Finding and Building Community
Hi everyone! I hope December is treating you well so far!
I recently started talking with an SMA patient (type II) who lives in Singapore. She’s a few years younger than me, but overall we have pretty similar stories, so it’s been fun comparing symptoms and the general “experience” of living with a disability.
The other day she asked me if I go out very much. She mentioned that pain and fatigue have really kept her from leaving the house of late, and I told her that, due to chronic tension headaches, I’ve had to scale back my outings as well. The whole conversation got me thinking about community and how we deal with, in a very real sense, being “cut off” from the rest of the world.
Personally, I often go on lockdown during the winter to keep from getting sick. I go out occasionally, but I still end up feeling disconnected. I’m lucky in that I have a very robust community online, but it doesn’t feel the same as actually being in the same room with someone. Winters are pretty hard on me in that respect.
I’m curious as to how you go about finding and building community. Do you leave the house often, or do you prefer to stay at home? How does that affect your social life, if at all?