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Transcript — Airing Pain 128: Back Pain & Pain From A Global Perspective With The International Association For The Study Of Pain (IASP)

Look­ing into one of the most glob­al­ly preva­lent types of pain, back pain, and explor­ing dif­fer­ent cul­tur­al atti­tudes towards pain.

To lis­ten to the pro­gramme, please click here.

This edi­tion of Air­ing Pain was cre­at­ed in asso­ci­a­tion with the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain (IASP) and has been fund­ed by the Plum Trust.

Back pain is one of the most com­mon types of pain that peo­ple report. It can arise due to any num­ber of causative fac­tors and can occur in any part of the back. Low­er back pain and Sci­at­i­ca are par­tic­u­lar­ly com­mon and affect approx­i­mate­ly 577 mil­lion peo­ple globally.

In this episode of Air­ing Pain we have col­lab­o­rat­ed with the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain (IASP) who are ded­i­cat­ing their glob­al year 2021 to back pain. 2021 Glob­al Year About Back Pain – IASP (iasp-pain.org)
We also ded­i­cate a por­tion of the episode to use­ful pain man­age­ment advice that will ben­e­fit any­body liv­ing with pain, includ­ing those with back pain.

Issues cov­ered in this pro­gramme include: pain from a glob­al per­spec­tive, pain in devel­op­ing coun­tries, Glob­al Alliance of Part­ners for Pain Advo­ca­cy (GAPPA), chron­ic con­di­tion man­age­ment, back pain, IASP Glob­al Year about Back Pain, self-man­age­ment approach­es, phys­io­ther­a­py, ther­a­peu­tic exer­cise, pain in rur­al areas, phys­i­cal strate­gies, phar­ma­ceu­ti­cal strate­gies, psy­cho­log­i­cal strate­gies, the ‘3 P Method’, mask­ing pain, pain psy­chol­o­gy.


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 those who care for us. 

I’m Paul Evans and this edi­tion of Air­ing Pain has been fund­ed by the Plum Trust. 

Chron­ic Pain has no geo­graph­i­cal bound­aries, so this edi­tion of Air­ing Pain is tru­ly a glob­al effort. 

Vina Mohab­ir: It’s not just the pain that we cope with, it’s how it impacts our entire life, how it impacts our rela­tion­ships, our careers, our ener­gy lev­els, our sleep. It impacts everything. 

Otieno Mar­tin Ong’wen: In Africa, and in Kenya, if you look at our edu­ca­tion sys­tem, it’s more or less the old British sys­tem of edu­ca­tion where, ‘What I say is rule of thumb, you need to do this.’ There’s not a lot of empow­er­ment in our patients to self-care, or self-man­age themselves. 

Evans: The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain, IASP, brings togeth­er sci­en­tists, clin­i­cians, health-care providers, and pol­i­cy­mak­ers across the globe to share expe­ri­ence, knowl­edge and best prac­tice in pain man­age­ment. And if you think there’s one miss­ing com­po­nent to that list of pro­fes­sion­als, that is, the mil­lions of us across the globe who live with chron­ic or per­sis­tent pain, under IASP’s umbrel­la is GAPPA, anoth­er acronym I’m afraid, for the Glob­al Alliance of Part­ners for Pain Advocacy. 

Mary Wing in Ade­laide, Aus­tralia, is a peer edu­ca­tor and patient advo­cate who’s lived with neu­ro­path­ic pain for many years. She holds a Post Grad­u­ate Diplo­ma in Chron­ic Con­di­tion Man­age­ment and facil­i­tates chron­ic con­di­tion self-man­age­ment pro­grammes local­ly and online in Amer­i­ca and Cana­da. As well as sit­ting on numer­ous chron­ic pain pol­i­cy pan­els at state and nation­al lev­els, she’s a mem­ber of the internation­al GAPPA taskforce. 

Mary Wing: GAPPA start­ed, in a very small way, in Boston in 2018 at their World Con­gress, and it expand­ed in 2019 to twen­ty-one mem­bers. Some of the peo­ple are what I call, ‘Plain patients,’ like me [laughs]. Some peo­ple are health pro­fes­sion­als who also have pain and some are researchers who also have pain. They’re try­ing to incor­po­rate the patient voice into research and make sure that there’s always a patient voice in every­thing, and hop­ing that the rest of the world fol­lows suit. It makes a huge dif­fer­ence. I think they’ve done some stud­ies and they’ve found out that when they involve patients in the plan­ning of research projects and the con­duct­ing of [them] as well, they find they get a dif­fer­ent result. And inter­est­ing­ly, a lady, a researcher from one of their uni­ver­si­ties here, asked me last year if I’d go in there and help her with some ques­tions that she was organ­is­ing for a research pro­gramme she was doing. When I got in there‑, I don’t know how many you would have filled out, Paul, but I have filled out numer­ous research projects and often you get to one and you just don’t have an answer for it. And you think, ‘Now, if that word­ing had been slight­ly dif­fer­ent, I could answer that.’ So, it was very inter­est­ing. We went through that and she quite hap­pi­ly changed some of the word­ing. I had some­one else com­ing in after me and I’ve no doubt that he did the same. So, that’s before they’ve even got start­ed and, you know, if you’re going to ask ques­tions that are more user-friend­ly, obvi­ous­ly you’re going to get a bet­ter out­come. And that’s just one small part of the research before you real­ly get going. The last thing you want to be is the patient that they have to have. You want to be includ­ed because they can see the val­ue in hav­ing patients includ­ed, not because they have to include you. 

