If you are unfamiliar with the term “spoonie,” it refers to an article by Christine Miserandino called The Spoon Theory, in which she describes explaining to a friend what it is like to live with debilitating fatigue. Her spoons analogy has been taken up by many who live with chronic fatigue, whatever its underlying nature or diagnostic label.
Teresita Bauer is a spoonie who, in her own words, lives life to the fullest. She blogs about lifestyle issues for chronic disease patients. In her first guest post for us, she talks about her experience within the online spoonie community.
Spoonies Online: Friends in Need … but Also Friends Indeed?
The online community of spoonies is a great source of support and information. Have you ever found a friend there? Great! However, have you ever been hurt by someone online, someone you did not even know? Some people have a thick skin. Unfortunately, spoonies tend to be more vulnerable.
Obviously, the spoonie online community offers lots of advantages. You can find support, information, motivation, practical tips and advice there. You meet fellow warriors who are fighting a similar battle. Other spoonies will understand what you are going through. Not necessarily because they care about you, but because they are experiencing the same. You will never walk alone – or lie there alone, if you are bedridden.
On the other hand, online communication is more conflict-prone than offline chats are. Anonymity on the internet brings about behavior which would otherwise be considered socially unacceptable. Most social media users tend to be more impetuous and straightforward. The lack of nonverbal cues and the different possibilities of interpreting written statements add fuel to the fire.
It is one thing to understand these mechanisms and it is quite another to be able to deal with them. I have been hurt. Not once, not twice, but many times. Knowing that sharing my chronic disease experiences with other persons is risky, I have learnt to take precautionary measures.
I am online for advice and help. It should make me feel better, not worse. If it makes me feel bad, it’s time to turn my computer off. I clarify a misunderstanding once, however, I refuse getting into endless discussions. I am always aware that those online friendships which are deepening quickly can rapidly go up in smoke as well.
I rely on people who are there for me; day by day. Yet I select them carefully. Online and offline.
About the Author
Teresita Bauer was diagnosed with leukemia two years ago during her last pregnancy. She also suffers from asthma and depression. She has decided to live life to the fullest and wants to help others to do so as well. She blogs at www.lifeisanoption.com.