Spoonie Living App: Visualising Chronic Illness

Hi there,

Creatively expressing yourself with photos has long been popular on social media, but how do we express our health (and illness) with Instagram and other apps? As part of a student project, the Spoonie Living app gives you colourful and funky meme stickers to enable you to creatively express your health and illness which you can then share via Instagram, Twitter or Facebook.

Want to take part?
Download the app: Spoonie Living App (iOS)
Fill in short questionnaire (3mins): Mini Survey now closed.

Here’s more info:
The Spoonie Living app is a small project put together by PhD student Sam Martin. Sam has Coeliac Disease, IBS and Arthritis, and is writing a thesis about how people with chronic illnesses such as Coeliac Disease, Arthritis, IBS, Chronic Pain and ME/CFS use social media to share experiences of their illness and find information. The Spoonie Living app was created to see if the use of illness and dietary related stickers would help individuals creatively express themselves in a slightly different way to general Meme images found on the internet. It is hoped that using stickers will help towards people creatively managing their illnesses on a daily basis.

But what’s a ‘Spoonie’?
The term ‘Spoonie’ was invented by Christin Miserandino to describe what it’s like to have an invisible illness, like Asthma, IBS, Celiac Disease, Arthritis and more. ‘Spoons’ are used to measure and describe how someone would manage the amount of energy they feel they have left to complete daily tasks when not feeling 100%. The hashtag #spoonie is really popular, and has been used just over 500,000 times on Instagram alone – it is mainly used by people with hidden illnesses to talk about their experiences daily. The aim of Spoonie Living app is to add to this experience with the use of creative stickers and see if this has a helpful/positive effect on people’s well-being.

Stickers(!)
Stickers in the app have been designed to help you quickly express how you’re feeling on a good or a bad day, and are illness (e.g. Spoonie) and diet specific (e.g. Gluten Free, Lactose Free, Vegetarian, Fructose Free). Please feel free to DM me on Twitter/Instagram with any suggestions for new stickers (@spoonielivingapp), & I’ll be happy to add some new ones (and name them after you)! I can put all submissions on Instagram, and the most popular will feature in the next app update!

Privacy
This is a PhD project right? So what happens to your data?

1) I can only see your data if you share it with me (seriously, read more legal stuff below, and in the app). If you’d like to take part in this research, please very kindly use the hashtag #spoonielivingapp when you post through the app to Instagram or Facebook. Any awesome photos with hashtag #spoonielivingapp will be featured (with your permission) on the app’s Instagram page: Instagram.com/spoonielivingapp or Facebook page: Facebook.com/spoonielivingapp. That way I get to see how creative you’ve been in using the app!

2) But what about the rest of your data – is it private (I hear you ask)?
The Spoonie Living app doesn’t collect any personal information, and cannot track your location, you, or even the type of stickers you use, or whether you post to Instagram, Facebook, Twitter or anywhere else. The only data seen is if you opt to make a user account on the app, and post your photo to the Wall of Fame. Even here, no personal information is collected, outside of the images you post. You can use any username you want, your email address is not harvested, can be deleted by you, and can only be used by you to remind yourself of forgotten password details. The only other information collected is standard app information such as how many downloads have been made via the app store.

About Sam(!)
You can find more about me and my research at: DigitalCoeliac.com or, if you want to follow my photos on how I figure out how to manage symptoms of Celiac Disease etc. & write 80k words(!) of a thesis, follow me on Instagram @gray373

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