­ing an exer­cise plan very much rein­forces our mes­sage on Air­ing Pain – that whilst we believe the infor­ma­tion and opin­ions 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 well­be­ing. He or she is the only per­son that knows you and your cir­cum­stances and there­fore, the appro­pri­ate action to take on your behalf.

Now, Kate Llewellyn is Head of Infor­ma­tion Ser­vices at Arthri­tis Care. She is respon­si­ble for the devel­op­ment of infor­ma­tion they pro­duce about liv­ing with arthritis.

Kate Llewellyn: The big issues for peo­ple liv­ing with arthri­tis real­ly are pain, the fact that you often can’t see pain. I myself have got arthri­tis and often get chal­lenged because I have a blue badge, because peo­ple think there is noth­ing wrong with me. It can be very demor­al­is­ing and upset­ting to be accused of, some­times you know, pre­tend­ing there is some­thing wrong with you

Evans: You look fine.

Llewellyn: The immo­bil­i­ty, iso­la­tion, not being able to get about. The fact that it can affect friend­ships and rela­tion­ships, it can affect your work. It can get into every part of your life which is why Arthri­tis Care is here, to try and show peo­ple that… to help them learn tech­niques or tips on how they can man­age and make things better.

Evans: When I say you look fine I wasn’t being patronising.

Llewellyn: Hmmm.

Evans: I was actu­al­ly say­ing there is no out­ward sign to me that you have arthritis….

Llewellyn: Hmmm, hmm.

Evans: And, pre­sum­ably as a mem­ber of the pub­lic, that affects the way I would deal with you.

Llewellyn: The worst expe­ri­ence I have had has been to do with park­ing and the car. I have a blue badge because I can’t walk very far at all. With­out my blue badge, I wouldn’t be able to get out and about. One time, an old man – this is when I was about 17 – threat­ened to call the police on me. He was shout­ing at me in a pub­lic car park and just would not believe that there was any need for me to use the dis­abled space or use the badge. I was quite hap­py for him to call the police. It was dread­ful­ly upsetting.

More recent­ly, out­side my home, I have had a dis­abled bay put in so, I can actu­al­ly park – I live in Lon­don, so park­ing is always real­ly dif­fi­cult – and peo­ple have scratched my car because they don’t believe that I am dis­abled. It’s kind of a dis­abil­i­ty hate crime and it is real­ly upset­ting when some­thing like that hap­pens, right out­side your house. You’re wor­ried about peo­ple com­ing to your house, threat­en­ing your space and there is not a lot you can do to prove it, unfortunately.

Evans: Kate Llewellyn. Now amongst the lit­er­a­ture, Arthri­tis Care pro­duces – and one of the many ben­e­fits of mem­ber­ship, as it hap­pens – is a quar­ter­ly lifestyle mag­a­zine, Arthri­tis News. It’s Edi­tor is Minal Smith.

Minal Smith: At the moment, I am actu­al­ly writ­ing a fea­ture on clothes and shoes. This is a prob­lem that comes up a lot, on our dis­cus­sion forums, where peo­ple find it dif­fi­cult, you know, they might strug­gle with but­tons, if they have prob­lems with their fin­gers. It can be quite dif­fi­cult to bend down and pull up stock­ings or tights, for instance. So, this arti­cle is look­ing at what the prob­lems are and poten­tial solu­tions. So that could be things like choos­ing things with­out but­tons or choos­ing things with large but­tons and there is also a num­ber of aids avail­able on the market.

But, it’s most­ly look­ing at what peo­ple can do, to help them­selves and also look­ing at… obvi­ous­ly peo­ple with arthri­tis, you still want to be able to look good and have a choice. Unfor­tu­nate­ly, the mar­ket is very much geared towards peo­ple who don’t have those sorts of dif­fi­cul­ties, so it is try­ing to find solu­tions that are styl­ish but prac­ti­cal and comfortable.

I think that clothes, in how you look, can have a big impact on how you feel. If you are stuck at home and you are strug­gling with sim­ple things, like putting some­thing on and then you end up putting some­thing on that you don’t real­ly like or it doesn’t real­ly look good, then it is very easy to sort of sit there and say ‘I’m not going to go out or do anything’.

