When you become chronically ill, you quickly realise just how significant the small things can be. An unexpected card through the post, your favourite kind of weather, a marathon of your favourite TV show, a text from a friend asking how you are: all these little things can have the power to completely turn your day around. Even on the more difficult days, it might only take a small nudge to remind you that you can do this. It was this concept that led me to the idea of Spoonie Survival Kits. ‘Spoonie’ being the slang term for somebody with a chronic illness, the Kits are ‘little bags of happiness’ that aim to remind people that they’re not alone, and that somebody is thinking of them.
During my own early days of chronic illness, I couldn’t help but notice what a lack of support there was for people like me. There are hundreds of programmes and schemes for teens and young adults in hospitals, which are absolutely wonderful and play a much-needed supportive role in improving patients’ quality of life. But what about the thousands of patients at home, hidden behind closed doors, some of whom are too severely unwell to tolerate even being in hospital? I wanted to let these people know that they hadn’t been forgotten, and I wanted to do so in a way that raised vital money and awareness for the incredible charities that support them.
Spoonie Survival Kits officially began in 2015, as a teeny tiny fundraising project I experimented with during my university holidays. I made twenty random happiness bags, sold them online, and donated the sales money to charity. I was genuinely shocked by the support and backing my idea received from the chronic illness community, and within months found myself running a non-profit fundraising project, mostly from my bed. We were making hundreds and hundreds of kits as and when we could, donating 75% of sales money to charity and using 25% to cover the costs of running the project. However, the demand for the kits and my own chronic ill health meant that approaching the project in this way was definitely not sustainable, especially with me being too unwell to fundraise as frequently as I would like to.
Fast forward to 2017, where Spoonie Survival Kits has undergone its biggest reform to date, to help us cope with this increasing demand in a more appropriate way. We’re now a fundraising social enterprise, run more similarly to a small business, but still with advocacy and acts of kindness at our core. We now create kits specifically tailored to specific conditions and symptoms, and 50% of all sales money is donated to charity. The remaining 50% is used to cover the costs of running the project, and the hope is to one day create more structured volunteering and paid employment opportunities for other chronically ill people. I do not pay myself a wage, however my parents and friends have invested a LOT of time, energy and money in getting this project on its feet when I wasn’t well enough to, and I would love to be able to thank them properly for this.
I’m beyond grateful for what this little project has grown to become and what we’ve achieved so far. It’s been incredibly humbling to see patients all over the world, even those so severely ill that they cannot leave their beds, come forward to ask what they can do to help. I’ve found that many people with chronic illnesses are too unwell to work or study themselves, but they do want to use the capabilities they have to volunteer. I’m currently looking for ways of highlighting the work of my volunteers and showing how appreciative I am of their hard work: if you are a business or enterprise, or even an individual, who would like to reward or support our fabulous volunteers, please do get in touch!
It can be immensely difficult to find appropriate opportunities for those with fluctuating conditions (believe me, I’ve tried!), and so Spoonie Survival Kits offer flexible roles that can be pursued remotely with no time constraints, stress or pressure. Not only does the enterprise benefit from having such talented, kindhearted people involved, but it adds a special touch to our kits: our recipients are often so pleased to know that their Kit contains items made especially for people with chronic illnesses, by those in similar situations. I’m so immensely grateful to everybody who’s ever worked on the project, the businesses who have donated products, the individuals who have donated money or resources, and those who have simply placed an order and spread the word about us: I truly couldn’t do it without you.
Spoonie Survival Kits has been a game-changer for me personally: giving me back my sense of purpose and a goal at a time where my physical health made me feel, to be honest, pretty useless. To date, we’ve raised thousands of pounds for a whole range of charities (see our social media for our total raised and our current chosen charity!), released our charity book Dear Chronic Illness, been nominated and shortlisted for a prestigious award, featured in various magazines and online publications, and most importantly, raised awareness of debilitating chronic illnesses. I really hope that in the process, we’ve managed to make some people smile as well.
I could continue wittering on all day, but I’d better leave it here for now. I’d just like to say a heartfelt thank you so much for your interest in our story so far: I cannot wait to see what the future holds for us, and I’d love for you to become a part of our journey too. Please do have a look around our website, have a browse of our Etsy page, get in touch if you’d like to help out, and have a fabulous day!
Love, hugs and an abundance of spoons,
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