S2E18 Coffee Break with community member Trishna Bharadia

Geoff Allix  00:02 

Welcome to Living well with MS. Coffee Break. I’m your host, Geoff Allix, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. Since our community forms the beating heart of Overcoming MS. We are commencing this special series called Coffee Break, which features short interviews with members of the OMS community, talking about their personal journeys, adopting and staying on the OMS seven step recovery program, the challenges they encountered, and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these brief chats between our regular episodes. And as always, your comments and suggestions are welcome by emailing [email protected]. That’s [email protected]. And don’t forget, if you enjoy these and other Living Well with MS podcast episodes, please leave a review on Apple podcasts or your favorite podcast listening platform. On this episode of the Living well with MS podcast, I’d like to welcome Trishna Bharadia, who amongst other things acts as a patient advocate, writer, speaker, advisor and ambassador for the MS Society in the UK. So welcome, Trishna. 

  

Trishna Bharadia  01:20 

Hi. Lovely to be here. 

  

Geoff Allix  01:22 

I’ve just asked you how to pronounce your name. And then I just called you, Tricia. So, i apologise and welcome, Trishna. 

  

Trishna Bharadia  01:28 

Thank you. To be fair, I hadn’t actually noticed. 

  

Geoff Allix  01:34 

So, to start with, could you tell us a little bit about yourself and your personal experience with MS. 

  

Trishna Bharadia  01:39 

  Yeah, sure. So I was diagnosed with MS in 2008. So I’ve been diagnosed for 12 years now, I was diagnosed at the age of 28. I’m now 40 heading on for 41. My diagnosis took a couple of years, although I wasn’t conscious that it was taking a couple of years, what we think was my first relapse, I lost the strength in both my hands. But at the time, it was put down to repetitive strain injury. And I went to physio, and in time everything got better. But then about three or four years later, I then completely lost the feeling down one side of my body. And that’s when, what I call the path to my MS diagnosis really started. And since then, some of my symptoms have been or are, like I said, I noticed loss of feeling down one side of my body. I’ve had sensory issues, bladder issues, pain, muscle spasms, and fatigue as well. So a whole spectrum. It’s been, a difficult journey. To begin with, when I was diagnosed, I was literally handed this life changing diagnosis, and just sent on my way with no information, no guidance, no support, no advice as to where to go for reliable information and where to find the services that I might need to access. And that’s what put me on the journey into advocacy really, because I sort of felt that, well, if I’m having this experience, then other people must be having the same experience and this shouldn’t be happening. And the first year following my diagnosis. It was a really steep learning curve for myself and my family. Because we knew very little about MS. My cousin had been diagnosed the year before. So we had sort of dipped our toes into the MS world so to speak. But aside from the fact that, my former next door neighbour, and we’re talking about back in the 80s now. She had MS. But it was very severe. It was back in the 1980s, there was absolutely no medications available. And she was housebound. Those were our only certain experiences of what MS was. And within the Asian community, so I’m Asian. Again, MS is not very well known at all. And so we had to do a lot of learning in a short space of time. And I really felt that I wanted to help other people through that experience. Because, you know, sometimes I just thought to myself, I just I wish I knew where to go. I wish I had people to talk to, I wish I had people to share these experiences with and then just find out how other people were coping.  

  

Geoff Allix  01:41 

I think that’s quite common in the UK, I’m in the UK as well. It is different in some areas of the world. So I know, America, is a bit of an odd one, because you can either have amazing help and resources or none, depending on how much money you have, I think,  and where you are as well. I mean, there’s certainly some MS specialists that are brilliant over there. But yeah, it depends where you are and how much money you’ve got. And yeah, I was the same in the UK. But I mean, my father had MS. So I was kind of quite familiar with it. And it was not unexpected when I got a diagnosis. But yeah, there was very little information. It really was me doing the research, I think, and if you’re not that way inclined, and you would kind of feel left on your own, I think. 

  

Trishna Bharadia  05:44 

Sure, I mean, it was to the extent where the neurologist who diagnosed me didn’t even mention the MS Society to me or the MS Trust. 

