Most practitioners will say the way to live with Ehlers-Danlos syndrome (EDS) is through management, physio, lifestyle and adaptations. Perhaps what we also need is a moment that celebrates who we are without focusing on our limitations.
A few months ago, I visited Candid Studios for a self-portrait session wearing kinesiology tape (KT tape), as part of a journey to embrace my hypermobile Ehlers-Danlos syndrome (hEDS). The experience of seeing myself looking happy, confident, and vibrant while wearing my KT tape was so meaningful that I felt compelled to share it with the wider community. From a single post on TikTok and 200 applications later, I organized my first-ever mobility aids photoshoot for people with hEDS.
The event created a space where individuals with EDS could capture self-portraits that authentically reflect their journeys, focusing on incorporating their mobility aids in ways that made them feel proud and confident. It was a place where participants could celebrate who they are, highlighting the courage and resilience it takes to navigate life with a chronic condition.
Mental health plays a significant role in Ehlers-Danlos syndrome. One day you could be feeling really fit and able, and the next you could be bed-bound with very little explanation as to why. Your joints could feel really strong one day, and the next could be dislocating from simply putting on laundry. This unpredictability can really take a toll on emotional well-being. That’s where I wanted to create an afternoon that just made us feel good, made us laugh, and allowed us to share our experiences.
One attendee shared, “From the moment everyone came together in the studio, all complete strangers meeting for the first time, I couldn’t stop smiling! It felt so incredibly comforting to be in a space filled with people who just get it, who understand what you are going through and can offer advice and support for each other.”
EDS is often considered a hidden disability, as many of its symptoms and challenges are not immediately visible to others. I’m regularly met with doubtful looks and patronising remarks like ‘But you don’t look disabled’ or ‘Can you give up your seat for this elderly lady?’ It’s an everyday challenge that comes with a sense of shame, making me question whether I deserve the extra help when I need it, even though deep down, I know that I do.
For the first time since my diagnosis, I was surrounded by others who felt exactly the same and were building up each other’s confidence and celebrating our condition. Another attendee shared, “I was so nervous going into this as an ambulatory wheelchair user, and I debated so much beforehand about whether I should go ahead with it, or if I even deserved to be there. But seeing everyone else instantly made me feel like I belonged and I’m so happy with how it went. The whole point was to show off our mobility aids!”Another reflected that finding a community that understands the nuances of living with EDS feels like discovering a safe island in the middle of an endless ocean.
“The chronic illness community is more than just a support system; it’s a source of strength, knowledge, and shared joy. It’s a space where people can be real about both their triumphs and challenges, whether it’s navigating a flare-up, dealing with a healthcare system that doesn’t always listen, or celebrating those small daily victories.”
Moving forward, my goal is to make these experiences more accessible. I am looking for funding and support to continue hosting similar events in the future, allowing more people to participate. Given the positive feedback we received, I’m inspired to grow this concept into something sustainable and widely available for others who could benefit from the same experience.
Perhaps a huge part of EDS is seeing others with the same condition, smile and laugh. On the days when the spoons run out and the fatigue is too much. I look at my photos and remind myself of the warrior I am – and that is priceless. – Georgina Fox
