Episode 32: Trishna Bharadia, Part 1

Trishna Bharadia is an award-winning patient advocate, and was diagnosed with relapsing-remitting multiple sclerosis (MS) at the age of 28. As she tells Lauren in this episode, the diagnosis helped her find her true purpose: to actively campaign for patient engagement and to represent the possibilities of living – and thriving – with MS. She has since become a public speaker, writer, vlogger, blogger, consultant, advisor, and educator in the chronic illness sphere, volunteering with organizations such as the MS Society, Asian MS, ADD International, and the MS Trust (among others), as well as being recognized by the British Prime Minister with the Points of Light award, which recognizes outstanding volunteers who are making a change in their community and inspiring others. In 2015, Trishna was selected out of thousands of nominees to take part in The People’s Strictly – the UK version of Dancing With The Stars, which features individuals making an impact in their communities, with proceeds going to Comic Relief. Her persistence is made all the more extraordinary because her advocacy work is done in her spare time! She works full-time as a translator, and has done so since before her diagnosis. She campaigns with added vigor in the Asian community, as well as with young people. More on that part of her work in a future episode!

Key links mentioned in this episode:

The People’s Strictly

MS Brain Health Initiative

MS Society UK

Asian MS

ADD International

MS Trust

Join us as Trishna shares…

  • how she was first diagnosed – and that she was initially misdiagnosed, as are so many fellow spoonies
  • that a newly-qualified doctor provided her diagnosis; and that an MRI, spinal tap, and blood tests confirmed it – after she lost feeling down one side of her body
  • that waiting for a diagnosis was stressful, but that the diagnosis itself was a relief
  • that current treatments for MS don’t cure the disease; however, they slow degeneration and reduce the severity of symptoms
  • that she wasn’t initially offered direction and support for her diagnosis
  • that she was on her first treatment for 3 years before developing an immunity to it; and that she developed two long-term conditions in response to the next treatment – urticharia (chronic hives) and angioedema (deep tissue swelling)
  • that she sees a neurologist and an MS specialist for ongoing care
  • that she travels 80 miles round-trip to see her MS specialist – but she does this to see the best of the best
  • that she recognizes the importance of lifestyle and mindset in managing her condition
  • the importance of asking for help
  • that she now relies more on her parents than ever before – and she’s learned to embrace that shift positively. She’s learned to see this changing relationship as the gift of extra time with her family
  • that her younger sister has ulcerative colitis, and those symptoms started the same year Trishna’s MS symptoms began; and that her identical twin sister was diagnosed with MS 2 years after she was diagnosed
  • her day-to-day symptoms: fatigue and bladder issues
  • as an advocate, the current focus of her work is patient engagement – and her work has gone beyond just MS, and into all patient communities
  • that in UK airports, sunflower lanyards indicate that someone has an invisible disability, so they can seek assistance without judgment
  • how exhausting travel can be with MS
  • that she had to stop playing her favorite sport, field hockey – but that she took up dancing as a form of exercise, instead
  • that her employers have made accommodations that have enabled her to continue working full-time – and that most companies, like hers, should be making accommodations available for willing employees with disabilities
  • that she was selected for The People’s Strictly (an offshoot of Strictly Come Dancing, the UK version of Dancing With the Stars) in 2015. Trishna was among 11,000 nominees and was one of only 6 people selected
  • that many people equate MS with being in a wheelchair, and she has actively campaigned to change that image – that it’s not just about mobility issues
  • the importance of her appearance on The People’s Strictly – that it brought incredible visibility to MS, and supported so many individuals living with the disease, as well as their loved ones
  • that being on The People’s Strictly also taught her that she was physically capable of things she never thought she was capable of
  • that with understanding and support, anything is possible – and this can often come down to a good advocate or coach
  • that she has found her purpose in life as a direct result of her diagnosis

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Trishna Bharadia The People's Strictly Uninvisible Pod

Lauren: All right guys, thanks so much for joining us. I’m here today with Trishna Bharadia, who’s joining us from the UK. She lives with MS and is an award-winning campaigner and advocate for MS awareness. Trishna, thank you so much for joining us!

Trishna: No, thank you for having me. It’s such a pleasure, especially to speak to somebody over the pond, so to speak!

Lauren: Absolutely. It’s always a treat for me when I interview people overseas, because it’s really interesting to hear how our different health systems have handled people’s conditions.

Trishna: Definitely.

