Multiple sclerosis advocate Trishna talks to us about fundraising, dance and the importance of support group, Asian MS.
Hi Trishna, thanks for chatting to us today. For those that don't already know you, can you tell us a little bit about yourself and the work you do?
I was diagnosed with RRMS in 2008, aged 28. My diagnosis wasn't a good experience. I wasn't given any information or directed towards the right kind of support. It’s that negative experience which took me into my advocacy work. I thought, people shouldn't have to go through his, let's see if I can make a change. Initially I started volunteering with various MS charities like the MS Trust. That led me to working with other clinicians, patient associations and patient groups. I also work across different disease areas, looking at the overarching issues that affect lots of different patient communities, like diversity and health care, digital health, health literacy and good patient engagement practices.
There was never really a plan to become an advocate, it just happened.
Were you involved in volunteer work before your diagnosis or was it your MS diagnosis which spurred you on?
As a family, we've always been taught to give back to the community, so I did do charity work before my diagnosis.
I did hospital radio for a long time and various things like tin-shakes for lots of different charities. However, I think the MS diagnosis really focused my attention on health care.
Once you start volunteering, you realise that there's such an array of different opportunities out there, it’s not just about running the London Marathon. It really shows you how much you can develop personally. My initial foray into it was through Asian MS. I attended an event with my mum and happened to be sat next to the person who was the lead of Asian MS and we got chatting. It all started from there. I then got involved with the MS Society and the MS Trust. There was never really a plan to become an advocate, it just happened.
You've often spoken about how much you love to dance. How does dance help you with your MS symptoms?
I was always a hockey player, we're a hockey family. I always say I was born with a hockey stick in my hand. I played for about six years after my diagnosis, but it became increasing difficult with my fatigue, my reactions were slowing, and I found I was getting injured more frequently. That's not a good thing when you have hockey balls flying all over the place, I ended up in A&E a number of times.
By the time I gave up hockey I'd already started doing some Zumba. I loved it and thought it was the perfect replacement to hockey. For me, dance has been very much a way of being able to express myself. It really helps my fatigue, which sounds counterintuitive to exercise to help fatigue, but it does help.
One of the things that always worried me about my MS was the possibility of needing to use a wheelchair, but through these classes, I've met lots of wheelchair users and seeing what they're achieving and doing, made me realise there’s nothing to be scared of.
It makes me happy. You're enjoying the music and you're keeping fit at the same time. It's also a truly inclusive form of exercise. I've met a lot of people through dance that have taken away the fear from the future. One of the things that always worried me about my MS was the possibility of needing to use a wheelchair, but through these classes, I've met lots of wheelchair users and seeing what they're achieving and doing, made me realise there’s nothing to be scared of.
How have the last 18 months or so been for you? What kind of impact do you think the pandemic has had on people with MS?
It's been hard. I live in a shielding household. I'm obviously clinically vulnerable, because of my MS. Both my parents have got health conditions and they're over 70, plus my younger sister is clinically extremely vulnerable due to medication she takes for a long term condition. I've left home three times since last March 2020. The first time was to get my flu jab in September last year and then I went out to get both of my Covid vaccines. So it's been difficult. I've missed having the social connections, but the thing I missed the most, is having to watch my niece grow up over FaceTime. That's been really difficult. I've also not seen my twin sister in that period either.
I think what it has done, is shine a light on a lot of the issues that people with MS and other conditions have faced for a long time. People have started to understand what it's like to not be able to go out. I have a really busy life; I get the weekend off and I'm just too tired to socialise. So very quickly you can become isolated and lonely.
What would you say are the main priorities for the MS community over the next few months and coming out the pandemic?
Making sure that some of the positive measures that have been put in place over the last year or so are here to stay. For example, flexible working, working from home and telemedicine. Also, what lessons can we learn from the vaccine development? Where can we implement things that could speed things up in MS research?
Moving into the future I think that mental health is going to become increasingly important. We need to make sure that the community has got the support that it needs, because even as we're moving out lockdown, there is still a lot of anxiety. Everybody has had different challenges, so we need to make sure that they feel supported.
How do you explain to somebody whose first language isn’t English what MS is? I don't know if there is a word for myelin in Punjabi, so how do I explain that to my relatives?
Can you tell us about your work with Asian MS? Why is it important to have an MS group specifically focused on Asian people with MS?
I've been involved in Asian MS for over 10 years, and it was already running way before I joined. It falls under the umbrella of the MS Society. We are a national support group which is there to provide culturally sensitive support and information to people in the Asian community who are affected by MS. We aim to raise awareness about the condition, and in doing so we try and help reduce some of the stigma and the prejudice that is attached to living with a long term condition and/ or disability.
People have said to me, ‘Why do the Asians need their own support group?’ It's because there are some very culturally specific issues that have to be addressed. For example, we need information in various languages. How do you explain to somebody whose first language isn’t English what MS is? I don't know if there is a word for myelin in Punjabi, so how do I explain that to my relatives?
Then there's other culturally specific things that can impact the reactions within the wider community or the extended family when somebody is diagnosed. People often question whether it means that you won’t be able to get married or have children. People have said to me, ‘You have MS because of karma. You must have done something bad.’
You need to have a group that is tackling these issues from within, because whilst it‘s very hurtful, I understand why they're saying that. I understand the importance of religion, the importance of marriage and family. I also understand that there is there is a lack of education and awareness around MS. MS isn't like diabetes and heart disease which is very prevalent in the Asian community. At one point MS was called a Caucasian disease, I know people who were told that it can't be MS because you are Asian.
I spoke to a GP who’s black herself, she said that during medical school, when they were learning about MS, they were told to look out for young white females presenting with eye symptoms.
I really want there to be more and better awareness about what MS is, how it affects people, particularly the hidden symptoms.
It needs to be understood by people outside of the Asian community, that it's not about us having a special group, it's about us being able to provide support in a way that a non-Asian group wouldn’t be able to, because they don't fully understand the issues that are in play. We don't exclude non-Asians. All we say is if you want to be involved with Asian MS and our work, then you need to understand why we exist. We’re not some exclusive club, it's not that at all.
One final question. What are your hopes for the future?
The way that treatment development is going is providing exciting prospects for the MS community. I really want there to be more and better awareness about what MS is, how it affects people, particularly the hidden symptoms. I believe that unless people fully understand what you're going through, they won't be able to offer the right kind of support.
I've been diagnosed now for 13 years, and in just those 13 years, I've seen huge progress. I'd like to think, that over the next 13 years, who knows what progress might be made?
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