It’s the same with the con­gress, the IASP gives us things to do at the con­fer­ences [such as] pre­sen­ta­tions, [a] lived expe­ri­ence area. They’re also try­ing to make sure that oth­er chap­ters that they have have patient involve­ment in their areas as well so that this is a, sort of, ongo­ing thing and it starts to grow. Instead of being a nov­el­ty for a year or two, they want it to keep going. 

Evans: IASP, the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain. How impor­tant is this inter­na­tion­al link up of peo­ple with pain? 

Wing: I think it’s very impor­tant because we’ve had, sort of, pock­ets of peo­ple who’ve been keen to include patients in activ­i­ties, and to have it on a glob­al lev­el means that so many dif­fer­ent coun­tries know about it and are involved in it. You know, we have a researcher from Queens­land and anoth­er one from New South Wales, so we’ve got three peo­ple from Aus­tralia there, and so there are oth­er coun­tries that have one or two peo­ple as well. I think it’s real­ly good to hear oth­er people’s per­spec­tives on things from dif­fer­ent coun­tries. It’s amaz­ing to be able to dis­cuss things with oth­er peo­ple on that glob­al scale. I’ve found it fas­ci­nat­ing. Mind you, you’d be sur­prised how sim­i­lar the prob­lems are from coun­try to coun­try. But I don’t think we can real­ly begin to com­plain when you start to think about devel­op­ing coun­tries and the major prob­lems that they have access­ing pain care. 

Evans: That’s Mary Wing in Australia. 

The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain has des­ig­nat­ed 2021‑, that’s the year we’re record­ing this programme‑, as its Glob­al Year About Back Pain. Do go to their web­site at https://www.iasp-pain.org/GlobalYear where you’ll find excel­lent arti­cles for man­ag­ing back pain, includ­ing Mary’s arti­cle, Back Pain: Myths ver­sus Reality. 

Accord­ing to the World Health Organ­i­sa­tion, ‘low back pain is the sin­gle biggest cause of years lived with dis­abil­i­ty world­wide,’ occur­ring, ‘in sim­i­lar pro­por­tions in all cul­tures.’ So, in this edi­tion of Air­ing Pain we’ll be cross­ing con­ti­nents and cul­tures to focus on uni­ver­sal­ly accept­ed self-man­age­ment approach­es, not just to back pain, but to all chron­ic pain conditions. 

Otieno Mar­tin Ong’wen is a phys­io­ther­a­pist and edu­ca­tor in Nairo­bi, the cap­i­tal of Kenya, in East Africa. He’s a mem­ber of the Kenya Soci­ety of Phys­io­ther­a­pists and the Phys­io­ther­a­py coun­cil of Kenya as well as the Phys­io­ther­a­py ambas­sador for Kenya in the glob­al Phys­i­cal Ther­a­py project. He’s [a] men­tor to stu­dents and grad­u­ates across Kenya and a clin­i­cal instruc­tor at the Kenya Med­ical Train­ing Col­lege. He’s also a cham­pi­on for the advo­ca­cy of exer­cise as medicine. 

Ong’wen: We pret­ty much have the same mus­cu­loskele­tal prob­lems. You know, low­er back pain is very com­mon in our out-patient and in-patient clin­ics. We have patients with rheuma­toid arthri­tis, osteoarthri­tis, all those mus­cu­loskele­tal con­di­tions that we do know of. Most of the out-patients are usu­al­ly just mus­cu­loskele­tal con­di­tions from foot and ankle pain, knee pain, hip pain, shoul­der pain as well. Phys­io­ther­a­pists are a lot more gen­er­al­ist in Kenya, so in the in-patient hos­pi­tals you get to see stroke patients. They’re in the ICU depart­ment, they’re in the orthopaedic depart­ment, where we’ve had peo­ple with road traf­fic acci­dents. It’s the same prob­lems [as] we [do] have all over the world. 

Evans: Tell me about the peo­ple you teach. 