Lauren: So let’s just start from the very beginning … can you tell us, Trishna, how and when you first discovered that you had something going on? 

Trishna: Yeah.

So I actually had my first symptom probably about three years before I was actually diagnosed. But as is the case with many people who go on to be diagnosed with multiple sclerosis, my initial symptoms were actually misdiagnosed as something completely different.

I was asked to strengthen both my hands and it was diagnosed at that time as repetitive strain injury. I had no reason to question that diagnosis because I was otherwise very healthy, very active. I’ve always been very sporty. I was working full-time. It was an isolated symptom. And I was told it was repetitive strain injury. I was sent to physiotherapy; in time it got better, things improved. And it wasn’t until around three years later … so now we’re talking about the summer of 2007 – I completely lost the feeling down one side of my body. First of all, I thought it was maybe a trapped nerve. I played a lot of field hockey and was always getting injured. And I thought, well, maybe I’ve just done something playing hockey. But after probably about three or four days when it was increasingly getting worse and spreading, I thought, okay, there’s something not quite right here … I should go and see the doctor. And probably quite luckily actually, I saw a doctor who was newly qualified. And because of that, I think she was very conscientious about making sure she covered all bases. At that point,  she said like it could be something neurological. Especially because I mentioned to her that my cousin had been diagnosed with MS the year before. And so she said, “Well, look, let’s send you to neurologist.” I went to a neurologist, and then it was what I call a very typical path to diagnosis. I had MRI scans; that’s the key diagnostic tool for MS. And also lumbar puncture or spinal tap, and various blood tests. And this was over the course of around nine months. And in the meantime, I also started experiencing other symptoms — pins and needles, burning sensations, extreme fatigue. And eventually — and this is May 2008 now, and I was aged 28 at the time — I was given the definitive diagnosis of MS. I would say that once I’d lost that feeling down one side of my body, it was a very typical sort of path … I mean, typical path in the UK, where you’re sent for MRI scans and blood tests and you have the spinal tap done. And luckily, within nine months I was given the diagnosis. 

Lauren: But it seems a long time to wait, nine months. Was it stressful going through that waiting period? 

Trishna: It was stressful. It kind felt like … you know when you’re waiting for exam results when you’re in school or college? That’s what it kind of felt like. And all these things are going through your head about things that it could potentially be.

And I think when it came to the actual getting the diagnosis … yes, it was a shock, because I’d never really had any long-term conditions or any really ill health. So, it was a shock, but at the same time it was also a bit of a relief — because I felt … okay, now I know what it is. There are options, there are things that I can do. So okay, let’s get on with that. Let’s make a plan.

Because, you know, I think it would have been worse had I not known what was wrong. Knowing what was wrong gives you some semblance of being able to then take back control, because there are options available, and to say … okay, do this, this, this. And I need to make lifestyle changes in this way. And these are the treatment options which are available to me … If you don’t know what’s wrong … and I know many people where it literally takes years to get a diagnosis, and when they’re waiting for that diagnosis, they can’t do anything … and then having to cope with symptoms, which they’re not even able to necessarily manage properly, because they don’t have a definitive diagnosis. Yeah, it was as hard as waiting for test results can be — and it’s to do with your health. But like I said, once that diagnosis came, it was a relief to know, okay, I can start making plans.

Lauren: Absolutely. So what were those plans? How have you tackled the treatment options available to you, and what have you found has worked best for you so far? 

Trishna: At the time of my diagnosis, in the UK, there were only, actually, four disease-modifying therapies available for relapsing MS. And I was only eligible for three of them. So, in a way it was, I’d say, an easier decision. Because now in the UK there’s about 13 or 14 licensed disease-modifying therapies for relapsing MS. So if you’re being diagnosed now, you’ve actually got a huge range of different options. Like I said, there were only a few options available to me, and the disease-modifying treatments, they don’t cure MS.

There is no cure for MS currently. What they can do is slow down the progression and reduce the number of relapses.

I’m very curious, I like to ask questions. I’ve always been very informed about my health. And I was literally handed this, essentially, life-changing diagnosis. But unfortunately, I wasn’t offered any support or guidance or any signposting as to where to go for reliable information, where to look services and support. And I realize now, that even though myself and my family did a lot of research into the different treatment options available, I didn’t fully understand what I was reading. I thought I did at the time, but because I know much more now, I actually realize I didn’t. And to be honest, I was making decisions that were more convenient than anything else. I was still playing League field hockey, and I would have League matches at the weekend — and I knew I didn’t want to be injecting. So all the disease-modifying treatments that were available to me at the time, they were self-injections. And I didn’t really want to be injecting on a weekend. So that sort of narrowed the choice down. I ended up choosing a treatment, and I was on it for three years — and then developed an immunity to it.

