Transcript

Lauren: It sounds like you’ve had a very positive reaction from the public, from your loved ones, about your diagnosis and your coping mechanisms — even from your employer. Have you ever been in situations, because of your invisible condition, people just haven’t understood, or have confronted you, or you’ve been forced to justify… “Well, I have this condition” …?

Trishna: Yeah, there have been. One incident springs to mind. My dad had had a knee operation … it was quite a few years ago now … and I was the one who was picking him up from the hospital. When I arrived there, I said to the nurse — because my dad wasn’t able to walk, he was in a wheelchair — “Can I have some help to take Dad to the car?” And she looked at me: “You’re young, fit and healthy … why aren’t you pushing him yourself?" I explained to her, “Look, I’m not able to push him myself” … because I did feel, particularly in that environment, when you’re in a health care environment, I didn’t feel that I should have to explain. But she refused to accept it, and I just turned around and said, “Look, I have multiple sclerosis. I cannot push my Dad all the way to the car park. Can you get somebody to come and help? Otherwise he’s going to be stuck here for the rest of the day. Because I’m the only one here to take him home.” At that point, she said, “Oh, okay, I’m sorry.” But I felt that if somebody has asked for help …

Lauren: Why question it?

Trishna: Why question it. Because people generally don’t ask for that kind of help …

Lauren: Well, it’s so hard to do in the first place.

Trishna: Exactly.

I think I’m becoming much more confident in being able to explain to people.

Also because … not just my sister, but I’ve also known other people with inflammatory bowel disease, as well … I remember I was at the theater with a friend who has Crohn’s. He was having a bad day, and the show had finished, and he said, “I’m just going to go and find the toilet.” He asked the usher, “Can you tell me where the nearest disabled toilet is?” And the guy’s very words were: “You can’t use that. You’re not in a wheelchair.” And my poor friend, who was bursting … I’m very perceptive … I can see now in someone’s face where they’re in that complete panic, when they need to get to the toilet now. So I said to him: “You go find the toilet, I’ll sort this out.” Then I basically gave the guy a 20-minute lecture on disabilities and how, especially in a customer-facing environment, people shouldn’t be making judgments like that. Because again, in a situation like that when someone specifically asks where the disabled toilet is …

Lauren: Don’t question it.

Trishna: Don’t question it, exactly. They’re not asking to be awkward or because they just want to skip a queue; there’s likely to be a very good reason for it. In the UK, we have these toilets that are opened by what is called Radar keys. There are locked disabled toilets, and you can basically get these keys from your health care provider or certain providers online to give you access. It’s basically to stop the general public from using these toilets, because only people who need them are given these keys. But I’ve seen people looking at either me or my sister when you walk out … they’re not in a wheelchair so why are they using that toilet?

Lauren: The expectation of a wheelchair as the visible marker of disability is so frustrating in our invisible community. It’s getting people to understand that disability looks very different … of course it’s people in wheelchairs, but it can also be more than that.

Trishna: Yeah. So I mentioned I always book special assistance when I’m traveling. One of the most common things I get, particularly when I’m flying with my mum … I’ll always wait until everyone else has gotten off — because it’s just easier for me, particularly when I’m fatigued. I don’t want people thinking, oh gosh, she’s going so slow; she’s got a queue behind her. When you get off, there will usually be somebody waiting with a wheelchair just outside the plane. A number of times, people have automatically gone to my mum, who’s 70, and said, “We have the wheelchair for you.” “Actually, it’s for me.” And they’ll just look at me. So I actually travel with MS stickers stuck to my hand luggage and to my bags. Actually I think that’s just judgmental, assuming it’s for a person just because they might look older.

There’s still a huge need for more awareness to be raised.