Ong’wen: I start­ed teach­ing five years ago. It was more or less like a bap­tism of fire. I got select­ed as one of the train­ers who were being trained in a pro­gramme that was run by the Jackson’s Foun­da­tion, so it was almost like a res­i­den­cy pro­gramme in orthopaedic man­u­al ther­a­py where we had dif­fer­ent lec­tur­ers from the US come to Kenya to teach and advance skills and phys­io­ther­a­py skills. I start­ed teach­ing because I was enjoy­ing every aspect of being part of that class, so I thought the best way that I could enhance myself, from a knowl­edge base, was to teach oth­ers. I start­ed teach­ing phys­io­ther­a­pists most­ly, so what­ev­er I learnt in class, what­ev­er I learnt either from a pod­cast or out of my lis­ten­ing to oth­er phys­io­ther­a­pists from dif­fer­ent parts of the world, read­ing research, I thought that would best fill the gap. Because there is a very big gap, in terms of knowl­edge, of evi­dence-based medicine’s lat­est research in Africa. So, we thought, ‘We could do that.’ I teach most­ly phys­io­ther­a­pists but over the years we’ve been teach­ing all sorts of oth­er clin­i­cians; nurs­es, clin­i­cal offi­cers, doc­tors who attend some of the CMEs that we pro­vide in dif­fer­ent rur­al areas. We teach patients as well. When­ev­er we go for the med­ical counts in the rur­al areas, we tend to have an educa­tive ses­sion for the patients, most­ly tar­get­ed towards non-com­mu­ni­ca­ble dis­eases where it’s more or less a pre­ven­ta­tive approach rather than a cura­tive approach. Those are my stu­dents; patients, med­ical pro­fes­sion­als, and the Kenyan pop­u­la­tion in general. 

Evans: Let’s start with the pro­fes­sion­als. You men­tioned there’s a gap, or there was a gap, in knowledge. 

Ong’wen: If you look at the mod­el of train­ing that we [had] for phys­io­ther­a­pists, it was pret­ty much 100 years old and the cur­ricu­lum kind of stayed that way. It was more or less very heav­i­ly tar­get­ed towards the bio-med­ical aspect rather than the bio-social aspect, so a lot of the infor­ma­tion in rela­tion to psy­chol­o­gy, social aspects and social deter­mi­nants of pain, as well as oth­er mus­cu­loskele­tal con­di­tions, were miss­ing from our train­ing. For a long time, I felt that we were most­ly tech­ni­cians because you got a refer­ral from a doc­tor and you were told to do TENS, to pro­vide a heat pack, to pro­vide an ultra­sound. [Those were the only things] phys­io­ther­a­pists used to do. The ele­ment of get­ting to talk to your patient to under­stand what brings them into the clin­ic, or the ele­ment of hav­ing a clin­i­cal rea­son­ing base and doing a prop­er assess­ment on your patient was not there. [You] were hand­ed over a sheet by the doc­tor and that sheet had instruc­tions. So, the patient would hand you the sheet and say, ‘The doc­tor told me I have osteoarthri­tis and these are the things that you need to do for me to get bet­ter.’ A lot of the phys­io­ther­a­pists who fin­ished school did not both­er to go back to school any­more. None of them were par­tic­i­pat­ing real­ly in aspects of con­tin­u­ous med­ical edu­ca­tion. So, there was a gap. And there’s still a very big gap in and around East Africa that we are try­ing to fill by either pro­vid­ing online CMEs‑, because right now, the world has kind of, you know, moved from in-con­tact ses­sions to an online plat­form where I feel there’s access to a lot more peo­ple, espe­cial­ly in the urban areas. It’s a lit­tle bit of a dif­fer­ent sto­ry in the rur­al areas. 

Evans: You talk about that patient-doc­tor rela­tion­ship, it’s a doctor’s job to pre­scribe how you get bet­ter. How do they take the busi­ness of giv­ing a patient his or her own voice? 

Ong’wen: A lot of the time, in Africa, and in Kenya, doc­tors like to take a lot more of an instruc­tor role, or a teacher role. If you look at our edu­ca­tion sys­tem, it’s more or less the old British sys­tem where, ‘What I say is rule of thumb. You need to do this.’ There’s not a lot of empow­er­ment in our patients to self-care or self-man­age them­selves. A lot of times I’ve had patients who’ve had rheuma­toid arthri­tis, and rheuma­toid arthri­tis, for exam­ple, is a con­di­tion that patients real­ly need to know how to self-man­age. But you have a patient who is diag­nosed with rheuma­toid arthri­tis and they’re very depen­dent on their doc­tor. They come to you and they don’t have any edu­ca­tion what­so­ev­er, [don’t know] what rheuma­toid arthri­tis real­ly is and how to best man­age it. Most of the edu­cat­ed patients tend to nav­i­gate their own way in terms of under­stand­ing what the prob­lem is. But I can tell you that a lot of times, since phys­io­ther­a­pists spend a good amount of time with patients, patients get a lot more edu­ca­tion from phys­io­ther­a­pists and nurs­es because that is where they spend a lot of their time togeth­er. So, if you get a good phys­io­ther­a­pist who’s real­ly keen on look­ing at the evi­dence, who’s real­ly keen on find­ing out infor­ma­tion about, you know, how cer­tain dis­eases are man­aged, then you get a lot of bet­ter out­comes as a patient com­pared to just any oth­er phys­io­ther­a­pist who’s fin­ished school, they show up at work and that’s it. There’s not a lot of infor­ma­tion out there that is pro­vid­ed to patients, that can help them grow, or that can help them self-nav­i­gate or find out [how] to help them­selves. So there is a lot of mis­in­for­ma­tion, you know, because they want to go onto Google, for exam­ple. You get infor­ma­tion but you don’t get the best answers out of Google. 

