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.