 
 Geoff Allix  05:53 

No, I don’t think, no, they didn’t to me either. They did say that it’s not as bad, when you’re saying in the ’80s. And it’s a similar sort of thing, growing up with a father with MS. He did say straight away. It’s not like that now. There were no treatments then, there was very little knowledge, they were just sent off. I mean, literally things which are almost the first thing you’re told, like not smoking, my father smoked until he died, and was never told not to, as far as I know. And they just didn’t know anything. So they were just don’t do any exercise. Don’t do any exercise, carrying on smoking, that’s fine. So all the things that they now have some knowledge about. Yeah, they just didn’t. So that was the fortunate thing, actually. He said, well, it is a bit different now. So what does your work as a health advocate and patient engagement consultant involve? 

 
 

Trishna Bharadia  06:46 

So it’s, well, it’s a mixture of things really. Firstly, I work with all, they’re called stakeholders, so stakeholders in the healthcare journey. So for example, with the patient groups and patients associations and charities, with clinicians, healthcare systems, like the NHS, also with industry and industry bodies. And it’s about, I always say, it’s about getting the patient voice heard throughout the healthcare journey, from start to finish, in a more effective and stronger way, because traditionally, it doesn’t matter which part of the healthcare journey you’re looking at, traditionally, the patient has always kind of come bottom of the pile, which is silly, because at the end of the day, it’s about us as patients. And so for example, with the healthcare system, traditionally, we’ve had a very paternalistic healthcare system, whereby the doctor is the one who is medically, uh, you know, he has a medical degree, he’s been scientifically educated, etc, etc, he knows best and he told you what to do, and you just do it. That’s the traditional model. However, we’re now moving more towards shared decision making. But in order to have effective shared decision making, you need to have an informed patient community, because they need to be comfortable enough to be taking some responsibility for those decisions. And so we need to essentially get the patient voice heard louder, stronger and more effectively. Same within industry, traditionally, the pharmaceutical industry, for example, they’ve not talked to patients. And again, it seems a bit silly, considering we’re the ones who will be potentially taking the treatments. So the way that clinical trials are designed, are they patient friendly? Does it make it easy for patients to take part in research, if they’d like to? All of these things are things that have become very important to me, because I want to make the healthcare system more relevant, and easier to access and more targeted towards the patient. So my work consists of various different things. I speak at events and conferences, I do a lot of writing of articles and opinion pieces and blogs. I co-create content information and services. I do a lot of reviewing of content as well. So for example, if a pharmaceutical company wants to produce some patient facing information, then we need to make sure the tone is right, that the language they’re using is right, that the content is relevant. And so I do a lot of reviewing of that type of information. And, it’s something people have asked me, how have I got to the point where I’ve got to where it just all kind of happened organically, I started volunteering for the MS charities. And it just kind of grew exponentially from there. 

 
 Geoff Allix  10:20 

And so ultimately, it’s become your career, from being something you did as a volunteer. 

  

Trishna Bharadia  10:27 

It’s not a career, I actually have a full time, normal job. I do all the advocacy in my “spare time,” although the amount of hours that I put in, it’s like, I’m basically doing two jobs, in terms of the number of hours. And so I actually work as a translator and analyst for a business intelligence company, which is your regular, you know, it’s a regular full time job. A lot of people think that the advocacy work is what I do full time, just because they see obviously, the amount of effort and the number of hours I put in, but it’s very much because I believe in what I’m doing that, you know, I don’t mind putting all of these hours in, you know, it’s a lot of evenings, it’s a lot of weekends, it’s a lot of, you know, even today, for example, doing this podcast, I’ve done a full day of work. And now I’m recording this podcast, and after this podcast, I’m going to be presenting in a webinar. And so, it does often mean that I’m putting in long hours. However, I think when you really believe in something, I think you have to put in that effort to make the change, because talking about things doesn’t. Yes, you can go towards making a change, but actually it’s action, you need to be taking action, and I’m very much a doer. So I’ll do what it takes. 

 
 Geoff Allix  12:08 

Do you feel that there’s an inclusivity gap in available health services for people with MS? 

 
 Trishna Bharadia  12:15 

I think there’s generally a lot, there’s gaps in terms of healthcare, generally across the board. If you’re health literate, then it makes it easier to navigate the healthcare system, you can ask the right questions, you can advocate for yourself. If you’re not health literate, if you’re from you know, backgrounds where you don’t necessarily have a high level of education. And so you may not understand for example, the information being given to you. If English isn’t your first language. And also there’s cultural nuances as well. So being from the Asian community, I can say that within the Asian community, a lot of chronic illness, long term conditions and also disability is swept under the carpet, people want to hide it, they don’t want to talk about it. You know, I literally I just had a coffee and having recent conversations with somebody who is from an Asian background, and is newly diagnosed, and her parents are denying the fact that she even has MS. They think it’s all in her head. And there’s some you know, nuances there in terms of you know, there is worry, there’s a lack of knowledge, but there’s also worry about what the impact it might have on for example, marriage prospects, ability to bring up a family, ability to have a job, etc, etc. Which means that accessing the right services and whether those services even exist, sometimes, does mean there is a disparity. 