Because I’m within this community, I’m very aware of it, and I hear people being verbally abused for using disabled spaces in car parks, because people have said they don’t look disabled enough to use a disabled space. I’ve heard people talk about, for example, when you have people on the autistic spectrum. To all intents and purposes, physically there’s nothing wrong; they look absolutely fine. But they may have sensory issues, anxiety issues; they might be non-verbal. If you ask them a question and they don’t answer, people could very well assume, oh, they’re being very rude. That has happened to people that I know within our community. That has happened before because people have just made assumptions. And that needs to change. You should always give people the benefit of the doubt. Don’t automatically assume they’re using a disabled space because they just don’t feel like walking. Or they’re being boarded first because they can’t be bothered to wait. Or they’re using a disabled toilet because they don’t want to wait in queues. I’m not saying that doesn’t happen; it does. But I believe it’s a very small minority of people, who then end up making it difficult for the vast majority of us who do actually genuinely need to use those services.

Lauren: Absolutely. We’ve talked about the perception of disability. Why don’t you tell us more specifically about the advocacy work you’re doing? Obviously, your diagnosis has completely changed your life for the better because it’s given you all these opportunities to speak to different groups of people. Tell us what your work is like!

Trishna: So I collaborate with multiple stakeholders. By that I mean I work with pharmaceutical companies, medical device firms, digital health companies. I work with clinicians; I work with health care systems, so if it’s in the UK, it’s with the NHS. I work with individual patients, and patient organizations and charities. And with regulators as well.

I very much believe it’s about everyone coming together. We’re all working towards the same thing, but we’re just coming at it from different angles. It’s important to realize that in order for things to improve, we’re going to have to collaborate.

So even, for example, the pharmaceutical companies I work with, I don’t work with any one exclusively. For me, we need to make sure that everyone is moving forward. So I’m Ambassador and Patron for several health-related and disability-related charities.

Lauren: You’re an ambassador for the MS Society in the UK, right?

Trishna: There’s a couple of MS therapy centers … you’ve got the Chilterns MS Centre, and the Huntingdon, Peterborough, & Cambridge MS Therapy Centre. But I’m also Ambassador for ADD International, which is a disability activist empowerment charity and that’s international; it’s about empowering disability activists, particularly in Africa and Asia, where there is very little support for people with disabilities ... but also they’re not necessarily empowered to be able to get change to happen. I’m also Patron for Para Dance UK, the professional body for inclusive dance, essentially.

Lauren: That’s fantastic!

Trishna: Yeah. So again, whenever I’m asked to become a Patron or Ambassador for a charity, one of the first things I always say to them is that I can’t be an Ambassador or Patron exclusively for your organization. Because I believe that each of the organizations that I’m linked to have a particular place within this environment, to make sure that, like I said, people who have long-term conditions … that their needs are being put in the center of everything’s that being done. But some of the things that I do include … while I've already mentioned, obviously, speaking conferences, and events, and I do lots of media interviews, and I do lots of writing … I also do things like I co-create information, and services. So, for example, I'm currently working on an online patient support program, which is not linked to any drug. A lot of the patient support programs are linked to specific drugs. So you are only joining that support program if you happen to be taking a drug by that particular pharmaceutical company.

Lauren: Which can be limiting for people who really want general support.

Trishna: Exactly. So I'm currently working with an online health community to produce this online support program for people with MS. And it will be about support and day-to-day living. So I can navigate the healthcare system; looking at diet, exercise, symptom management, and how to have better conversations with your health care team. And all that kind of stuff — which is applicable to everyone, regardless of whether or not you're on a treatment. So working on things like that. But then, I do a lot of review work as well. Anything which is patient-facing that requires consultancy. So I'm reviewing content and information, making sure that it's relevant and it's useful, and that the language that is being used is understandable …

Lauren: And inclusive.

Trishna: Inclusive. That the tone of language is correct. I remember doing content for a pharma company — it was for their website. They were producing disease awareness content. I remember reviewing it, and the tone of language and some of the words that they had used were really patronizing. Especially if it's coming from a pharma company, they also need to be really careful. Because just generally, the patient community is a bit wary of information that comes out of pharma because they think, oh, is it going to be biased? Are they just saying this because they want us to take their drug, and stuff like that. So I had to go back to this particular company and say, "Look, if you come across as being patronizing, that's actually not going to do much for your reputation within the patient community.” And they were so thankful. They said, “We actually didn't even realize when it was being written that it could come across like this.” Which is why ...