Evans: Otieno Mar­tin Ong’wen from Nairo­bi in Kenya. So, from Africa to Canada. 

Vina Mohab­ir works in patient engage­ment and pain research at The Hos­pi­tal for Sick Chil­dren in Toron­to, Cana­da. She’s lived with chron­ic pain since her teens and has been through two pain man­age­ment pro­grammes, one for adults and a pae­di­atric or ‘sick kids’ one when she was in her teens. 

Mohab­ir: The Sick Kids chron­ic pain clin­ic real­ly focused on using the ‘Three P’ method to help with pain man­age­ment. So, phys­i­cal strate­gies, phar­ma­ceu­ti­cal strate­gies, and psy­cho­log­i­cal strate­gies. The phar­ma­ceu­ti­cal strate­gies allowed me to have enough con­trol over my pain that I could pur­sue the psy­cho­log­i­cal and the phys­i­cal strate­gies. The psy­cho­log­i­cal shift was prob­a­bly the biggest change. Com­ing to the real­i­sa­tion that I was fif­teen and I had no idea what the rest of my life would look like with pain, but com­ing to the real­i­sa­tion I could make an impact on my pain, and I didn’t have to let it take away who I am and who I want­ed to be, com­plete­ly changed things for me. Real­is­ing that chron­ic pain is its own con­di­tion and that, although a lot of times I heard from doc­tors, ‘We can’t see any­thing phys­i­cal­ly wrong with you,’ know­ing that there were neu­ro­log­i­cal changes in my brain and feel­ing val­i­dat­ed from that almost, that there were things hap­pen­ing, it was def­i­nite­ly this big shift in my mind­set about how pain could play out in the rest of my life. 

Orig­i­nal­ly, when I was first referred, I was prob­a­bly in one of the deep­est depres­sions of my life because I real­ly thought I was insane; I real­ly thought that there was no log­i­cal expla­na­tion for what I was feel­ing and maybe some­thing in my brain went wrong and I was imag­in­ing the whole thing. You know, you ques­tion every­thing around you. So, all of a sud­den, being able to trust myself again was so pow­er­ful. Instead of look­ing at life as, like, a five-year plan, or a ten-year plan, or what­ev­er that may be, the way you think before you have an ill­ness or you have pain, learn­ing to shift my think­ing into what today looks like and sur­viv­ing the day, the next day, and the day after that, recog­nis­ing small­er changes while, you know, my pain was con­stant, it wasn’t stag­nant. It was dynam­ic, it was chang­ing day to day, and recog­nis­ing that expe­ri­ence… I had a physio tell me‑, and she was bril­liant in my recov­ery process‑, she told me, ‘You know Vina, part of chang­ing your mind­set is recog­nis­ing that yes, your pain goes up, but it also comes down. You have the pow­er to help calm down your body enough to go back down to your base­line level.’ 

Evans: So how do you do that? 

Mohab­ir: That’s a great ques­tion. So, this was in 2010. I think mind­ful­ness and med­i­ta­tion was mak­ing its way into health­care. But it wasn’t, you know, part of that tra­di­tion­al CBT process that you would nor­mal­ly have. I began, actu­al­ly, with hyp­nother­a­py, fun­ni­ly enough. So, I had my psy­chi­a­trist, who had a won­der­ful accent like you, kind of guide me through [these, like] get­ting down into a state of relax­ation and being able to relax oth­er parts of my body, and almost, like, find a vaca­tion spot in my body that didn’t hurt as much as the rest. Hav­ing a men­tal break by just focus­ing on that spot. So, I began with that hyp­nother­a­py ele­ment. Then we shift­ed more into med­i­ta­tion and mind­ful­ness, and mind­ful­ness CBT, and using things like accep­tance com­mit­ment ther­a­py as well, and that’s real­ly where I found peace again. You’re so uncom­fort­able in your body, like, all the time. It’s so hard for peo­ple to under­stand what it’s like, I mean, you real­ly feel like you want to crawl out of your skin at every point and you’d rather be any­where else. But it taught me that I can exist in my body and have it be a com­fort­able expe­ri­ence. I can be in pain and I can also be com­fort­able, and I can also find joy and relax­ation and all these oth­er things. Being aware of that and being aware of these, like, chang­ing bod­i­ly sen­sa­tions, gave me hope and it helped me stop exist­ing in an all-or-noth­ing plain. It real­ly helped me exist in my new real­i­ty which was that it wasn’t pain or no pain, but it was real­ly find­ing the tech­niques that gave me a lev­el of pow­er over what I was experiencing. 

Evans: Help­ing patients get the ‘pow­er’ Vina talks about, to have a role in the man­age­ment, the self-man­age­ment of their pain, is not always an easy con­cept for the health­care pro­fes­sion­als to get over to their patients. 

