Many people have limited emotional and physical energy because of chronic illness, pain, and disability. The #SpoonieSpeak chat is just for them! Read more about Thrive's participation below, and see how you can join in the conversation.
Erin Hawley of Easterseals Thrive co-hosted the #SpoonieSpeak chat on Friday, May 13, 2016. The topic was the importance of social media and online community for spoonies; seeing so many share their stories was amazingly thought-provoking, inspiring, and empowering. Don't know what a spoonie is? Just read our explanation, then check out the chat recap directly below!
What is #SpoonieSpeak?
Started by Tania Jayne, #SpoonieSpeak is a hashtag and Twitter chat that builds an online community for individuals living with chronic illness and/or disability. It is specifically for spoonies, and created around the "spoon theory," a term coined by Christine Miserandino. Basically, spoons are a metaphor for physical and emotional energy; those with illness and disability have limited energy (or "spoons") to perform tasks, often leaving us drained at the end of the day. Low spoons means we sometimes can't get out of bed. Tania wanted to host the chat on Friday night, as that's when she believes spoonies tend to feel excluded and isolated the most.
You can still join in the chat! Send your answers to the questions below by tweeting @SpoonieSpeak or @ability2thrive on Twitter - make sure to use the #SpoonieSpeak hashtag so we don't miss what you have to say.
Q1: Where are you tweeting from, and what brings you to #SpoonieSpeak?
Q2: How have social media & online communities helped with your illness/disability? #SpoonieSpeak
Q3: Where do you go online to get support? Where would you like to see more support? #SpoonieSpeak
Q4: Were you nervous about sharing your illness & symptoms w/ others online? Why or why not? #SpoonieSpeak
Q5: What are some tips you would give to other spoonies about social media and online community? #SpoonieSpeak
Q6: Is there anything negative or lacking in online communities compared to offline ones? #SpoonieSpeak
Q7: What is the hardest thing about online communities? What about the best thing? #SpoonieSpeak
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