Anisha Gangotra has lived with Colitis since 2008, aged 24. This year, she has reached the finals of the international 9th Annual WEGO Health Awards for patient leaders. She shares her story of the life-changing events that led to her advocacy work and award nomination.
Where it all began
I experienced my first Colitis symptoms following a holiday abroad. I noticed blood in my poo. I knew something wasn’t right and went straight to my GP, which kick-started my journey of living with a chronic illness. Over two years, I had many appointments, saw different doctors at different hospitals, had a difficult colonoscopy whilst in a flare, and wasn’t any closer to understanding what was happening in my body. In 2010, I came under the care of my current gastroenterologist and was finally given an ‘official’ diagnosis. This brought with it a sense of relief and hope for the future.
Life rarely goes to plan though. In 2011, I was the victim of a non-fault, high speed car accident along a dual carriageway. I can still see it clearly, like something out of an action movie - flying cars and crushing metal. The emergency services couldn’t believe I’d survived the crash. I had physical injuries and suffered with Post-Traumatic Stress Disorder (PTSD), depression and anxiety for the following 5 years.
I’d spent the previous 3 years coming to terms with the physical and mental health challenges of living with Colitis. Now I was faced with this too.
My Colitis wasn’t well-controlled, I was managing constant flares alongside chronic pain and mental health issues from the accident. I faced some truly dark times.
A journey of a thousand miles begins with a single step
These two life-changing events affected everything – home-life, work, friendships, relationships, socialising and hobbies. I’d played hockey from a young age and it was my main form of exercise and stress relief. I’d found it increasingly difficult to continue playing when my Colitis wasn’t under control as I was running to the bathroom up to 20 times a day and struggling to eat and sleep. So, I had decided to return to dancing instead. This felt more manageable and started to help. But that was when the car accident happened.
So what to do now? I could barely get out of bed by myself, had constant pain and a limited range of movement. As I worked through my rehab over months and years, literally step by step, I decided to try a Zumba class. I’ve never looked back. I did what I could, based on my injuries, and slowly regained strength and flexibility.
I was struggling with the PTSD, depression and anxiety but attending classes, gave me a community - a community that loved to dance their cares away. It was exactly what I needed.
My experience became my inspiration. My life’s path completely changed. I became a licensed Zumba instructor in 2014 and subsequently gained an Inclusive Dance qualification with ParaDance UK. I wanted to provide a safe space for all, including those with disabilities, long-term conditions and mental health issues to enjoy the physical and mental benefits of dance. I have students with cerebral palsy, multiple sclerosis, lung conditions, depression and amputees, all dancing alongside those with no physical or mental health conditions. Everyone does what they feel comfortable. There’s no pressure or judgement.
It’s allowed me to stay active in a manageable way, particularly as fatigue is one of my most difficult Colitis symptoms to manage. I’ve been teaching online during the coronavirus pandemic. It’s provided a space to have an open dialogue about the issues we’re facing and share our personal challenges. That in itself has been truly powerful.
We dance, sweat and, most importantly, have fun!
I used to work in business for consumer goods companies but for the past two and a half years I’ve been working in the Mental Health Service, specialising in mental health and employment, supporting people with these issues. It might be there was a specific issue at work, they were off sick or unemployed. I now shape the service itself, work with local employers and manage a team of advisors who work with service users. It’s a truly rewarding job and it’s my personal challenges that led me here. But I wanted to do more. I have so much experience to share and I didn’t want others living with chronic illness or mental health issues to feel as alone as I did. No-one should experience stigma and discrimination, or struggle to access the right support and treatment at the right time. That’s how I got into patient advocacy. I’ve told my story at conferences, on social media, in blogs, on the radio and on television, in a bid to reduce stigma, particularly as a woman of South Asian descent where discrimination and ignorance continue to exist.
I’ve also used dance to bring people together, increase awareness and raise funds. I’ve done themed classes to support Crohn’s & Colitis UK, inclusive dance warm-ups at big fundraisers and dance videos for charities like the MS Society, Sue Ryder and MS Trust.
My advocacy work led to my nomination for the 9th Annual WEGO Health Awards LINK in the ‘Rookie of the Year’ category. WEGO Health recognises patient advocates who are leading the way in online health communities across 16 categories and across all conditions, platforms and countries. It was a huge surprise to be nominated for this award and I’m honoured to be among the 13,000 nominees from across the globe, who are all doing amazing advocacy work. I’m also delighted to be in the final six for this category.
Whilst proress has been made, there is still a long way to go.
I believe sharing my story and using my experience to work with healthcare professionals, charities, pharmaceuticals, patient organisations and the media, can challenge society’s views of those living with invisible conditions. This, in turn, can improve infrastructure to better support us, shape the future of healthcare by the people who use it, and we can continue to dance whilst doing it!