26-27 - PATIENT EXPERIENCE: Life changer

Despite affecting over 400,000 people in the UK, rheumatoid arthritis (RA) is still poorly understood by most. For many, the word ‘arthritis’ provokes an image of a frail, elderly person hobbling around on stiff joints, caused by a lifetime of wear and tear.

This is actually a characterisation of the more common condition, osteoarthritis, which is entirely different from RA, which is an autoimmune condition that can strike at any age. That might leave you asking, what is RA and how does it affect somebody’s life?

Well, while there are common symptoms and challenges, living with RA is a unique experience for each individual. This is my story.

Four days before my 20th birthday, I was told I had RA. Imagine that you’ve been waiting for someone to explain the pain and struggles you’ve been going through and then, when you receive that diagnosis, the world stops.

In that moment you need to know you are not alone – that there are other people out there, just like you, going through the same thing. But that is the last thing I felt. As a 19-year-old British woman from the South Asian community I did not fit societal expectations of someone with arthritis and struggled to come across any evidence that there was anyone else ‘like me’ going through the same thing.

I had been looking forward to my birthday for months, planning to take full advantage of my new-found freedom at university and spend the night out partying with friends. But when the day came, I could barely muster the strength to get out of bed, let alone go to a nightclub. I knew my body couldn’t handle queuing in the cold, endless stairs and dancing all night with nowhere to sit, so I resigned myself to a quiet night in.

A part of me hoped that just one or two friends might stay behind to sit with me, watch a film and celebrate my birthday over a cup of tea. I quickly discovered that would not be the case as I watched my so-called friends bustling between rooms, borrowing tops and hurriedly doing their make-up – their laughter echoing down the corridor.

The door swung closed behind them and my tears began immediately – I had never felt so alone. As I sobbed down the phone, begging my mum to come and pick me up, I felt my new life full of independence and opportunities slipping through my fingers. At that point my social life had become non-existent and, coupled with being unable to attend university and the fear of never graduating with a degree. I was left feeling hopeless.

I struggled to comprehend the idea that RA is something that would be with me for life – how could I carry on this way? I turned to the internet and resources, desperate to find someone out there that had been in my position but was now doing fine – I had little luck finding anyone remotely relatable.

Becoming involved with The National Rheumatoid Arthritis Society (NRAS) was a crucial part of this process and it was among this community that I began to build the confidence to start taking control of my life. I wanted others to know they could do the same and for the first time was feeling empowered to share my story. I did this by setting up my own non-profit organisation – Chronically Brown – and becoming involved with campaigning group We R.A. Priority.

When diagnosed you are given resources with lots of practical information – ways to help manage symptoms and prepare for specialist appointments. While this essential and important advice can help you physically deal with your RA, from my experience it is hearing from real people living with RA, who have overcome their own challenges, which really helps you deal with the mental impact of your diagnosis.

Unfortunately, stigma still exists around many conditions and RA is no exception. These feelings can be exacerbated by cultural sensitivities, as I became aware of when members of my extended South Asian family struggled to accept my condition. I realised that the attitudes towards disabilities among South Asians – particularly older generations – lacked understanding.

I wanted to spread awareness and help become a catalyst for change, so I set up Chronically Brown to start conversations and educate the South Asian community about conditions like mine. Over the past two years, Chronically Brown has grown into a community of strong, inspiring and powerful South Asian people that unite over the common challenges of living with disability and the associated stigma.

Most recently, Chronically Brown has been running workshops to engage people of all ages in positive conversations around disability. A recent workshop specifically invited Sikh- and Punjabi-speaking elders, aged 55 years and older, to participate in a discussion where they felt able to ask questions that they may not have felt comfortable asking previously.

My work with Chronically Brown has provided an inner strength which has pulled me from the lowest point in my life and taken me to a place filled with excitement for the future. Earlier this year I was shortlisted for the ‘Campaigner of the Year’ award from British Diversity Awards, an accolade that would have been unimaginable when I sat in my university room just four years ago.

Generational and cultural differences both massively impact where people go for information and support, and it is therefore crucial to explore diverse channels of communication. In the last two years younger generations have moved away from even conventional social media to new platforms like TikTok.

It can be daunting for campaigns to move into new territories where there are many unknowns and no examples of best practice, particularly in the sensitive space of healthcare but We R.A. Priority has done just that.

It is, however, equally important not to neglect other channels that are still popular forms of communication for different groups. For example, the elderly South Asian population rely on YouTube and Facebook for the majority of their online information, so Chronically Brown utilises these channels for live video workshops and extended video content.

There are so many factors at play which dictate someone’s journey. You not are not only controlled by your physical symptoms and own feelings, but are bombarded from all angles by the attitudes of family, the understanding of friends and misconceptions from the public. To truly support people with RA – or any other chronic condition – it is important to consider a holistic approach to care that addresses those multitude of factors.

There is still much to do and think about, but I am so proud to be contributing to educating the public, challenging perceptions and ultimately ensuring that no one navigates this path alone.