Trishna Bharadia, a Multiple Sclerosis(MS) patient for approximately 18 years, is a multi-award-winning patient advocate and engagement consultant. She collaborates with various stakeholders in the healthcare ecosystem and life sciences industry to amplify the patient voice across different sectors.
Her accolades include the MS Society Volunteer of the Year 2013, Woman of Achievement (Women of the Year Foundation) 2015, Points of Light Award (UK Prime Minister’s Office) 2018, and Asian Achievers Award “Woman of the Year” 2018. Bharadia owns The Spark Global, a patient engagement consultancy, and holds a position as a visiting lecturer in patient engagement at the Centre for Pharmaceutical Medicine Research at King’s College London University. Additionally, she has received an honorary membership from the Faculty of Pharmaceutical Medicine (Royal Colleges of Physicians) in recognition of her exceptional contributions to the life sciences industry.
Speaking with Asian Voice, she highlights the intense judgment and misconceptions about her condition within the Asian community, making it difficult for her to openly discuss her mental and physical health challenges.
Could you tell us about your experience with MS and its impact on your daily life?
I was diagnosed with MS in 2008 at 28. My initial symptoms began around 2004-2005 and were misdiagnosed as repetitive strain injury. By 2007, I experienced a loss of feeling on one side of my body, leading to a referral to a neurologist. Following various symptoms like fatigue, sensory issues, and poor temperature regulation, I received the MS diagnosis in May 2008.
Since then, I face daily challenges such as pain, muscle spasms, and bladder issues, with fatigue, bladder problems, and temperature regulation being the most impactful. I've adjusted my work, social life, and exercise routines, planning activities around my energy levels and the need for accessible bathrooms. MS significantly influences all aspects of my life, prompting my shift to self-employment, which allows me to manage my schedule based on my energy levels.
What would you say are the unique challenges you faced as a South Asian woman?
One of my primary challenges revolves around the shift in family roles due to my MS diagnosis. Expected to care for my parents in South Asian tradition, my illness complicated these norms. Cultural beliefs around karma added complexity, as some viewed my MS as divine retribution. This created a need to constantly explain and justify, making acceptance difficult.
Additionally, the lack of awareness about MS in the South Asian community posed hurdles. Explaining the illness in various languages, especially with terms lacking direct translations, added to the struggle. The burden of clarifying and justifying my condition, coupled with cultural stigmas and language barriers, made coping with my diagnosis particularly challenging.
How has cultural and societal influences affected your MS journey as a South Asian woman? Is it in any way, easier for men?
Within the South Asian community, cultural norms profoundly impact individuals managing long-term health conditions like MS. Expectations concerning marriage, children, stable employment, and family care become particularly challenging post-diagnosis, influencing the MS experience.
In the South Asian MS community, both men and women encounter arduous circumstances, albeit in differing ways. Men may encounter more societal acceptance if they leave their spouse post-MS diagnosis, especially if the wife is affected. Conversely, women face immense pressure from family and in-laws to oversee household and childcare duties, disregarding their health condition.
This strain often leads to concealing an MS diagnosis, fearing social stigma or being labelled unsuitable for marriage. When marriages dissolve due to MS-related disabilities, it's frequently the woman unable to fulfil societal expectations.
In what ways have you personally felt isolated due to the disease? And how has your culture added specific challenges to experiences of isolation?
Experiencing isolation due to MS has been two-fold. Within the Asian community, a lack of understanding about the condition, particularly its invisible symptoms like fatigue, led to missing crucial family events. This lack of comprehension added to the isolation. Additionally, the variable nature of MS-related fatigue wasn’t widely understood.
In the MS community, my distinct challenges as a South Asian with MS weren't entirely acknowledged. In discussions among non-Asian members about the cultural responsibility for elderly parents, there was a lack of comprehension. I didn't anticipate them to understand, being a very South Asian concept, but this lack of understanding left me feeling isolated. I wanted to relate to others with MS on these matters.
Changes in my social life, remote interactions, and battling stigma have increased the sense of isolation, demanding more energy and causing fatigue.
Are there any support groups or communities that you found particularly helpful in overcoming all of this isolation?
The MS Society established the Asian MS support group, initiated by two Asians who discovered they were both living with MS and were surprised to find someone else within the South Asian community experiencing the same challenges.
For around 14 years, I've been involved with this group that offers culturally sensitive support for South Asians affected by MS, including individuals with MS, caregivers, family members, or friends of those with MS. The group organises informative webinars, provides peer support, and offers information in various languages, even arranging interpretation services if needed. It serves as a safe space for the South Asian community to come together, addressing the unique challenges faced by those affected by MS.
Personally, being part of the Asian MS group has encouraged me to openly discuss my MS, aiming to reduce stigma, raise awareness, and support others in the community.
Can you share any positive or empowering moments or stories related to your journey?
In 2015, I joined Strictly Come Dancing, seizing the opportunity to raise MS awareness on a large stage and represent Asian individuals affected by this condition. While more progress is still needed, it sparked conversations and inspired families to discuss living with MS.
Speaking at 10 Downing Street, at a reception hosted by Samantha Cameron, was another empowering moment. Post-diagnosis, my advocacy journey has been transformative. Engaging with others, learning, and gaining skills profoundly shaped me. Despite MS challenges, I pursued my goals, profoundly influencing my personal and professional growth, shaping the individual I am today.
What advice or insights would you offer to others who are living with MS or those who've been affected?
Seeking support from family, organisations like the MS Trust, or local services significantly aids in managing conditions like MS. Avoid comparisons because each journey is unique. Educate yourself about the condition for confident navigation of challenges.
Informed discussions with healthcare providers empower shared decision-making. Even though MS is unpredictable, being part of healthcare decisions offers a sense of control. Abundant support is accessible, so don't handle it alone. Taking the initial step in seeking support makes a remarkable difference.
For more information and support on living with MS visit www.mstrust.org.uk and for information on Asian MS visit https://www.mssociety.org.uk/care-and-support/emotional-support/ms-support-groups/asian-ms
