9998 Multiple Sclerosis SPECIAL - Trishna Bharadia

A special episode on #WorldMSDay with Trishna ... Trishna Bharadia, multi-award winning patient advocate, is a well known face in the MS world. Diagnosed at the age of 28 in 2008, she has since worked hard to ensure that the voices of people with MS are heard throughout the healthcare journey. She is an Ambassador/Patron for several local, national and international charities. In 2015 she was chosen as one of six people out of over 11,000 nominations to take part in a special four-part series of Strictly Come Dancing on BBC1. "The People's Strictly for Comic Relief" broadcast Trishna's MS story to millions of people in the UK and beyond, highlighting many of the hidden symptoms of the condition. She has won multiple awards for her work, including being recognised by the UK Prime Minister's Office with a Points of Light Award. In her spare time, she loves keeping active and regularly attends inclusive dance and Zumba classes.

Twitter: @TrishnaBharadia

Facebook: www.facebook.com/trishnabharadia2015

Instagram: @TrishnaBharadia

LinkedIn: https://www.linkedin.com/in/trishna-bharadia-b8b46163/

Copyright: Bron Webster 2020

 

TRANSCRIPT:

Bron Webster 0:03
This is the MS show podcast people with multiple sclerosis and their families who want information and inspiration. I'm Bron Webster. I've been living with Ms for over 20 years. I'll be sharing with you tips stories from ways to keep going through them and

I'm really pleased today to welcome to the podcast Trishna Bharadia. Trishna is a health advocate and patient engagement champion for Ms. And it's a real privilege to have you here today. Trishna. Thank you.

Trishna Bharadia 0:40
It's a pleasure to be here. Thank you for asking me.

Bron Webster 0:42
Right. What are we going to talk about today? So Trishna a nice place to start is just a little bit of your story. But before you go into it, I did see online that you are approaching your 12th year have been diagnosed This is literally later this month.

Trishna Bharadia 1:03
It is say the middle of the middle of this month. And to be honest, I don't even know where those 12 years have gone. So I was diagnosed back in May 2008. I was age 28 at the time, and I'd had several years of symptoms in the run up to that diagnosis. So my initial what we now know was probably my first relapse, I'd lost the strength in both my hands. But as is very common with many people who were eventually diagnosed with MS. It was put down something completely different. And I was diagnosed with repetitive strain injury. And I was sent for physio in time things got better forgot about it, but then about three years later, I completely lost the feeling down one side of my body. And that's really what put me on the path. To what eventually led to my ms diagnosis, because I was then referred to a neurologist, I was sent for MRI scans, I had a lumbar puncture. And in the meantime, I also started to experience other symptoms. So said particularly sensory issues. So I had L'Hermittes sign, which is where you flex your when you flex your neck, I was getting electric shock sensations. Now one side, I was also getting burning and pins and needles and tingling sensations. And so after two MRIs, a whole host of blood tests to rule out other things and my lumbar puncture. I was eventually I was given the diagnosis of relapsing ms in May 2008. And that's the date that I mark now as my MS. aversary. So you get a bit of a positive twist there. Yes, I do. Well, the thing is, is that I'm doing We'll end up talking about much of this later on. There is so, so many positive things come out of my diagnosis. I've had some wonderful opportunities. I've met some amazing people. I've learned. I've really learn what I want out of life. I often say to people, that being diagnosed with MS has actually turned me into the person that I always wanted to be. That was really the catalyst that led me on a certain path, and it made me into the person I am now and it's put me where I am now as well. And that's the reason why I can't see it as something negative in my life. So many wonderful things and so many brilliant things have come out a bit as a result, that I think well why not market because it was the day That changed my life. At the time when I was diagnosed, I didn't know that it would be a positive change in my life. Um, but it has been and you know, it's very much the positives have outweighed the negatives. And I think a lot of that has come out of the advocacy work that I've ended up going into, because I think there is something which is always very, very positive, whereby you're taking what is a very negative situation for you, which is being diagnosed with a chronic long term in currently incurable degenerative condition and using it to help other people. And I think that's an incredibly positive and very affirmative thing to do. Which is, yeah, which is why I think, well, it is something positive that's come out with that diagnosis. So on our market I often end up so I remember when I was when I left the hospital after receiving the news. My mom and dad were with me and we stopped at a petrol station and dad said you okay trician is anything that you need and I said to him I said, You know what, can you just buy me an ice cream? deserve it? So every year now on my ms aversary I have an ice cream

so yeah, people celebrate their birthdays with birthday cake. I celebrate my MS.aversary with ice cream.