So then I had to switch. By this time, I’d also changed my neurologist. So, in the UK, you have a general neurologist and you have MS specialists. 

Lauren: Oh, that’s wonderful. 

Trishna: Yeah. At the time of diagnosis, I didn’t know this.

I was diagnosed by a general neurologist, and it was about three years down the line that I then learned that were actually MS specialists, and I could be referred to one because I had a diagnosis of MS.

So now, I do an 80-mile round trip to see my MS specialist. 

Lauren: Oh my goodness. 

Trishna: Yeah, but the thing is, I do it because I know I’m getting the best care. They are a specialist in MS. They live and breathe MS 24/7.  They know the latest research, they know what treatments are coming through the pipeline. They have a really good understanding of what life with MS can involve. So I had moved to this new neurologist and he was actually the one who said, “Look, you’ve been on this treatment for three years; we should test you.” And I came back and yes, I was immune to it. So I switched to another treatment. At this point, I had no options; there was only one other treatment I could switch to. But then after 18 months, I then developed another long-term condition, more than likely as a result of that treatment. I developed chronic hives and angioedema, which is deep tissue swelling. So I had to basically come off that as well. So it’s been tough, because the thing is, these treatments that you take are meant to make you feel better. But at the same time, you can end up in a situation where … like I said, I think the chronic urticaria and angioedema were triggered, and I have it and it’s a condition which I now have to manage. Which is when I think things like lifestyle and your attitude and your approach really make a difference. Because there were times, particularly when the urticaria first developed, and obviously I was trying to manage my MS and I was having all-over body flares with these hives every other day. And there were times when you feel really, really down. And you think to yourself, gosh, I’ve already got this to contend with, and I’ve got something else to cope with as well. And then you try to juggle your medications, find what works. And funnily enough, in order to help manage the the hives, I actually went on to a low-histamine diet. And a lot of the things in the low-histamine diet that I had to cut out were things which could potentially help with my MS. And so then, I was, like, ‘Oh gosh, what do I do?’ And then you have to prioritize and think … well, what’s the most pressing concern? And at that time, it was getting the urticaria under control, because it was really affecting my life. It was affecting me being able to go out; I couldn’t get too hot because that was a real trigger and so my exercise levels went down. I then started putting on weight, which then started affecting my mental health, and obviously putting on too much weight isn’t good for your MS either. So, there were all these things which you’re then having to juggle and trying to balance — which …

I think many people who don’t necessarily live with any long-term conditions don’t necessarily understand or realize … how it can literally take over your life, just trying to manage things on a day-to-day basis. 

Lauren: Absolutely.

Trishna: So, yeah, it hasn’t been easy. Having said that, I take the attitude that life is about the challenges that you face and it’s about how you overcome them, and how you deal with them. And I know that I wouldn’t be the person that I am today if it wasn’t for the fact that I’ve been through these challenges. And, I’m very happy with the person that I am today. So I have to be grateful and thankful that some of these challenges have come up in my life. 

Lauren: Yeah, absolutely. And now that there are so many more treatment options available to you, as you mentioned earlier, have you been able to diversify how you’re going after the MS now, and find other treatments that work for you? 

Trishna: In theory, yes. I’m currently stable. So I make sure that I exercise a lot. I make sure that I’m doing stuff for my brain health. There’s a very good initiative out there called MS Brain Health Initiative; it gives you practical advice on how to stay brain healthy, not just through things like diet and exercise, but also how to keep your mind active. So it’s important, for example, to also have social interactions because, having something like MS, you can very easily become socially isolated. That in itself can have a knock-on effect in terms of your physical health, and also your mental health. So it’s all about making sure that you’re doing all the right things. But also … and I think this is really important … to recognize and understand the value of asking for help.

Lauren:  Oh my goodness, thank you for saying that! That’s a really huge thing in this community … getting to that point where you’re willing to ask for help, and learning how that works.