It's so important to get people involved who have that knowledge of the various patient communities, and also who have the skills and the experience to be able to advise and consult.

I've consulted on campaigns, on events. Sometimes, it's the simplest things. I remember I was working with one company, and they wanted to put on a focus group. This was for patients from all disease areas. They wanted people who had been involved in clinical trials. And I remember saying to them — because they'd given me an outline of when they wanted this focus group to be — “Have you thought that if people are going to be traveling, you don't really want people traveling during rush hour," for example. If they have mobility difficulties, then traveling during rush hour isn't going to be an option, unless you're going to pay for taxis. Try going on the London Underground, rush hour … that’s hard enough if you don't have a disability. Or, so many people, when they take their medications, it has to be around meal times. So make the timing of the focus group outside of a meal time. So if it’s at 2, 3 o'clock, rather than midday, then people won’t have to skip their lunch. Thinking about things like that, it comes naturally now to somebody who has a long-term condition. If you've not got experience with that, it's not necessarily something you think about. But it can make a huge difference. I remember at the end of that particular focus group, so many people actually fed back to the company and said, “This is the first time that anybody's ever actually thought about the timing or the venue. We love doing this. And if you're going to do another one, then I'll happily be involved.” The company was obviously really happy. Other people who took part were happy because they felt that they contributed, and that there was an opportunity to contribute more — rather than going away feeling like, 'oh, gosh, that was really hard. I was exhausted by the end of it, and was it really worth it? And I'm not sure I'll take part in something like this again.' So having that involvement by people who really understand … such a difference. So I love it when organizations come to me and they say, “Look, we've got this idea. Can you help us bring it to fruition to make sure that it's going to be what patients want, what patients care about?” Because that's really important as well. There's no point in an organization saying, “Oh, we've got this fantastic idea for a campaign.” But the patient community that they're aiming at really doesn't care about that particular issue. So, it’s about making sure things are relevant and useful, and, like I said, that we all are moving forward together in the right way. And also in a transparent and a fair way. For a long time, patients have been seen as this sort of added value extra, not an integral part of this process.

Lauren: Absolutely.

Trishna: Exactly. And that needs to change. And that comes from every single person within an organization that is engaging with patients and patient communities.

It's going to come from the top, the executive management. But it's also going to come from the patients and patient communities themselves, turning around and saying, “Actually, we need to be valued for our time, our experience, our skills. We need to be valued properly — in the same way that healthcare professionals are.”

There have been times when I've been asked to do things — share a platform with a healthcare professional on a certain topic. Just because they have a medical degree, and they're coming at it from a certain angle, doesn't mean that the angle that I'm coming at it from and the experience I bring … it doesn't mean that it's worth any less. I think in the past that has been the perception.

Lauren: It’s that disability is ‘other’, or that a patient is ‘other’. It’s like ... that we're not part of the larger community. But actually … hey guys … we are!

Trishna: Advocacy is changing hugely. The skills and the experience. Particularly in what I call the top level of patient advocates; I call them the ‘pro patients’ — the ones who are now working beyond their own patient communities. They're looking at the systemic issues — like literacy, digital health, general access to health care systems, and all of that. You don't go to university and decide: I'm going to graduate and become a patient advocate. You're not trained to do this. So the people who are doing this, we're training ourselves. It's a huge amount of time and effort that goes in. Every time I'm asked to present at a conference, I do hours of research and reading; and that's all being done in my spare time. All self-taught. And that in itself, I think it needs to be recognized much more.

Lauren: Well, luckily, you have been recognized in some ways, because you have won quite a few awards!

Trishna:  Yes, I have! (laughs)

Lauren: Feel free to toot your own horn on that one and tell us about them! (laughs) That's what I think is wonderful, because we're seeing people like you get recognized on a larger scale. Where there's still change that needs to happen … the sea change has begun.