Otieno Mar­tin Ong’wen: 

Ong’wen: I tend to try and engage my patients in a man­ner that makes them feel and own this. I tell them, ‘Con­sid­er me as a teacher who’s help­ing you through your jour­ney, not as an instruc­tor. You only have a lim­it­ed amount of time with me. But what hap­pens when I am not around?’ So, there is usually‑, there’s a book I read when I was, you know, just new in the med­ical field, of where there is no doc­tor. This is a con­ver­sa­tion that I usu­al­ly tend to bring to the table a lot with patients because I’ve had instances where I ask my patients, ‘Can I do a phys­i­cal exam­i­na­tion on you?’ Or, ‘Can I [even] take a prop­er his­to­ry from you?’ And the patient tells me, ‘How do you not know? The doc­tor already gave you a pre­scrip­tion. You should know.’ You know, you’re con­sid­ered a magi­cian or a god of sorts, like, ‘You already know from see­ing me. You should already know what to do to me [for me] to get bet­ter.’ But of course, I try to bring in con­ver­sa­tions of, you know, the right foods to eat, sim­ple exer­cis­es and mea­sures to help them. So, it’s usu­al­ly dif­fi­cult, espe­cial­ly with patients who don’t have edu­ca­tion, like high­er edu­ca­tion lev­els. It’s dif­fi­cult, but since I spend a lot more time with them, it’s a mat­ter of get­ting them to trust me enough, but also get­ting them to trust them­selves enough with their care to the extent that they change. And you know, chang­ing belief sys­tems is one of the most dif­fi­cult process­es. As a clin­i­cian myself, chang­ing my own beliefs is not easy, so try­ing to real­ly put empha­sis on a self-man­age­ment approach on patients is usu­al­ly not the eas­i­est way to approach things. But, it’s a col­lab­o­ra­tion of sorts. I try to show them, I ask them, you know, ‘Can you read?’ I try to trans­late, depend­ing on the lan­guages that they speak. A lot of the time I tend to involve the fam­i­ly as well. So, you might get that there’s a gen­er­a­tion of Kenyans who did not get prop­er edu­ca­tion, but when­ev­er they come to the clin­ic I ask them, ‘Do you have chil­dren?’ and if the chil­dren are edu­cat­ed, I edu­cate them to edu­cate the patient in a lan­guage that they can understand. 

Evans: Chil­dren teach­ing par­ents is an inter­est­ing turn­around but not con­fined to Africa. Vina Mohab­ir, in Toron­to, again. 

Mohab­ir: When I used to go the doc­tors my mom would come with me to an appoint­ment. She’d say, ‘Show what the pain is doing to you. Don’t laugh. Don’t brush it off.’ It was a big issue because I learnt how to cope with my pain so well that I would go to the doctor’s, or I would see oth­er health­care pro­fes­sion­als, and they’d be, like, ‘Oh she’s fine, she’s cop­ing well.’ And then I’d go home and I’d be cry­ing or, you know, I’d be in a lot of pain, and my mum was, like, ‘Now you’re not going to get help.’ But it shouldn’t mat­ter that I can laugh and I can smile, and I can have con­sid­er­a­tion of oth­er peo­ple. I can have man­ners and say, ‘How are you?’ and things like that. Pain doesn’t take away those things. It’s almost this idea of what a pain patient has to be, and I stopped doing that because I want them to know that yes, I can cope with my pain. But I can also live with a tremen­dous amount of pain and just because I’m cop­ing well doesn’t mean that treat­ment should stop, or that I don’t deserve ade­quate med­ical care, or that I don’t deserve a refer­ral to see some­body to help low­er my pain. Just because I can cope with what I have doesn’t mean I should, and it doesn’t mean that I have to stop being myself either. 

Evans: The vis­i­bil­i­ty of pain‑, do I look like I’m in the pain I say I’m in? Is it OK to smile, laugh even, what sort of mes­sage does that send? Many peo­ple liv­ing with pain will have expe­ri­enced that dilem­ma, I cer­tain­ly have. It’s also the case that when psy­cho­log­i­cal ther­a­py is rec­om­mend­ed for what is obvi­ous­ly, well, obvi­ous­ly to you any­way, a phys­i­cal prob­lem, wires can get crossed. 

Mary Wing. 

Wing: I’d been told two things. One, that I would be bet­ter in twelve months, and then I was told that it was all my fault when I wasn’t. So, by the time it got to 2006, I was real­ly in a dark place because every soli­tary per­son in the world that I knew was work­ing, except for me, so I didn’t have any­one to catch up for a cof­fee or a lunch with, or to talk to on the phone. So, by the end of win­ter I was pret­ty down. But then in 2007 all these dif­fer­ent things hap­pened to me. I had a doc­tor who I see, who has noth­ing to do with pain man­age­ment, who had been try­ing to see if he could come up with a solu­tion for me. When he couldn’t, he said to me, ‘How would you feel about see­ing a pain psy­chol­o­gist?’ I said, ‘Well, that’s okay with me, but why?’ And he said, ‘Because you’re so fright­ened.’ And I said, ‘Well, yes I am, actu­al­ly.’ She was an amaz­ing help. 