Trishna: It is, and especially if you’re someone who’s been independent. I went away from home to university. I’ve lived abroad; I lived in Spain for a year as part of my degree, and I always liked doing things myself. And so it it was hard having that realization that in order to do all the things I want to do, I am going to have to ask for help. And I rely on my parents now a lot more than I’ve ever done in the past — even though obviously, in theory, as you grow older, you’re meant to rely on your parents less. But that’s the way that it had to happen because of my condition. And learning to embrace that, I think, has been really key to staying positive. Instead of thinking, ‘Oh, I’m not going to be able to do this unless one of my parents takes me,’ for example … if I’ve got a conference I’m speaking at in London, or … my mum has come with me all over Europe when I’ll be speaking at conferences because I need her with me as my caregiver. Instead of now thinking, ‘Gosh, I’m not that independent,’ or wish that I could be more independent, I now think, ‘Well, actually, it’s meant that I’ve been given the gift of time with my mum.’ And we’ve gotten to know each other in a very different way than I think we would have done if I didn’t have MS or I didn’t need that support.

So I think there’s a lot of value in looking at things positively. Don’t get me wrong! I mean, I have bad days. And I do think things are negative … because I’m only human. But generally, I do try and flip it around. Because at the end of the day, I take the attitude of … I have this and it’s not going to go away. So if I’m going to be negative, then that very quickly ends up being negative, essentially, for my life and the person I want to be. 

Lauren: And I think we often learn that lesson the hard way, if we’re able to find positivity  — because we’ve done the negative route and it hasn’t worked for us. That only makes us sicker, doesn’t it? It’s beautiful that you’ve really enhanced your relationship with your parents, and particularly with your mom, almost as your advocate.

Trishna: Also, just generally, our family life has been very challenging since my diagnosis because, as I said, my cousin was diagnosed the year before me; that was my mum’s brother’s son. I have a younger sister — she eventually went on to be diagnosed with ulcerative colitis. But her symptoms started in the year that I was diagnosed with my MS. She was involved in a high-speed car accident, which wasn’t her fault; she was literally in the wrong place at the wrong time. As a result of that, she also suffered from PTSD for several years. So obviously, she’s had her own issues — which as a family we’ve had to deal with. And then I also have an identical twin sister, and she was diagnosed with MS three years after me. So, in 2011. It’s been very challenging as a family to have to find those new dynamics and how the relationship is going to work going forward. For example, at home it’s now myself, my younger sister, and my parents; my twin sister is married and she lives away from home. But even just on a day-to-day basis at home, if my younger sister is  having a flare with her ulcerative colitis, there are certain symptoms … she might be in pain, she might be going to the bathroom multiple times in the day, and suffering from fatigue and stuff. And then there’s me, and my main symptoms on a day-to-day basis are fatigue and also bladder issues. Just generally in the house, the family dynamics … everyone has to understand, ‘Okay. So, this isn’t a good day for Trishna. Is it something that initially her sister can help with, or vice versa? And how can my mom and dad input into that?’ We all work full-time. I’m a translator and analyst for a business intelligence company. And my sister and both my parents are still working, as well. And on top of that, I’m also doing all the advocacy and awareness-raising. 

Lauren: I don’t know how you do it. It’s really amazing!

Trishna: (laughs) It’s because I have the support around me. But it is a lot of give-and-take, and you have to be mutually supportive to each other. If I didn’t have their support, it would make things much harder. Having that environment.

And it’s one of the reasons why I think I’ve really understood the value of raising awareness — because not everybody does have that support. And if they don’t, they need to know where they can go in order to get access to services and to information, and the support that they may not necessarily be getting at home.

So, I am very thankful for that. I actually call … particularly my parents … I call them my enablers, because they do all the things that I’m doing. I know that they’re very proud of me. 

Lauren: They must be! We’ll get into your advocacy work in a little bit. But it’s wonderful because it sounds like, in a way, you and your sisters being diagnosed has brought all of you closer together, because you’re working more as a unit. 

Trishna: Yeah, it definitely has done, and I think there’s been more fostering of mutual understanding as well.

When my twin sister was diagnosed with MS, I remember her saying, “You know, I thought I understood what you were going through. But now I realize that actually, I was empathizing, and I didn’t actually fully understand.”

Even though we’re incredibly close, and we always have been. For those three years when I had MS and she didn’t, it was funny because for the first time in our lives, there was a fundamental difference between the two of us. We’ve literally done everything together; at school, we were in the same classes, we took the same subjects. We went to the same university; we took the same degree. We were working our first jobs at the same company. Very, very close. And yeah, I remember we were actually talking about fatigue and she had said, “I actually understand now where you were coming from.” 