  

Geoff Allix  14:05 

Without having to search them out. It adds a barrier. 

  

Trishna Bharadia  14:09 

Yeah, exactly. It’s one of the reasons actually why Asian MS was set up, so Asian MS is a support group that works under the umbrella of the UK’s MS Society. And it was set up by a couple of people, I don’t know how many years ago, who basically discovered each other. They were both Asians. And both of them thought that they were, basically, the only Asians in the UK who had MS. Because, you know, MS isn’t something that has been prevalent within the Asian community, it’s becoming more prevalent, because those of us who’ve been born and brought up in this country have, essentially. I mean, we’ve been told we have the same risk as anybody else. And these two people set up Asian MS. Because they thought well, there are these cultural nuances, which are proving to be problematic. How do we make a change from within? And how do we make sure that people know that there’s support out there, that they can access, where people understand those cultural nuances. Because before that there wasn’t anything specific and targeted where those cultural differences were understood. And you know, people couldn’t get what we call culturally sensitive support. And so, even when the support and services are out there if people don’t know about them, like I said, when I was diagnosed, my neurologist didn’t mention the MS Society, I had no idea that the MS Society existed. So if people don’t know, how are they going to access it? They just don’t. And that’s a shame, because there are some really fabulous services and support out there. 

 
 Geoff Allix  16:03 

And what issues do you think need to be overcome to broaden the sense of MS community and support for people with MS? 

 
 Trishna Bharadia  16:11 

I think that there needs to be wider dissemination of information, I think the healthcare professionals need to have better knowledge of what support and services are out there. Because you know, I completely understand the healthcare professionals aren’t, you know, the fountain of all knowledge and they’re not meant to be, however, I think it helps if they know where to signpost. I think social media has been great in terms of people being able to connect with each other, not just within the UK, but also around the world to be able to share experiences of what things are like in other parts of the world. So you know, some of my best friends now are actually people who I’ve met on the patient advocacy circuit, and they’re all over the world, basically. And I think social media has been good in that and good in being able to provide some peer to peer support for people in an environment where, if people want to, they can be whoever they want to be, again, where some people might feel comfortable asking people that they don’t know, and people who they feel might have had the same experience rather than asking, for example, a member of the family because they may not want to burden, you know, “burden them” or worry them that, you know, that the person with MS might be worried about a symptom or something like that. So I do think that’s definitely helped in terms of bringing the community together. 

  

Geoff Allix  17:55 

And I mean, personally, I do think we are maybe moving in the right direction. Maybe not quickly enough, but there does seem to be changes in the last few years, there seems to be a bit more understanding and support out there. 

 
 

Trishna Bharadia  18:11 

Yeah. And I think there’s been a democratization of information as well, the internet has made it possible for people to be able to access more information. And that generally means that the patient community can become more informed. And I think that’s been a huge game changer. Because people are able to ask questions that they may not have been able to ask of their healthcare professionals in a time whereby, you know, if you want to get information about a condition, then you have to send off the leaflets and you know, store it all in great big lever arch files. And it was much more difficult to keep up to date, because those leaflets will be updated maybe once every few years. So I think that’s really good. What I think is needed, though, is I think, generally, people need to have more guidance as to how to filter information. Because as much as there’s some really great information out there. There’s also some really bad information and fake information, which is even worse. So how do people recognize what is good information? What is bad information, what is fake but also being able to delve beneath the headlines, because the mass media often will have, you know, these absolutely fantastic headlines like potential cure for MS. If you delve deeper, and you look at it, and it might be studies in mice. 

  

Geoff Allix  19:57 

Or it hasn’t even gotten that far. We’ll see studies in mice next year. 

 
 Trishna Bharadia  20:01 

Exactly. And, you know, or you look at the study, and there’s been, I don’t know, something like 30 people involved, which is obviously a really small number. So it’s about how do we make sure that the MS community is equipped to be able to deal with all of this information that is out there, and be able to use it properly? 