Bron Webster 5:36
That's all good. That's

Unknown Speaker 5:38
definitely

Bron Webster 5:39
and so you've said that you're a patient advocates. What is that? What is a patient advocate? What is involved in that and how did you end up getting into it?

Trishna Bharadia 5:51
So patient advocate being an advocate is actually what you make it you know, people ask me, How do I become a patient advocate? Well, exactly. Add advocacy is about helping others. Now you can do that in any way that suits you, you can do as much for as little as you want. For me, it's about putting the patient voice into the healthcare journey. Now the more you know stronger, more effectively and throughout the healthcare journey. So from diagnosis to through to drugs development through to ongoing care and support through to campaigning for better, you know, better rights, for example, access to work, etc, etc. It can cover a whole spectrum of things. For me, I've ended up very much concentrating, like I said, in the healthcare journey. That's something that was really interested me, essentially because when I was diagnosed my den health teams and then urologist essentially handed me this diagnosis and then sent me away with no information no signposting, no guidance as to where I should be going for, you know, support information, etc. You know, never once was the MS Society mentioned, never once was it mentioned, you know, where I could, for example, look into, you know, clinical trials, for example, and none of that was offered to me and I took the attitude, well, if that's happening to me, it must be happening to other people. And it shouldn't be like that. And so that's the reason why I've been very much interested in improving that healthcare journey. Other people might be get involved in advocacy, through fundraising, or through one to one support, or they might volunteer as I don't know as a treasure After that the local group of the MS Society is very much is what you want to make it. And one thing that I do say about advocacy and about particularly the volunteering side of things, is that you need to be able to enjoy it because if you're giving up your time in order to do something, then you should be enjoying what you're doing. And you know, I all of my advocacy work is done in my essay in inverted commas spare time, I have a full time job. I work as a translator for a business intelligence company. So if I'm going to be spending my evenings and weekends and you know, my holidays, etc, doing advocacy work, but of course, I should be enjoying it. I think that's really important to remember is it's about, you know, what you want to make it and as I said, you can do it as the little or as much as you want, you can do lots of different things. It's about finding what works for you,

Bron Webster 9:07
and where you're passionate; as well as passionate enjoyment. And like you say spare time is a precious commodity. So it's salutely.

Trishna Bharadia 9:17
It especially, I mean, fatigue, for me is a real issue. It's one of my main symptoms of Ms. So if I have, by have restricted and energy levels, I want to make sure that where I am extending energy, I'm extending it in a productive and positive way, but also in a way that I enjoy. Because why would you expend energy on something that you don't enjoy when you've already got limited reserves?

Bron Webster 9:47
Hmm, yeah, absolutely. And so what sort of things are you actually doing on a day to day basis that was part of the advocacy.

Trishna Bharadia 9:58
So I do a huge variety of different things from I, you know, going to speak at conferences and events, internal meetings, at healthcare companies to writing I write about my experiences I write about patient engagement, I review content, so patient, particularly patient facing materials, to make sure that they are relevant, that they're in the correct format, that they're understandable as well, because often, patient facing materials are written by people who aren't necessarily part of that patient community. So you need to make sure for example, that the tone is right, that it's not patronizing, that it's using words that people are going to understand. I also advise and people consult me on things like disease awareness campaigns, about putting together patient engagement strategies about things like if they want to run a focus group, for instance, how do they engage with the patient community? How can they make sure that the focus group that they're putting on is patient friendly? So things like accessibility, what time it should be? Should they be providing food and drink, things like that. So it's, it's very much the whole spectrum of things. Another thing that I do, which I really again, I really enjoy is I often give interviews in the media. So if there is a new, I don't know, a new clinical trial, for instance, that's appeared in the media and it's to do with MS, then often, particularly local BBC, media and radio stations will contact me and say if you got a comment on this, I've done quite a lot of interviews with the BBC Asian Work about living with chronic illness, about what is Ms about disability and the stigma and the stereotypes that sometimes happen within the Asian community. And as well as that I also work with, with the NHS, with healthcare professionals on things like shared decision making, how to ensure that your clinic appointment is patient friendly. There's a whole range of different things I am. I just enjoy it. I get to work with lots of different organizations, from like I said, from industry and healthcare companies to lots of different charities to you know, new religious and other people living with chronic illness and particularly, obviously, particularly Ms. And so I get that I get that opportunity to interact with lots of different they're called stakeholders. In in the health journey,