Trishna: Yes, definitely. And I think what the next step is  … particularly with industry … the standard operating procedures, the infrastructure of companies … that all needs to be much easier to collaborate with individual patient advocates. I think there is an infrastructure which is there now to collaborate with patient organizations. I think that next step is recognizing the value of individual patient advocates, making it much easier to work with them — particularly in Europe, because obviously in Europe there is a very different set of regulations as to how industry can collaborate with patients than there is in the US. We're moving in the right direction; we're definitely not there yet. Every so often, I'll come across somebody in industry who’ll say … and this has actually happened … I was on a panel, and we were talking about patient involvement in the design of clinical trials. This lady just sat there, and her very words were: “Patients shouldn't be involved in the design of clinical trials, because they don't have medical degrees. They're not trained to do this.”

Lauren: Oh, no!

Trishna: I know! Every so often, you will still come across people who will say things like this. We've still got some way to go.

Lauren: Yeah, we need to broaden our horizons more.

Trishna: Exactly. I was actually speaking about this at a conference the other week. I was saying, if you look at the characteristics of patients compared with 40 years ago, the characteristics of patients now are very different. That’s just the way things were going to go — whether it's to do with the availability and the accessibility of health information now with the Internet …

Lauren: And the mental health aspect of that, too.

Trishna: Exactly.

I think the the patient advocacy movement in HIV really paved the way.

Lauren: That’s a really good point.

Trishna: I don't think, say, 40 years ago or so, that the characteristics of patients would have necessarily been suited to the type of patient advocacy we have now. Whereas, as patients are becoming more informed, and becoming more vocal about their rights, what they know they should be able to access and the channels that are now available … The advent of social media is huge. You could run a campaign to get access to a certain drug just through social media, and quite easily gain thousands and thousands of followers.

Lauren: Well, I think even just individually — your social media feed, for instance. I found you because of social media! This has been happening so much more in terms of the people whom I'm finding to be on the show. But also, you show on your feed a mix of your everyday life, like where you're going to a Zumba class. And of the work you're doing, and how you're fitting that into your lifestyle. So you're really getting a full picture of a human being. And not just from the MS perspective, but from the perspective of your whole life. You’re giving a picture. Of course, you know, there are ways to filter that information on social media, too — which can have its pluses and minuses. But when you're that open about what's going on — hour to hour, day to day — it can be really informative.

Trishna: Yeah. And it's something which, when I decided that I was going to use social media as a vehicle — it was something that I really thought about — I didn't want it to just be about my MS, because I'm not just my MS. And I think it's really important, for not just the people around me — for example, my friends who may not see me as often — I think it’s also really important for the people that I collaborate with, the stakeholders that I collaborate with, within that healthcare space. Also, remember, I'm still a person with a condition who is trying to manage day to day. And I think that, again, becomes really important.

Because it's when you see somebody, you usually see them on a good day. Because, let's be honest, who does go out when they're having a bad day, when they have a long-term condition?

It's easy for them to forget. They know that I'm Trishna, who speaks at conferences all over Europe, and I do Zumba, and when they see me speaking, or I'm having a meeting, for example, with a pharma company, there's preparation that's gone behind that. So I think it's important to reassert that, and make sure people are remembering that you're just trying to get through day to day. And, as such, anything that other people can do to make that easier, will help. I have a group of friends who, when they go out now, they will say: “Trishna, if you're free, and you want to come out with us, we'll make sure we do it in an area that is local to you.”

Lauren: Isn't that nice? That's so thoughtful.

Trishna: Exactly. It makes a difference. Don't get me wrong, I've lost friends, which is something anyone with a long-term condition will probably be able to relate to. Because there are people in my life who won't make that effort. But then, you think, well, okay, that's just the way it is.

Lauren: But also, that would happen whether or not you have a long-term condition, wouldn't it? Because there's a certain point in your life when your really close friends are your close friends — and the ones who are sort of hangers-on or that you're hanging on to — you're able to let it go, and really just focus on the very meaningful, deep relationships.

