26-27 - PATIENT EXPERIENCE: Fashion freedom

For those who have not experienced life with a chronic condition, it can be hard to comprehend the far-reaching impact on a person’s daily life. To effectively support these communities, care must extend beyond conventional management and across the multifaceted reality of a patient’s life.

Of course, improving diagnosis times and furthering treatment options are important, but a chronic condition is with you for life – and life is about more than just managing your symptoms, it’s about the things which many people take for granted: seeing friends, starting a family, progressing your career, enjoying your relationships and feeling confident.

Unfortunately, conventional care too often falls short of supporting people across these aspects of daily living, which I am all too aware of as a young person diagnosed with a chronic condition in my early 20s. Because of this, I’m delighted to see a company like Galapagos Biotech go the extra mile and take a truly holistic approach to patient support.

For over two years, pharma company Galapagos has been working in partnership with The National Rheumatoid Arthritis Society (NRAS) on the ‘We R.A. Priority’ campaign to offer insights on areas that really matter to the Rheumatoid Arthritis (RA) community – from sex and socialising, to motherhood and technology. Through sharing first-hand patient experience, as well as expert advice, We R.A. Priority aims to show that, when RA is treated as a priority by the whole of society, the impact can be truly life-changing.

One area where diversity and inclusion are rarely treated as a priority is the fashion industry. Having worked in fashion as a garment technologist for over 15 years, I have first-hand experience of how little consideration most brands give to how clothing works for people with different needs.

The lack of inclusivity within the industry workforce means there is no voice for the people who need their clothing to adapt to their daily reality. Even as I began to develop symptoms and become chronically unwell, it never crossed my mind that my clothes were failing to adjust to my new needs.

For three years I battled an unexplained array of symptoms including severe pain and fatigue, all while trying to keep the same lifestyle I was used to, in clothes that felt familiar, but ultimately no longer worked for me. One morning, after countless doctor visits and still no answers for my ‘mysterious’ symptoms, I woke up feeling more unwell than ever before. In a bid to make myself feel better, I put on my favourite work dress and heels, gritting my teeth in the process. Later that day, I found myself in hospital after my undiagnosed stomach ulcer had burst.

It was a few years later, during another ten-day hospital stay, that I realised some people don’t have the option to wear the clothes that make them look and feel great. With limited entertainment in the hospital ward, I quickly befriended a fellow patient, a woman who had beaten cancer but been left with multiple other conditions as a result. I noticed that, even in loose-fitting clothes, my new friend often had to remove items and expose herself to access her stoma, arm lines and chest port.

When I asked her about it, she explained she would love to get ‘dressed-up’ in clothes that made her feel more herself and confident, but was restricted to pyjamas and lounge wear, since other clothes simply wouldn’t adapt to her needs. I thought, there must be something out there for her – there must be a better option – but Google returned few results.

So, I decided to make one – Unhidden Clothing, my adaptive fashion brand that provides universal design for all. We produce sustainable clothing that has not been obviously adapted and does not forgo style for accessibility.

It has since been awarded ‘winner’ in the ‘Business for Good’ category at The Independent Awards 2021 and is the first disabled-owned and universal fashion brand to become a member of the British Fashion Council, most recently displaying our unique styles during our own show at London Fashion Week.

Having advocated for universal design in fashion for years, I was delighted to have my work recognised and to be invited as a ‘fashion expert’ to help curate a We R.A. Priority Fashion Style Guide to help those living with RA learn that ‘functional’ doesn’t have to equal ‘frumpy’.

Before we could start curating the style guide, it was important to hear directly from the RA community about their biggest challenges when it comes to dressing and fashion. Through the close working relationship between Galapagos and National Rheumatoid Arthritis Society (NRAS), we were able to meet with a number of NRAS members to gain first-hand insights into life with RA.

I built on my knowledge that RA can cause intense pain, fatigue and, if not treated appropriately, irreversible joint damage and disability. Many of those who live with the condition experience swelling and stiffness at their joints, limiting their mobility and dexterity. Often these symptoms start in smaller joints of the feet and the hands, making it difficult to tie a lace, fasten a button or close a small zip.

After hearing about what doesn’t work for their condition, fellow fashion expert David Evans, joined me to find styles that could work with, or around, a person’s condition. The challenge with finding adaptive clothing is that, historically, much of what is available is obviously ‘adapted’, often aimed at an older audience and deemed ‘unstylish’.

There are a few brands – like Unhidden Clothing – which are paving the way to stylish, adaptive fashion; however, these are exceptions and cannot always be affordable. That’s why I felt it was important to also include ‘accidentally adaptive’ options, which are ‘standard’ styles that can work for different needs. To help people better spot these accidentally adaptive items, the We R.A Priority guide not only includes outfit inspiration of on-trend items that can work with a person’s condition, but also provide advice on what materials, cuts, fastenings and styles to look out for and avoid when shopping.

Through the style guide, we hope to equip the RA community with knowledge to help them overcome some of the daily challenges they face. Everyone deserves to look and feel great and hopefully this guide will help some people get back to expressing their individual style and boosting their self-confidence through their clothing choices.

Communities like these need to be given a platform to speak from and We R.A. Priority does just that. By maintaining conversations in this space, this campaign helps raise awareness of how people with chronic conditions and disabilities, like my own or RA, are neglected across many facets of life, not just fashion.

By working in collaborative ways across a range of industries, pharmaceutical companies such as Galapagos have the potential to further their support of patient communities in new and innovative ways.

Fashioning freedom