Bron Webster 13:02
so thinking you said there about the Asian ms community. And that is something that I'm really not aware of how ms affects other cultures. Is that something that

Trishna Bharadia 13:18
you kind of

Bron Webster 13:19
felt that it needed a greater voice and that you wanted to sort of speak up more for that community?

Trishna Bharadia 13:28
Definitely. So within the Asian community, there is still a lot of stigma and prejudice attached to chronic illness, serious illness, disability, and particularly if you're a woman, because as women within the Asian community, we're expected to be everything for everyone. So we're expected to be expected to be a good wife, daughter and sister mother, etc, etc. And there's a lot of misunderstanding, there's a lot of, there's a huge lack of knowledge around what Ms is because traditionally MS is being seen as a Western disease, it's being seen as a Western illness. And you know, I know people who would, Asians who were diagnosed eventually diagnosed with MS, or even told by neurologists, or it can't be ms because Asians don't get Ms. Whereas actually, particularly within the within the second and third generations of you know, Asians who have been born and brought up in the UK or in the US, etc, etc. And we have just the same, you know, risk factors as everyone else and actually, more and more people within the Asian community are being diagnosed with MS. So I thought it was incredibly important that we get that out there. Because, you know, just one example, I know somebody who has an axe, she's around the same age as I am, she's Asian. And they've hidden it from the community and from the extended family, because of the reactions and the experiences they've had, when they had initially disclosed it to people. And the reaction for so often, you know, people say things like, Oh, it's karma, you've done something bad in a former life. You know, how are you going to have children? How are you going to bring up children and no, you're useless to me now. So I'm going to divorce you and that's, that's still there. And those, you know, stereotypes of if you're diagnosed with a chronic illness, then you become useless to society. And I want to use Smash those stereotypes say, hey, hang on a second. No, that's that's not the case. And I think the only way to do that is eight from within the community itself, because you need to have an understanding as to why those attitudes are there. But also, it needs to be done in a way that that it doesn't judge the reasons why those attitudes are there. I think if you're doing it from outside the community that becomes much more difficult. Having been born and you know, brought up within that community, I can understand why some of those attitudes exist. And having that understanding then helps you to change those attitudes. So yeah, it's something which I'm very passionate about is one of the reasons why Asian ms was set up of Asian MS is one of the national support groups that works under the umbrella of the UK, Ms. Society. And it was set up many, many years ago by basically somebody who met someone else who was an Asian who had MS and was basically "Wow, I never knew any other Asians had Ms". So they've set up this support group. And it's very much it's about having a safe space to be able to engage in these discussions, raise awareness within the Asian community in a culturally sensitive way. And I think that's really important that there are cultural sensitivities that have to be taken into account. Because if you don't, then there's a great danger of just putting your foot in foot in it. And that, you know, that's not going to get the message through people just won't listen.

Bron Webster 17:50
Yeah, and that's a really important message, I think, for everybody listening and particularly if anybody is from that community. To know that that support is out there, and how would somebody find that support? Would they look online?

Trishna Bharadia 18:06
Yes. So if you go onto the MS society's website, and there is a section on the website, which is dedicated to Asian ms, and on there, you will find past editions of the newsletter, you'll find our social media details. So we're also on Twitter or on Facebook as well. And so yeah, it's about like, it's about having the opportunity to engage with people from the same cultural background, and people who have an understanding of what those sensitivities might be.

Bron Webster 18:41
Yeah, absolutely. Because to get a diagnosis is isolating enough. Exactly, but to then not be able to see people or know where to find people to talk to. That is just a further a further issue. So definitely, that's important. Do you feel personally Trishna Because of those community pressures, do you feel that you've got even more to prove?

Trishna Bharadia 19:07
I do

Bron Webster 19:08
you are really really, really busy, aren't you?

Trishna Bharadia 19:15
Yeah, no, I do feel like Yeah, I do have something to prove.