Trishna: Exactly. So I think having people see that, and also how I cope when I'm doing events. I remember posting one photo, during, I think, one of the Congresses, and I’d had a really long day. I said, I'm posting a photo from my bed in the hotel, and literally, a few hours ago, I was presenting to however many people. And now I'm in my bed, and I'm recovering, because I'm so exhausted. I think again, it's important for people to see that.

Because I don't want people to think that life is easy with a long-term condition, because it's not. What I want people to see is that it can be made easier when you have the right support and understanding around you.

And the only way people can offer that, is if they fully understand what you're going through. And what are the issues and the challenges that you're facing.

Lauren: And the only way they're going to understand that is if we keep talking about it.

Trishna: Exactly.

Lauren: Well, we've covered so much, Trishna, and I like to wrap up my interviews with a couple of Top Three Lists. I wonder if you could give us your top three tips for someone who is maybe waiting on an MS diagnosis, or has just been diagnosed. Or even is just looking at possibly beginning a life in the invisible conditions arena. What would you recommend they do? What are your top three tips?

Trishna: So my top three tips would be … firstly, don't Google!

Lauren: That comes up a lot!

Trishna: If you’re going to look for information, look for resources which are reliable. So talk to healthcare professionals. Also talk to people who are in the various patient support groups on, for example, Facebook or Instagram or Twitter, and say, “Where are the reliable sources of information, and the understandable sources of information?” Because the last thing you want to do is read a whole load of information that you don't understand, and come away thinking, ‘Well, actually, that's been really scary. Because if I'm not understanding it, it must be really bad, right?’ Don't be scared to ask for help — which we’ve spoken about a lot. It can be difficult, but you will very quickly realize who are the people in your life who will be there for you through the good and the bad. Because they're the ones who won't question when you’re asking for help. And it can bring a whole load of new positivity to your life with a long-term condition. And the other thing is, there's no right or wrong way to cope.

Lauren: Oh, I like that!

Trishna: People will often contact me over social media. And they will say things like, "I'm feeling like this; is this right? Should I feel this angry?” Or, conversely, “I feel like, actually, nothing's changed. And should I be feeling something different?”

I always say to people, "There is no right or wrong way; you have to find your own path.”

When I go out and I tell my story, the first thing I will always say is, “It's not about me saying that there is a certain way of doing things. It's about finding inspiration from other people with the condition. So people that I, for example, follow on social media, the people I've met through my advocacy work … I take inspiration from them, and how they cope with whichever long-term condition they have. Whether it’s MS, or whether it's something else. There may be nuggets of information, and ways that they've been able to cope, which could then help me. It’s not that I'm going to look at somebody and think, oh, gosh, I have to follow that exact path. It's not about that. I think that's really important for people to remember. Because as human beings, we’re all individuals; as people with long-term conditions, with invisible or visible disabilities, we're all still individual in that area. So, for example, if you have somebody who is an amputee, they're not necessarily going to have exactly the same path as somebody else who is an amputee. No two people with MS are the same. And it's about remembering that, that the way you cope is going to be completely individual. What is important is that you get the right support for the way that you're coping. So whether that's accessing professional mental health support and services; whether it's about making sure that your family is aware of what you're going through, so that they can support you. But don't feel that you have to emulate somebody else.

Lauren: And conversely, if you're finding inspiration from someone who you're following on social media, or someone you've made contact with and they're giving you good suggestions, be open to trying those things, too, maybe.

Trishna: Yes, definitely. And also, let them know. I love it when people contact me and say, “That particular vlog that you did really helped me.” Or, like I said, when I did Strictly Come Dancing, people contacted me and said that it inspired them. I had one lady contact me to say it inspired her to try a body combat class. She has MS, and she never would have thought about trying that. And that's nice for me as well, because I feel …

Lauren: That it’s nourishing.