 
 

Geoff Allix  20:25 

You mentioned the lack of visible Asian people with MS. And I’ll be honest, you’re the first and only Asian person that I was aware of, with MS. So on a lighter note, the reason I’ve heard of you, is that you were featured on BBC Strictly Come Dancing. And for people from different areas of the world, I think in America, I think it’s called Dancing with the Stars. But it’s essentially a pro celebrity ballroom dancing competition.Is that a good way of describing it? So I’ve tried to use generic words to describe it. And so for the benefit of the global audience, potentially people who don’t understand exactly what Strictly is, because it’s Strictly in the UK. I mean, we don’t need to say in the UK, because it’s a huge phenomenon. But could you tell us a bit about the show and your experience of being on Strictly. 

  

Trishna Bharadia  21:21 

So Strictly Come Dancing is basically what you said, it’s, it’s an entertainment show whereby they take about 15 celebrities, and pair them up with professional dancers. And throughout the show, the celebrities learn how to dance Ballroom and Latin. And you see them through their dance journey. Some of them may have danced before, others might be complete novices. And it’s a huge phenomenon in the UK, but also, as Dancing with the Stars, it’s also known, you know, across the world as well. And the BBC decided in 2015, that they wanted to do a special four part edition of Strictly Come Dancing. And for the first time ever, they were going to open it up to non celebrities. Now, I’m an absolute huge fan of the show, so is my younger sister, Saturday night, between September and December, we are in front of the television watching Strictly and the number of times I’ve I’ve said to my sister, I wish I was a celebrity, just so that I could do Strictly because I mean, I love dancing, it’s one of the things that just really makes me happy. And so, my sister had found out that they were doing this special edition, and they had basically made a call out to the public to make nominations. For people who had overcome adversity in their lives, they had given back to the community, they’ve done lots of charity work, etc, etc. And also, they were big fans of the show, because it would be a way of saying thank you for everything that they had done, to give them the opportunity to essentially, you know, have their dream come true and appear on their favorite show. So my sister put in a nomination didn’t really think anything was going to come of it. Which I’m surprised that it did because there was over 11,000 people nominated, and six of us were chosen. And I was one of the lucky six, which was just amazing. I mean, the night that I found out. So with the nominations, anybody who was nominated wasn’t supposed to be told that they were nominated, it was it was going to be basically a huge surprise. And so the day that I was told that I had been nominated, they’d set up this sort of fake Zumba DVD recording. So I have also have an identical twin sister as well as a younger sister. Both of them had said to me, look, you know, we’ve heard of this Zumba DVD that’s being recorded. We all love to dance, why don’t we go along? It could be a Friday night out. And so I went, I went along with them and things and you know, halfway through this sort of so called recording, Lewis Smith, who’s a British Olympic gymnasts and won Strictly gosh, I can’t remember exactly which year, it might have been around 2013 and Natalie Lowe, who’s one of the professional dancers on Strictly, they just sort of appeared in front of me, and I was just like, oh my gosh, like why are you here? I looked like I was about to have a heart attack. 

  

Geoff Allix  24:57 

So it is completely genuine. You really didn’t know. 

  

Trishna Bharadia  24:59 

No, I was literally, I mean, now that I think about it, I actually I kicked myself and I think my gosh, you’re really gullible Trishna. You did not see it coming. Because, in the few weeks running up to that Zumba surprise, you know, my family were acting really odd. So every time the phone rang, they would take the call in another room. And that doesn’t usually happen in our family, you know, we all kind of, if the phone rings, somebody just like takes the call sat in the lounge. So you know, so I started to get really paranoid. And then even when we arrived at the venue, there was little things that I noticed which I thought that’s a bit odd, but then put it out of my mind, because you know, you just do so for example, there were people who were wearing like really lovely, beautiful, sparkly shoes. And I just thought, well, that’s really impractical to do a Zumba class,I’m here in my trainers, and the fact that nobody had brought bottles of water or towels with them, you know, basically the only bottles of water in that room around the side of the room were mine and my sisters, I thought, gosh, you’re all really hardcore, you’re going to do this entire recording and not need a drink. There were things like that, which now I think to myself, Why did I not click that something weird was going on? But like you said, I mean,  you don’t expect to suddenly be told you’re going to be on Strictly Come Dancing. So it was an amazing experience. So from start to finish, it was four months. And I was paired with a Aljaz Skorjanec, who’s one of the most popular male professional dancers on Strictly, who was just absolutely lovely and so, so genuinely interested in learning more about MS. And that was really important to me. Because yes, while I was, you know, basically living my dream of being taught dance by a professional dancer and appearing on Strictly Come Dancing, it was also really important to me that people understood about MS and particularly the invisible symptoms of the condition. Because to all intents and purposes, I look perfectly healthy. And for many, you know, a majority of symptoms of MS are invisible. There is a stereotype that you know, MS, you know, you a lot of people say to me, oh, you can’t have MS, because you’re not in a wheelchair. 