I think and it's one of the reasons why I was so grateful for the opportunity to do Strictly Come Dancing, because not only was I representing the MS community, I was representing Asians who have disabilities Asians who are living with long term conditions. And television is obviously such a visual such a visual media that people could see I was essentially a brown face with MX with you know, hidden disability with a long term condition. But I was doing all these things. And I think that was very powerful. I had many people contact me after the show to say that they sat down with their families, and watch, watch the show. And it helped them to engage with their own families and start conversations. Because I had been so open about my own journey. They felt that it was impossible to open up about their own because they felt like Actually, I'm not. I'm not alone. And I think that's, that's really important. And like I said, it was about it was about showing the world what, what can be possible. And don't mean don't get me wrong, it's I was very aware that I didn't want people to go away and think that everybody with Ms would have been able to dance and jive the same way that I did, but it wasn't about actually what Did it was about the attitude that I was conveying. And I think that, that that's what the difference is. It's about saying, well, this is what I want to do. This is how I want to meet my life. And there are plenty of things which I'm which are beyond me, you know, I like it for me running a marathon, just that's not within my physical capabilities anymore. There are plenty of people with MS. It is within their physical capabilities. It's not within mine. However, I don't I don't think to myself off. You know, I can't run a marathon and that means I can't do any exercise. I think about what are the things that I can do? And is that I think that's the attitude that I really wanted to put across in the show. The fact that if you have disability, if you have chronic illness, don't write us off.

Bron Webster 21:55
It's really important to find what you can do. Yeah. And then Get on with that and I know you've ended up going from a really serious hockey player. And you've transitioned into Zumba now. Yeah, and I think all of this will have stood you in fantastically good stead when you went on to Strictly

so what what was your sort of hockey background?

Trishna Bharadia 22:21
So my hockey background, I was literally I was more or less born with a stick in my hand. Now. My family are a hockey family. My dad still plays he's a over 70 he plays club league level he also plays internationally, Wales as well. At the age of, you know, 70 both my sisters play my cousin's uncle's, it's in the blood and played hockey basically all my life and to quite a high level as well. Well, I played county level I played for the first 11 at my university, I played a very good competitive league level as well. And I continued to play even after my diagnosis, I was slowly having to make adjustments. So first I started, what I say moving backwards down the pitch. So I've always been a in the attacking front line, I was a right winger or a centre forward, which involves a lot of running and you have to do a lot of sprinting has to be fast and agile on your feet, etc, etc. And I was finding that fatigue was becoming an issue, my reactions were becoming much slower, and I started to move further down the pitch. And when I eventually ended up having to give up hockey, I was actually in the position which is known as a sweeper. So it is basically the last person before You get to the goalkeeper. And it was just, it was something which I felt that I needed to do in order to continue to play just in the same way that in order to continue to play, I had to make adjustments to the amount that I was playing. So at the point of being diagnosed, I was often playing two matches in the weekend and I was training twice a week during the week. And again, it got to a point where even just playing one match was wiping me out for two to three days. And as much as it it was heartbreaking. It was like losing a part of me to stop playing. I knew that it was the right thing to do because like I said, I was wiping me out. I was taking me two to three days to recover from a match when you work full time. I just got I couldn't do that. I was also getting injured. more often. And part of me started to doubt myself thinking, am I getting injured more often, because I'm getting slower, I'm getting more tired on the pitch much faster. My muscle fatigue was getting really bad. And essentially, I wasn't able to get out of the way of flying balls and flying sticks and had a couple of very bad injuries ended up in a&e. And that really it not my confidence but also became scared to a certain extent. And when you play hockey, there is a there is an element of you have to be a bit fearless, really. Um, and so I thought Actually, no, this is this is the right time to stop. I was still playing at a good level. And I didn't want to get to the point where I thought I got really, really badly injured or I wasn't

I was

I started resenting the fact that I wasn't able to play at the level that I knew that I could play out. I didn't want to get to that point. And so I started to find alternatives. And there was a point at which I was doing both silver and hockey in parallel, because I thought I need to try and find something.