We did a project a few years ago, look­ing at this issue. Peo­ple did say then, things like using Vel­cro was a good solu­tion; zips are eas­i­er than but­tons; think­ing about where a fas­ten­ing is – so if some­thing is at the back, it might be dif­fi­cult to reach – you can buy gar­ments that have side fas­ten­ings and that actu­al­ly, is some­thing you can find in main­stream shops as well, because it is sort of a style thing, so you can find that; choos­ing a jumper with a big neck so that it is eas­i­er to pull on. We have had quite a lot of feed­back already through our dis­cus­sion forums because you can real­ly see what is on peo­ples’ minds by what they are ask­ing the oth­ers about and also our helpline team feed back to us on the kinds of calls they get.

Evans: Minal Smith, Edi­tor of Arthri­tis News. The writ­ten word, be it on paper or online, is all very well but, when you want help and sup­port and an empa­thet­ic voice to talk to now – then this is where the helpline, which Minal referred to, comes in.

Cum­ming: Gen­er­al­ly, the first con­tact is some­body in con­sid­er­able dis­tress and they just need to get it out, just need to talk.

Paul Evans: Jo Cum­ming is Arthri­tis Care’s Helpline Manager.

Cum­ming: The major­i­ty of peo­ple want to know about the con­di­tion and under­stand it and often, they have been giv­en a load of tech­ni­cal, med­ical gob­bledy­gook from their GPs or their spe­cial­ists and they need some­one to help them find their way through to under­stand, you know, what the con­di­tion is and the treatment.

The next big­gie – and it is only mar­gin­al­ly small­er – is peo­ple want­i­ng to talk about their pain. They want some­body to help them to self-man­age and what the team will do, is lis­ten to them, give an awful lot of empa­thy because they are all trained and qual­i­fied coun­sel­lors. So that is, in itself, for some­body who has lived with pain for a long time – they haven’t been able to talk to their doc­tors, or their fam­i­ly even, about it. They are lis­tened to but, more impor­tant­ly, they are believed.

Evans: Jo Cum­ming. The Arthri­tis Care Help Line is open from 10am to 4pm every week day. The free phone num­ber is 0808 800 4050 or you can email them at helpline@arthritiscare.org.uk. You will be remind­ed of all these con­tact details towards the end of the programme.

Now there are many mis­con­cep­tions about arthri­tis. Here’s David Walsh again, he is Direc­tor of the Arthri­tis UK Research Pain Centre.

Walsh: It is com­mon­ly thought that arthri­tis is a con­di­tion of old peo­ple. That is not true. It is true to the extent that any con­di­tion that cur­rent­ly doesn’t have a cure, is going to be more com­mon in old peo­ple, because we col­lect things as we go through life. But, arthri­tis, can affect peo­ple for the first time, at any age – so, chil­dren can have arthri­tis and old peo­ple can have arthritis.

I get frus­trat­ed, because I hear often, peo­ple talk­ing about osteoarthri­tis and back pain as being ‘degen­er­a­tive con­di­tions’. And ‘degen­er­a­tion’ to me means ‘wear and tear’, like a car – the more miles you do in a car, the more bits wear out until you can’t replace them any­more and then you get rid of it. There is a big dif­fer­ence between back pain and a car. A back is not wear­ing out – what is hap­pen­ing is, that it is con­stant­ly repair­ing itself and the changes that we see on the x‑rays are a con­se­quence of that repair process.

So, in fact, peo­ple are not wear­ing their bones out. Peo­ple with back pain don’t have thin­ner bones, they actu­al­ly have got more bone – you see extra bits of bone. Discs on the x‑ray may look nar­row­er but that is not because they have ground down like a wash­er in a machine – they are nar­row­er because they have been replaced by some­thing else that does the job that takes up less space. It is a bit like look­ing at your skin and see­ing your scars and think­ing that your skin is wear­ing out. It’s not wear­ing out. You cut your­self, you get a scar, you know what’s hap­pened. It does the job, doesn’t look the same, but there it is.

