Pippa's perspective: From chronic illness, to starting a non-profit

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

I have known Pippa since before she started her non-profit, always trying to put positivity into the world and never trying to teak from anyone else's glory. Pippa just does what Pippa dose, regardless of what's going on around her. I admire how she has managed to keep up with her full-time degree, as well as start a non-profit, all whilst battling several chronic illnesses including ME. Here Pippa is going to talk about that journey!

Acquiring a chronic illness in your early twenties is 100 per cent not ideal. Over the past two years, I’ve gone from being a healthy, active student and pre-professional dancer gallivanting through life, to becoming a medical mystery.

I first became unwell at the age of 15, but the past two years have seen me suffer a dramatic decrease in functioning, meaning my ME/CFS is now severe enough to significantly affect my quality of life. Explaining to people that no, it wasn’t a tragic accident and no, it isn’t amazing to stay in bed all day and no, I’m not on my Make-A-Wish Foundation wish every time I leave the house consumes a lot of energy. Meanwhile attempting to conduct trips out pushed in my wheelchair with housemates in heels, on cobbles, after cocktails, has been a battle in its own right, as has learning how to swallow medication while wearing red lipstick.

I’ve been so occupied with trying to keep up with student life while being disabled that it didn’t occur to me until recently that I’d somehow accidentally founded a non-profit movement in the process.

Spoonie Survival Kits began as a little bit of fundraising I decided to do during my university holidays. ‘Spoonie’ being the slang word for a chronic illness sufferer, the kits are little bags of happiness that aim to act as a pick-me-up on harder days. They contain crafts to do in bed, treats to eat and things to wear. They also include symbolic items to remind sufferers they’re not alone and somebody cares.

I made 20 of these kits originally and sold them online. I enjoyed doing it and was glad to raise a bit of money, but definitely wasn’t prepared for what happened next. People began asking when the next kits were coming, requesting kits for friends and asking what they could do to help. That was 10 months ago and the kits have been constantly in demand ever since.

This demand led to more and more kits being made, volunteers being hired an Etsy shop and online community being established, and my little bit of fundraising becoming a non-profit project. All the money made from sales goes straight back into good causes: 25 per cent is used to sustain the project and 75 per cent goes to a chronic illness charity, our current charity being Fibromyalgia Action UK.

The way things stand now, the project is achieving three things. We’re raising money for worthy causes, we’re helping to make sufferers smile and remind them they are more than their illness, and we’re now providing accessible volunteering opportunities too.

Many people with chronic illnesses may not be physically able to participate in paid employment, but they still want to make a meaningful difference to the world. I now have three of the most amazing volunteers: Lauren crafts bracelets and other cute bits for the Etsy store, Beth created our beautiful website and social media sites, and Nikki helps with administration, fundraising and more. The project also offer accessible, time pressure-free opportunities for crafty people with chronic illnesses and disabilities who want to make items for the kits or fundraise for us.

We have no funding for the long-term as we’re not eligible for grants or start-up bursaries, and due to the nature of my illness I cannot fundraise as much as I would like. We rely on the kindness of others and massively appreciate money donations, fundraising on our behalf and crafty people making items for the kits. We would love to have sponsorship from businesses one day, but for now I truly am grateful for the individual support we receive that helps us to keep things up and running.

When I first got ill, I definitely wouldn’t have believed it if someone told me I’d end up running a non-profit business from my bed. I’m not one of those people to preach that ‘everything happens for a reason’ or say ‘I’m so glad I got this illness’, but the fact that something so good has emerged from something so awful really is humbling.

You can find more information about us at our website www.spooniesurvivalkits.com or purchase a kit on Etsy www.etsy.com/uk/shop/spooniesurvivalkits - we have a limited number of M.E Awareness Kits on sale throughout May. If you’re a person with M.E who’d like to donate or volunteer, you can find us at spooniesurvivalkits@gmail.com or on Facebook, Twitter and Instagram.

Love, hugs and spoons x

Thanks so much to Pippa for writing this blog post, I have personally used Spoonie Survival Kits and think that they area wonderful non-profit! You can find Pippa at @sassyspoonie on Twitter and the same on Instagram.