I also had my eye on a post­grad­u­ate uni­ver­si­ty course on chron­ic con­di­tion man­age­ment that I want­ed to study. I knew that I had to do some­thing to dis­tract myself because I was sit­ting there just wrapped up in this pain day in and day out, and I thought, ‘I like to study’, so I thought if I could study something‑, it was dis­tance [edu­ca­tion] so it was online, so there­fore I wouldn’t have to wor­ry about, sort of, traips­ing around mas­sive uni­ver­si­ty cam­pus­es. She encour­aged me to apply for that, because I’d been too gut­less to do that up until then, and once I applied, I got in and that kept me busy for a good two and a half years. That was real­ly fan­tas­tic. I also attend­ed a six-week self-man­age­ment course for chron­ic con­di­tions which was run, at the time, by a local not-for-prof­it here in Ade­laide. Those three things togeth­er that year not only kept me very busy, but I noticed that my pain lev­els were much bet­ter at the end of it. I learned how to pace myself, I learned how to set goals, I learned how to do all those self-man­age­ment tech­niques. Plus, I had the dis­trac­tion of [uni­ver­si­ty] and the psy­chol­o­gist to talk to if I need­ed her. 

Evans: Tell me how the psy­chol­o­gist helped you. 

Wing: She helped me to realise that pain doesn’t nec­es­sar­i­ly equal harm. She taught me to relax. That was the first thing that she taught me to do. She taught me self-hyp­no­sis and gave me some record­ings to lis­ten to. She sug­gest­ed I do that sev­er­al times a day and I did, and it helped. When I got up in the morn­ing, my pain lev­els would be a rea­son­able lev­el. Then it would just, sort of, go up and up and up and by the evening I was just a mess. But, when I start­ed to do all these oth­er things, and in par­tic­u­lar the relax­ation, I found that the lev­els were going up and down more in the day­time. So, when it got to the evenings, it was actu­al­ly much more pleas­ant for me and obvi­ous­ly then much eas­i­er to go to bed and get to sleep. 

Evans: Mary Wing.  

Now, how psy­cho­log­i­cal ther­a­py for chron­ic pain is broached depends very much on the patient’s culture. 

Otieno Mar­tin Ong’wen in Kenya. 

Ong’wen: It’s actu­al­ly con­sid­ered a taboo to have men­tal health prob­lems. When I was under­go­ing my train­ing and we were talk­ing about men­tal health screen­ing tools, one of the ques­tions on the men­tal health screen­ing tool, which was the PHQ‑9, was, ‘Are you depressed?’ That was the first ques­tion, and the sec­ond ques­tion was, ‘Are there things in life that you used to do that you don’t fan­cy doing any­more?’ The first ques­tion, when I tried it out in the clin­ic the first time[s], I got into so many prob­lems with most of my patients because they were, like, ‘What makes you think, or what makes you decide that I am depressed?’ Then I was, like, ‘No, no, this is not me say­ing that you’re depressed. This is me try­ing to find out a lit­tle bit more about some of the psy­chol­o­gy aspects of con­trib­u­tors [as] to why you’re in pain.’ So, I need­ed to fig­ure out how best to ask that ques­tion because of the tra­di­tion­al aspect that you’re not sup­posed to be depressed, you’re sup­posed to be a man, you’re sup­posed to be strong, be a war­rior. It’s not been an easy jour­ney. It’s been a lot of learn­ing on the way. And you know, some­times it’s dif­fi­cult to incor­po­rate research that is con­sid­ered evi­dence-based prac­tice and con­sid­ered the guide­lines on how to man­age cer­tain aspects. Yet, the research did not include some of the cul­tur­al aspects of African com­mu­ni­ties. How do you go about some of those prob­lems in terms of address­ing them? It’s been a jour­ney of real­ly try­ing to pick what actu­al­ly works, kind of like jug­gling in between try­ing to make my patients under­stand these approach­es of ther­a­py that could ben­e­fit them. 

Evans: It’s a very dif­fi­cult bridge to cross, isn’t it? Some­body might come in with back pain and you explain the role of the mind, the psy­chol­o­gy, in pain. Because many patients, in the UK and prob­a­bly every­where else in the world, would come away from that con­ver­sa­tion say­ing, ‘The doc­tor thinks I am mad. I am not. I have a bad back.’ 

Ong’wen: Yes, I would say me try­ing to high­light some of the social con­trib­u­tors to some of the symp­toms that we feel has been a dif­fi­cult jour­ney for me. But the beau­ty of it is the patients, as they move on, and as they jour­ney on, they tend to realise or pick up some of those deter­mi­nants or con­trib­u­tors to their pain, or con­trib­u­tors to the symp­toms of their pain. So, it’s usu­al­ly a jour­ney of patients, and [then] they come to that self-real­i­sa­tion and self-actu­al­i­sa­tion that there are cer­tain things in the envi­ron­ment that are actu­al­ly con­tribut­ing to the symp­toms that they have. And of course, I’ve run into so many prob­lems with patients about patients telling oth­er patients, or their doc­tors, that, ‘My phys­io­ther­a­pist said I was crazy.’ Because if you look at how a lot of the pain sci­ence was taught, it was, you know, ‘Pain is in the brain.’ You try going to tell an African that pain is in their brain. It’ll not go well. [laughs] 

Evans: Well, the oth­er thing is that you talk about exer­cise as med­i­cine. Well, med­i­cine is tablets. 