So these con­di­tions, they are not degen­er­a­tive, in the sense of a car wear­ing out. I think that is impor­tant, because it changes the way that you look at it. For your body to repair itself as well as it can do, it needs to be used, which is the exact oppo­site of wear and tear. The more you use a car, the more it wears out. By keep­ing using your body, it repairs itself bet­ter. Sec­ond­ly, if it was wear and tear, then the old­er you got, the worse it would get, but in fact, that is not what we find – a lot of these prob­lems, become a peak prob­lem in late work­ing life and then maybe become less both­er­some as time goes on. It is not sim­ply a case of ‘ooh, you’ve got arthri­tis, there­fore, it is going to get worse, the old­er you get’ – it is much more com­plex than that. This isn’t wear and tear like a car.

Lexi Bar­ber: I am 24 and I have arthritis.

Evans: This is Lexi Bar­ber. She is Edi­to­r­i­al Coor­di­na­tor for Arthri­tis Care. So you are 24, you look fit and very, very well [Bar­ber laughs]. You don’t have, what I asso­ciate with arthri­tis, which is the conker like knuck­les. How do I know that you have arthritis?

Bar­ber: You don’t – that is the trou­ble. It is one of those invis­i­ble dis­abil­i­ties. The clas­sic image of the painful hands is very mis­lead­ing, because it can affect any joint and it can affect any­one in any dif­fer­ent way. If you were to look at me, you wouldn’t know, but it is because mine’s in my knees, so if you were to watch me walk over a longer peri­od of time, you would realise that it is a strug­gle, but you wouldn’t nec­es­sar­i­ly know why or you might just think, I am real­ly lazy.

Evans: So, how does it affect you?

Bar­ber: You just have to, kind of, rely on your friends and make sure that they know, that you’re not just being dif­fi­cult when you say ‘Can we not go to that pub because the toi­lets are up two flights of stairs, and I don’t want to have to keep going up and down cause I know we are spend­ing the entire evening here’. You have to know that they will adapt to you and not be afraid to com­mu­ni­cate that with them, but at the same time, not come across like a hypochondriac.

Evans: So there are two things here: they have to be… [pause] …I was going to say sym­pa­thet­ic, but not sym­pa­thet­ic – empa­thet­ic… [Bar­ber: Yes.] …to your con­di­tion, but you also have to be able to explain to them what it is all about.

Bar­ber: Yes, def­i­nite­ly and my close friends def­i­nite­ly have picked it up, so I don’t need to com­mu­ni­cate it to them any­more. They can tell when I am hav­ing a bad day and they have learnt to fil­ter in rest breaks with­out mak­ing a thing or it, where­as, at first, it was very much like ‘Do you need to sit down?’ And because that put a respon­si­bil­i­ty on me to slow every­one down, I was just like ‘No, no, I’m fine, let’s car­ry on’ and then I would pay for it the next day. But now they are all like ‘Let’s all sit down for a bit’. And they don’t make a thing of it, so it is def­i­nite­ly about give and take with communication.

Evans: But that is good friend­ship isn’t it?

Bar­ber: Yes, def­i­nite­ly. It’s tak­en a while to get there as well and I do still have a few peo­ple who just look at me and think ‘Oh, there’s noth­ing wrong with you, you’re young’.

Evans: ‘You’re look­ing better’….

Bar­ber: ‘Oh, you are look­ing bet­ter’ is one of the worst things some­one can say. They mean it as a com­pli­ment but, actu­al­ly, I’m like ‘I might look fine but I real­ly hurt right about now’. And you just sort of get used to it, bit­ing your tongue and get­ting on with it, most of the time [laughs].

Evans: That was Lexi Bar­ber. Kate Llewellyn devel­oped arthri­tis, when she was only 13.

Llewellyn: I had to have a year off school because I wasn’t able to phys­i­cal­ly get in to school and cope with day-to-day life real­ly. I became, I now realise, depressed and very iso­lat­ed from my peers. You know, when you are about 15/16, it is a real­ly impor­tant time to be learn­ing about who you are, so it was, very chal­leng­ing, to be run­ning around, to be on the net­ball team, to be a hur­dler and then sud­den­ly, to fall over the hur­dles and not know what is wrong with you, which is what hap­pened to me.