Bron Webster 26:21
..because you you're crazy, you're active

Trishna Bharadia 26:27
sport has always been part of my life. I've always been one of those people that I literally I tried everything, you know, I used to play a lot of netball, you know, volleyball, tennis squash, like you name it, I would, I would do it. And, and when I started to adjust the level of hockey training that I was doing, I thought, okay, if I'm not going to do hockey training during the week, let me find something else that I can do that maybe I don't have to push myself as hard because when you're playing a team sport You have to keep up with the rest of your team. With Zumba, the only person you're, you're you're essentially competing if that's the right word you're letting down or letting down. Yeah, it's yourself. And so I knew that actually, I could go to Zumba. I didn't have to keep up with anybody. I didn't have to compare myself to anybody. I could go when I was having a bad day, and I could do what I was able to do without feeling like I was letting anyone down. And so if there was a point when I was doing both in parallel, but then when I eventually gave up my hotkey, I then started to do a lot more Zumba. And so I mean, at the moment, we're in a lockdown, period, so things have slightly changed, but outside of this whole lot situation. I usually do up to four classes a week, depending on what other things I've got going on and things like that.

Bron Webster 28:09
And I've got to just stop you there and just let the listeners know that you do Zumba your younger sister teachers, some Yes, she does. Yes, yes, she's been doing that online and I joined in one last week and hoping I'm going to join in more. But I can say, watching and watching Trishna using her nimble footwork in a Zumba class and I thought that that must have taken me years. Years and years,

Trishna Bharadia 28:39
it does take pride something I love dancing I always have done and so I think for me, it was very much about well, I get to spend an hour doing something that I love and going completely crazy to some great music which again, I love. You know, I grew up listening to Latin American and Spanish music My job as a translator, I actually translated from Spanish into English. And so yeah, it's just something that I love. But I think even within, so we're in that online class, there was obviously my sister, my younger sister was leading the class, there was myself and then my mom, even within just that threesome. My younger sister lives with inflammatory bowel disease. She has ulcerative colitis. I have multiple sclerosis. And I also live with several other chronic conditions including irritable bowel syndrome and chronic urticaria and angioedema. My mom is over 70 she has hypertension and a chronic lung condition. But you know what we were all joining in. We were all doing the same thing. We were all doing what we were able to do. And I think that's a really unique thing about dance is that it can be truly inclusive and no In addition, that's my sister in admissions classes. So it's a fully inclusive environment. She is a qualified inclusive dance instructor. She has a qualification from para dance UK. And in her classes we have people with cerebral palsy, people who are who are living without mutations, people who are living with spinal cord injuries, and people who have visual impairments, we've got a whole range of different abilities. But we all come together, we all love dance, and everyone comes and you do what you're able to do, without any fear of judgment. And without any fear of like I said that you might be letting somebody down because, you know, if you can't keep up on a hockey pitch, then you are letting the team down essentially. And that's why I think dance is a really great form of exercise for anybody who's living with a long term condition. and/or a disability, because you're able to go at your own pace, there's no right or wrong, apart from if you do Strictly Come Dancing, in which case if you get the step wrong

.... They both Laugh

Bron Webster 31:13
somebody's going to sit and actually judge you.

Trishna Bharadia 31:16
Exactly. Having said that something that's a My, my, my professional dance partner on strictly was Aljaž Škorjanec .... And something that he said to me because I have always had this very bad habit of constantly saying, sorry, whenever I did something that I felt was I got the steps wrong. And he would always say to me, he said, when you're dancing in a partner dance, he said, if you think you've gone wrong, he said, that's not the case. It's always the guy who's gone wrong because a guy is meant to lead you. He said, you would never go wrong.

I'll take that.

I'm not sure quite how To the couple of times when I landed flat on my face, because I managed to trip over my own fee. I'm pretty sure I could have blamed him for that.

Bron Webster 32:09
less painful than a hockey integrated, I guess.

Trishna Bharadia 32:11
Yes, go. Yeah, yeah, so my hockey injuries have just yeah, they've been some of my hockey injuries even when I've been taken to a&e. So there was one injury I had, and we actually had to call the ambulance to take me to a&e and even the paramedics looked at my injury, and they said, we're not quite sure what to do with that. That actually looks really bad. And you think when the paramedics say that then you know that is not?

Bron Webster 32:39
No. So you are crazy.