Ong’wen: Yes, I try to real­ly approach that top­ic in so many dif­fer­ent ways. We do know the ben­e­fits of exer­cise and phys­i­cal activ­i­ty. I try even not to talk about exer­cise. I try to address it as phys­i­cal activ­i­ty and move­ment, so the patients get sur­prised that actu­al­ly some sim­ple move­ments can be solu­tions to [their] problem[s]. I usu­al­ly tend to lean towards the African cul­ture of move­ment. You know, Africans have been very keen at mov­ing from one point to anoth­er, from the nomadic ways, us liv­ing in envi­ron­ments where we need­ed to walk from one point to anoth­er because there was no tech­nol­o­gy for us to have the lux­u­ry of sit­ting on a motor­bike or sit­ting [in] a car. But if you look at tech­nol­o­gy, [and] every­day tech­nol­o­gy one way or anoth­er is designed to make work eas­i­er for us, but it also takes away a lot of the move­ment aspects of being human, right? 

I try to encour­age my patients to, you know, think about grand­ma. They use [a lot of the] grand­par­ents as exam­ples a lot in a clin­i­cal set-up. So I say, you know, ‘Grand­ma nev­er need­ed to go to the hos­pi­tal, and I guess these are the rea­sons why. First of all, she was very fit. She still cooks while squat­ting.’ You know, we have, like, a three stone kind of thing where you have one stone at the end, anoth­er stone, and a third stone, and you have wood put in between. The only way for you‑, you can’t cook while stand­ing, so you need to get into a squat­ting posi­tion to cook, or a kneel­ing posi­tion. I use exam­ples of such move­ments to encour­age that, because some­times I ask my patient, ‘Is it pos­si­ble for you to get in and out of a squat?’ Most of them realise that this is a move­ment [they] haven’t done in so many years, for exam­ple. Or it’s a move­ment that [they] only do when [they’re] in the rur­al areas because it’s a pit latrine. You don’t have the lux­u­ry of hav­ing a toi­let but we’ve since devel­oped to the extent that you find that in the rur­al areas. But also, since we are reli­gious, I use a lot of reli­gious exam­ples. So, pick Eli­jah for exam­ple. Eli­jah used to walk from one point to the oth­er. Moses had to go up Mount Sinai, which is some sort of seri­ous phys­i­cal activ­i­ty and also, he need­ed to car­ry the stones back down. So, some sim­ple exam­ples from a reli­gious per­spec­tive. And dance. Africans like to dance, from a tra­di­tion­al per­spec­tive. Danc­ing at wed­dings, danc­ing at mar­riages, danc­ing when [we] have cer­tain cer­e­monies. I don’t tend to use the gym as an area where you are going to get all of your exer­cise as med­i­cine. I use sim­ple move­ments that we tend to do on a day-to-day basis. Once they get com­fort­able mov­ing, I can start the dis­cus­sion [on], ‘What do you feel about tran­si­tion­ing to a gym set-up? What do you feel about mov­ing, or advanc­ing or increas­ing, your lev­els of phys­i­cal activ­i­ty? But it’s dif­fi­cult to con­vince patients, espe­cial­ly those who’ve nev­er been to a physio, that move­ment can actu­al­ly help you feel better. 

Evans: I’m just look­ing at some of the con­fer­ences you’ve spo­ken to around the world. What do peo­ple out­side Africa‑, in Amer­i­ca, in the UK, in Europe‑, what can they learn from you in East Africa? 

Ong’wen: Africans are very resilient peo­ple, and the pain cul­ture in Africa is a lit­tle bit dif­fer­ent, to the extent that some­times it can be dan­ger­ous. You need to be strong no mat­ter what. It’s a resilience cul­ture, which is great. But when it so hap­pens that you have a med­ical con­di­tion that is seri­ous and needs imme­di­ate atten­tion, for exam­ple, or needs to be looked into, it becomes prob­lem­at­ic. When­ev­er we go to the rur­al areas, we ask patients, ‘Do you get hip pain?’ [They reply], ‘Why are you ask­ing me that? It’s nor­mal to have hip pain. It’s not a both­er for me. Actu­al­ly, it wasn’t even a both­er for me until you asked about it.’ They want to come to the clin­ic when they can­not move any­more or when there’s actu­al­ly too much pain. So, on a scale of zero to ten, it’s prob­a­bly a twen­ty [laughs]. There’s the ele­men­tal resilience, but to what extent? What we can learn is‑, and I don’t know whether this is a lack of access to imme­di­ate health­care provision‑, but in gen­er­al, we tend to be very resilient in our jour­neys, or in our pain jour­neys. The beau­ty about it is, of course, our patients are going to move regard­less because they don’t  have a choice. In some ways you find that that move­ment in itself actu­al­ly heals them of the pains that they had. This is not doc­u­ment­ed. There’s no research in and around that to say that because of this, then that. But I want to believe that the ele­ments of resilience, and the ele­ments of keep­ing [mov­ing], are ben­e­fi­cial, but they can also be detri­men­tal at the same time because maybe what we’ve tran­si­tioned [to] now is to try and teach patients that this looks like a red flag. 