  

Geoff Allix  27:45 

Yeah. Oh, you are you look so well. So well. 

 
 

Trishna Bharadia  27:48 

Exactly. Or but you walk fine. So you know, you can’t have MS. And so I really wanted to put that across in the show, so that people came away, better informed about what MS can entail. But also the fact that Asians get MS. Because I wasn’t just that girl with MS on Strictly I was that Asian girl with MS on Strictly and again, that was really important because it gave a visible presence of the fact that Asians do get MS. And you know, I know people who have said to me that they’ve seen neurologists who’ve told them, well you can’t have MS because Asians don’t get MS. You know, and so that was very important to me. I think it’s probably the biggest amount of exposure we’ve had in the UK. So the biggest platform for MS on a primetime television program. Strictly, I think it’s been deemed the most popular primetime entertainment program in the UK, and to have the opportunity to be able to reach so many more people and lots of people who would never have otherwise had the opportunity to learn more about MS. And again, I think that was really important because within the MS community, yes, we raise awareness, but we kind of all know what it’s about. Because we’re all within the MS community. What we need is greater awareness outside of the community, to be able to say to people that this is what MS is, so if you know somebody with MS, these are the ways that you’re able to potentially support them. And I did have people contact me over social media after the show, people with MS who said to me that seeing me on the show helped them to open up those conversations with their friends and family, to say, look, you know, that girl Trishna on Strictly Come Dancing, she has MS. This is how it affects her, you know, these are the ways it affects me. And these are the ways that you can support me. And that, for me was one of the biggest legacies of the show, not just for MS, but also I mean, the other five people who were chosen, all had their individual stories. So there was one lady who has two children. When I say children, they’re actually they’re young adults now who are on the autistic spectrum. And again, she said, the number of people outside the autism community, who contacted her to ask her questions to find out more, was phenomenal. And I think that’s a really good thing. I think, where, wherever possible, if we can raise awareness through the mass media so we can reach a wider audience, I think it will improve understanding. And by improving understanding, hopefully, we can then reduce stigmatization and discrimination. 

 
 Geoff Allix  31:10 

Yeah, lets hope so. And can you still do a waltz or a foxtrot, if asked to? 

 
 Trishna Bharadia  31:17 

So, the dance that I had, which I didn’t choose, because it’s the one of the fastest dances on Strictly Come Dancing. Was the Jive. And yes, I can still Jive. I do sometimes wonder, how did I manage to do it because in those four months, we were dance training, sometimes up to 20 hours per week. I was still working full time. We were filming and filming days, gosh, some of them were 14 to 15 hours. And I was also, obviously, trying to manage my MS as well. So yeah, sometimes I look back and I think to myself, wow, I don’t know how I did it, especially because like I said, the Jive is one of the fastest dance styles on Strictly and they decided to give it to the person who has fatigue. But it was you know, it was brilliant and the style, I think it really suited me, Aljaz and I as a partnership because our partnership was very, it was very cheerful. The Jive is a very happy dance. And yeah, I just absolutely loved it. And the song that was chosen is one of my favorite rock and roll songs, its Run Around Sue. And you know, growing up, I used to listen to that song all the time. So again, it was lovely. It was just such a great experience. And everyone on the show was so supportive. All the other people who had been asked to take part. I mean, we’re still in touch. We speak to each other still every week. I’m still in touch with the professional dancers and also other people who are involved in the production of the show as well, its very much, they talk about the strictly family and it is very much a family and once you’ve participated, they really sort of embrace you and you become part of that family. Which for you know, the six of us who you know we’re not celebrities. We just we’ve sound absolutely just really heartwarming and really lovely. 

  

Geoff Allix  33:25 

With that Trishna, I’d like to say thank you very much for joining us. It’s been an absolutely fascinating life journey that you’ve been on. And thank you for joining us on the Living Well with MS Coffee Break. 

 

Trishna Bharadia  33:37 

Thank you for having me.