Crazy girl. And so I was looking through a couple of your vlogs that you've done before we were talking, and I know you said that up until sort of eight years after you diagnosis, you've always seen your MS as being very separate to yourself. But that later down the line is become an intrinsic part of you. And you've taken taken it into being part of you of you. Yeah. Do you feel Do you go by the mantra of MS defines you

know that so a lot of people say it doesn't define me

and a very adamant about that. And then I know that I think well it does it just to some extent define me

and I just wondered where where you are on that one Trishna.

Trishna Bharadia 33:43
So I wouldn't say that it defines me I would say is to find a path that might lap that my life has taken since diagnosis, and I wouldn't be who I am. I wouldn't be where I am. And I wouldn't be doing what I'm doing if it wasn't for the fact that I've been diagnosed with MS. And that's, that's what it's defined. It's had an influence on the character that I've become it's had an influence on my personality, but that's also because it's defined the path that I've gone down. So believe it or not, and many people just laugh out loud when I tell them this. Naturally, I'm an introvert. I'm an introverted personality. I was painfully shy as a kid, all the way up until I mean, up until University, and then I started sort of come out of my shell a bit. But when I compare even people who knew me at university, when they see me now they say, Wow, Trisha, you like completely different in terms of your confidence, your app How outgoing you are, and things like that. And that So Ms has had an impact in that way. But it's because the path that I've gone down. So doing advocacy, I felt that one of the best ways to get my message across was to speak to people. Whereas when I was at school, if I saw somebody that I knew if I was walking in town, I saw somebody that I knew across the club walking towards me kind of thing. I'd cross over the road, because I'd be too scared to talk to them. Whereas now, I, you know, I took that I realized very quickly Well, if I want to get my message across, I'm going to have to talk to people and do very in I naturally felt very uncomfortable situations because I don't know these people. You go and speak at a conference. You're speaking in front. I mean, my biggest live audience today has been about 700 people is being me on a stage talking to over 700 People, and then you're expected afterwards to be able to go and speak with those people. And you know, the buzzword in the in the business world and even actually, in our social lives nowadays is networking. You know, I'm not a natural networker at all. Um, but it's something that I've had to learn to do. So that's then had an impact on my social life because because I've had to learn how to network. I also find it much easier now to talk to, you know, if we go out as a group of friends, and there were people in that group who I don't know, I'm no longer scared to go up to them and say, Hi, I'm Trishna You know, this is where I find you know, how do you know someone So, for example, I would never have done that in the past. So it is I wouldn't say that Ms. Has it they wouldn't say defines me I would say that it's defined the path I've gone down which is then had an influence on who I become

Bron Webster 37:01
And have was there a particular trigger points? Were you? Was there something that you did? Or didn't do that made that whole switch into becoming more vocal? Or was it just a case of repetition and keep doing it?

Trishna Bharadia 37:19
I'd be talking to people. It was it was very organic. You know, I often receive messages from people and they'll say, How do I get to a level of patient advocacy that you've got to? You know, I'd like to be able to say, well, it was a plan and I followed a plan and I had a strategy. I know I didn't like he was all organic. One thing led to another I got involved with one thing that led to something else I met somebody at you know, I don't know maybe I spoke at a local Ms. Society group event. And then in fact, somebody saw me speak and they said, Would you come to speak at our event? at conferences, what will often happen? is all you know, I'll speak at a conference. And then somebody will come up to me afterwards and they'll say, Oh, we've got this project that we're doing. And actually what you spoke about really resonated and we'd like you to be involved in that project. It's all been very much word of mouth, and all very organic. And, you know, I say to people, well, for me, the things that have allowed it to grow has been talking to people. It's been, you know, getting out there on social media, and things like that. But there was no plan. You know, it just it happened and if somebody says, Can you pinpoint any sort of flash points, there are points of which I saw a definite sort of changing path. So, one was when I changed urologist and the neurologist who I changed to Very much. He's a key opinion leader. He's very much out there in the academic and the research world. He is very proactive, very forward thinking. And he helped me to become what's known as an expert patient. He helped me to develop those tools and to also develop the knowledge to be able to sit in a room with other healthcare professionals, with people from, for example, the pharmaceutical industry, people from the regulatory side of things, and be able to have a conversation on the same level as them rather than feeling like you were the one in the room who didn't really understand what they about. So that was one key sort of what I call Flashpoint. Another Flashpoint was when I was over is very humbled to have received the the MS. society's volunteers The Year Award, and this would have been back in, gosh, I don't even remember the year now, possibly 2013.