As a young girl I spent a lot of time daydreaming about the future, my future – and how perfect everything was going to be ‘by then’. Watching cheesy American teen movies about the toils of high school students for rich, white, and straight cis women gave me a highly unrealistic expectation of what my life was to be, what my friends would be like, who I would fall in love with, and the dress I would wear to prom. But never within these magical, embellished, and polished daydreams did I ever imagine a future of chronic and mental illness. Who does right?
Ironically 5 months into my teenage years, I had no choice but to say goodbye to the life I thought I had, and the future I expected to have. This in turn meant I would miss out on many opportunities other teens my age were accessing; being able to go on school trips, walking around the campus, attending extra curriculars, partaking in sports. After 3 years of debilitating illness, I was in a state of isolation and mental self preservation. My world had crumbled around me and I had no interest in revisiting the environment which reminded me of what I could no longer do. So the sparkly glitz and glamour of high school prom was replaced with a medication fuelled night of bedrest.
Fast forward to present day, I have made peace with the fact my life cannot be that of an able bodied person, and my abilities will differ from those of others with the same conditions as me. Throughout this healing process I have been honoured and frankly, blessed, to have connected and made friends with many individuals from different walks of life with whom I wouldn’t have had the true pleasure of meeting. Many of these wonderful friends are fellow chronic illness warriors who I met within the Instagram community. Having these friendship groups of people who understand chronic illness from a first hand experience is so beneficial – and in doing so I have never felt so encouraged, supported, and loved by so many. This sense of community is vital when our connections with the ‘real world’ are restricted because of the debilitating nature of our conditions – it has also provided many unique opportunities; one of which I was involved with as recent as a few days ago.
After scrolling through my Instagram feed I noticed a post from the Riley App advertising an upcoming event which took place on May 14th – “Pandemic Prom” it read. But first things first, what is the Riley App?
It’s an app for patients to connect with individuals with the same conditions as they have, to form personal connections and a supportive network of people who ‘get it’.
“Within our mobile app we have created an environment of sharing experiences and hardships where we don’t let our disabilities and health conditions define us.”Riley App
Their pandemic prom was aimed to offer the virtual prom experience for chronic illness warriors who never got to go to prom as a result of their health, or because of quarantine.
Upon seeing this exciting news I messaged my friend Laura – who I met at a chronic illness photoshoot earlier this year, as our mutual love for Doja Cat and general interests are very much aligned. The week leading up to prom was very stressful – thankfully nothing prom related! But the week was rounded off nicely with a modified and exciting time spent with a much loved friend, and meeting like-minded and truly beautiful fellow spoonies. We had a chatty ‘get to know me’ introduction in which we gave our pronouns, diagnosis, and a fun fact about ourselves – followed by a photo opportunity, dance party, and charades. My darling mum also acted as my “prosecco waitress” (her words), and was getting into it just as much as I was!
Like many parents, my mum has witnessed my grief over the loss of opportunities would have otherwise had as an abled teenager, and has shared these same feelings, so to see her so enthusiastic about something as seemingly simple as an online prom, was very humbling. It was a further reminder of the extended effects of chronic illness in a widely inaccessible world. However thanks to the innovative ideas and the desire for more inclusivity – we are seeing organisations utilise the tools of social media to connect us, help empower us, and give us the ability to experience an altered version of things we couldn’t experience as a result of our conditions. It evoked feelings of empowerment, fulfillment, and will definitely serve as a tender memory, which I am joyous to share with you today.
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