Lauren: Can you walk us through what a typical day looks like for you, and how you’re managing your symptoms throughout the day, or being mindful of the choices that you make in your lifestyle?

Trishna: I don’t actually have a typical day. I was thinking about this, just because in the last couple of weeks, there’s been so many different things going on. I do work full-time. So with my job, I work seven-and-a-half hours a day.

My employers have been brilliant in terms of helping me to manage my MS. They brought in various adjustments that have enabled me to carry on working full-time. 

Lauren: Wonderful.

Trishna: Yeah, it has been brilliant. But then with the advocacy and awareness-raising that I do, that in itself brings very different things every single day. So one day, I might be, for example, doing an interview for a podcast. (laughs) I might be flying into mainland Europe to speak at conferences or events. I might be chairing a conference call for a steering group that I’m part of. I might be writing a blog post or an article. I often do media interviews, so I’m often asked to go onto the radio to comment about a new piece of research, or something like that. And I’ve done various things on television, and also in the printing press as well.

Because my advocacy isn’t just to do with MS now; it has also gone beyond MS and across patient communities. And I do a lot of work surrounding patient engagement.

Within the pharma industry, particularly, there are these buzzwords of patient centricity, for example. A lot of what I’m doing … I’m working to get the patient voice heard throughout the entire healthcare journey. Whether that’s MS, rheumatoid arthritis, inflammatory bowel disease, cancer … if any of those long-term and serious conditions which can have a long-term impact on somebody’s day-to-day life, making sure that everything is focused on what the patient requires. Putting the patient needs at the center, and then collaborating with the various stakeholders to make sure that we’re all moving towards the same thing in the correct way. Which is one of the reasons, like I said, why no one day is typical. I’m always doing so many different things. So regardless of what I’m doing, I will usually need to have a nap during the day. With my bladder issues … if I’m at home, I don’t worry about it too much because I’m close to a toilet and it doesn’t really matter … I will just drink however much I need to drink. If I’m out, then I do have to be mindful about how much I’m drinking and make sure that I know where the toilets are. You don’t want to, in the middle of a one-hour presentation, suddenly think, ‘Oh no, I need to go to the bathroom!’ It’s about things like that. And again, when it comes to managing fatigue, there are certain things that I do. For example, where I live, public transport makes it very complicated; I’m out in the countryside. So everywhere I go, it’s either by car or by taxi. Actually, what I don’t want to be doing is making a journey by public transport which involves about three or four different connections, carrying my bag and all the things that I need … and by the time I actually get to where I need to get to …

Lauren: You’re tired!

Trishna: I’m tired. Exactly!

If I’m traveling abroad, I always book special assistance. And also in the UK, they’ve come up with a really good scheme whereby they have these sunflower lanyards, which notes that somebody has an invisible disability; that they may need some sort of extra help.

It means that the airport staff are aware of that fact. So you can get fast-tracked through security; you’ll be the first on board, and things like that. Which all makes it that little bit easier. Because I actually hadn’t traveled in a long time, just because I found the whole process so exhausting. And these things … it may sound really small to somebody without a long-term condition, but it makes such a huge difference. Yes, I still find traveling very tiring. It’s not to the extent where I remember doing some trips and I literally didn’t know how I was going to make it from the plane to the arrivals area; I was that exhausted. So all those things help. Also exercise. As I said, I used to play a lot of field hockey. I had to give that up about three years ago now, because the fatigue was just getting too much. In something like field hockey, where you’ve got a team relying on you … but also hockey balls flying all over the place … you have to be very switched-on, and you have to be quick! I had a couple of quite bad injuries, where I’d been hit with balls and things. And it made me think, well, is it because my reactions have slowed down? And just the one match on the weekend was wiping me out for three or four days. So I took up dancing instead, dancing and Zumba. And I just love it, because it’s the kind of thing where you go at your own pace and you do what you’re able to manage. Even if I’m having a slightly bad day with my fatigue, for instance, I can still go and basically just do what I’m able to do. As long as I’m moving, I’m still burning the calories. It doesn’t mean that you have to go crazy. And there’s nobody else relying on you. It’s just you, and you push yourself as far as you need to push yourself. Plus with mental health, I just think dancing is brilliant. I just love it. I come out of class and I feel on top of the world! Yeah, fantastic!