I was lucky to be diag­nosed, quite quick­ly. It does stop your life. It stops you becom­ing the per­son, you thought you might be – but also, for me, devel­op­ing it as a teenag­er, it has allowed me to then shape my life, to still to do some­thing, I am excep­tion­al­ly proud of. And some­thing that I am inter­est­ed in. What is dif­fi­cult, is that peo­ple just always go ‘Oh you are too young to have arthri­tis’ and you spend your life going, ‘actu­al­ly, no I am not’. Babies can be diag­nosed with arthri­tis. It can hap­pen at any age to any­body. Hav­ing to jus­ti­fy it, is like an extra thing of expla­na­tion, just to say ‘It’s true, I real­ly do have it and it affects me significantly’.

Bar­ber: We have recent­ly, just pro­duced a new book­let for par­ents of chil­dren with arthri­tis, in terms of the chal­lenges they might face, as they are diag­nosed and also, the strate­gies that peo­ple use to cope with fam­i­ly life. When your child has arthri­tis, it can impact on the whole family.

To begin with, if they are diag­nosed very young – so when they are still babies or tod­dlers – it can be dif­fi­cult to get a diag­no­sis, because there is a com­mu­ni­ca­tion bar­ri­er straight away that their child can’t tell them what hurts and how much it hurts and why it hurts. So, the par­ent has to be quite vig­i­lant in look­ing out for signs, such as swelling. When they do take them to the doc­tor, a lot of the time, it can be mis­in­ter­pret­ed as just hav­ing a knock, from being too aggres­sive when they have been play­ing or they have fall­en over or something.

Then as you are grow­ing up, it’s sim­ple things, like if you have oth­er sib­lings, you have to learn how to let them under­stand how arthri­tis affects their broth­er or sis­ter, so they may not be able to play rough and tum­ble as much or they might not be up to fam­i­ly out­ings in the same way. Also, in terms of atten­tion, obvi­ous­ly you need to look after your child who has arthri­tis, but you also need to make sure that your focus is fair­ly split, as it were.

You also have oth­er things such as, inform­ing schools that your child might not be able to do PE every day or that they might need reg­u­lar breaks from sit­ting or that they will need more time off than most chil­dren to go to hos­pi­tal appoint­ments and every­thing. So, it is about com­mu­ni­cat­ing with who you need to inform about your child’s arthri­tis and how it will affect them.

And as they grow up and become teenagers, there’s the usu­al thing of how much inde­pen­dence to give your teenag­er and when your child has got arthri­tis, you have to take that into account – you want to give them more inde­pen­dence over things like, how they choose to take their med­ica­tion, they might want to dis­cuss tak­ing it in a dif­fer­ent form, or hav­ing a dif­fer­ent rou­tine, or tak­ing charge of it them­selves, rather than being giv­en their med­ica­tion. It is all about let­ting them find their inde­pen­dence, while real­is­ing that they do have to adapt for their con­di­tion as well.

The inde­pen­dence thing def­i­nite­ly shows up more when peo­ple are look­ing at col­leges and uni­ver­si­ty. When you are let­ting them move out, you have to take into account that they are going to be look­ing after them­selves – it is quite hard for a lot of par­ents, I think.

Cum­ming: It is rare that you get osteoarthri­tis when you are younger. The kids with the juve­nile form of inflam­ma­to­ry arthri­tis – it is hard to diag­nose, it takes a long time, so the par­ents get real­ly quite anx­ious about it. They say ‘Why couldn’t they tell us this ear­li­er?’ Well, it is hard to diag­nose because it could mir­ror so many oth­er juve­nile ill­ness­es and it is dif­fi­cult to know with kids.

The pain for chil­dren – because for many of them, the symp­toms come on when they are tod­dlers – they live with pain all the time and they think every­body else does. A friend of mine’s lit­tle girl said ‘Well I thought, it hurt every­body to walk upstairs, I didn’t realise. I thought that every­body felt pain walk­ing up the stairs.’

And they tell us a lot of inter­est­ing things about cop­ing with pain and under­stand­ing pain. When you see it through the eyes of chil­dren who are actu­al­ly, liv­ing it, every­day, and the mums and dads have to help them exer­cise and move those painful joints, it is a real eye open­er and it is mov­ing.