There are cer­tain pains that are actu­al­ly not nor­mal pains. ‘It’s not that you’re bewitched, it’s not that you have some cul­tur­al con­no­ta­tion to it, but it sounds like this is can­cer­ous pain,’ for exam­ple. So, we tend to teach our patients red flags so that they under­stand when to come to hos­pi­tal, espe­cial­ly for the men. If you look at the pop­u­la­tion of men in Kenya who have some sort of can­cer, they die ear­ly as com­pared to the females, because, first of all, they nev­er real­ly talk about it. Maybe it’s the cul­tur­al thing, to the extent that when you say you’re in pain you’re told, ‘Take it as a man. Brave it on. War­rior on.’ It’s too painful, and the man in you does not want to both­er the rest of the fam­i­ly with a pain that [makes you look weak]. If that is the case, where do they go? I’ve tried on so many lev­els to encour­age men to come out or speak about their pains, because maybe you get­ting to speak to some­body else or you get­ting to inter­act with some­body else who has the same prob­lem makes that prob­lem less of a bur­den than think­ing that you’re in this alone. So, I like to go to patient gath­er­ings and just sit there and lis­ten to patients hav­ing [a] conversation. 

There’s a group of can­cer patients who are female. When­ev­er they meet, they’re talk­ing, they’re reach­ing out to one anoth­er, they’re encour­ag­ing one anoth­er. They’re fig­ur­ing out things, ‘Oh, how did you grow your hair? How did that hap­pen? Your hair looks nice.’ There’s that inter­ac­tion that makes you feel that [you’re] not in this alone. It makes you feel that [you’re] strong and we’re strong and there’s nur­ture, and there’s some­body I can reach out to. So, pick a group of men and, you know, tell them, ‘Let’s talk about prostate can­cer.’ You can have up to ten min­utes of silence before some­body says some­thing. It’s a cul­ture that‑, I don’t know how long it will take to change it. I am also learn­ing how to open up, to my friends for exam­ple, or even to my patients. Or even hav­ing open con­ver­sa­tions and feel­ing vul­ner­a­ble, or feel­ing weak, as a man myself.  So I guess it’s going to be a jour­ney that we get to under­stand with a lot more edu­ca­tion, but also just under­stand­ing, or help­ing the men under­stand that we can also share our prob­lems, and by shar­ing our prob­lems it becomes eas­i­er, first of all, to real­ly nav­i­gate, but it also becomes eas­i­er to under­stand that we are not in this alone. 

Evans: Otieno Mar­tin Ong’wen. 

I’ll just need to remind you that whilst we in Pain Con­cern believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judge­ments avail­able, you should always con­sult your health pro­fes­sion­als on any mat­ter relat­ing to your health and well­be­ing. They are the only peo­ple who know you and your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf. 

Do check out Pain Concern’s brand new shiny web­site at www.painconcern.org.uk where you can down­load all edi­tions of Air­ing Pain and find a wealth of sup­port and infor­ma­tion mate­r­i­al about liv­ing with and man­ag­ing chron­ic pain. 

The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain and Glob­al Alliance of Part­ners for Pain Advo­ca­cy Task­force has a real­ly good web­site that brings the lat­est sci­en­tif­ic devel­op­ments into sim­ple lan­guage for the under­stand­ing of patients and the wider pub­lic at https://relief.news, very sim­ple. And to remind you about the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain Glob­al Year about Back­pain, it’s at https://www.iasp-pain.org/GlobalYear 

Last words in this edi­tion of Air­ing Pain go to Vina Mohab­ir in Canada. 

Mohab­ir: There’s not one part of my life that is untouched by my pain. So, I would encour­age any­body who doesn’t have pain, or doesn’t cope with pain, to just talk to the peo­ple they know who do. You just have to say, ‘How can I be a bet­ter sup­port to you? What would make today eas­i­er for you?’ 


Con­trib­u­tors: 

  • Mary Wing, Pain Patient Advo­cate, Glob­al Alliance of Part­ners for Pain Advo­ca­cy (GAPPA), Australia. 
  • Otieno Mar­tin Ong’wen, Orthopaedic Man­u­al Ther­a­pist, Move­ment Dys­func­tion Spe­cial­ist, Phys­io­ther­a­pist, Afyafrica Orthopaedic Ser­vices, Nairobi. 
  • Vina Mohab­ir, Clin­i­cal Research Project Assis­tant, The Hos­pi­tal for Sick Chil­dren, Toronto. 

More infor­ma­tion: 


With thanks to: 

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