Lauren: I was going to ask you, as well, how you balance the demands of work and life. But as you mentioned, it sounds like your work is making accommodations for you. And that’s huge.

Trishna: Yes, it is, I’m very lucky. I’ve been working for them for 15 years. I had been been working for them four years when I was diagnosed. So I feel very lucky, in a way, that they already knew me and knew what type of person I was. They didn’t want to lose me as an employee. And so I think it was very much two ways. For me, it has enabled me to carry on working full-time with them. They hung on to somebody who they knew was a good worker. Some of these adjustments that can be made are so simple. There needs to be more awareness and more encouragement of companies to do these things.

Because I think there is a huge demand for people who have long-term conditions and disabilities who want to and can work if they’re given the right environment to do so.

Like I said, I’ve been very lucky in that they have been really great so I can carry on working. 

Lauren: And it’s so good for your mental health, too, to have something outside of yourself to focus on. 

Trishna: Definitely. That sort of mental health and then development of things, that’s why I think I enjoy doing the awareness-raising and the advocacy so much. Yes, I have my job. But outside of that, I’m also developing a huge amount, professionally and personally. Because of the advocacy, I’m doing things that I wouldn’t get to do as part of my job, because it’s not in the job role. So, giving presentations, for example; doing media interviews and things like that. I would never get to do that as part of my job.

I feel as though I’m constantly developing as a person.

And also, the skills that I’m learning, and the people that I’m meeting … and things like that. People never believe me when I tell them I was actually really, really shy at school. 

Lauren: Oh, I don’t believe you! (laughs)

Trishna: I was really, really shy! I was the kind of kid, that even if I knew the answer to a question the teacher asked, I wouldn’t put up my hand, because I’d be so scared of saying anything in public. Now, my largest live audience to date for one of my presentations has been over 700 people. I was up on a stage.

I’ve spoken at 10 Downing Street; I’ve spoken in Parliament. I’ve gone from that really, really shy kid to somebody who’s now doing that and enjoying it. I think that’s really testament to … if you’ve got something that you feel needs to be said, it can really make you step out of your comfort zone.

And I think that passion comes through, and you can really engage with that. I did Strictly Come Dancing, which is the UK version of Dancing with the Stars. I did that in 2015. It was a special four-part series of Strictly Come Dancing. First time they’ve ever done it. For people who are familiar with the format, usually they get a whole bunch of celebrities, pair them with a professional dancer and they learn how to dance ballroom and Latin. But for the first time ever, the BBC decided that they were going to open up to the general public and ask for nominations. They were looking for people who had done community work, charity work, had overcome adversity in their life – who had encountered challenges and stuff. And I’m a huge fan of the show. So myself and my younger sister, every Saturday when it comes on from September through to December, we’re sitting there, we’re watching it. And she obviously saw that they were calling for nominations. So unbeknownst to me, she nominated me. They had over 11,000 nominations and chose six people. 

Lauren: Oh my gosh. So, six out of 11,000?

Trishna: Yes – and I was one of the lucky six! And, again, if somebody had said to me — even at the time, for example, when I was diagnosed —that fast-forward however many years … I’m really bad at math. I can’t work it out that quickly! To 2015 … I think that’s seven? Yeah, fast forward to then and if somebody had told me that I was going to be dancing on national television in front of millions of viewers, I would have laughed at them and said, “Hey, that’s not going to happen!” Again, I think it’s about …

… the confidence that has been created as a result of the advocacy I’m doing.

And also the fact that suddenly I was presented with this amazing opportunity to raise awareness on national television. Strictly Come Dancing in the UK is the most popular primetime entertainment show. So I was just like, ‘Well, this is just a once-in-a-lifetime opportunity!’ And also to dispel some of the myths and stereotypes. Because a lot of people automatically equate MS with being in a wheelchair. And they don’t necessarily realize that actually, MS isn’t just about mobility issues. Actually, that’s just one of a longer list of symptoms which people with MS can experience. And so being able to tell that, literally, to the nation – was an amazing opportunity. After the show aired, I, and my parents and my sisters as well, we were interviewed as part of the series. We were being stopped in the street, in the supermarket, and people were asking my parents: “How’s your daughter doing?” We learned so much.