The per­son who we always get in to train the team about par­ents and about kids is Dr Car­rie Brit­ton and she wrote a great book called Choic­es: kids with arthri­tis. She can real­ly explain from a parent’s point of view and she showed us – and it was excru­ci­at­ing to watch – she actu­al­ly videoed her­self help­ing her lit­tle girl to exer­cise and the tears and the pain – we were like ‘oh, ooh…’ there was not a dry eye. But it has to be done, you know, you are doing it for your child but you are hurt­ing your child. But you are doing it so that they’ll have a bet­ter qual­i­ty of life lat­er, but it is hard for the kid­die to under­stand at that point, why this has to be.

When you have a child with a chron­ic con­di­tion, it’s not just the pain, you have that extra… just take going out for the day – the extra thing of the med­ica­tion, the pack­ing, the get­ting every­thing organ­ised. We work quite a bit with fam­i­lies in Arthri­tis Care and we have adven­ture breaks for the chil­dren, where they can get out and abseil down a moun­tain. These are kids that prob­a­bly a lot of soci­ety has writ­ten off, but then you see them, and they are out, and they are doing the things that oth­er kids in the class can do and they get a chance to do it and it is great.

Evans: So for par­ents, who are strug­gling by them­selves and need some­body to talk to, or any­body involved with some­body with arthri­tis, they should phone the Arthri­tis Care helpline?

Cum­ming: Yes. We will send them a free pack of infor­ma­tion, actu­al­ly tai­lored to what they need to know. We will talk to them and it doesn’t end there – if they want to ring again, they are most wel­come. We have groups, we have self-man­age­ment train­ing cours­es – they can all access these free. It is just the first step for many people.

Evans: And how do we get in touch with you?

Cum­ming: You can ring us on 0808 800 4050. It is a free call, we are open Mon­day to Fri­day (10am to 4pm). You can write to us, you can email us at helplines@arthritiscare.org.uk or you can get online and chat to helplines on the forum.

Evans: Jo Cum­ming, Helpline Man­ag­er of Arthri­tis Care. Arthri­tis Care also run a series of self-man­age­ment pro­grammes through­out the UK and I have just com­plet­ed the chal­leng­ing Pain work­shop in Cardiff – it’s for peo­ple with all chron­ic pain con­di­tions, not just arthri­tis and you can hear how I got on, in the next edi­tion of Air­ing Pain.

Now today’s pro­gramme came out of a very straight­for­ward request from Judy on our mes­sage board, so if you would like to put a ques­tion to our pan­el of experts or just make a com­ment about these pro­grammes, then please do so via our blog, mes­sage board, email, face­book, twit­ter or pen and paper. All the con­tact details and links to down­load all edi­tions of Air­ing Pain are on our web­site which is Painconcern.org.uk.

And for more details of Arthri­tis Care, their web­site is arthritiscare.org.uk. Now, the last word in this edi­tion of Air­ing Pain goes to Lexi Bar­ber and I think it applies not just to peo­ple with arthri­tis but to all of us with per­sis­tent pain.

Evans: For some­body, ear­ly twen­ties, late teens, what would your advice be to them and their par­ents and their friends?

Bar­ber: Be open about it because, peo­ple can’t always see the prob­lem. And try and com­mu­ni­cate it in a ‘I have this. It caus­es me a prob­lem in this prac­ti­cal way and this is how we can avoid it’ because peo­ple are far more respon­sive if you are try­ing to com­mu­ni­cate a prac­ti­cal solu­tion rather than just going ‘Oh no, my knees real­ly hurt today’. They might not under­stand how you feel pain, because every­one feels pain dif­fer­ent­ly, they might not under­stand how it’s an ongo­ing thing, but if you say to them ‘my knees real­ly hurt today, so can we take the bus instead of walk? Can we do this, instead of this? – it helps to open up com­mu­ni­ca­tion path­ways, rather than just being the one who always comes across as always say­ing ‘Oh, my knees hurt’. It’s impor­tant to be open and ask for help when you need help.


Con­trib­u­tors:

  • Prof David Walsh, Asso­ciate Pro­fes­sor in Rheuma­tol­ogy, Uni­ver­si­ty of Not­ting­ham and Direc­tor, Arthri­tis Research UK Pain Centre
  • Jo Cum­ming, Kate Llewellyn and Minal Smith, Arthri­tis Care.
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