Trishna: It is. You feel like you're making a difference and that you are helping people. Because also, what can sometimes happen with social media, is that you feel like you're putting your life out there. And then you think, well, is it actually making a tangible difference to the people that you're trying to reach? So when people do contact me and say that it is, that's nice for me as well. That gives me a boost. If I'm having a slightly bad day, it can turn my day around. It’s definitely a two-way thing.

Lauren: And about having open communication, which is a huge part of … when you get a diagnosis, starting to tell people and starting to tell yourself, give yourself permission to exist in a new way.

Trishna: Yeah.

Lauren: So my other Top Three List is … and you mentioned this from the very beginning, how you've had to make lifestyle adjustments to manage your symptoms. I'm wondering if you have top three guilty pleasures, a secret indulgence, or a comfort activity that you do when you're having a flare? What are your top three go-tos that give you joy?

Trishna: I love spending time outdoors — being outside in nature, or even just out in the garden. I find that very nourishing. I've learned how to enjoy spending time at home. That might sound really strange.

Lauren: No, it doesn't to me. But it might to people who aren't in our community!

Trishna: I've always been very busy. I've enjoyed going out. And like I said, I’ve been very physically active playing hockey. On the weekend, I was always out and about. But particularly in the last few years, as my fatigue has worsened, I’ve actually gotten to the weekend and I can't manage to go out in London and dance all night. I've learned to appreciate being at home, and watching a movie with family, and enjoying it — rather than thinking, I'm only doing this because I can't do what I really want to be doing. Now, it gets to the weekend and if I know that I'm going to struggle to be going out, I think, ‘Oooh, which movie will I get to watch this weekend?’ I think again, that's really important. And also to appreciate spending time on yourself. I don’t think we do that enough. Because very often there’s this misconception that you're being selfish, spending time on yourself and doing things which are right for you. So I think that's all really important. I think the third thing is, exercise as much as you can and within what you're capable of doing at that particular time. I'm very much involved in inclusive exercise. One of the dance classes that I do … actually my sister, the one with ulcerative colitis, is an inclusive dance instructor. Which she does in her spare time; she has a regular full-time job … but in her spare time, she's an inclusive dance instructor. It's about doing what's within your capabilities. Because when you exercise, physiologically, you release endorphins. It can make you feel good, even if you might be going through a particularly bad time. Don't get me wrong; there are some days when, literally, I have to drag myself out. Because I might be having a bad day with my fatigue, or my bladder has been playing up and it's just been really frustrating for me. But when I'm exercising, I know that when I stop, I'm going to feel really great. Because all those chemicals and endorphins and going around your body anyway. So I think that's really important. And I don't believe anyone who says that there isn't an exercise out there for them. It's just about finding what is right for you and what you enjoy. I believe that people should find an exercise that they enjoy so much that they don't feel like they're exercising. Exercise shouldn’t be a chore. When I’m at my Zumba and dance classes, the hour flies by; I’m having so much fun. The fact that I'm burning calories, I forget about it — because it doesn't feel like exercise. Whereas, I’m the kind of person, if you put me into a gym and stick me on the treadmill, I get really, really bored. That, for me, is some kind of torture! I look at my watch and I think, I must have done this for at least half an hour. And it's five minutes. That's because it's not the right exercise for me. I know other people who love that. And that's what's right for them. So to find an exercise where, like I said, you don't feel like you're working.

Lauren: For me, that’s Pilates. I love the Reformers, because it lets me lie down. I feel fully supported. And then I get a fantastic workout. It's finding the thing that makes you want to keep coming back.

Trishna: Exactly. The days when I know that I have dance and Zumba, I look forward to it.

Lauren: Isn’t that great.

Trishna: Yeah, and I think that's how people should be exercising. It shouldn't be seen as a chore. It should be something which we know is good for our health, but can also be such a fun thing to do — that people do look forward to it and they don't mind doing it.

Lauren: Absolutely. Well, Trishna, it has been such a pleasure meeting you and talking to you today. And I'm really excited to continue to follow your work.