And then people in the MS community were saying things like, “Oh, you’ve inspired me to be more active because I didn’t know that people with MS could do that.” Or they said that it made it easier for them to start conversations with their own families and support networks, because they were able to say, “I have MS. That’s what that girl on Strictly Come Dancing has.”

So, to have had that opportunity to create this amazing platform to raise awareness, I think was, to be honest, the best thing that has come out of it. Obviously, aside from the fact that it was brilliant to have all the makeup and the beautiful dresses! That was brilliant.

I think it also made me realize that I was capable of doing things I never thought I was capable of. 

Lauren: Isn’t that wonderful!

Trishna: It is. Obviously my family believed in me … but I do remember my sister saying to me, “Whatever you do, don’t go on national television and fall over.” (laughs) She had seen me in some of the rehearsals, and there were a couple of times I literally ended up …because I had to dance in heels … and when you’re fatigued and you’re wearing heels and you’re asked to dance, that was difficult. There were times I literally ended up flat on my face. And you can’t do that on national television! But it was also the encouragement from everyone in the team. All of the crew were behind, not just me, but also the other five people who took part — who also had their own specific stories and their own journeys that they’d been on. But also my professional dancer that I was paired with — a guy who’s Slovenian, his name is Aljaž Skorjanec, and he’s a real favorite on Strictly Come Dancing in the UK. He made me believe: We could do this. And we could do it really well. He was just brilliant. And he was, very much, “How can we choreograph this dance to make sure that you’re still challenging yourself, but we’re able to see the best in you?” I think that shows that with understanding and support, things are possible. Things are achievable. It doesn’t matter what you’re doing. I remember, around five years after I was diagnosed … I’d always wanted to go snowboarding and never done any kind of winter sports. As a kid, I’d been ice-skating at the ice rink, but I don’t really count that. And so, in my early 30s, I decided, okay, I’m going to try snowboarding — even though I have MS, and even though I have extreme fatigue. And I literally spent three days on my backside. But my instructor was just so supportive. I remember on the last day, I made it basically from the top of the mountain down to the bottom. It took me over three hours. A seasoned snowboarder would be able to do it in 20 minutes (laughs). But she was brilliant, and literally, it got to the point where I was so physically exhausted, every time I fell, I couldn’t even get myself back up. She was around 19, 20 years old and she was physically having to haul me up. Every time I fell, she was like, “No, we’re going to do this. You’ve come to learn how to snowboard, and we’re going to get to the bottom of the mountain, even if it takes all day.” 

Lauren: She was a goer like you! (laughs)

Trishna: Exactly. And like I said …

I think that kind of support and having that kind of encouragement around you can make such a difference in what you feel you can achieve — because it makes you believe in yourself. 

Lauren: And it sounds like also, not only has it allowed you to shift your perspective … when you got sick, you go through the negative emotions … but it’s allowed you to see your MS as a blessing, because you’re able to get out there and represent your community. Also, you’re able to diversify the public’s understanding of disability.

Trishna: Definitely. You know, the first thing that people often say to me if I tell them I have MS, is: “Oh, I’m so sorry to hear that.” And I always say to them: “You know, what? Don’t be.” Because I have had so many fantastic opportunities as a result of my MS, once-in-a-lifetime opportunities. There aren’t many people who can say … I’ve been to 10 Downing Street twice now. For my advocacy work. And I’ve been to Parliament. I had the opportunity to do Strictly Come Dancing — just that, on its own!

I honestly feel that this is what I was meant to do in my life. And I feel that, unfortunately, many people don’t necessarily find their purpose in life. I feel very lucky that I feel that I have — and it’s a direct result of my diagnosis.

So it doesn’t matter what happens in the future in terms of how the MS progresses or anything like that, I will always hold on to that, and know that the things that have happened — the good and so many positive things that have happened —  have happened because of this condition. And so I refuse to see it as a negative. Yes, I have down days. That doesn’t mean that I see my MS as a negative thing in my life. I have down days just like anybody else; it’s just that the reason why I’m feeling down might be because, for example, I’m having a bad bladder day. And I’m thinking, oh, gosh, I have to travel into London in a few hours, and every 20 minutes I’m having to go to the toilet. How am I going to cope? But you know, in the grand scheme of things, I can’t see my MS as negative in my life. I can’t. 

Lauren: It’s such a wonderful perspective, and that’s where I think it’s so important for people to hear your voice in the community. 

STAY TUNED NEXT WEEK FOR PART 2!

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